sick girl speaks!

Pity: The Fool?

2011-08-16T22:39:00.000-07:00

During the time I was very sick and not expected to live another year, one of the most challenging parts of human interaction was the pity I saw on so many people's faces. From the strangers who spotted my oxygen tank and nasal cannula to the people who knew me and my story, there was no shortage of awkward conversations in which pity dripped through people's voices and eyes. This drove me mad. I couldn't quite put my finger on what was so annoying to me about this. Now I think I know why.

Currently, part of my work involves spending a good amount of time in hospitals and clinics. Recently, I was passing by a very sick looking patient and noted that my feelings for this patient were, in a word, odd. Society teaches me that, when I see someone who is suffering like this patient was suffering, I should feel sorry for them. The feeling I had was not this. I wondered if my experiences had made me hard or if I was a selfish person. I wondered if this reaction, or to be more accurate, lack of reaction, meant there was something wrong with me.

This led me back to thinking about pity and how it once was like nails on my soul's chalkboard. It hit me. Pity comes from a place of distance. From a place of looking down onto an experience that is not your own, beneath you and harder than your own. Pity is driving down dirt roads in third world countries seeing children beg for change with outstretched dirty hands. It is the emotion for another's suffering you can't relate to. It is how we feel when we think we will never have to know that kind of suffering.

What drove me crazy all those years ago was not that people cared. That, of course, was the beauty and the sweetness of the circumstance. What was disconcerting was that, when they spoke to me, they now saw something foreign. Something different than the person I was when I was well. In truth, of course, the person peering out from behind my eyes was unchanged by my physical decline. So why were they talking to me slowly and with high pitched voices? Why were they looking at me sideways and nodding slowly as if I was too fragile for a sarcastic joke? And then it hit me: what made me bonkers was that they looked at me and did not see themselves.

Pity is a fool. To pity is not to have compassion. When there is compassion there is the knowing that all human experiences are possible for any of us at any time. If I pity the homeless man, I am forgetting that I am one false move from that reality myself. If we pity the sick, we forget that will, too, will get sick and die. When I see patients I see myself. When I see grieving families I see myself. I do not feel pity because I know that this is an experience I will live again and again. It is simply not my time in the circle right now.

Pity is a fool. Next time we pity another, may we ask ourselves why we feel so distanced from that experience. May we find a way to the possibility that each experience is both unique and completely universal. May we find our compassion and pity the fool who pities another.

Pure Love and Loss

2011-06-23T19:39:00.000-07:00

Emily, my dog, had died of a brain tumor one month before I went looking for a new dog. The lack of dog-ness in the house was killing me and I had waited as long as I could stand it. I knew I wanted to rescue a female, adult, small greyhound. The rescue organization said they had one they thought would be good fit.

My friend and I arrived to see cages and cages of these majestic animals who had once ran for a living now waiting for the next chapter to begin. Many looked at us with hope as the volunteers pulled out Lola, the one they hand picked for me. Lola was a beautiful 8 year old female who had no interest in me whatsoever. I felt no connection to her and actually, she seemed to be giving me signals that she might bite me. I pulled out plenty of other dogs, changing my criteria: I looked at males, young dogs and big dogs. None of them felt right. None of them "clicked".

I kept asking about the blonde 11 year old female with the big brown eyes but was told she was spoken for. Right before I was about to leave in defeat, the owner came in and said the 11 year old was, in fact, up for adoption. When we took her out of the kennel, she stepped her graceful feet on the concrete floor and did something no other dog had done before her: she ran towards me (not the door), her head was up, her eyes were shining and her tail was wagging. Jen greeted me and it was immediate, pure love. Thanks to Jen, I do believe in love at first sight.

I took her home and our love grew. I had never known a kinder soul. I had never felt so connected to a dog. I never knew her presence in my life could provide such joy and peace. She became my rock, my anchor and the center of my universe. She went to work with me and I took her everywhere a big dog could go. When I left her home, I could hardly wait to see her again. When my car pulled into the parking spot outside my house, I bounced and smiled all the way to the door because my Jen was there and I couldn't wait to greet her. Our relationship was perfect. (Ok, she did pee on the carpet but with that kind of love, that seems hardly worth mentioning!)

Last week, I woke up before Jen. This was unusual because she usually got me up promptly at 7:30. It was 7:20. I was feeling rested and happy. We went outside for a walk at about 7:30. Jen did not walk with a leash. This gave her the opportunity to have few jogs here and there. Almost always, she ran home from her morning walk. That day was no exception. Before Jen got to the front door, however, she fell and screamed out in pain. She was in so much pain, in fact, that she bit me when I went to help her. She calmed down after a few minutes and I hoped she would get up and brush it off. She didn't. I knew what it was. I had seen it before with other dogs.

The next part of this story includes many details about how we got her up, got her in the car, and got her to the vet. These are not worth going over but, suffice to say, it was difficult and heartbreaking. Thank God for my neighbors and my two good friends who came to our rescue. During this time, Jen and I had some privacy and I begged her to not leave me. I couldn't imagine how I could live without her. I knew that was selfish and wrong to say but I also knew she would understand.

Upon getting to the hospital, my fears were confirmed. Jen had bone cancer. She hadn't fallen, her shoulder bone had broken and that caused her to fall. According to my vet, the activity was irrelevant, the bone would have broken that day no matter what. The cancer had just eaten it away. I screamed and cried and knew what I already knew: this was goodbye.

My friend stayed with me and my mom came to see her one last time. My mom's heart was breaking just as much as mine was. My mom likes dogs but Jen had really stolen her heart. Before the euthanasia, Jen had time to indulge in the pleasures of life on earth. Jen was one of those "high maintenance" babies that could only eat very special (an expensive!) food or else she would be sick. This was not a concern anymore. Jen ate 4 large cans of dog food that day and was thrilled by every bite. She probably would have eaten 4 more if we'd given them to her.

By mid-day she was getting restless and it was time to proceed with the injection. I wrapped my arms around her head as our wonderful vet found her vein. For some reason I was calm. I cried softly and told her how much I loved her. I was overcome with peace. It was a very specific peace: it was a peace that said "She knows how much you love her. You've made that clear." I'll admit, even in the midst of grief I can find room for my ego! I felt good about myself and saw images of when I had poured my love onto Jen crossed my mind's eye. As we lay there together, Jen left her body. My best girl was gone and, as sad as I was, I still carried that peace with me.

Over the next few days, I had an amazing realization. It was not my ego that gave me that peace. It was not my memories. It was not holding her as she died. The peace that washed over me that said "she knows you love her, you made that clear" came from Jen. She was telling me that, filling me with that understanding. As the days passed, I had to work harder to hold onto that peace. Now that peace is mostly replaced by a deep longing to be near her again.

Jen taught me so many things in the short time we had. The two I wanted to share with you now are these:

1. Love at first sight is real

2. When it comes time to say goodbye, the best we can ask for is that those we love know how deeply we loved them. Anything beyond that is just details.

To me, this is love in it's purest form. At the beginning and at the end. I can only strive to remember this and know this kind of love is possible. Pure love leaves us with a purity in the loss. How beautiful my girl was and will always be. I can never thank her enough for picking me.

When we lose such a pure love, we may not want to love again. I now understand this with humans and with pets. I am making the choice to look for love again and am willing to hurt again. I don't look forward to the pain but I can't deny it was worth every minute. I will be looking at dogs this weekend. I know Jen will be there guiding me.

Desperately Seeking Patient/Family Opinions!

2011-06-01T05:23:00.000-07:00

They're talking about us. The talking never stops, really. The amount of thought, energy and resources that go into exploring and implementing new ideas for improving patient care is truly astounding.

In recent years, patient safety strategies have been at the top of the list for issues to discuss and address. Since the study showing that 44,000 to 98,000 people die each year due to medication error surfaced, there have been very compelling reasons to make safety a huge priority.

In the recent years, I've begun to chime in about this issue of safety myself. It's become a minor obsession, really. Last week I was at a conference in Washington DC where I was surrounded by healthcare professionals of every kind and from all over the globe. For a geek like me, this is always an exciting opportunity to learn more about what is going on with these efforts to improve quality care.

The conference opened with a panel of experts delivering both encouraging and disappointing news. The encouragement generally boils down to the fact that the dedication and passion for patient safety solutions continues to spread so more and more healthcare professionals are making this issue a cornerstone of their research and practice.

The less-encouraging news came in the form of two studies; one from Medicare/Medicaid and one from my home state of North Carolina. Both studies showed that, despite massive efforts, little improvement can be seen in the arena of patient safety. How frustrating and surprising to those who have been working so hard to make hospitals and clinics safer places!

It was that moment that it dawned on me:

How much improvement can we really expect to make if only half of the equation is engaged in the solutions?

If the only people charged with decreasing error are the healthcare professionals, the patient and family are a missed resource, right? I can check the meds inside the little white cup handed to me by my nurse in the hospital, can't I? If someone comes to wheel me out of the room, my family member can make sure they've come to get the correct patient can't they?

I could go on and on here. I fact, I've written a whole book and have an entire workshop dedicated to "Partnering with Patients and Families for Safety". I won't bore you with more ideas or suggestions but trust me, there are many, many ways we can work with our healthcare professionals as our own "patient safety officers."

So assuming you believe me, let me ask the burning question: do you (patients and families) WANT to partner?

I spend a fair amount of my time as a speaker encouraging healthcare professionals to involve us in our care. It's my experience as a patient, and my understanding from other patients and families, that we want to be a part of our healthcare team by being involved in decision making, have tools and permission to speak up if we are worried or if things have gone awry, and being respected as an individual with illness, not as an illness attached to an individual.

I've taken for granted that this directly translates to the concept that patients and families want to be a partner in the healthcare experience. It dawned on me, however, that maybe it's my own special brand of geek-ness that has made me enthusiastic about being a partner in my care. Maybe most people would find this too difficult, exhausting, or outside their "job description" as a patient/family member. Maybe most people would rather not be a part of the care team and leave that to the folks with the scrubs and lab coats!

In broad terms, being a partner in our care means being given the education to understand the healthcare circumstances, the tools to speak up when there is a question or concern and the empowerment to be partly responsible for safety issues within the patient/family realm of control and understanding*. (Forgive this long sentence!)

*Defining "within the realm of control and understanding". As a patient, I could not be expected to look out for errors while I am in surgery, of course. I'm not even awake! Likewise, I could not be expected to monitor my mother's lab results if I didn't know what I was looking at.

So, I come back to the question. If you had the following three things, would you WANT to be a partner in your care?

1. The education to understand the medical circumstances at hand

2. The tools to speak up if there was a concern or question

(As an example, I was recently at a hospital in Tacoma, WA. They asked their patients to use the "Time Out" hand signal if they needed clarification or wanted to correct something being said during morning rounds.)

3. Empowerment from the healthcare professionals that your input was both welcome and needed

There is so much focus on "shifting the healthcare culture" right now. This phrase is heard over and over in most meetings and in every conference where healthcare professionals are talking about improving patient care. Once again, however, the shift in the culture is referring to healthcare professionals changing their attitudes or moving away from old-fashioned ways of taking care of patients.

What about us? Shouldn't we be also shifting the patient healthcare culture? If we stay the same and they change, where will that get us? Is it time for us to let go of some old-fashioned ideals of what it means to be in the hospital or in clinic?

I ask because I'm curious. I ask because I've been assuming I know the answer. I ask because the train might move more quickly if we were on board. I ask because I've begun to build a case for patients and families being trained and held accountable as a partner in the healthcare team, and I never stopped to ask if most would want that. If they don't, I might need to pipe down and stop asking professionals to find ways to partner with us.

Please help me. Be my blogging focus group and let me know your thoughts. The next steps in my career may just depend on your answers! Thanks in advance for your feedback!

Here are the questions I'd like you to ponder and answer:

1. Do you WANT to be a partner in healthcare (for you or loved ones) or would you prefer to no be directly involved in patient care, plan of care, safety measures etc?

2. If you DO want to partner, what do you need to do so? For example, do you feel like you have enough information to do so? Permission? Guts?

3. What do you see as the greatest challenge to partnership?

4. How might you as a patient/family member become a part of the healthcare team today, regardless of your current clinic/hospital and healthcare team? Can you? Please be specific.

Ah, the humanity!

2011-05-19T08:24:00.000-07:00

A few months ago, I was walking through the Newark, NJ airport and saw an older woman with bleached white hair, bright red lips and blue eyelids. Her clothes clung to her like a second, sequined skin. My judgmental mind began its work by saying "What is she thinking?" and a smile crept onto my face.

It was at that moment that I literally felt an energy surge in my brain. It made me half dizzy. In an instant, I envisioned the people who loved this woman smiling and saying "That's how she is!" Their faces held the warm amusement many of us carry for those we know and love. The adoration felt is made stronger, in part, because of eccentricities like fake white hair and blue eyelids.

My mind shifted in that moment, the smile on my face grew wider, and I felt love for this woman too. My judgments were replaced by an awe of the uniqueness of this human being and the way she chose to present her physical body to the world around her. For the rest of the day, I found myself walking through the sea of bustling airline passengers saying to myself "I love people." And I meant it.

I thought about the people in my life who I have defended because they are misunderstood and I did not want them disparaged. I thought about the people in my life who understood me and probably have defended my character to others despite a flawed exterior. I thought about those I have judged or shook my head at and how wrong it was to do so.

No matter who we are, we all have someone that knows us and loves us because we are all worthy of love. Even those behind bars after committing horrific crimes have people who mourn the hole left by their leaving society. If everyone has a person or people who can see behind the exterior and love, why can't we all give each other that courtesy? That day, I walked around the airport admiring the shapes, the emotions and the humanity of everyone around me. I was in love with people that day. I wish the spell was a permanent one.

I think of that day often and remind myself of the lesson learned. I work to quiet my judgmental mind and embrace the unseen in others. This works, of course, with varying degrees of success. Sadly, it hasn't been working very well at all when I turn the perspective on myself.

I am single now and have been dating for a few months. It is my new belief that there are few things in life that can make you face your humanity like dating in your late 30's. Illness, obviously, would be first on the list but dating is a close second.

For those of you who are in relationships and haven't dated after the age of 32, 33, let me just say that it is a whole different ball game. The players carry heavy bags of hurt/expectations/logistics that were not nearly as big years ago. Instead of becoming more open to people's differences, daters become more closed and rigid, rejecting potential love for any minor transgression in an email, life circumstance or body type. I am not an exception to this rule, unfortunately.

This harsh world of "are you good enough for me?" causes a self-conscious person like myself to turn inwards and evaluate. Last night, I wrote a long and heartfelt post about the pain of dating and how it can impose a break down on my self-esteem. Seconds after I posted it, I removed it. Why? Because it was too vulnerable. Because it was too human. Because I feared if a potential dater read it he would have an easy reason to move on to the next potential dater. I was ashamed of my humanity and could not bear for you to witness it.

I wish things were different. I wish that more people would assume the best before looking to pick apart the flaws. I wish more people wanted to understand rather than judge. I wish more people would assume everyone worthy of love before deciding they aren't good enough for their love. I wish we celebrated our humanity instead of tried to hide it.

Today, I feel these things more acutely because of being single and dating at 37. But these things are not new, either. How many of us strive to put our "best self" forward at work, in social settings, or in a new relationship of any kind? Doesn't "best self" really translate to an unwritten definition of what society has deemed to be a desirable person? So we hide our bawdy sense of humor, we gloss over our grief, we feign interest or disinterest...the list could go on.

What's my point? Am I suggesting we revert to childhood where we have no filters and wildly express emotion even in the middle of a grocery store? No. There is something to be said for the awareness of an adult who recognizes they are not the center of the universe and behaves accordingly. There is also something so appealing about the person who knows how to be real and vulnerable, even in the face of disapproving eyes.

As I move forward through this humbling experience of dating later in life (and walking a lifespan tightrope, I might add) I will strive to find the strength to be who I am. If illness has taught me one thing, that is resilience.

It is these lessons of illness that carry me through the struggle of dating. I know that I have the capacity to be knocked down over and over, brush myself off and resume forward motion. I know that, even when it hurts like hell, I can trust myself in knowing I will be ok; this too shall pass. When I get knocked down, when it hurts like hell, I will continue to choose to remain vulnerable in the pursuit of what I seek. I, again, find myself thankful for the gift of CF. It has not made life easy and that is precisely why I trust myself in the face of difficulty.

As for you, I love you. You and all of your hidden and unhidden eccentricities are what make life on earth such a vibrant, interesting adventure. My eccentricities may butt heads with yours and this might make friendship unlikely but I love you anyway. You are worthy of love. All of us are. Now, I just need to be brave enough to keep believing that for myself.

Recognizing Culture

2010-12-03T06:56:00.000-08:00

Hi Friends,

Ironic that my last post was about writer's block! I have been working through some of that with a new book I am co-writing. It's called "Getting Your House in Order" and it addresses some specific needs of African Americans facing end of life and healthcare decisions. Below is my opening thoughts about culture and how it informs us in ways we may not even recognize.

I hope you are all having a healthy and happy holiday season! Much love to you and yours!

Tiff

Culture. I have heard this word so often but I never took the time to stop and really think about what it means. When we use this word we might be referring to cultures of countries or certain large groups living within those countries. In the US, we often refer to "African American" or "Latin American" culture when we are trying to describe a certain section of the US American population. In some contexts, this may seem to be synonymous with stereotyping and add to the feeling of disconnect between a sub-culture and main stream "America."

In the proper context, however, framing things in the light of culture is a sign of respect and understanding. To acknowledge that not all communities of people think, act and view the world in the same way is the first step in giving and receiving the respect we all desire and deserve. Before we can move past barriers, we must understand each other in an effort to become closer.

The interesting thing about culture is how deep the layers go in our every day lives and how few of us are even aware when we are behaving out of our culture. We look around, assume we are the "norm," and puzzle over others and their silly ways. Or worse, judge others for their ignorant/stupid/strange (insert other adjectives here) ways. It is the judging that pulls us a part and keeps us from learning from each other's strengths. It is the judging that keeps us in a place of "us" and "them."

When Did You First Realize...?

Do you remember the first time you realized that your thoughts were not the same as everyone around you? Do you remember that first argument about something that seemed so obvious and true to you but someone else saw things completely differently? Where you frustrated? Amazed? Confused? Angry? Maybe, on some level, a little scared and taken aback?

Do you remember the first time you realized that other families didn't have the same religious beliefs or rituals as your family? Do you remember what it felt like to try and wrap your brain around the fact that your parents' beliefs were not "the gospel"? (Please excuse the pun.) What did it feel like to know that the world was filled with beliefs about God and the afterlife that were different than yours? How did you react?

Do you remember the first time you went to a friend's house or out in public and your table manners did match up with the people surrounding you? Did they look at you funny? Did they say something? Did you correct yourself automatically, because of your observations perhaps, or did you continue to do things "your way"? Were you embarrassed? Did you think you were "right" and they were "wrong"?

Almost everything we do and think in life has some footing in our culture. As children, we begin to learn that people do things differently. As adults we have the choice to honor these differences, try to change other people, or judge and shun those who think/act in a way that doesn't fit within our culture.

From the way we eat to the way we prepare food, from the way we work to the way we vacation, to the way we grieve to the way we rejoice, our culture has given us guidelines on how to engage the world. Your guidelines are not my guidelines. Before I can begin to understand your guidelines, I have to become aware of my own.

Where Did this Come From?

For the next few weeks, try this exercise on culture. Pay attention to the following "categories of life" and make notes about how you do things and when/where you remember learning this (if you can remember it at all.)

When possible, observe others who do things differently. If you can, ask them about when/where they learned to behave that way. Explore with them where they may have picked up the behaviors/attitudes/beliefs and their awareness of the cultural background. If possible, ask them the questions below and discuss your commonalities and differences.

Food:

What is your relationship with food? What does food mean to you? What kinds of food to you like? What kinds of food do you prepare? When you sit down to eat, who is with you (if anyone)? What do you like most about food? What do you like least?

Emotion:

How often do you show your true feelings? How often do you hide them? When you feel very happy, what is an appropriate way to express it? When you feel very sad or angry, what is an appropriate way to express it? Do you show your emotions differently depending on if you are in public or in a private setting? When you express your emotions, do you think about how it will impact those close to you?

Holiday Traditions:

What holiday is most meaningful to you? Why? What do you (and your family/friends) do to celebrate this holiday? In general, do you like holidays? Why or why not?

What other facets of life can you think of that are influenced by culture? Write your list and take notes!

Culture and Illness

When my grandmother was not told I had CF, I felt like my family culture was telling me that this disease was a burden too big for some to carry. When I didn't graduate from college because my genetic illness had become end-stage, it was my middle-class culture that told me I was a failure and not as worthy to speak up in certain conversations with "educated people." When I sat in the holding area before my lung transplant and felt the need to stay sunny and talk about everything other than my true fears, that was my Anglo-Saxon culture telling me to "keep my chin up." When I saw my Irish aunt screaming at the wake of her husband it was all of the cultures I had grown up in that made me so intensely uncomfortable with her way of grieving.

Illness and loss, perhaps more than any other life experience, brings out the bright lights and quiet shadows of our cultures and attitudes. Without being aware of it, we might be rubbing elbows with other cultures and people who are moving through this journey differently. At a time when our emotional skin is so sensitive, when are psyches are so vulnerable, this can cause for tension and misunderstandings.

Add to that, that we must also be functioning within a healthcare system that has its own culture and imposes a set of behavioral expectations on patients and families. Families grieving too loudly may be moved to another area. Families showing up in large groups might be asked to leave. Patients crying might be sedated. The culture of healthcare is often one that demands little outward emotionality and a submissiveness to the healthcare authorities.

As patient/family centered care begins to become a more popular ideal, this culture is truly shifting. However, it has not yet found solid footing when it comes to honoring the process and culture of a variety of individuals, families and ethnic groups. The past has caused hurt and distrust. The now is in a place of unfolding. It is a time of re-shaping our healthcare culture for a more inclusive and compassionate environment. This requires personal awareness, education and a commitment to compassion (on both sides of the healthcare curtain).

Are we ready for this? We have to be. There is no other time than today to begin working for the best healthcare experience possible.

About Writer's Block

2010-10-07T09:44:00.001-07:00

I have been getting some emails asking me about various aspects of writing and publishing. I am not always good at answering back because i tend to have long winded answers. For example, I have had a few people ask about self-publishing vs. traditional. I have a lot to say about that. If you want to talk about it, I would request you set up a time to talk to me on the phone. Email me and we can set up a time.

Recently, someone asked what I do if I feel writers block. I have answered that one so, just in case you are interested, this was my reply:

1. pause and step back from your push to produce. find a book, a podcast or a TV show that has similar themes and allow that to feed your soul and mind. sometimes taking in other's work will inspire and stir up what will become your work.

2. pick something that is fun or interesting for you to write about. even if this doesn't mean writing "the assignment," the most important thing is to feel that flow of creativity. that flow can only begin when you feel inspired. once the creativity floods open, then you will be more likely to write on the "assigned" topic.

3. write to someone. it is easier to write to a person or group of people you know than to write in general. pick a very specific audience and tell them what you want them to know. this makes the writing about them, not you, and the words may flow easier. this may mean tweaks will be necessary later in order to fit the format, but you will be surprised at how much will be used and well written when you take the mind's focus off of yourself.

As for myself, I am excited about 2 new books I am writing. I am currently co-writing a book with Stacie Peacock about African Americans and advance care planning through Project Compassion. Second, I am taking my work to a more spiritual realm and writing a book I am currently calling "Lessons from the Edge: What Almost Dying Taught Me about Really Living."

I am excited about both! Thank you for your continued support. I wish you all inspiration and free-flowing creativity!

weep for us

2010-09-16T14:13:00.000-07:00

In reading this article and watching the CNN footage today, I cried. What has happened to us and where are we going? What is this world we live in and when does this kind of insanity end? Where is all of this pain, rage, madness and victim-hood coming from? Is there any return or is is only to get worse from here? I am sad for the doctor. I am sad for the patient. I am sad for the man who thought this was an answer. I weep for us and wearily look to our future.

The "You Should Virus"

2010-09-14T06:11:00.000-07:00

I have been doing some serious thinking lately! My mind is a whir with lots of things I look forward to sharing with you, my blogging buds. Two primary topics have been gallivanting through my little head these days: compassion and judgement. Two great tastes that go great together! Ok, not so much. But these are two fascinating studies in human nature, are they not?

In thinking about judgement, I will begin by confessing that I can be judgmental. I have knee-jerk reactions to things and people that I allow to go unjustified. Conversely, I can be compassionate too. Sometimes in a good way and other times to a fault. Giving all of your compassion away and leaving none for the self is a form of self neglect and (possibly) abuse. Would you agree? I am going to continue exploring this in later blogs but for now, I want to ask if anyone else out there remembers catching the "you should virus"?

I was 22 and facing end-stage lung disease. I was living in California while awaiting a double lung transplant. While I was rich in some life experiences, I was quite naive and innocent in many others. At that time in my life, I was not very judgmental of other people. This was not because I was saintly, it was because I had never really thought to be. I was too consumed with my own inadequacies to take time out of myself and judge other's life performance skills.

At this time, I began dating a man who was a little older than me (about 4 years) and had been on his own since his teen years. He owned a business and was certainly more are a part of the grown up set than I was. For this and other reasons, I idolized him and emulated him. I began dressing like him, talking like him and even thinking like him. (Sad, I know, but haven't many of us done this before we knew who we were?)

It was here I caught the "you should virus." He had frustrations at work and general frustrations with family and friends, as most of us do. His response to these frustrations often manifested as small or big rants to me. There was a formula to his rants, though. The sentences almost always started with "Well, I do this (implication here is "this" is being done well, with integrity or with great effort), and since I can do it she/he should too."

I began to learn this pattern and applied it. It felt good to say that because I was doing something well/right/difficult that this meant no one had an excuse not to live up to my standards. It achieved a nice effect of patting myself on the back and justifying my frustrations with other people. I had been infected by the You Should Virus and, little did I know, I would suffer the symptoms for the rest of my life.

As an older, more well-rounded adult, I could see the error of my ways. Intellectually it became obvious to me that people are different, with different talents and challenges, and comparing them to myself in this "If I can, then they should..." way was both pointless and silly (not to mention not-very-nice). At various times in my life I have made great effort to find medicine for the You Should Virus. Sadly, I find myself slipping back into it eventually. It seems to be in my blood.

Perhaps my approach has been wrong. Perhaps, once a person is infected with the You Should Virus, there is no cure. Perhaps this is a chronic illness that needs maintenance therapy. Currently, I am in the process of developing a therapy to help me keep this virus in check. I am excited to share this new therapy with you once I have done more research and self-experimentation.

Meanwhile, as I continue to think on these things, I wonder if I am looking for treatments to only medicate myself or if there are others infected. I would sincerely appreciate any comments on this. Am I the only one who has been infected by the You Should Virus?

Keepin' it real

2010-09-09T07:18:00.000-07:00

Last night I had a...what was it? A hissy fit? Pity party? Break down?

The physical symptoms were not far outside normal. A bit more stomach discomfort than usual with some added shoulder pain. No biggee. No biggee surely with someone with my history. But I lost it. I gave into it. Partly because I thought the tears might provide some relief from the pain in my shoulders and the tightness in my stomach but, more so, because I was just "over it." Some of it was that tiny fear that, no matter how long I've been post transplant, still lingers and whispers "maybe this is something serious marking the beginning of the end."

My quality of life is so much better with these beautiful lungs and yet, there are other nags. Not as dramatic or easy to see as being short of breath but they are, in some ways, nearly as constant. Most of the time I eat, I feel sick. I work against fatigue all day long, like trudging through a swamp. As I get older the body creaks and whines more after what was once meaningless tasks, like carting baggage through the airport.

Most days I do what all chronically ill people can do, put on my horse blinders, ignore the pains and nagging nausea and go about business. There is the internal sensor that watches for signals that could be potentially dangerous while filtering out the usual noise of my body's normal level of discomfort.

Usually the horse blinders are so firmly fixed, I forget there are they. My struggle for energy, or even post-meal nausea, doesn't register on any important conscious level. Even if I have to lie down until the nausea passes, I certainly don't CRY about it or feel particularly sorry for myself. Usually. So what happened last night? Why the sudden dam break?

I guess sometimes the noise needs to be heard. All of that noise registers somewhere it can only be ignored for so long. Sometimes, I think I have to give myself that moment of what? Self pity? Self compassion, perhaps. Because as lucky as I am, as healthy as I appear, there is still a struggle there. As much as I breeze past this noise, my ears still hear the whining and the whirling. As much as I wish it did not exist, it does. And so, there is a real need to give in once and awhile and hold myself close, as if rocking a baby while repeating "you're ok, you're ok, let it out now."

Last night, the dam broke. Tears come to my eyes as I write this, even the next day. Holes in the structure still remain, it appears. Sometimes, it gets old and we feel tired. Some days the noise is louder than our fingers-in-the-ear trick can protect us from and our feet can not outrun it. As lucky as I am, I am keepin' it real and letting you know, sometimes it can be hard too.

Today, the dam is in repair and my soul feels refreshed for the momentary breakdown. Self-compassion. I needed that. Thank you noise, I appreciate your persistence. Thank you horse blinders, I need you too. It's all a beautiful dance. Just have to keep it real.

"Loving Daddy"

2010-08-30T08:38:00.000-07:00

If this video doesn't work for you, try clicking inside the black box or follow this link:
"Loving Daddy" on YouTube

"Finding Your Voice" is a workshop I developed with Project Compassion. In 2010, the Train the Trainer version of this workshop was launched and 6 videos were developed to accompany new trainers in teaching their friends, neighbors and community members about patient advocacy, advance care planning and organ/eye/tissue donation. This is the one of three videos made for the donation education module. For more information, see project-compassion.org and sickgirlspeaks.com

Joy: Salt in the Wound or Hope for Tomorrow?

2010-08-14T14:24:00.000-07:00

Before writing this, I wanted to look up the definition for the term "mindfulness." It is language I am using more often and the basis for this blog entry. However, it took me seconds (via google and wikipedia) to learn the term has many meanings and I could not find a definition for how I use it personally. Hmmm. Did I make it up and all this time I have been misusing this term?

Either way, mindfulness as I defined it somewhere, somehow, along the way is being aware of oneself (internal and external awareness) while also being aware of how one's actions, speech and thoughts might effect others. For me, this primarily means the people I care about because I feel far to overwhelmed when I consider being mindful of everyone on planet earth!

So, with this approach in mind, I find myself with a question for my blogging friends.

There are so many people in my life who are suffering. Many of them are friends I don't know IRL (in real life) but their struggles permeate my thoughts often despite the lack of physical presence. In addition, people in my RL are struggling in a variety of ways. Primarily I am referring to physical struggle, serious illness etc, but at times this can mean emotional struggling also.

More and more, I find myself feeling a compulsion to hide or downplay the sweet parts of my life. It is not that I don't have struggles, I do, but they pale in comparison to the people I know living day to day for another breath.

This compulsion comes from a place of "mindfulness" as I define it. It seems hurtful to me to sing the praises of my life when I know others are suffering so. I feel as though I should keep any of my good fortune to myself out of respect to those who are sad, scared and hurting.

I suppose I have some silly notion that when everyone is "all better" and the suffering is gone, I will again shout from the rooftops my love of this life. But, of course, the suffering will never end. One person will recover and another will suffer. This is life. One day the suffering will be mine again.

So, am I ridiculous? Can you relate? Am I on to something or out of my mind?

When you are suffering, do you like to hear of the joy in other's lives or is it like adding insult to injury?

Should I follow this instinct I have and practice my made up version of mindfulness or should I share my happiness even with those who currently suffer?

Thoughts?

we are the change presentation tutorial

2010-07-21T18:14:00.000-07:00

New Book, Big Discount

2010-07-19T12:06:00.001-07:00

"We are the Change" is a reflection of the

shifting healthcare culture and the new,

savvy patient mindset. Through thoughtful
exercises, useful information and cutting edge

tools, this guide leads patients and families

into strategic patient empowerment.

The book is here! Get your discounted copy at

sickgirlspeaks.com!

As always, thanks for all of your support!! :)

Very Superficial

2010-07-15T10:24:00.000-07:00

The pendulum has swung and my brain has gone from "deep thoughts" that wake me up at night to pure superficial silliness. The deepest thought I have had since the book was completed is "maybe I should be a brunette." So, I think I will be a brunette and will also enjoy this break from thinking. Sometimes, it is a relief to have nothing to say.

Would you agree?

crash

2010-07-03T17:15:00.000-07:00

I have pushed myself very hard over the past few months. I have traveled all over the place while maintaining my local speaking engagements, moving to a neighboring town, and....what was that other thing? Oh yes. I wrote a book.

It's been really stressful, in a good, carpe diem way, but stressful still. I salute this body of mine. When I push it, it goes. But it has limits and now that the book is done and my schedule feels "normal busy" again, I have crashed. I can't seem to get enough sleep and simple things make me tired. This is exactly what I would expect. Looking forward to getting some strength back, though.

I am lucky to have these legs, lungs and abilities. I am grateful.

I will be sure to let you know when the book is available. "We are the Change." Boy, I sure hope someone reads it after the effort I put into it! :)

Much love and Happy 4th! Nap time....

To the Caregivers

2010-06-25T12:22:00.000-07:00

This morning I woke up to read about a 7 year old boy who died from CF. His mother's writings about the excruciating journey grabbed me in a place so deep within, there are no words to respond. Her rawness, her honesty, her love and her sorrow were both devastating and beautiful because it all comes from a place of pure love.

Later the same morning, I was lucky enough to be one of the speakers at a caregiving conference. I entered the room with the grieving mother on my heart but not really expecting it to connect with my day. As I listened to the first speaker talk about the role of caregivers, the level of stress they live under and the struggles they experience but rarely acknowledge, my thoughts turned inward.

My mind scanned the years past. All 36 of them (that I could remember) played themselves like a song in my head and the melody was the same in every refrain: my mother, my father, my siblings and my friends. What they have gone through. The nights of worry while wiping my brow or watching me wretch. The financial burdens, the emotional burdens, the psychological burdens and the spiritual burdens are all too heavy to be weighed.

And yet they did not stop. They did not let go. They tolerated my moods, my good and bad treatment choices, my extreme physical needs and my emotional demands. They held me even when I had lost sight that they needed holding too. They loved me even when my mind and heart were too wrapped up in my own chaos to see it and properly return their love. They gave and they gave and they gave.

And how often did I say thank you? Not, "thank you for bringing me water," but a real thank you. For all of it. For their suffering as a result of my suffering.

Rarely, if ever.

How often did I hold their hand and ask what they needed, how they could be supported?

Rarely, if ever.

How often did I reveal to them the worry I felt in my gut when I allowed myself to wonder how they would make it through these stressful, sad times?

Rarely, if ever.

How could I let them give so much and give so little in return?

Today my eyes welled with tears as I tried to think of a way to express how much the caregivers in my life mean to me. How deeply I appreciate their selflessness and compassion. How vulnerable I feel to know I was at their mercy and how humbled I am to see how well they held me together.

Mom, Dad, Lori, Jill, Jay, Steve, Paul, Liz, Watts and all of those who held my broken pieces, I did not tell you because I don't know how. I did not tell you because sometimes I was so involved in my own crisis I was unable to see beyond it. I did not tell you because what you have done for me is beyond what I can really understand. I did not tell you because what you have done for me is beyond my capacity of expression.

I have been selfish. I have been clueless. I have been lost in my own survival. But, most of all, I have been silently grateful, silently overwhelmed, and silently embarrassed. When there is so much giving that it begins to feel absurd, it feels like there is no way to match it with poetic words or meaningful actions. So, stupidly, I just didn't try.

I am sorry I have not said it enough. With all my heart, I thank you. For the care I know about and the care I didn't even see. For each individual way you have cared for me while trying to keep a balance. For the times the balance was lost and you kept caring anyway but on a tilt. You are why I am here. You are what matters. You are the people I am honored to call family. I am so lucky.

I love you. I thank you.

Support through Technology

2010-06-21T12:15:00.000-07:00

Does it have to be IRL to be meaningful?

For some people facing illness, one of the hardest things to deal with is the sense of isolation. Even in the most loving group of family and friends, if you have never lived with illness, it may be impossible to truly relate to the experience. One powerful remedy to this sense of being alone or not feeling truly understood is connecting to others living with the same or a similar illness.

Finding direct peer support and interaction can be a challenge. Here are just a few examples of why "in-person" support may not be a reasonable option:
Patients may be simply too sick to attend meetings or actively pursue friendships with those walking a similar path
Some diseases are so rare there are few patients to connect with and even fewer in a specific location
If an illness can be contagious, a peer to peer meeting is potentially dangerous
Family members may so overwhelmed with caregiving, they do not feel comfortable leaving the home for a support group or other peer support opportunities
For these reasons and others, online healthcare communities have become the cornerstone of support for some patient and families.

For some, the level of connection and caring that can happen in the online communities is difficult to understand. Patients or family members may be misunderstood or teased for the deep bonds they can develop with people "they have never met." While this is an understandable perspective, for those facing illness and in need of peer support, these relationships become just as important as the relationships they have IRL (In Real Life).

There are certainly dangers that accompany these online friendships. Sadly, there are people on the internet who pose as patients or caregivers for a variety of reasons. These people may just be desiring attention and caring. More sinister, some may be trying to scam innocent and compassionate people out of money. While these "patients" and "caregivers" are rare, it is important to be aware of this possibility. The lengths some people will go can be quite extraordinary--computer programs to mimic hospital sounds in the background for example--so be mindful of your heart and wallet.

That said, online chat rooms, listserves and other blogging/networking sites like Caring Bridge (caringbridge.org), can be a lifeline to those living in the illness maze. In addition to emotional support and understanding, the forums can be great resources for first person accounts of certain procedures, medications and treatment options. Patient and families will undoubtedly provide a different perspective regarding a healthcare option than a healthcare professional. A peer community may also be able to provide examples of treatments being done in other centers throughout the country or the world, therefore increasing your capacity to research your options outside those presented by your local care team.

Between the emotional support and the practical information, online communities can be an invaluable resource to those navigating the illness maze.

Googling Grief

A few months ago was the one year anniversary for the death of a beloved friend. Today I was thinking of her and missing her presence. On a whim, I decided to google her name. Being that she was a smart and active woman, there were lists of articles written about her and by her. Some had pictures and some had only her words. Through the tears in my eyes I felt the closeness I had been longing only a moment before. Here she was, in front of me, speaking through words of days past. It was as though we had been able to share a cup of coffee for just a little while. Somehow, with her image and language only a key stroke away, my grief was soothed.

I have been noticing other ways in which the power of the internet is gently influencing the grieving process. I am one of the millions of facebook addicts in this country and rely on it for way too much of my own socialization. For those who don't know, Facebook is an online networking site that makes it easy to keep in touch with hundreds of people at once, and yet somehow manage to create the feeling of closeness.

In the past year, I have had several facebook friends die. Because of the rules of facebook, the only person that can close down a facebook profile is the person themselves. This means when a person dies, the facebook page will remain. What I didn't expect was how people would continue to use that facebook page.

In all of the instances I have witnessed, people continue to write on the "wall" of the deceased person's profile. Sometimes they are sharing a funny memory the two had shared that made them smile that day. Some days they will express their deepest sadness and difficulties with getting through that day without the one they love. Other times, they will simply stop by and say "hi." In all of these postings, the grieving are speaking directly to the dead, without any sense of embarrassment or awkwardness. They are not talking about their loved one, they are talking to their loved one.

It is, in a way, the cyber version of a grave stone. A central place to go where a person's energy is stored and all who knew them are welcome to visit. It is a place to cry and share. It is a place to tell the ones we love we still care and they are not forgotten. It is, in my opnion, beautiful and unique. In a culture where we have so few ways to openly process our grief, there on facebook, we are loving those who left us behind.

I don't have profound words about the social implications of this new trend. I don't know really how it fits into our cultural grieving paradigm. All I know is that today I visited my friend on the Internet and it helped me feel close to her. When I go to the facebook profiles of those I love, I somehow feel like I am walking in the footprints they left behind. This, I think, is healing.

Creating Community: The Challenge

2010-06-21T11:52:00.000-07:00

What is a Community?

In the context of healthcare and illness, community can mean different things to different people. For the purposes of this discussion, we will describe community as one of the following:

1. A disease-specific or healthcare specialty group: Examples of these might be "the cancer community" or the "hospice community"

2. Location: This could mean a neighborhood or retirement facility, "The Shady Grove Community," or a particular health system such as "The John's Hopkins Community"

3. Organizations: This includes organizations dedicated to creating "intentional communities"for the purpose of supporting caregivers and patients who may not have a naturally occurring support network

In some cases, a community comes together to help one individual. Sometimes, one individual will blaze a trail for the benefit of an entire community. In both cases, there is often a strong personal motivation to advocate and motivate on the community level.

Before we explore the possible ways to be a community advocate, it is important to first understand the challenges that present themselves to both individuals and the community and a whole. It is by understanding these challenges that we can begin to move past them.

The Challenge for the Community:

When a family is dealing with serious illness or loss, the community feels for them. The community wants to help. Unfortunately, they don't always know how. Often people outside of the immediate situation don't feel comfortable in knowing what to say and do. They are fearful of saying something wrong and don't know what the family might need/want. It is out of this concern for putting foot in mouth or overstepping boundaries that sometimes the community takes a step back and does very little.

When communities do get involved, it is often in very traditional ways. Things like sending notes and bringing by food are extremely helpful. At the the same time, there may be more the community can do to offer support. This means getting closer to the situation and discovering the particular needs of the personalities involved.

To be as supportive to individual families, communities may need to think outside the box. First we must begin to understand each other and them we can partner with each other for the greatest level of community engagement possible.

We Are the Change

2010-06-20T11:54:00.000-07:00

We are scared and tired

But we are not alone

We are lost and confused

But there is a map

We feel weak and sick

But there is still strength

Within each of us the power to forgive

Within each of us is the power to lead

It is time to stop expecting perfection

And embrace the humanity

It is time to take our place at the top of the hierarchy

And ask for the hands of our leaders

Look to the hearts and minds of our professionals

Invite them walk with us as we find our way through the maze

It is time for us to be strategic in our chaos

Embrace our role as teacher

It is time for us to be a partner

It is time for us to be a part of a team

Patients, families and loved ones

The time has come

Let's find our voice

And take our place

We are the change

Professional Lobbyists and Lobbying

2010-06-20T11:36:00.000-07:00

Before I began my journey of political education, I had an image of what a professional lobbyist must look. This image likely came from various sources including media stories, Hollywood, legend and random stories I have heard in passing along the way. The characterization was not flattering and primarily consisted of men in suits with red faces doing dirty deals for questionable causes.

I have not spent much time in the political world but even a small amount of time is enough to see the corruption and disturbing practices of some individuals within the system. I am not naïve and neither is the American people; we know things in our government are not always just or pretty.

That said, I found my time with the professional lobbyists who were kind enough to let me shadow them to be both enlightening and inspiring. Dare I say I may not have had the whole picture when I had those ideas in my head? Dare I say the role lobbyists play in the ideals or the downfalls of our governmental processes are similar to the roles professionals play in medicine: there are some bad eggs but one bad apple should not spoil the bunch. Lobbyists with vision and integrity can be a vital and helpful part of the governmental machine. Likewise, lobbyists who use their talents and connections on behalf of less desirable issues, clients or agendas can be dangerous.

The role of the professional lobbyist is to be a paid intermediary. They arrange meetings on behalf of clients and speak with those in public office in an effort to move forward their client’s goals. What I did not understand before observing this world first hand was the wide variation in the type of lobbyists and how they work.

Industry Lobbyists:

Industry lobbyists are professionals who only lobby for one group and organization. These lobbyists have one perspective, one point of view, on any given issue. An example of this is Jack, the lobbyist I shadowed who worked for the National Association of Social Workers. Jack himself is a social worker and therefore, as a lobbyist, was representing his own profession. This enabled Jack to bring a level of sincerity and integrity to his work because he understood the issues facing social workers first hand. In addition, the NASW has a clear message: to support bills that enable individuals to decide what is best for themselves. This clear message enabled Jack to lobby consistently for the same rights, policies and budget decisions without ever having to have a conflicting stance.

When I observed Jack, it was clear to me why he was a successful and effective advocate for both social workers and the people they serve. Jack is large in stature and larger in personality. He is both knowledgeable and quick minded. Partly because of his training and partly because of who he is, he has a natural and sincere interest in others and this reads clearly. Jack’s work has a firm foundation in the relationships he has formed. Representatives can trust him to be honest and consistent in his concerns and arguments. His combination of being no-nonsense, humorous and consistent makes him ideal for his role as industry lobbyist.

As Jack and I walked around the grounds of the various Legislature Buildings, he explained to me that the work he does happens in more places than the various meeting rooms. In fact, more often than not, by the time a bill gets to Committee, he knows what the vote will be because all of the real work takes place before the actual meeting. If Jack knows that his bill is going to be voted in the favor of his organization, he may not attend that committee meeting and, instead, track down more pressing business. It should also be noted that Jack had an unusual level of energy, as do many people in this line of work. At any given time, Jack might be watching and weighing in on as many as 30 bills.

Jack’s lobbying efforts happen whenever the opportunity presents itself. This means elevators, hallways, stairwells, and yes, even bathrooms. Whenever Jack can get a moment to talk to a resistant representative or a senate ally that needs to be informed of some problems on the horizon, he will take it. Life is that hectic in the political worlds, people are that busy, and the issues are that important.

So what kinds of things might you hear Jack saying in an elevator? He says one of his favorite opening lines is “OK, Representative, it’s time for you to get mad about this.”

Bottom line: It’s all about the relationships and seizing the opportunity

How do we build those relationships, you ask?

Legislative Liaisons: state employees who track bills similar to lobbyists but don’t have as much power as professional lobbyists

Contract Lobbyists:

When people think of lobbyists, they are often envisioning contract lobbyists. These are the people and the firms that carry a load of clients with varying issues and perspectives. Often contract lobbyists are lawyers, but this is not always the case. I had the opportunity to sit down with the vice president of one of the biggest and most successful lobbying firms in Washington DC.

Side note: How did I get this chance, you ask? I’m glad you asked. This is an example of the power of “what’s the worst that can happen, they say no?” In my research, I found and joined a website called lobbyist.info. I took a stab in the dark and wrote to this faceless website, told them my project, and asked if they had any suggestions for a lobbyist I could shadow during an upcoming trip to DC. Would you believe they wrote back in less than 24 hours to say one of their board members had volunteered to meet with me, his name was Mike, and he would be contacting me. Who knew? Just goes to show, they can say no but they may say yes. Might as well ask, right?

Before I took my trip to DC, Mike and I had exchanged several emails and he seemed very casual and down-to-earth. Imagine my surprise when I arrived at his office and realized I had just walked into a real-life Hollywood set. The sleek office took up half of the eleventh floor with views overlooking Capitol Hill and the National Monument. When I told the receptionist who I was there to see she kindly motioned behind me and said “Are you Tiffany Christensen?” On a flat screen television behind me read “We welcome Tiffany Christensen.” This was the big leagues and I was wearing flip flops. Miscalculation of wardrobe, for sure!

When Mike came to greet me he was kind and, even in a full suit and tie, approachable. He began to show me around his office that had few corners and mostly curved walls leading us to various destinations. It would have taken me all day to find my way back to the receptionist. Immediately, Mike began to point to impressive and recognizable campaign displays hanging up. I don’t mean campaigns for candidates; I mean the campaigns you see in magazines and television advocating certain causes like preventing teens from becoming smokers and raising awareness about hepatitis C. These were not obscure. I recognized almost all of the campaigns.

I was confused. I thought I was visiting a lobbying firm but this sure looked like a marketing firm. Had I contacted the wrong people? Mike continued to explain the campaigns on the wall and the clients they designed them for. The Post Office, The Ronald McDonald House, and the YMCA were just a few. These were big clients with big agendas. This was a big firm with big ideas. I was looking at lobbying on a whole other level.

After a tour of the office, Mike and I sat down to look at a pile of client studies he had pulled for me. He went through each example and explained the client, the intention and the resulting action. The kind of representation his company provided varied.

Fill in examples here

There were consistencies between the techniques of Jack and Mike. They shared some of the same frustrations and some of the same love for the role they got to play within our political system. They both said the same thing to me several times:

“You, the constituent, have more power than I do.”

Whether you are working in a smaller setting, a large corporate setting, or somewhere in between, first person narrative still trumps all. Mike sites the main barrier to having that narrative heard is the fact that there are so many voices, it can be hard to break through the masses. This is part of what Mike’s firm specializes in. To remedy this, they have created a training center for people to come and learn how to present themselves at press conferences, on CNN, and any other large scale forum. They train everyone from CEO’s of major corporations to patients like me.

At some point during my talk with Mike, I began to feel both excitement for the impressive work that I was seeing in front of me and discouraged that this kind of lobbying skill was reserved for larger fish. Mike addressed this by encouraging me to approach firms like his. He repeatedly asked me to “not write it off” but instead ask for help. If there was a compelling story, a policy that needed addressed, or some other valuable message from a small organization or individual, Mike believes firms like his might be able to help. One way they could do this is by doing the work pro-bono and another way is to scale back the effort where it may not be a full out marketing campaign but the connections could be used to distribute important information, press releases etc.

I like Mike’s suggestion and I have another of my own. If I were to take away the glossiness of the campaigns I saw at Mike’s office, there would still be an essential, effective core. These campaigns were not just veneer, they were smart, concise, and clear. They took time and preparation. Whether they were letters, press releases, or large television campaigns, they were not off the cuff. They took in to consideration their audience, the political climate of that moment, and the emotional hook. When I walked away from the campaigns, there was never any question about what “the ask” was, either to the general population or to a particular political figure.

Bottom Line: We may not all be able to hire big firms like Mike’s. That doesn’t mean we can’t think like them. Make relationships the foundation of your advocacy efforts and then design a clear, memorable, and well-thought out campaign. We may not have access to industrial printers but we can all be prepared and clever in our presentation.

The Dark Side of Professional Lobbying:

If you ask a lobbyist why the profession has such a bad reputation, they will likely tell you that they are misunderstood. For those that have integrity and a true respect for the process, this is true. However, lobbyists did not get a bad reputation for no reason. There are some questionable lobbying practices and some that are simply corrupt.

Perhaps one of the more commonly known, and widely disapproved of, lobbying practices is called “the junket” which is an excursion for the purpose of pleasure at public expense. Junkets might include all-expenses-paid conferences in luxurious locations, or expensive meals and wine. An example of this kind of extravagance is Mr. Tom Delay’s many trips paid for by various organizations. These include: 10 days in Kona, Hawaii in 2002, in which the American Association of Airport Executives reimbursed him for $5,967.28, a trip to Singapore in 2001 in which The Heritage Foundation reimbursed Mr. and Mrs. Delay’s for $8,428, and the same year the National Center for Public Policy Research paid for his and his wife’s visit to Scotland that same year with a reimbursement of $28,106.

Large organizations set aside great sums of money to fund lobbying efforts. As an example, The Pharmaceutical Research and Manufacturers of America had $150 million budgeted for 2004. It is easy to see with these examples why the public looks down on the lobbying profession. While the practices may be tolerated, they clearly carry with them an air of bribery. With such lavish gifts, it is only logical to conclude that government officials would be unable to make objective decisions in the face of such gifts.

In 2007, the Honest Leadership and Open Government Act was passed to try an address some of the corruption, like the examples above. Here are a few key points of the law as found on commoncause.org:

Prohibiting Gifts by Lobbyists

Prohibits lobbyists from providing gifts or travel to Members of Congress with knowledge that the gift or travel is in violation of House or Senate Rules.

Full Public Disclosure of Lobbying Activity

Requires lobbyist disclosure filings to be filed twice as often, by decreasing the time between filing from semi-annual to quarterly.
Requires lobbyist disclosures in both the Senate and House to be filed electronically and requires creation of a public searchable Internet database of such information.
Increases civil penalty for knowing and willful violations of the Lobby Disclosure Act from $50,000 to $200,000 and imposes a criminal penalty of up to five years for knowing and corrupt failure to comply with the Act.
Requires the Government Accountability Office to audit annually lobbyist compliance with disclosure rules.
Requires lobbyists to certify they have not given gifts or travel that would violate Senate or House rules.
Requires the disclosure of businesses or organizations that contribute more than $5,000 and actively participate in lobbying activities by certain coalitions and associations.

New Transparency for Lobbyist Political Donations, Bundling and other Financial Contributions

Requires disclosure to the Federal Election Commission when lobbyists bundle over $15,000 semiannually in campaign contributions for any federal elected official, candidate (including Senate, House and Presidential), or leadership PAC.
Requires lobbyists to disclose to the Secretary of the Senate and the House Clerk their campaign contributions and payments to Presidential libraries, Inaugural Committees or entities controlled by, named for or honoring Members of Congress.

Prohibited Use of Private Aircraft

Requires that candidates, other than those running for a seat in the House, pay the fair market value of airfare (charter rates) when using non-commercial jets to travel. (This affects senate, presidential and vice-presidential candidates)
Requires candidates for the House to comply with rule XXIII (15), which prohibits use of non-commercial aircraft.

Toughening Penalties for Falsifying Financial Disclosure Forms

Increases the penalty for Members of Congress, Senior Staff and Senior Executive officials for falsifying or failing to report financial disclosure forms from $10,000 to $50,000 and establishes criminal penalties of up to one year of imprisonment.

For those of us who do not seek a profession in politics, it is likely that these types of activities will remain obstructed from our view. However, it is important to be aware such practices exist and to understand the power of big companies and lobbyists with questionable practices.

As my lobbyist guide, Jack, told me “You win some and you lose a lot.” This is not a perfect system, far from it, but that does not mean it is not worth your time and effort. Even against big companies or fancy corporate lobbyists, the patient voice can still prevail.

The Patient Experience, Front and Center, Inspires Change

In the 1960’s and early 1970’s patients with kidney disease requiring dialysis were struggling. This expensive treatment was not covered by Medicare and had to be paid for by private insurance or out of pocket. In 1971, serious policy debates focusing on national health insurance were underway in both Congress and the

White House. During a Congressional Committee Meeting, The National Association of Patients on Hemodialysis (NAPH) was allowed to speak about the importance of insuring people receiving dialysis.

Despite urges not to by several kidney organizations, the vice-president of NAPH chose to take his dialysis treatment in full view of the committee before the meeting officially began. He was accompanied by a reluctant physician there to safe-guard the treatment and the patient. The press discovered this story and made the dramatic event known to the general public.

Some believe this brave display influenced the decision to create the Medicare ESRD (End Stage Renal Disease) Program; giving dialysis patients meeting Medicare criteria the coverage they need for treatment. Others believe the testimony of a parent of a hemophiliac child made a greater impression on congress. Either way, the fact remains: the patient and family voice was a catalyst for change on the national level

Everyone Matters in Healthcare

2010-06-20T09:35:00.000-07:00

Not "Just" a Receptionist

A friend of mine with lung disease had gotten sick enough to be evaluated for a lung transplant. When she called one of the best centers in the country, the receptionist was horribly rude to her. She was given "the run around" and became very discouraged without ever getting an appointment to see the transplant team. Over the next few days, after several unsuccessful and impolite phone calls with various receptionists, my friend was never able to get the appointment she needed or the respect she deserved. It had been such a bad experience she gave up and went to another transplant center in a neighboring town.

The center in the neighboring town did not have the same level of expertise but the receptionists were very nice. My friend was willing to work with a less skilled team in exchange for not having to deal with disrespectful receptionists.

Logical or not, this proves a major point: everyone matters in healthcare. As a receptionist, it may not feel like you have the same power as the transplant surgeon but, in some ways, you do. As the front line, the face of the institution, you have the power to make or break the initial patient experience. You are very important. You can make a patient feel safe and cared for. You can make a patient feel alienated and like a burden. You can influence our decisions just by the tone in your voice. Never underestimate the power of a kind word.

House Keeping!

Every morning in the hospital I awoke to those words: "House Keeping!" In would come a member of the hospital's house cleaning staff and make lots of noises emptying trash cans and mopping the floors. As a sick person who craved peace and quiet, it drove me nuts. I needed that to be re-framed for me.

Recently, I heard Dr. Victor Dzau of Duke Hospital tell a story about the importance of the house keeping staff. He said when he asks his hospital cleaning staff "What are you doing?" the answer he hopes for is not "Cleaning this room" but instead "Saving lives." In an environment with so many infection risks including MRSA and Staph, just to name a few, the role of the house keeper becomes crucial. They stand between the patient and a potentially deadly infection.

We all need to be recognized for our value and this includes the house cleaning staff. What do you think they level of difference might be in a person's dedication and performance if they are, A. cleaning a room or B. saving lives. I know which job description would make me feel like an important part of the care team and motivate me to work harder!

It is important to find ways to honor everyone in the system because, in unique ways, everyone really does matter. The next time you hear the words "House Keeping!" try to thank them for the important role they play in patient safety.

As Kevin Sowers, President of Duke Hospital states, "Having patients and families tell the staff what we mean to them changes the culture of healthcare."

Being an advocate doesn't only mean speaking up about what has gone wrong, it also means enforcing good practice by speaking up and telling those caring for you that they have made your life better. Everyone matter, don't forget to tell them that!

The Difference Language Can Make

2010-06-20T08:23:00.000-07:00

DNR vs. AND

A DNR (Do Not Resuscitate) form is a common component of the advanced care planning documentation. This legal, binding document states that a person does not wish to be resuscitated in the case of cardiac or respiratory arrest.

There is a movement in the hospice world to change the DNR document to an AND form. AND stands for Allow Natural Death.

The AND form serves the exact same purpose as the DNR form, so why bother with this name change?

Think about the difference in the language here.

Do Not Resuscitate. Does that leave you with a feeling that there is something that you could do, you have just chosen not to? Does it feel like you could have done more but, instead, you gave up? This language gives patients and families a mixed message.

Allow Natural Death. This reminds us that death is natural; something that is easy to forget in the emotional frenzy of modern medicine. This language gives us permission to not pursue resuscitation, a medical intervention that can sometimes lead to more complications and pain.

It is not surprising that this motivation to change the DNR terminology came from pediatric hospice professionals. It is difficult for a parent to "not do everything" and the DNR language comes with that implication. The hope is that the AND language will feel less like a judgement and give families more room to contemplate the best course of action for the one they love.

Different but Synonymous:

A similar example of how language may frame a situation can be found in actual professional titles. In recent years, hospice organizations began to distinguish comfort care from end of life care by creating a separate team of professionals called palliative care. This new language was developed as a way to comfort those who were not ready for the end of life journey--and therefore not ready/eligible for hospice--but were very ill and would benefit from a team specializing in pain management and other serious complications.

Unfortunately, over time the terms hospice and palliative care have become synonymous. When lay people are told they are being referred for a palliative care consult they usually associate that with end of life. The idea to change the language so as to create a distinction between comfort and end of life care has been unsuccessful. Patients and families tend to respond the same way to both.

So what is the solution? Some might suggest a continued effort to educate the public on the difference between palliative care and hospice. Others are advocating for a new name altogether. One possible name I have heard, "The Family Care Team," is far less technical and may be more appealing to patients and families not yet ready for hospice. No matter what, it is easy to see from these two examples that language can sometimes have a major influence on how patients and families feel about a particular option. It can even determine the success or failure of a service.

How Do You Ask Me How I'm Doing?

The way we use language can change the patient experience. In one institution, professionals have been trained to no longer initiate communication with patients in the traditional way of saying "How are you today?" In our culture, that is a rhetorical question and is usually met with the knee jerk response "I'm fine. How are you?"

In a healthcare setting, this opening interaction between patient and professional has the potential to be an important interaction for gathering data. If the primary question remains "how are you?" the patient will likely not respond with useful information. Just by training professionals to ask "How has your experience been so far?" to those patients in the hospital, the language has already greatly reshaped the value of the conversation. This is a very different question, is not rhetorical, and holds the space open for honest and important communication.

It's so simple, right? But it's so complicated. Healthcare leaders, professionals, patients, and families have to look at what has become routine language and ask themselves how a slight change in vocabulary might create a higher level of communication and sharing of pertinent information. Language impacts the way we frame things in our mind, even when we are not aware of it.

Take some time and think about other examples you have of medical terminology that hold the potential to box you in to an impression, a belief, or an expected course of action? What other language can you use to open the lines of communication and have a shred mental model with those around you?

The Professional Chain of Command: An Unofficial Chart

2010-06-17T09:47:00.000-07:00

The Chain of Command in hospital and clinical settings can be very confusing. Traditionally, the official descriptions of healthcare hierarchy is separate for nurses, physicians and other professionals. However, it benefits the patients to understand where these professions might fall together. This graphic is not based on scientific data but rather observations and opinions of professionals working in healthcare and from those receiving care. This chart is primarily modeled for teaching institutions.

Do you know the roles of all of the people (and others) included in this chart? If not, here are some definitions that may be some help.

Healthcare Administration: leaders who oversee the administration of hospitals, hospital networks, and health care systems.

Some of the titles you may recognize for the administration include: Chancellor, Vice Chancellor, President, Senior Vice President, Chief Executive Officer, Dean, Executive Director, Chair

Attending: an authorized practitioner of medicine, as one graduated from a college of medicine or osteopathy and licensed by the appropriate board. This includes:

Surgeons: a physician who specializes in surgery

Hospitalists: A physician, usually an internist, who specializes in the care of hospitalized patients.

Sub-Specialists: a physician whose practice is limited to a particular branch of medicine or surgery, especially one who, by virtue of advanced training, is certified by a specialty board as being qualified to so limit it

General Practitioner: a physician whose practice consists of providing ongoing care covering a variety of medical problems in patients of all ages, often including referral to appropriate specialists

Fellow: General Surgeons & Internal Medicine physicians training for subspecialties

Chief Resident for Surgery or Medicine: a senior resident physician who acts temporarily as the clinical and administrative director of the house staff in a department of the hospital.

Resident: a graduate and licensed physician receiving training in a specialty with 3-4 years experience, depending on area of study

Physician Assistant: certified by an appropriate board to perform certain of a physician's duties, including history taking, physical examination, diagnostic tests, treatment, and certain minor surgical procedures, all under the responsible supervision of a licensed physician

Nurse Practioner: authorized to practice across the US and have prescriptive privileges in 49 states. NPs also take health histories and provide complete physical examinations; diagnose and treat many common acute and chronic problems; interpret laboratory results and X-rays; and provide health teaching

Intern: An advanced student or recent graduate who assists in the medical or surgical care of hospital patients and who resides within that institution in the first year of residency

Charge Nurse: the nurse assigned to manage the operations of the patient care area for the shift. Responsibilities may include staffing, admissions and discharge, and coordination of patient care.

Nurses (RN): a graduate nurse who has been legally authorized (registered) to practice after examination by a state board of nurse examiners and who is legally entitled to use the designation RN.

Nurses (LPN): graduate of a school of practical nursing who has been legally authorized to practice as a licensed practical or vocational nurse (L.P.N. or L.V.N.), under supervision of a physician or registered nurse

Most of the above definitions were provided by:

medical-dictionary.thefreedictionary.com

For these and more clarification about professional titles visit this website

Not Always as Simple as It Seems

2010-06-14T09:25:00.000-07:00

Major Medical Error:

I was in the hospital when I saw a story on television about Jesica Santillan, a young woman who had gotten a transplant at a nearby hospital. At the time, I was both a recipient and awaiting my second transplant. It's easy to understand why I had a strong reaction to this story of a woman whose transplanted organs turned out to be the wrong blood type. I was horrified that such a mistake was possible and devastated for the girl and her family. An event that should have marked the beginning of her freedom resulted in the end of her life.

I was not the only one who was shaken to the core by this tragedy. The story quickly became international news. The public blamed and shook their heads. The media villainized doctors and the hospital, calling it a "bungled" transplant. Individuals and communities mourned. Everyone wondered "how could this happen?"

I'll admit, I was a sheep in the heard of people with judgments and criticism. But what I did not think about, and could not know, was what really happened and was going on behind closed hospital doors as a result. As the story rumbled on, it became a constant on television, newspapers and magazines. The case became more complicated (and lost its focus) due to the discovery that Jesica was an illegal immigrant. This only served to add to the complexity, drama and issues the public had to weigh in on.

Years later, I have a better understanding and regret my willingness to not question the media's medical witch hunt. What I did not think about then was the pure devastation, not only for the family, but for the professionals caring for Jesica. I like to joke that "it took a village" to save my life through transplantation. Jesica was no different and there were many physicians, surgeons, nurses and other personnel involved with getting Jesica to that fateful day in the operating room. Not one of those professionals had the intention to do harm. The nightmare happened to them too.

In cases like this one, there are many places along the way where errors are made. From the weather that day to the lack of an electronic data base for potential recipients, this error occurred due to a combination of system inadequacies and particular circumstances. It is easy to say after such an event to say that the system should have included a series of checks along the line for donor/recipient matches but, before Jesica, this kind of error had never happened and no one would have predicted it. It was "the perfect storm" and system issues that once seemed more like individual annoyances collided together to create one massive mistake.

It wasn't as simple as the media made it seem.

After this medical error, Jesica lived roughly two more weeks. During this time, the hospital staff worked with her family to provide the best care and attempted to remedy the mistake with a second transplant. As a part of an effort to collaborate with the family, they kept some details private and only gave information to the media as the family felt comfortable in doing so. This added fuel to the media's fire and professionals, in addition to dealing with this sad and fragile situation, also had to cope with members of the media entering the ICU in costumes and taking unauthorized pictures. Most of the staff members were able to power through this crisis but some could not bear seeing their faces on TV in addition to processing the emotions of such a painful event.

There may be no comfort for Jesica's family in knowing that this mistake was the beginning of a major overhaul of procedures and protocols for this hospital. The media will likely continue to frame the incident as a soap opera with villains and victims. I, however, am able to see this with different eyes and hope you will too. Jesica's death was nothing short of a modern day medical nightmare. At the same time, no individual involved was solely responsible. For this we must blame the faceless system and ask, what is wrong with the procedures and protocols? How can they be changed?

As the hospital website states; "None of us will ever forget the profound sense of loss with the death of Jesica, and none of us wants to relive an outcome such as occurred here. We are committed to providing our patients with the very best available medical care with compassion. We are committed to learning from this event, improving the system, and sharing that information with others. And, we are committed to earning the continued trust of our patients. Jesica's memory compels us all to accept nothing less."

Major Medical Reorganization:

Give me a tool and I want to use it. Show me a tool for healthcare systems and I tap my foot impatiently and ask "Why aren't they using it?" It doesn't always work that way.

For an individual to implement a tool, philosophy or technique, it takes education and the decision to incorporate it into their life. For a family, it may take further discussion and some practice but, with commitment from all involved, the implementation can take place fairly quickly. For a large system, like a medical center, this is not as simple as education, discussion and commitment. It takes detailed planning and reorganization. In fact, it is so complex, there is an actual science dedicated to it.

Systems science is an interdisciplinary field of science that studies the nature of complex systems in nature, society, and science. It aims to develop interdisciplinary foundations, which are applicable in a variety of areas, such as engineering, biology, medicine and social sciences.

When I learned in the TeamSTEPPS training about "bedside handoffs," I got very excited. By definition, a handoff is the transfer of information (along with authority and responsibility) during transitions in care. Handoffs include the opportunity for the incoming professional to ask questions, clarify and confirm information about the patients they will be caring for. The bedside handoff takes this process and moves it to the bedside, allowing the patient and family to hear what information is being passed and offer any needed clarification or addition pertinent information.

Shift change is documented as being a key area for communication break down which can result in errors such as; inaccurate medication prescriptions, inaccurate evaluations, longer lengths of stay, and increased use of laboratory tests. When I heard about bedside handoffs I imagined two nurses by my bed discussing my case and was thrilled to have one more way to meaningfully participate in my own care. I immediately began making the patients and families I worked with aware of this option and encouraged them to request a bedside handoff if they were not already implemented in their particular hospital.

Months after I had begun my Bedside Handoff Crusade, I had the opportunity to hear a high ranking leader discuss bedside handoff implementation in his healthcare system. He began to discuss the lines that needed to be drawn and professionals that did and did not need to be targeted for bedside handoffs. Critical staff members include more than just nurses. Bedside handoffs were important for residents, attending physicians and respiratory therapists too, just to name a few. How many professional handoffs should a system expect a patient to participate in during the course of a day? How realistic is it to expect such a high volume of professionals to be able to organize themselves around many beds on many floors before leaving for the day? What about the professionals who leave at night, should patients be woken up to participate in shift change discussions in the middle of the night?

It isn't as simple as I made it seem.

Sitting and listening to the discussion about mapping, training and personnel shortages, my head started to spin. For me, as an individual, the answer remained the same: I will continue to advocate for bedside handoffs. Wait, let me clarify. I will continue to advocate for the nurses changing shift to do bedside handoffs. As for all of the other key players, I humbly respect the complexity of this system-wide discussion and am anxious to hear how the leaders find the best practice for using this useful tool.

A Need for Change Comes with Some Ramifications:

A 15-month study by an Institute of Medicine (IOM) committee reviewed the relationship between residents' work schedules, their performance and the quality of care they provide.

"The Institute of Medicine study provides the clear evidence to prove what we have long-believed is true—fatigue increases the chance for human error," said AHRQ Director Carolyn M. Clancy, M.D. "Most importantly, this report provides solid recommendations that can improve patient safety, as well as increase the quality of the resident training experience."

After this study, changes were made.

1. Limiting the resident’s work week to 80 hours

2. Limiting continuous time on duty to 24 hours (with 6 additional hours to complete all tasks)

3. Requiring 24 consecutive hours off out of every 7 days

While this structure seems perfectly logical and reasonable to the average person (80 hours a week is s till a lot!), this is major change in the ways hospitals and medical training centers have traditionally done business. This new rule has not been easy to implement. There are issues this new rules brings up that may not be obvious to patients and families. Here are a few:

1. Because increasing patient loads, the reduction in residency work hours has forced programs to create new and inventive ways to schedule patient coverage. This is not always as reliable as everyone would like it to be.

2. While patients and families understand the dangers and difficulties that come with residents working long hours, in some circumstances, the new rules may cause friction between staff and patients/families. The reduction in hours means more faces coming and going which feels like less consistent care.

3. These rules impact the medical schools as well. Because of these changes, it may be necessary to increasing the length of residency training as well as the number of medical residents. This would represent a major financial burden to an already strained healthcare system.

So, once again we see, it’s not as simple as it seems.

This very logical and humane decision is an obvious benefit to both the physician in training and the patients. This change signifies a dedication to decreasing medical error but does not come without its own set of complexities and organizational re-arranging.

As patients and families, we are most often experiencing healthcare within the walls of a clinic or hospital room. What we may not be able to see from the exam table or hospital bed is the large picture. Even when a non-controversial decision is made, it may have unpredictable fallout. The cause and effect can be extremely challenging to manage.

It is our job to keep providing feedback, keep letting the leaders know what is working and not working, while remaining aware that it may not be as simple as it seems. When the system isn’t working, we have to keep finding ways to have our voices heard and keep squeaking until we get the grease. Ideally, we will remain aware that Rome was not built in a day and view System Advocacy as a long-term project. Partnering with a whole system can require patience but when policies are implemented that make our care better and safer, I hope you’ll feel like it was worth the wait.

Following a different model

2010-06-13T08:14:00.000-07:00

Crisis is often our catalyst for change. When it comes to healthcare, we must strive to not follow this model. We must work to be proactive.

As both patients and professionals, we worry about outcomes. However, all we can control is our preparedness, our level of awareness and our behavior.

We must learn the required skills and information before we need them. We must practice our conversation techniques before we have to have the conversations.

Effective healthcare advocacy requires a new model; a model of facing difficulties before they happen.

One Psychological Strategy for Partnership

2010-06-13T07:51:00.000-07:00

Most healthcare professionals begin their careers, value their careers, and stay in their careers because of The Noble Cause; the desire to help people. At the same time, this noble cause is an ideal perspective that, due to the human limitations, can not be sustained at all times. We must remember that the intention for good is at the root of our caregiver's motivations and yet, we may benefit from appealing to their humanity.

To expect our professionals to always have the energy and emotional stamina to be coming from the place of The Noble Cause is unrealistic. Try putting yourself in their shoes and ask yourself, "If I were my healthcare provider, in this situation, what would be in it for me?" How can partnering in this moment make their life easier, give them valuable professional experience/data, or ensure a reduction in medical error?

This is just one representation of the phrase "meeting people where they are." Sometimes, we may achieve our goals by slipping into someone's else's shoes and looking at a situation strategically rather than idealistically. Even the most loving and compassionate care providers get tired and that's ok. We can meet them where they are. Can't we?

The First Circle of Advocacy: Call to Action

2010-06-13T07:22:00.000-07:00

Turning the Rig Around:

Healthcare culture is shifting. Who is at the front of it, do you think? No, it's not the government, even with the new changes in healthcare legislation. It's not the many non-profits out there trying to help patients. It's not even the healthcare providers dedicating their lives to helping the sick. Patients and families are leading this shift in culture.

Who else is more invested in the need for changes in healthcare? Who is more insightful on what works and what is lacking? Who else more desires open and effective communication with healthcare professionals? Who is crying out and asking the community for support, for understanding? Who turns to the government and says "look at my life, is this how our country wants to treat the sick and dying?"

Cultural shifts do not happen overnight. The changes that have taken place, are taking place, and will take place are not like a speed boat. They won't happen by one quick choice to turn the wheel change direction. Instead, these changes are like a large oil rig in a small waterway. The turn has to be made so slowly it might, at times, be impossible to see with the naked eye. It has to be done so carefully so that little or no damage is done in the process. This change happens slowly, but it is changing.

What Leading Looks Like:

If you are a patient reading this, you may be thinking "How can I be a leader? I don't have the training my doctors have!" If you are a family member you may wonder "How could I possibly take on a role as leader when I am so overwhelmed just caring for my loved one?" If you are a professional you may be skeptical and worry "What if all of my patients try and 'lead' my practice, won't that be chaos?"

"Leading" may be a misleading term. It is important to set as a foundation of this discussion that no one is asking a professional to not trust their own judgement, training, skill, talent, and experience. This is not about having patients take over hospitals, ignore the opinions of their teams, or have families demanding unreasonable plans of care. At the same time, this is not about holding tightly onto old roles and habitual ways of interacting. Moving forward into the age of Participatory Medicine, this is about become more mature in the way we approach healthcare.

Call to Action:

I have never met a patient or family member that didn't think healthcare needed an overhaul. From bedside manner to medical errors, patients and families are rarely shy in sharing their "war stories" and expressing their disbelief at personal medical fiascoes. This sort of discontent can be used one of two ways: it can cause us to lose faith in the system and assume a defensive posture or it can inspire us to be the harbingers of change.

If we want to have our voices heard, we must take our roles seriously. When the question "What medications are you on?" comes, it is no longer acceptable to answer "The blue one and the little pink one." We need to know our medication names (generic and brand), the dosages, the reason we take them, and the potential interactions and side-effects.

If we want to have our voices heard, we must take our roles seriously. Instead of talking about the dissatisfaction we have about a certain interaction or particular individual, we must talk TO the person responsible. Partnership can not happen when the parties involved are not relating directly to each other.

If we want our voices heard, we must take our roles seriously. Some healthcare professionals fear giving patients and families too much access to information. We must be respectful of what we do not know. At the same time, we can help professionals see that when we learn how to read valuable data, we become stronger partners in care, not the hysterics they theoretically imagine us to be.

If we want our voices heard, we must take our roles seriously. We must ask of ourselves the same things we demand of our professionals: clear, concise communication, compassion, and respect. We must hold ourselves to a similar standard that we hold our professionals: to work in partnership, as a team. We must work through frustrations and personality issues for the best healthcare experience possible.

We must become humble, polite, persistent squeaky wheels. We must become responsible partners in our own care.

System Advocacy: The Challenge for Patients and Families

2010-06-06T08:58:00.001-07:00

How do we know what we don't know? How do we find out what we need to find out if we don't even know it exists? How do we ask the questions without knowing what we are looking for?

This predicament can be found in many areas of life. It also arises in many areas of patient advocacy. Perhaps it the most prevalent in the second circle of advocacy: System Advocacy.

Within any healthcare system, there are a few potential challenges:

1. Lack of Information: While health systems work primarily the same way, subtle differences may trip you up. Variations in language, protocols and programs may be cause for confusion and frustration. More so, you may miss the opportunity to take advantage of a valuable service because you didn't know it existed. With these subtle but meaningful differences in healthcare systems, getting the important information we need can be a challenge. It is vital we find ways to be system advocates and get our needs met no matter which system we happen to be navigating.

2. Patient Safety: Since the Institute of Medicine's 1999 study placing the number of US deaths per year due to medical error in hospitals at 44,000 and 98,000 overall, hospital systems have placed a large focus on patient safety. Great strides have been made with valuable programs, changes in philosophies, and general awareness. Systems are working hard to make healthcare a safer endeavor, but there is still room for improvement. It's time now for patients and families to join the fight and partner with their providers and their systems to improve quality care and decrease medical error. Without patients and families on the team, there is a limit to the success systems can have with regard to decreasing medical error. The time for partnership in the name of safety is now.

Potential Challenge to Understanding a Valuable Tool:

In the New Age of Healthcare, one can find many groundbreaking and inspiring initiatives within healthcare systems. Some of these initiatives will be "in plain view," patients will interact with these initiatives directly in their care. Other initiatives will be behind the scenes but will benefit patients and families just the same.

The problem arises when there are programs in place that can benefit patients/families but only if they are aware of the program and how it may be of help to them.

In 2004, the Institute for Health Improvement launched six initiatives to improve patient safety. Among those was the invention and implementation of a Rapid Response Team. This Team is a small group of highly trained specialists usually including a physician, nurse and respiratory therapist. There may be variations in which additional professionals, such as social workers or nurse practitioners, are members of the RRT.

The purpose of an RRT is to provide a safety net for patients, families and healthcare professionals. If a patient is experiencing changes in their health that are concerning, the RRT can be called in to assess the situation. This is most commonly beneficial for patients outside of the ICU who have just had surgery or are at risk for a cardiac event.

Sometimes a family member will be able to pick up on a subtle change in their loved one's skin color or tone of voice that a professional, not knowing the patient as well, could miss. Since family members often spend the most time with the patient, they are more closely monitoring their loved one and have the potential to catch a serious health episode before it becomes a crisis. However, it may not always be easy for families to convince the healthcare providers that what they are witnessing deserves immediate and critical attention.

If a family feels like their concerns are not being taken seriously or responded to quickly enough, they may be able to call the Rapid Response Team themselves. This is only true, obviously, if the hospital has an RRT, the family is aware it is available to them, and the health system allows a non-professional call to be placed to the RRT.

Hospitals that have Rapid Response Teams welcoming of family calls will have different ways to "publicize" this aspect of patient care. Some may post signs in the hospital rooms. Some may rely on the nurses to inform the family upon admission. Some may simply assume the patients and families understand this option is available to them.

The challenge here is the same in any scenario where a relatively unknown aspect of care has been implemented: making sure the patients and families know about, understand and feel comfortable using the RRT. In this case, assuring patients and families understand RRT is no easy task. This is a relatively complicated concept that requires a somewhat in-depth discussion of when it is appropriate to use, how to use it and who can use it. A button on a lab coat or a sign on the wall will most likely not be sufficient for patients and families to grasp and be comfortable with the RRT model.

Another challenge in the Rapid Response Team model, and other programs like this one, is a lack of easily recognizable language. Health Systems will often take a program like this one an adapt it to fit their philosophies, protocols, and staff/patient population. This can mean tweaking the actual implementation. It can also mean changing the name so that it is unique to the health system.

In the case of the Rapid Response Team, a healthcare system may use this model under a different title such as the "Advanced Clinical Assessment Team." On other health systems one might find a complete overhaul of the title such as "Condition H." While this language may be clear to healthcare professionals, these titles may not be recognizable to the average person.

In cases like this one, even if patients and families come into the situation with knowledge of the role of a Rapid Response Team there is now an added layer of distance and possible confusion. By renaming it, it requires education or an orientation for something previously understood by a different name. In today's fast paced healthcare, we can not be confident that healthcare professionals will have time to explain this vital information to patients and families. In times of illness, worry, and overwhelm, we can not rely on patients and families to read and comprehend written materials given to them.

While it is obvious that programs like this one are both needed and appreciated, one has to wonder why health systems use language that is less accessible to the public. In our busy healthcare systems, it can be a challenge for professionals ti find the time to really explain the programs that are available to patients and families.

As a system advocate we must:

Pay attention to the subtler opportunities like signs in the hospital room and buttons on lab coats
Ask direct questions about what programs are available to us
Get involved with councils and advisory boards within our system to help professionals think through better ways to get this type of vital information to the patients and families who can benefit from it

Patients Partnering for Patient Safety:

Physicians and other healthcare professionals face a dilemma: the paradox of patient desires. On one hand, we want full disclosure and on the other hand we only want to hear good news. This is not a conscious phenomenon, both come from equally valid places.

Because being sick (or loving someone who is) carries with it such a profound feeling of being out of control, we want to be at least be in control of the information. "I may not be able to control what is happening to my body, but at least I can understand what is happening and all that is being done to treat it." With this kind of comprehension, we can feel like we have some power and participation in our own illness process. If we are kept in the dark and are missing information that later is quite relevant, we might be angry at our providers for not keeping us fully in the loop.

At the same time, being sick (or loving someone who is) is like standing on an ever-moving sandbar. One minute the earth feels steady and there is hope that the tides have ceased in shifting the ground beneath our feet. The next minute, an unexpected wave has taken the sand away and left us floating, hoping to find our footing again. We listen to our physicians differently and when we hear words like "but" or detect a change in vocal tones, our hearts jump into our throats. We are on pins and needles and sometimes, we don't want to (or just can't) hear bad news at that moment. The water is rising, the sand bar is moving, and we fear we may drown.

This is a tough dichotomy for professionals. In a system where there are real dangers and in a circumstance where things can shift and change on a dime, how can they be expected to navigate this paradox well? Perhaps part of the answer comes in both parties letting go of any idea that this can be done well (without the ability to read minds or have ESP.) Perhaps part of the answer comes in asking patients and families to have compassion for the professional's dilemma. Perhaps part of the answer is continue to train our professionals on effective communication.

There is another possible piece to this equation: preparation.

In aviation, there has been a big focus on safety since World War II. Getting passengers where they are going as safely as possible is an obvious priority that requires detailed check lists and other safety measures. It is the history and diligence of the aviation industry that has inspired those in medicine to take a closer look at their model and attitudes. It is the aviation model of safety that provides some clues as to how to address the patient paradox discussed earlier.

In aviation, the ego of the pilots has been trained to put safety above all else. The annoyance of passengers going through security has to be ignored in order to serve the greater purpose. As advocates focused on safety, perhaps we could benefit from this tried and true model.

We can become our own patient safety officers. We can watch and observe those around us. We can learn ways to speak up when a doctor doesn't wash his hands, when a phlebotomist does not sterilize our port before drawing blood or when a nurse is interrupted while counting out meds.

To become our own personal patient safety officer we must:

1. Learn the safety risks to look out for
2. Embrace techniques (in this book) for addressing a safety concern
3. Practice our safety observation and communication skills

Plane Ole Crashing

2010-06-06T08:26:00.000-07:00

I was sitting on the plane with notebook and pen, jotting down thoughts I had for my book in progress. We had not yet taken off and the stewardess was going standing in the aisle showing us how to use our seat belts and where to find our flotation devices. She pointed above my head to where the oxygen masks would drop down in the case of decreased cabin pressure.

I was doing my best to tune her out and concentrate on my chapter on patient safety. After all, I had heard this so many times I could practically give the stewardess's shpeel myself. At that moment, a brain light bulb went off and I looked around the cabin at my fellow passengers.

She was saying things like "in the case of emergency..." and talking about "water landings." Wait a minute, she was talking about what would happen if we CRASHED. Why were the people around me not panicking? Why was everyone so calm? Why was I so calm?

Perhaps it is because we had been in enough planes to know an emergency like the ones being described was unlikely. Perhaps we were a group over very optimistic, positive thinkers. Perhaps, it was because what she was saying was nothing new.

We were desensitized to the stewardesses crash instructions because we had heard them over and over. We knew what to do. Did that mean we would not be scared out of our minds if the plane ever began to fall from the sky? Of course not, we would not be so calm then. Did it also mean that we had been trained sufficiently so that when the oxygen masks fell we would no to place the yellow mask over our nose and mouth and place it first on ourselves and then on children? Yes, I think so.

In healthcare we work hard to avoid the unpleasant topics. This is perfectly understandable, of course. Illness is intrinsically scary and we instinctively seek to not add to that emotional weight. While this approach may be helpful in the short term, it can be harmful in the long run.

What if we began educating our patients and families as soon as they got on board? What if, even before serious or chronic illness, we talked about advanced care planning? What if we starting training to be effective advocates before we went into the hospital or had a medical crisis? What if we were able to reach a place of preparedness long before we had to place the oxygen over our nose and mouth?

What if were were ready when illness hit?

This is my hope. This is where we are heading. This can happen if professionals and lay people agree to embrace the aviation model of safety.

Redefining Good

2010-06-06T05:52:00.000-07:00

As children, we are told were are good when we are quiet and do as we are told.

As employees, we are considered good when we are quiet and deffer to the expertise of our bosses.

As patients, we are told we are good when we are quiet and don't question or treatments or those who treat us.

As advocates, we are good when we are not quiet, speak up, ask lots of questions, and (when appropriate) choose to not follow orders.

Being an advocate goes against the grain. In order to find our comfort zone as a patient advocate, we must first redefine "good."

Patient Safety Call Out

2010-06-05T12:05:00.000-07:00

The Duke Hospital Helicopter Pilots have an important and sometimes dangerous job. They fly off of roof tops to go help very sick people in other facilities needing immediate and fast transportation to a major medical center. Sometimes they fly out to get life saving organs for soon-to-be transplant recipients. After a major accident, they may fly out to help the victims.

In addition to the inherent nature of their job as first responders and skilled healthcare professionals, there is an added layer in the expertise they must possess to be a helicopter pilot. During times of inclimate weather or other pilot safety threats, they have to make tough decisions. Given the importance of their job, it may be difficult to consider aborting a fly out. However, safety must be honored.

The Duke Helicopter Pilots have agreed upon a simple and concise phrase if they feel it may be too dangerous to proceed with a flight:

“This is stupid!”

Pretty clear, huh? That stops the line for sure!

Some nurses follow this model with another phrase:

“I need clarity.”

At some hospitals patients are given tools, like yellow cards, to signal they perceive a safety issue without having to say anything.

In my time teaching workshops, participants have offered their own patient safety call out. A few examples of those include:

“Whoa!”

“I don’t like this.”

“Stop!”

So, now it’s your turn. What will your patient safety call out be?

What is Wrong with this Picture?

2010-05-30T11:40:00.000-07:00

I was excited to sit in on my first real healthcare reform committee meeting. North Carolina Senators were discussing some State initiatives for the healthcare budget, project funding, and policy issues around mental health and other health issues. I was interested to see the process, hear the discussions and be a part of the "audience."

My lobbyist tour guide, Jack, and I arrived early and took some of the first seats, ideal for a great view of the whole room. We watched people filter in and most had several people to greet. Serious conversations about bills that needed attention mingled with light-hearted conversations about children, vacation, and "finding a new career." Few people in the room were average citizens, like me. Primarily the room filled with professional lobbyists, the representatives, and their sponsored pages.

With no mental effort, Jack pointed out to me the major players in the room. He provided the organization(s) they lobbied for, their common position on their particular healthcare issue, and several key personality traits. It was fascinating but something in the back of my brain was itching. I continued to scan the room for a familiar face. After all, this was a discussion on healthcare and I had been around the block long enough to know a good amount of the "big wigs" in local healthcare.

None of the big wigs I knew were there. How could we be discussing these things without those in the field, those living these issues, weighing in? Where were the practicing professionals? Where were the head of the coalitions? Where were the advocates who watch over the benefit of their clients? They were not there, they were working.

It struck me in that moment what an insulated world this place of government truly is. The professionals pushing the agendas are not the same professionals living the experience of healthcare; from a professional or patient point of view. These conversations were lacking. They needed the input of these leaders. Something was wrong with this picture. There is a big, important disconnect between those making the policies and those living within them.

Political Advocacy for Beginners: Helpful Definitions

2010-05-30T11:16:00.000-07:00

Coalition: Alliance of groups united for a cause. Some coalitions are independent; others who lobby Congress are affiliated with lobbying firms. (Examples: Coalition for Affordable and Reliable Health Care, End of Life Coalition, Pediatric Healthcare Coalition). Coalitions are required to disclose their members in their Lobbying Disclosure Act filings, per provisions in the Honest Leadership and Open Government Act.

Constituent: A resident of a district or member of a group represented by an elected official, One that authorizes another to act as a representative; a client.

Grassroots: Term used to describe action with a wide level of citizen engagement. Examples of grassroots advocacy include a union or association encouraging its members to contact a Member of Congress on a particular issue, typically with a particular policy objective in mind. Examples of other popular grassroots actions include letters to the editor, attendance at rallies, or signing petitions.

“Grassroots lobbyist”: This person is a “citizen lobbyist.” (See definition for “Grassroots,” above). Organizations such as the Sierra Club or the Heritage Foundation encourage their members to contact their Congressman on an issue, write letters to the editor, sign petitions, or attend rallies. These citizen lobbyists do not need to register under the federal Lobbying Disclosure Act if they only engage in grassroots activities. However, some states do require the disclosure of grassroots lobbying.

Lobbyist: Person who advocates on behalf of himself or a client to pass a law or to make changes to a bill being considered in a federal or state legislative body, or to help shape policy in the executive branch and its regulatory departments. Lobbyists can come from either the private sector or from a legislative affairs department in a federal agency. There are two types of lobbyists: grassroots and professional. The House and Senate includes in its "Guide to the Lobbying Disclosure Act" a definition of a lobbyist as: “any individual (1) who is either employed or retained by a client for financial or other compensation; (2) whose services include more than one lobbying contact; and (3) whose 'lobbying activities' constitute 20 percent or more of his or her services during a three-month period.” If this is the case, then this person must register as a lobbyist under the Lobbying Disclosure Act.

“Professional lobbyist”: According to the Lobbying Disclosure Act (LDA), this refers to a person who is compensated by an outside client or by his employer to lobby the government. This person typically engages in direct contact with elected officials.

Within this category there are two different types of lobbyists:

•

In-House lobbyist: This person is employed by an organization to lobby on behalf of its own interests. Examples of organizations that would employ in-house lobbyists: AARP, National Rifle Association, U.S. Telecom Association.

•

Outside (or contract) lobbyist: This person is employed by a lobbying or consulting firm and is retained by an outside organization to lobby on its behalf.

Branches of Government:

The Legislative Branch makes laws for State Government. It is made up of the Senate and the House of Representatives, which together are known as the General Assembly. The Legislature meets biennially and all members are elected for two-year terms.

The Executive Branch of government enforces laws made by the legislature. The head of this branch is the Governor, who is elected every four years. Along with the Governor, the Executive Branch also includes the Lieutenant Governor, the Council of State, and many State agencies.

The Judicial Branch interprets what our laws mean and makes decisions about the laws and those who break them. The Courts of the Judicial Branch are split into three divisions, the Appellate Division, the Superior Court Division, and the District Court Division

The role of the United States Congress is explicitly defined and limited in the United States Constitution. The 10th ammendment states, "The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved for the States respectively, or to the people." The Congress is comprised of two chambers:

Political Advocacy for Beginners: Lumping

2010-05-30T09:50:00.000-07:00

In order to represent we the people, the people have to be put into boxes. As lobbyists and politicians hammer out issues and how to turn them into policies, generalities must be made. People are put in to categories and decisions are made based on what seems best for that particular "demographic." This poses many challenges for those making the laws, not least of which is how to break down the demographics into a manageable number of boxes. With such a large number of people being represented, there are many,many boxes. This, however, does not change the fact that these boxes may be too large.

In the time I was observing the senate, I witnessed several glaring cases of what I have labeled as "lumping." One discussion involved the rights of pharmacists to dispense, or not dispense, needles. The argument was being debated about "needle users," referring to both illegal drug users and diabetics. We had been lumped by our need and our activity with no consideration as to the purpose of the needle use.

It is important for healthcare advocates to understand lumping. While it is understandable that there can not be boxes for every person and every circumstance, this method should be monitored and noted. While some of the issues facing those with mental illness and drug addition may have some overlap, do they have enough overlap to lump them together? From an experiential perspective, the answer is "no" but they are often seen as the same for the purpose of policy-making. Similarly, those with chronic illness are lumped together with geriatric individuals and those who are blind and deaf are lumped in with the chronically ill.

Looking at these demographics from a purely procedural perspective, these lumpings might make sense. Looking at the actual experience, however, there are some significant differences. These differences make this demographic lumping cause for concern. While, as a chronically ill person, I may have some of the same long-term needs as someone with advanced age, I also have a higher investment in recovery and being active. If policies are developed with geriatric people in mind, how much focus is going to be put into integrating into the work force and other avenues for productivity? We face different issues, have different goals, and need different kinds of care. Lumping can be dangerous for those with chronic illness living by the rules set for those with advanced age.

Lumping is an inevitable part of the political process. Lines have to be drawn somewhere to represent large groups of people. If those groups are not paying attention, this inevitability can negatively impact lives. It is essential that political activists keep an eye out for how the boxes are being organized. If you are about to be negatively impacted by lumping, that is the time to use your voice and help the policy-makers see why the categorization is inaccurate and detrimental to a whole group of individuals. While it may seem obvious to you, this distinction may not be obvious to them. Remember, they are seeing this from a policy perspective. It is your job to help them see it from the real-life perspective.

Time Out for Cuteness

2010-05-25T09:02:00.001-07:00

The canine love of my life, Jenny, enjoys a day at Doggie Day Care. All together now: "Awwwww!"

"Battle Metaphor" repost with new ending

2010-05-25T08:34:00.000-07:00

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."

When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.

A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."

I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I don't want to be called a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"

I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:

"I'm scared!"

"I don't know how to handle this!"

"I don't know what to say!"

"I can't believe that you are so sick! I can't even believe this is happening!"

"I want you with me as long as possible!"

In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.

Crazy things do happen. People recover from things, sometimes to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Is it realistic to think people might be interested in learning more helpful ways to offer support? Is it justified that patients may wish for a different kind of encouragement or should we just be happy someone showed up at all?

Let me be clear: I am not trying to be critical of people who use The Battle Metaphor. In this culture, to have someone willing to offer support in any way, shape, or form is a huge gift. I have not written this to accuse anyone of doing something "wrong." I have written this in an effort to look at our common language under a microscope and ask if we have a better alternative. I would rather you use The Battle Metaphor than say nothing at all.

That said, it is my opinion that a more effective alternative to The Battle Metaphor is to use "I" statements instead of "You" statements. So, as an example, instead of saying "You can't let this illness beat you" you could say "I want you to recover from this illness so badly!" This is likely a more authentic approach and does not "ask" the patient to "do" anything. Some other examples of replacement I statements might be:

"I am here for you."

"I am thinking of you constantly."

"I miss you."

"I am so sad that you are sick. I wish I could fix it."

"I want the best for you."

This is a touchy subject. Some people don't want to be "censored" or made to feel like they can say something wrong. I don't blame them and this is not my intent. During times of illness, people can feel lost and confused about how to react, what to say, and how to offer support. It's my belief that this does not have to be a mystery. There are generalities that can be made when communicating about illness and grief. Just as those in the grief world advise people to avoid phrases like "He's in a better place now" or "It's for the best," patients can offer their perspective on the most helpful ways to be supportive in times of sickness and end of life.

Let's not question the intentions. Let's assume love is the motivation behind any of these interactions, Battle Metaphor or otherwise. We need not question the heart of the person speaking but we can seek to understand each other more. As we pull back the curtain, we can learn from each other and make our communications even more meaningful.

Yes, Your Voice Matters

2010-05-24T11:54:00.000-07:00

Getting Going:

The first challenge to "getting going" as a political advocate is simple to identify. Even in thinking about political advocacy, the question "Where do I start?" can be enough to discourage a person from going any further. The good news is there is an easy answer to that big question.

Start anywhere.

First, get clear about what general or specific areas you are most interested in. For the purposes of this blog, we will assume health advocacy is at the top of the list. From there, your interests may become more specific and include topics like Medicare reform, Organ Donation policy, or research dollars for a specific illness. Whatever your area of concern, don't worry if you have no idea who to talk to about it. Just start anywhere.

1. If you don't already know, learn who represents you. Each state has their own website listing members of the general assembly and what areas of the state they represent. In the internet age, we have a great advantage to "starting anywhere." To find your state's website you can google "(Your) State Legislative Website Directory" or "(Your) State General Assembly)."

You can also start by visiting www.ncsl.org (National Conference of State Legislatures). There you will follow the "Resources and Directories" menu, follow the link to "State Legislative Websites" and click the page's link to this directory.

Once you find your way to your state's general assembly website, the formats may vary slightly state to state. Look for menus related to "Representation" and follow them to specific fields asking for your district, zip code or county. The websites will provide you with the names and contact information for House and Senate members meeting your criteria.

2. Contact your representative by dropping by, making an appointment for a face-to-face, calling or emailing. Speak to them or to their assistant. *Rest assured, Legislative Assistants are the gatekeepers to people and information. They can help you!*

3. Don't worry if the first person you contact is not interested in or involved in your particular area of concern. Remember the rule is Start Anywhere. When you reach the representative or, more likely, their assistant, tell them briefly about what areas of politics you hope/plan to become involved in or learn more about. Follow this short introduction with the question "Can you direct me to someone who is currently working on the issues I care about?" If they don't know, they will likely know someone who knows. It may be a phone tree, but you will get to the right person eventually.

Does My Visit/Call/Email Really Matter?

The short answer is : Yes! by law all visits, calls, and emails must be logged. Your input is counted.

The longer answer is : It Depends!

There are ways to more or less effective when reaching out to representatives. It is said:

1 face-to-face is worth 10 phone calls

1 phone call is worth 100 emails

It takes 7 contacts by a constituent before they become recognizable

The more personal you can make it, the more effective your advocacy will be. Get to know your representatives and let them get to know you. For maximum effectiveness, they need to know you by name.

The average state representative is considered to be part-time and makes very little income. At fist glance this may seem noble but, in practice, it dramatically narrows the demographic of individuals capable of taking on such a position. For most people working for under $15,000 a year (the salary quoted in May of 2010) with a wildly unpredictable schedule is simply not an option. This unusual circumstance primarily leaves room for individuals who are retired or independently wealthy to take on the role of house or senate representative.

These individuals often come from a background of privilege and many have lived within the world of politics since birth. While this demographic certainly warrants respect, it also warrants caution. For a person of color or a person living with chronic illness, it is fair to wonder if this demographic is equipped to speak on behalf of a world they likely do not know intimately. When you ask "Who represents me?" the answer is: You and people who have walked a similar road. We can not depend on those in office to comprehend the nuances of our experience. Our stories must be told. Our stories can influence political views. Our stories matter.

The bottom line, my friends, is we have a voice in the political arena. Once we are armed with all of the information we need and prepare ourselves to be effective in the political arenas, there is no reason why we can't be a part of the change! Political advocacy is waiting for you, if you so choose. We need your voice.

Calling All Healthcare Professional Bloggers!

2010-05-22T08:11:00.000-07:00

I am writing a new book and am looking for stories told from all perspectives of the healthcare system.

I am looking for stories from healthcare professionals about a time when the healthcare system protocols provided a barrier for you to perform the best patient care. I want to know how it made you feel as a professional.

More generally, I am looking for any professional's account of the emotional experience of caring for sick and dying. As examples, I want to learn more about how you cope, what ticks you off and how you grieve.

I'm not looking for new pieces necessarily, I am hoping you will let me publish something from your blog alongside your blog address.

Please spread the word to the healthcare professional bloggers you know. Thanks!!

Pulling Back the Ropes: Humanizing Government

2010-05-22T06:28:00.000-07:00

The first day I shadowed Jack, a North Carolina lobbyist, the itemized budget for the next year had just been released that very morning. This would inform the rest of our day.

Jack handed a copy to myself and my sidekick, an intern in his association. It was long, heavy, and looked like Greek to me. This wasn't surprising, however. I knew nothing about this governmental system of ours. I never paid attention in elementary school when we learned about "how a bill becomes a law" and, as an adult, it appeared far too complicated and corrupt for me to care. It seemed to me that my voice could never be heard over the loud chaos of our governmental machine.

This day, with Jack and his intern, I was in the belly of the beast. It was a crash course in how similar politics are to high school and how effective one citizen could actually be. As we crossed the grounds of the State Legislative Building and the nearby legislative office building for the first time that day, my eyes were confused.

There was what I expected; many older, Caucasian men in suits who looked important or, at least, like they had important places to go. I recognized one president of a major hospital and was told he was being accompanied by "his lobbyist." While there were many of the characters I expected to find, there were also large groups that stood out. The three most distinctive were the large clusters of Harley guys decked out in full motorcycle gear, the Arts Council group respectfully linked by a large yellow button stuck to their shirts, and the women in Dr. Seuss clothes beside those with children's books taped to their heads.

At first, these sights were disorienting enough that I assumed these people were part of a play downtown, got lost and ended up in the wrong place. Of course, this was not true. It was my first taste of what Jack called "the theater" of government.

For the rest of the day, I would have the pleasure of meeting and talking to some of these characters. All of them were there to address a particular line item or two in the newly released budget. These were community lobbyists who had a mission and sought out the appropriate representatives to plead their case. Some groups were highly organized, with full color flyers, statistics, and appointments with many representatives throughout the day. Others relied on existing relationships with certain politicians and were happy to wait around all day to get a few minutes of face time. Some relied mostly on the costume to get them in the door.

Two things became clear to me on this day:

1. We, the people, do have a voice. We just have to learn how, where, and when to use it. (That's what I hope my book will help you do!)

2. For every line item on the budget, there will be individuals, groups and lobbyists with a convincing argument for why that money should be appropriated differently, not cut, or increased.

The state budget I saw had numbers so long I got dizzy. With nearly twenty billion dollars on the table, it would seem like there should be plenty to go around. Hardly. For every program that is trimmed, there are real people effected and fighting to maintain their jobs and the stability of their lives. For every argument for or against a budget line item, there are compelling personal stories, ethical considerations, and financial implications. The bottom line is, there is no easy answer. Ever.

The theme of many of my talks and approaches to healthcare revolves around this concept of "pulling back the curtain." This calls for humanizing the experience in order to understand the true complexities of human emotion and systematic limitations involved. If we want to move forward, we can not remain still, standing in one spot waiting for others to fix the problems to meet our particular satisfaction. We must be willing to levitate and look down at the entire picture from all angles. The purpose of this, of course, is to find ways to identify the flaws and capitalize on the opportunities while working together, as human beings who happen to be patients/family members/professionals, for the best experience possible.

What I was shocked to discover on the grounds of the legislative building is that this goal of "pulling back the curtain" is not at all different for politics. The flaws in our governmental systems are not hard to see. Corruption, self-interest, and the business of political "scratch my back now and I'll scratch yours later," is as obvious as the nose on your face. What also becomes obvious, however, is the genuine grey area of so many of the issues at hand.

One small example of a grey issue I saw that day was a bill trying to be passed that said a person had the right to use deadly force if a threatening stranger was on their property. This seems logical, we all should have the right to feel safe in our home. What this bill did not include or foresee was the risk it posed to some "strangers" who also have the right to be safe. Social workers and child psychologists, for example, are sometimes mandated to visit a home unannounced as a part of child abuse investigations. If a home owner perceives this professional may take their child from the home, they then pose a "threat." Does this give them the right to use deadly force on this professional? One would hope the state would say "no" but at the time of my visit, they had not recognized this as a problem with the bill.

For those who choose to become politically involved, frustration awaits. It is a messy process. However, a part of that mess is the need for, and lack of, first person accounts. The patient voice is needed. No, it is required. First, we have to understand the system and where our voices can be heard. Once we have done that, nothing should hold us back from telling our story. Our stories MUST be told. Let's pull back the big red ropes and walk into our own government buildings ready to be an essential part of the process. Let's make a difference when and where we can. Let's humanize government, shall we?

Time Out for a Longer Look at the "Battle" Metaphor

2010-05-19T15:31:00.000-07:00

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I am not a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

"I'm scared!"

"I don't know how to handle this!"

"I don't know what to say!"

"I can't believe that you are so sick! I can't even believe this is happening!"

"I want you with me as long as possible!"

Crazy things do happen. People recover from things to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Can we find a new metaphor?

I have some thoughts but none worthy of proposing publicly yet. I will keep thinking but in the meantime, would love to hear your thoughts!

Little Patient in a Big Medical World

2010-04-20T13:01:00.000-07:00

It was one of my first opportunities to talk to healthcare professionals. It was Medical Grand Rounds at a major hospital. I had been invited with a chaplain friend via an official letter. We had to submit our CV for approval. (First, I had to look up "CV" on google because I didn't know what that was.) This was a big deal and I felt important, nervous, intimidated.

I prepared my remarks for the upcoming talk carefully. I was ready to talk about life as a patient and the importance of my relationship with my healthcare providers. I was ready to talk about grief and coming to the end of life. I was confident in my content.

My chaplain friend, Heidi, and I had been invited to a Residents' Lunch prior to the Grand Rounds. This is where we would meet face to face with the resident who had invited us to speak. We would also have an hour to chat with the internal medicine residents about whatever was on their minds.

When we sat at the head of the table, there were about 15 pairs of eyes on us. The Chief Resident, the man who invited us there, stood for introductions. He began with Heidi. Her introduction was long, detailed, and glowing. He went all the way back to her high school and undergraduate days, detailing her degrees and hobbies. He gave a lengthy description of her work within the hospital and what value she lends. It was an impressive and generous introduction, clearly showing he had done his "homework."

When it came time for my introduction, he gestured at me and said "And this is Tiffany Christensen." With that, he sat down. I was stunned and a bit stung. He had my CV information and he knew my patient background. This was not a case of not knowing, it was a case of not caring. I felt like a lump of meat.

Through the rest of the lunch, all questions were directed at Heidi. I did my best to put on a smile, shrug off what had just transpired, and participate in the conversation. Each time I chimed in, however, my comments were met with dead air or another remark directed at Heidi.

When it was time to present at Grand Rounds, it was difficult to keep my head up when I walked into the auditorium. My competitive spirit is all that kept me going. I had an even stronger drive to show professionals the value of the patient voice.

When Heidi and I finished our presentations, all of the comments and questions were directed at me. One older physician remarked that he usually fell asleep during grand rounds and this was the first one in a long time that kept him on the edge of his seat. I was later met with many wonderful comments in private. Grand Rounds had been a success. I had weathered the storm of one professional's bias and proven to myself that my voice, my experience, did have some relevance to practicing professionals.

Today, I make my living speaking to consumers and professionals about various aspects of healthcare. Every time I stand before a group of healthcare professionals, I am met with the same insecurities I felt that day at Grand Rounds. My lack of medical training, my lack of a degree of any kind, comes up on a fairly regular basis. I dread the pre-presentation chats because invariably someone will ask my background and I am met with the same look in the eye as that chief resident. It can be a painful time before I make my presentation because my value is under scrutiny.

I am just a little patient in a big medical world. Trying to be heard. Trying to speak up for what I see on a personal and systematic level. I am just a little patient looking up at the towering healthcare system and hoping to make a dent. Each and every time I stand in front of a room of doctors, nurses and other healthcare providers, I wonder if I will win them over or fall flat on my face. Usually I win them over. Sometimes, I fall.

There are lots of us. Patients with rich insights stemming from arduous experiences. We have so much to say and so much to teach. There are still professionals who resist us. There are many who look for ways to integrate our messages into their practice. There is a new movement called Participatory Medicine. Some of us, patients and professionals, are ready to partner and meet each other as equals.

While I have to battle my nerves and insecurities in my work, professionals may face other challenges. I recently gave a presentation beside a physician currently leading the way in Participatory Medicine. An audience member asked what he would say to one of his colleagues who resisted the idea of partnering with patients. His response impressed me.

He said, "Every day I go to work, I have to battle my own ego. I know things would happen faster if we did them my way. I could plan my schedule if I didn't have to take other opinions into account. But I have made a choice to practice a different way. I have to remind myself that this is not about me, my schedule, my way. This is about the patient. So every day, I choose to put aside my ego and listen."

We are getting there. This healthcare culture is changing. Patients and professionals are working through their respected challenges and finding a way to the middle. I am so grateful to be a part of this exciting time in the evolution and revolution of healthcare!

Top 10 Things I've Learned after having Double Doubles

2010-04-16T06:31:00.000-07:00

I leave today for Indianapolis to speak about lung transplant to cf social workers and registered dietitians. The diet part is easy -- TPN is yummy! (just kidding) :)

This is a handout I am using at the conference. Just thought I'd share....

April is Donation Awareness month! Are you a registered donor? Why not?

In the spirit of a beautiful woman, Eva:

Love to my donors and their families.

Love to my transplant buddies who have said goodbye way too soon.

Love to those who wait for life to begin anew with a donor heart, liver, lungs, kidney....

Love to those who have transplanted organs who still walk this journey of balance, strength and carpe diem.

Love to those professionals and family members that make the transplant journey an option and then, a reality.

Top 10 Things I've Learned after having Double Doubles

1. One of the most difficult circumstances for any human to bear is the unknown. Waiting for transplant is the ultimate unknown. Waiting can be the hardest part of the whole process.

2. The time waiting for transplant is probably the longest period in a person’s life when they are not “in the rat race.” The rat race will begin again after transplant, if the outcome is a good one. Many people hope and work towards having this level of “nothing to do”; they call it a sabbatical. If patients can think of the waiting as a sabbatical, they can give themselves permission to use the time for inner work, planning, and a favorite (or previously unexplored) leisure activities.

3. Transplant is a major event that is very mysterious until you go through it yourself. Because of all of the emotions that go with this process, being sick, and the surgery, it is normal to cling to every word of the people who have previously been transplanted. Listening to other patients may help avoid potholes but be one has to be careful: some patients might be potholes. Compare not. No two experiences of transplant will be the same. Even for those who have had the transplant twice, the experiences are completely different. Even having the same body/mind does not equal having a similar transplant journey!

4. This is a time when patients and families need the most support. Some people will be a surprise because they will step forward and some will be a surprise because they step back. Patients and families may feel like the ones who step back have abandoned them and let them down. More than likely, those people love the patient/family very much and are ill-equipped to handle watching someone they care for go through such a difficult time. It doesn’t feel like love, but it is.

5. Even for the most peaceful patients and family members, there will be hard days along the transplant road; pre and post. Sometimes, it can be difficult to share the deepest emotions with the people in the “inner circle.” Sometimes patients/families need someone slightly removed from the situation to speak with openly and honestly. Social workers and therapists can be an invaluable resource on this road.

6. Don’t forget that you are living today. Waiting for transplant often feels like life is in a holding pattern. In many ways, it is, but the mind, the spirit and, relationships continue to evolve and grow, even if the body becomes weaker. Remaining conscious of That Which is Important can increase quality of life.

7. Emotions are impermanent and can be influenced by your body’s struggle. For example, some people have moments when they feel like they would rather “give up.” This is normal for someone who is dealing with end stage illness and the feeling will more than likely pass. Patients must be allowed space to cry or feel blue while keeping in mind that infections, fatigue and shortness of breath can be physical triggers for an emotional reaction. Knowing this might take the edge off. It is important to try not to take these emotions too seriously right away. If a patient can’t get out of the funk, that’s not unusual and they can consider various ways to treat this—medicine, acupuncture, therapy etc…

8. The transplant experience can be complicated. Bumps are expected for at least the first year. There will be a learning curve about the new meds, symptoms etc. It seems overwhelming but it will eventually become as routine as brushing teeth. For the first year, patients should be careful not to make many definite plans until things have stabilized. The have to be reminded that any symptom, even if it seems minor, should be reported to the team. There are surprising nuances to post-transplant symptoms. All the while, it is important to focus on goals and remember “This too shall pass.”

9. There are no guarantees for anyone, before or after transplant. Some people choose to cope with this through hyper-vigilance with germ management. Some people live life in fear of chronic rejection or missing a dose of immun-suppressants. Some people focus on their perception of a solution ie. Exercise, meditation, “living a normal life” etc. There is nothing wrong with any of these things, however, the only thing we can do is live a life we love so that no matter what happens, we have no regrets.

10. I am not illness. There is a part of me that is never sick, never tired and never scared. Separating “me” from my body is very helpful in coping with illness. I can still enjoy life, no matter my physical state of being.

Can you relate?

2010-04-11T18:47:00.000-07:00

I heard this song at a concert this weekend and it brought tears to my eyes. I sure remember days like the one in this song.

System Advocacy: The Challenge for Patients and Families

2010-04-06T08:00:00.000-07:00

Within any healthcare system, there are a few potential challenges:

Potential Challenge to Understanding a Valuable Tool:

As a system advocate we must:

Pay attention to the subtler opportunities like signs in the hospital room and buttons on lab coats
Ask direct questions about what programs are available to us
Get involved with councils and advisory boards within our system to help professionals think through better ways to get this type of vital information to the patients and families who can benefit from it

Patients Partnering for Patient Safety:

Trust

2010-04-04T17:52:00.000-07:00

I believe in the timing of the universe.

I believe in the fog that keeps me from seeing the horizon.

I believe in the sun that makes me squint my eyes.

I believe in the distraction that hits me when I am attached to concentration.

I believe in the creativity that comes when I feel empty of ideas.

I believe in the interruption that stops me in the middle of great progress.

I believe in the progress that blinds me to what matters in life.

I believe in the open parking space in a sea of cars.

I believe in the unexpected traffic jam when I am in a hurry.

I believe in the serious illness that hits just when my life has begun.

I believe in the second, third and fourth chance when I knew time had run out.

I believe in the love that wanders up just when I thought I was alone.

I believe in the loss of the person I thought was my forever.

I believe in the search for myself that ends with appreciation for others.

I believe in the friend who I never knew I needed until the gales of laughter.

I believe in the life that began so small and turned into endless possibilities.

I believe in the death that will come just when I have played my part.

I trust. I trust that there is no "good" and there is no "bad." I trust all of it is a part of this learning we call living. I trust that my heartaches teach me more about the joys. I trust that my joys will lead me to greater risks, bigger losses. I trust in the timing of the universe. I know I may not understand, but I trust.

I trust in the tears that come with the losses. I trust in the anger that comes when life seem too cruel to bear. I trust in the joy I feel when things "go my way." To trust does not mean to not experience the consequences of the timing of the universe. I trust that my reactions too are all a part of the timing.

Trust is my connection to The Divine.

April is Donation Awareness Month!

2010-04-01T11:49:00.000-07:00

April is Organ/Tissue Donation Awareness Month! Have you registered as a donor? Does your state have an online registry? Is the heart on your driver's license first person consent? Does your family know where you stand?

Organ/Tissue donation saves lives. Consider recycling yourself.

Over 100,000 people are waiting right now for transplants in the US.
18 people die every day waiting for organs that didn't come in time.

Will you think about it, educate yourself, and share your decisions?

Here are some important things to know, thanks to Carolina Donor Services for this info:

Myths and Misconceptions

The largest barrier to organ & tissue donation
» Uninformed public
» Misinformation
» Gossip/Urban Legends

Myth No. 1.
If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life. They'll remove my organs as soon as
possible to save somebody else.

Reality.
When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care
has nothing to do with transplantation.

Myth No. 2.
Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered.

Reality. Although it's a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Myth No. 3.
Organ donation is against my religion.

Reality.
Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a
member of your clergy. Another option is to check the Carolina Donor Services web site www.carolinadonorservices.org which provides religious
views on organ donation and transplantation by denomination.

Myth No. 4.
I'm under age 18. I'm too young to make this decision.

Reality.
That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of
organ transplants, and they usually need organs smaller than those an adult can provide.

Myth No. 5.
I want my loved one to have an open-casket funeral. That can't happen if his or her organs or tissues have been donated.

Reality.
Organ and tissue donation doesn't interfere with having an open- casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation.

Myth No. 6.
I'm too old to donate. Nobody would want my organs.

Reality.
There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself
prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.

Myth No. 7.
I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues.

Reality.
Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs
and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.

Myth No. 8.
Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest.

Reality.
The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all
celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

Myth No. 9.
My family will be charged if I donate my organs.

Reality.
The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal
go to the transplant recipient.

Addressing Helplessness: Intro to "Four Circles of Advocacy"

2010-03-28T08:54:00.000-07:00

Being sick feels like being out of control. You are pushed in a wheelchair going at a speed and route not determined by you. You wait for other people to bring food, medicine, water, and, for some, even oxygen to breath. You are pulled, walked, held and rolled by people healthier and stronger than you. Some days this may feel like the vulnerability of childhood. On worse days, this may feel like your humanity has been replaced by a body made of meat for others to poke and prod. You look around at this life with pills, appointments, and less ability to "do" and wonder how you will find yourself in the rubble.

Loving someone who is sick brings with it a profound sense of powerlessness. You watch them wince in pain or curl up in their suffering and you have no remedy for the suffering. They disappear into their discomfort and you have lost sight of how to be with them, how to connect. Nurses and doctors come and go with news, medicines, and the potential for answers while you struggle to keep track of the often-changing picture of illness. You struggle to hold your life together in the "well-world" while giving all of yourself to the one in the "sick-world." As you straddle these two different landscapes, sometimes it feels you can never do enough, say the right thing or find the strength to sustain the complexity of this life. You look around at your life as a caregiver and wonder how you will find yourself in the illness tornado.

Being a professional healthcare provider means having tremendous responsibilities and staggering expectations from patients, families, and the healthcare system. You walk in the room and you have no way of knowing if you will be the rockstar, the villain or the saint. You have your fingers on the pulse of the most important, meaningful and emotional moments of people's lives. Sometimes you have concrete answers and sometimes only opinions. Almost always, the eyes in the room beg for hope. Sometimes, your hands are tied by things out of your control like insurance, protocols or politics. Sometimes, even when you have the best of intentions and all of the training in the world, things do not go as you would wish. You look around at your personal life and the lives of those you treat and wonder how you will find balance in the complexity of giving.

The healthcare field shifts and matures. Patients become more knowledgeable and empowered. Families and friends have more resources available to take on the emotional, practical and medical aspects of loving someone with illness. When we remove the bandages, empty the hands of cold cloths, and take off the white coats, we discover the humanity. We discover we all want the same things but we may be unsure of how to help each other in the process. No matter what role we play in the healthcare journey we all want acceptance, healing, and empowerment.

For the most part, we all must discover our personal path to acceptance, healing, and empowerment. One person may find acceptance by thoroughly exploring the medical research while others may find it through private meditation or another spiritual practice. For some, healing may only be defined by the physical result of a treatment while others may discover healing outside of the physical outcomes. Empowerment might be found through honing better communication between patient and caregiver while others may seek to take their voice of experience to a broader audience.

The guide I am writing will be penned for all of the players in our modern day healthcare drama who wish to be empowered or facilitate the empowerment of another. Through the Four Circles of Advocacy, a wide variety of personalities in various stages and stations will find philosophical and concrete ways to approach the type of advocacy that resonates with them the most.

The Four Circles of Advocacy are:

* Individual Advocacy

* System Advocacy

* Community Advocacy

* Sate/National Advocacy

Individual Advocacy takes place primarily in the privacy of the clinic, exam room or hospital. The foundation to individual advocacy is embracing and becoming confident in our ability to carry through on the Three Keys to Patient Advocacy: Knowledge, Awareness and Boundaries. We have to trust the patient's experience, think outside the box, and find ways to work together for the best healthcare experience possible.

System Advocacy may take place within exam rooms and in hospital beds but it also expands beyond the individual experience. System advocacy looks at trends within the healthcare system, the way a given healthcare system designs their policies, and what expectations the healthcare leadership sets up and establishes as their system's healthcare environment. For system advocates, this can range from examining patient waiting times to problem-solving for patient safety risks. While system advocacy directly impacts the individual patient, family and caregiver experience, this type of advocacy is broader and potentially effects the entire population participating in this health system's care.

Community Advocacy primarily reaches beyond the local healthcare systems to fill in the gaps where specific help is needed. This kind of advocacy might come in many forms but, in general, seeks to take an individual's insight and apply that understanding in a broader way through civic engagement. For many people, empowerment means reaching out to those who have further to go on the same learning curve they have just maneuvered past. Sometimes, engaging the community can be healing for those who did not have the outcome they hoped for and desire a way to improve experiences for others in the future. Community advocates might start a non-profit, hold fundraisers, or shed light on a health disparity previously not understood locally. While community advocacy, like system advocacy, will likely directly impact the family/caregiver experience, this type of advocacy reaches beyond healthcare itself and delves into questions about quality of life and the need for compassionate community participation in matters that will one day touch us all in some way.

State/National Advocacy has the potential for the most wide-spread impact. Some people feel most empowered when they can take an individual experience and use it to motivate change within our legislation, a major foundation, or the future of medical research. For many people, it is also the most overwhelming and intimidating form of advocacy. To become involved on a state or national level, advocates must have a certain level of knowledge about how the large organizations or governmental bodies are run and where a "civilian" may best find the optimal place to be heard. Like all of the circles of advocacy, state/national advocacy will directly impact individual experiences but, as we witnessed in March of 2010, reform is a slow and controversial landscape. This circle of advocacy is for those people who seek large change and are not afraid to find their way through the complicated maze of politics.

Advocacy is as unique as the people who practice it. There is no right way to find empowerment, just as there is no right way to discover acceptance and healing. We all must take the challenges that lay before us, as patient, family, or healthcare professional, and find our own meaning and purpose. This book is not a guide on choosing how to be an advocate. It is a doorway to discovering the options that lay before us as we face illness, yearn for change, and hope for a better tomorrow.

It is my hope that no matter which advocacy circle feels most empowering and meaningful to you, you will embrace it and allow yourself to feel satisfied in knowing you are a part of the medical revolution. So, to patients, families, and healthcare professionals, I wish you happy advocating. Let's explore the 4 Circles of Advocacy.

A different type of "why me?"

2010-03-27T07:34:00.000-07:00

Tomorrow is the 6th anniversary of my second transplant. Last year, I searched www.unos.org for survival statistics and learned that 23% of people getting second transplants live to see 5 years post. That number both terrified and inspired me. I wanted to do battle with that statistic, as irrational as that is. It literally took my breath away that I was in such a minority.

I suppose data searching is becoming a tradition on my anniversaries as I did it again this morning. I learned that while 1586 people will make it 5 years post after a first transplant, only 28 people will survive 5 years after a repeat transplant.

Tears sting my eyes with the shocking nature of these numbers. I am so lucky.

And yet I can't help but think back on all the friends I have loved and lost. In my gratitude I also am struck with the sentiment "why me?" Why should I be one of the 28? Why not Susy, Gabe, or Paul? Is this survivor's guilt? I am no more worthy.

Thank you universe, for letting me live beyond where the statistics stop counting. Thank you for letting me see another day.

Thank you donor family for your gift in your hour of grief and my 11th hour.

May I do this gift justice. Overwhelming. Just, overwhelming.

Completely humbled,
Tiff

Changes, Pain and Growth

2010-03-24T11:10:00.000-07:00

It's been almost a year since I've written on this blog. During that time, my life has been turned upside down. My marriage ended, my beautiful dog died, and I loved and lost a wonderful CF soulmate. I have explored grief on deep levels over the past year, and continue to do so.

The world soldiers on and I having been trying to keep up. Some days I am almost successful, many days I have fallen behind.

Spring is here and it lifts me up to see the sun and evidence of renewal. I am hopeful I will find acceptance and healing in all of 2009's losses. I am hopeful I will remember the lessons that this profound grief has been teaching me.

I feel a part of a new club, one that understands how oblivious the world can be to the devastation of grief. One that understands that a person's internal world is often compromised and shut down in order to "stay strong," push grief aside, and give the world what it asks for. I hope I will keep this perspective and remember to reach out my hand to others when they are in the darkness.

During my time of losses, I also had moments of creation. I have written my Patient Advocacy Handbook. This workbook on individual advocacy is on sale now in honor of upcoming advocacy and advance care planning events! Get them now before this offer expires (for real). The extended workbook on community, system and political advocacy is due out this summer.

I hope to visit this blog more and share my life with you again. I have missed the connection and exchange of ideas this blog allows. As you can understand, sometimes we need to retreat into our privacy. That's where I have been over the last year. I thank you for respecting that and am grateful for those who have been supportive. I am grateful to the universe for allowing me such depth of experience.

This Sunday, I celebrate 6 years post second transplant and the following Sunday makes 10 years since my first transplant. I am lucky, this I can never lose sight of. I am grateful.

With lost of love,
Tiff

Heroes of Hope!

2009-07-30T11:05:00.001-07:00

So honored to be a Hero of Hope.

I need your stories!!!!!

2009-06-26T05:10:00.000-07:00

It seems, these days, each time I make a post I begin with apologizing for how long it has been since my last post.

Perhaps it is time for me to stop apologizing and just say that I will do my best to post as often as possible. March and April were so busy (not complaining) that it took all of May and most of June for me to recover. I am finally starting to feel human again.

This is my down time for the year and it is filled with writing a new book. Not the book I have promised in the past; that had to be put on hold until 2010. This book is called "Finding Your Voice: A Patient Advocacy Workbook" and I am honored to say it is grant funded.

I got the idea to write this book last year when I was giving a workshop at a local retirement community. Two residents were saying that they were uncomfortable with the fact that they didn't have a solid patient advocate nearby; like a child or a spouse. The people who would be advocating for them would be friends and acquaintances and so they doubted the advocates' abilities to know the finer nuances of their wishes. It is my hope that this workbook will provide a resource for friends, acquaintances and even strangers to understood not only the "check the boxes" wishes of the book's owner but to also understand their experiences, beliefs and goals. If we understand these three things, we will be a good advocate.

A secondary but equally important function of this workbook is to allow people filling out the pages to learn more about themselves in the process. Often we have general ideas about things but, when prompted, realize we haven't thought it through all of the way. Sometimes, it takes being asked a question to see your beliefs in a new way. So, while this book is designed to be a tool for the reader it is my hope and belief that it will also be a clarifying and affirming journey for the owner.

Finally, a third purpose to the workbook has emerged and that is to look at all of the ways that we can function as a patient advocate. When we use that term, for most of us, it conjures up images of a person pounding on the nurses station and demanding answers. That is one kind of advocate, one I call "The Tornado Advocate." While this is a valuable person to be or have on your side, this is only one sample of what it might look like to be an effective advocate.

Perhaps you are the person who sits by the bed to comfort the patient in times of fear or overwhelm. Perhaps you are the person who is "behind the scenes" and deals with insurance, bills and other paperwork. Perhaps you are motivated to function less at a personal level and prefer to be involved on a community, state or national level. This are just a few more snapshots of patient advocacy roles; all of them are equal and all of them should be respected.

This workbook will be looking at many different advocacy styles and activities. The book will be broken into "advocating for oneself," "advocating for a child," "advocating for a spouse, sibling or friend" "advocating for a parent," and "advocating for a stranger." In each of these sections there will be stories, tips, refection questions and a place to write action items.

I have already interviewed two wonderful people with great advocacy stories. One woman told me the story of her daughter being diagnosed with CF and not receiving quality care from her local hospital. With determination and passion, this mother did not blindly accept the bad news her doctors gave her but sought out every avenue she could find until she found better care. Today her daughter is 16 and a cheerleader. She attributes her daughter's life to the fact that she got better care and did not accept what she felt in her gut to be incorrect information.

Another woman I spoke to told me about the catch 22 she finds herself in: she makes $1,000 a month which is too much for prescription aid but her co-pays on two medications alone are $850.00 and $400.00. Inspired by her own need and the thought of other patients now and in the future, she has taken her case to the state and national level. With a meticulous and tireless letter writing campaign, she has gotten the attention of her state and US senators. The wheels turn slowly, but she is turning them.

These are just the kinds of stories I need! Do you have any stories about patient advocacy on a personal, community, state or national level? If so, I would love to set up a time to interview you for the workbook. Without your stories, this book simply won't happen.

What are you waiting for? Email me! tiffc73@gmail.com

Thank you as always for your support and generosity. Life is good for me and I hope it is for you too.

New Adventures: Online Workshops!

2009-05-29T10:05:00.000-07:00

As some of you may know, I am lucky enough to have a grant this year which funds some of my workshops and talks.

Next month I am trying something new: online seminars.

I have decided to make my my first webinar available only to CF patients, families and friends. Due to cross infection issues, CF folks can not really come together for seminars anymore and this is my solution to that unfortunate reality.

I have provided the webinar information below. If you would like to pass this info along to other people in the CF Community, I would greatly appreciate it.

Thank you!!!
Tiffany

Project Compassion Presents: "Finding Your Voice in the Healthcare Maze" facilitated by CF patient and two-time double lung transplant recipient, Tiffany Christensen.

In each session, the primary focus will be advocating for yourself or someone you love in a healthcare setting. Secondary topics include advance care planning and the myths and truths of organ/tissue donation.
The webinars will be 3 Saturdays in a row: June 13th, 20th and 27th. They will take place at 3:00pm EST.

Cost:

For CF patients, friends and families within North Carolina, there is no enrollment fee. This webinar is being underwritten by a North Carolina grant and there is no cost.

For CF patients, friends and families within the USA but outside of North Carolina or for those in Canada, the cost is minimal.

To attend all three sessions: $25.00

To attend two of the three sessions: $20.00

To attend one of the three sessions: $10.00

To register visit: fyv.webtrain.com and click on "Browse Upcoming Events" and click "register now" under each session you wish to attend.

You may also register by sending an email directly to Tiffany at tiffany@project-compassion.org. Be sure to include contact information and the sessions you wish to attend.

To pay for registration (only for those outside of North Carolina), please visit:

https://www.merchantamerica.com/projectcompassion/

and click on "Register for the CF Finding Your VoiceWebinar."

To learn more about Tiffany, visit www.sickgirlspeaks.com

Questions may be sent directly to Tiffany at

tiffany@project-compassion.org

New Video!

2009-05-19T09:21:00.000-07:00

Quick Update and another Top 10

2009-05-07T06:32:00.000-07:00

Hello Dear Blog Reading Friends,

Once again this blog has sat silent for a long time while my life took on a hectic pace. I always feel so guilty for not writing and I miss the opportunities to share the things I'm thinking about. I write notes down on scraps of paper to revisit later but it just isn't the same as when the thought is fresh in my head!

I'm not complaining. Things have been busy because my work continues to gain momentum. Honestly, when I take the time to think about that, I find it hard to believe. I feel so lucky.

I want to tell you about the highlights of my travels but I have a meeting to prepare for in just a few minutes. Hopefully, I will have time to write more this weekend.

In the meantime, a facebook friend wanted to see the list of my Top 10 Tips and Tricks for Navigating the Healthcare Maze. You can find that below....

That reminds me to mention, I do a lot of my connecting these days on facebook with pictures, status updates and checking in on other people's comings and goings. If we aren't friends on facebook yet, look me up!

Until next blog, BIG GRATITUDE to you.

Tiffany's Top 10 Tips and Tricks for Navigating the Healthcare Maze

1. Knowledge, Awareness and Boundaries are the first three keys to effective patient advocacy. Gone are the days of relaxing and letting the doctor call all the shots— Be a humble, polite, persistent Squeaky Wheel!

2. Here’s the greatest irony of illness: when you are at your worst is exactly the time when you need to be at your best! If you aren’t up for self-advocacy, bring some one who can do it for you.

3. Being sick is difficult. Be kind to yourself and find ways to process your emotional needs while catering to your physical needs. Healing can happen no matter what the physical outcome.

4. There is power in the Written Word. Use signs whenever you can. Always take notes when getting medical instruction. Keep a list of your medications so you don’t have to repeat yourself.

5. Know the medical hierarchy! If you have a problem with a caregiver, it pays to know where to find their boss!

6. Seek out other patients who have traveled a similar road, they may help you avoid potholes.

7. When you seek out other patients who have traveled similar roads—be careful who you listen to—they may be a pothole.

8. If you go to a surgeon, they will want to do surgery. If you go to a medical doctor, they will want to give you medicine. If you go to an acupuncturist, they will want to give you acupuncture. What do you want to do?

9. Always ask direct questions. Never assume that your doctors are telling you “the whole truth and nothing but the truth” unless you have looked them in the eye and specifically asked what you want to know.

10. Illness is difficult but, if you look hard enough, you might find it also offers opportunities for growth, gratitude and joy.

Ten Opportunities of Illness

2009-04-16T08:59:00.000-07:00

Illness is one of life’s most difficult challenges. There is no denying the impact physical disabilities can have on one’s professional life, relationships and self-esteem. All of these issues require exploration and nurturing.

At the same time, there is a side to illness that we often ignore: The gifts.

While we must acknowledge the feelings of loss and frustration that inevitably accompany illness, we may also open up to the opportunities of growth, understanding, and gratitude that illness can provide.

• I Am Not Illness: We know that the body and mind have a strong connection, and there is power there, but let’s also connect with the separation between body, mind, and spirit. What does it mean to “be sick”? Is it possible to suffer physically while suffering less (or not at all) emotionally/spiritually? Is there a differentiation between “healing” and “medicating”? While illness often takes up much of our lives, we are not illness. Our body is sick, yes, but there is a place within us that is never sick, never scared and never tired. Illness gives us the rare opportunity to find this place deep within us and discover our identity in a whole new way.

• Taking Control: If you spend enough time in healthcare settings, it is almost impossible to ignore the value of patient empowerment through patient advocacy. Through our own knowledge, awareness and ability to set boundaries, we become our most powerful caregiver. In a room of experts, we are the foremost authority on our own body and experiences. By embracing this role, we have an opportunity to take control even when life feels completely out of our control.

• Still Body, Forward Mind: As our bodies become less able, we can find strategic ways to use limitations as a motivation to explore the unexplored. As an example, illness may allow us to take a risk, working with paint or putting pen to paper, as way to express our feelings and discover new understandings of the self. While this may not have been something we would have considered as a fully healthy-bodied person, we may now find joy in unexpected activities and practices.

• Self-Help: Coping with pain and other physical discomforts can be overwhelming. Are there other techniques, outside of Western medications, that can aid in decreasing discomfort? Perhaps we might discover meditation or acupuncture can help us with pain, therefore decreasing the need for more “chemicals” getting added to the mix. If nothing else, we must find ways to alleviate our emotional discomforts to help ourselves have the highest quality of life possible.

• Why Me?: People facing illness often find themselves in a crisis of faith. “Is God punishing me?” is a common question people ask. Illness may provide us an opportunity to explore our faith deeper and more authentically. It may even open doors to new spiritual traditions. For all of us, even if the objective is not to find a way back to faith, we can all find a connection with That Which Is Important. Ideally, one might even discover a greater purpose to their suffering.

• Equal Opportunity Compassion: People dealing with illness may feel depressed and cheated. This is normal reaction and should not be judged. However, when the time is right, it is possible to transform self-pity into compassion for the self. From there, it is a natural step to experience true compassion for others. This is a fulfilling life choice that can be made despite any physical limitation. Once you have experienced your own suffering, you have increased your capacity to care for those suffering with similar or different challenges.

• Loving Through Illness: Difficulty can make people grow apart or grow stronger together. It is undeniable that illness can put a strain on relationships. People will react very differently and sometimes those reactions are painful. What is important to know, is that despite illness, relationships remain a two way street. Armed with compassion for ourselves and those we love, we can examine our own conscious or unconscious expectations; honoring the various roles people play during illness and work to build, not tear down, bridges.

• Transforming The Illness Identity Crisis: There is something that happens when a person becomes sick and they lose their sense of purpose. Those around the patient have difficulty knowing how best to relate to them as they no longer have the same activities and interests. Tiffany refers to this as The Illness Identity Crisis. Illness provides us with the opportunity of realizing who we are beyond our self labels. We can strive for a deeper knowledge of self. By giving ourselves the task of creating internal projects to better ourselves, we are defining our purpose and connecting with our evolving identity.

• Saying Goodbye My Way: We all must leave this earth at some time and in some way. There is one undeniable benefit to being sick: the opportunity to plan ahead. When a person is taken unexpectedly, there is no time to say goodbye or talk about their wishes. Illness allows us to talk about final desires (advance care planning) and even planning how we would like to be memorialized. There are healing qualities of writing our own obituary and eulogy, even if we are not facing terminal illness. This type of “framing” will help us live a more purpose-driven life. Above all, we have the opportunity to express to our friends and family what we want them to know and remember about our love for them.

• Gratitude without Limits: After a person comes to a place of acceptance with illness, the next step is moving into gratitude. Illness gives us the gift to consciously embrace the unique experiences of living on earth. As we continue to open our eyes to That Which Is Important, we can find appreciation for life in places that most people would never even notice. Through our struggles, we may discover ways to use gratitude as a source of joy, despite any illness we may be dealing with.

As I drove today, I thought...

2009-03-28T14:33:00.000-07:00

Compassion can not happen in the presence of judgment.

If you criticize yourself internally, you will criticize others externally.

Until you stop judging yourself, you will not be able to be a compassionate person.

How will you stop the internal critic?
How important is it to you to be compassionate to your fellow humans?
Can you live in a world with only observation and no judgment?

Tiffany's Trust Mantras...pick as needed!

2009-03-24T13:23:00.000-07:00

Today, as I feel this pain, I worry that I will never have a day without pain again.
I remind myself that on earth nothing is permanent and this pain will not always be with me.
I trust that this state of pain will not last forever and I will again have peace.

Today, as I feel this grief, I worry that I will never be happy again.
I remind myself that on earth nothing is permanent and this grief will not always be with me.
I trust that this intense grief will not last forever and I will again have peace.

Today, as I feel so alone, I worry that I will never have the support I need again.
I remind myself that on earth nothing is permanent and I will not always need this support and other people will not always feel so distant.
I trust that this feeling of loneliness will not last forever and I will again have peace.

Today, as I feel so scared, I worry that I will never be able to overcome this fear.
I remind myself that on earth nothing is permanent and I will find a way to handle what is filling me with fear, or it will change and no longer be so scary.
I trust that this state of fear will not last forever and I will again have peace.

Today, as I face the unknown, I worry that my life will never be the same again.
I remind myself that on earth nothing is permanent and it will change no matter what, even if this current unknown turns out to be benign.
I trust that this state of instability will not last forever and I will again have peace.

Today, as I feel so bored, I worry that I will never feel invigorated again.
I remind myself that on earth nothing is permanent and I will become engaged in life again.
I trust that this state of boredom will not last forever and I will again have peace.

Today, as I feel this fatigue, I worry that I will never have a day when I have passion for life again.
I remind myself that on earth nothing is permanent and I will have energy again.
I trust that I will not feel tired forever and I will again have peace.

A Letter to my donor family

2009-03-12T10:47:00.001-07:00

To My Dearest Donor Family,

I was driving down the road today and the sun was shining and I had the radio on full blast. I was singing at the top of my lungs and couldn't help but notice how strong my voice was and how effortless is was to sing. In that moment I was struck with such joy and gratitude that my eyes welled up with tears. I have a lot of moments like that one.

I was born with a genetic illness called cystic fibrosis. This disease primarily effected my lungs, causing constant infections and difficulty breathing. By the time I was 21, my illness was end stage. I was dying and I hadn't even been able to graduate from college. If it hadn't been for the gift of my first set of donor lungs in 2000, I would not have lived to see my 27th birthday.My life changed completely that day; I did not know what it felt like to take a deep breath until I had a lung transplant.

My life changed again only 2 years later when the doctors told me that my lungs were failing and I was getting very sick very quickly. I was devastated. I couldn't understand why I had been given this amazing gift only to have it taken before I had the chance to do the gift justice. I had not made a positive impact on the world in the way I felt someone with my good fortune ought to do.

Through a series of unusual events, my doctors decided to put me on the list for a second lung transplant. At that point, I had less than 6 months to live and no one was sure I could hold out until a donor became available.

On March 28, 2004 a precious life was taken from you and a precious gift was given to me. I was 30 years old and I had been given one more shot at making a meaningful life. Your loved one's lungs seemed to be very compatible with my body and I had a relatively easy recovery from my second transplant. As soon as I woke up in ICU I began planning for how I would honor you, your loved one and my loved ones by giving back to people who's lives have been touched by illness and loss. Since the moment I left the hospital, I have done everything I can to not waste a moment of time.

There are no words to express the gratitude I feel for the profound and compassionate choice you made on such a dark day in your life. I can only imagine your pain and am in awe of your ability to think of others during a time of such grief.

As the fifth anniversary of your loss and my rebirth approaches, you are often on my mind. I wish that I could take away your pain but I know this is a silly thing to wish for. I can hope that there is comfort in knowing that your loved one has saved lives but I know this may not always bring comfort. All I can do is live each day with gratitude in my heart for you and by singing with joy at every chance I get.

My heart goes out to you at this time. On behalf of myself, my friends and my family, I thank you from the bottom of my toes for your generosity.

All my love and respect,
Tiffany

Top 10 Ways to Know You Have Found Yourself a Good Doctor

2009-03-11T05:34:00.000-07:00

This morning, I am off to teach 160 medical students who are graduating and beginning their residency. These are the days I live for!! I created another Top 10 List for them...

1. A good doctor will make you feel like you have a partner in your efforts to get well.

2. A good doctor will care about your whole life, not just your physical problems.

3. A good doctor knows that practicing medicine is about relationships so they will look you in the eye and communicate in a compassionate but concise manner.

4. A good doctor will be your advocate within our complicated system and use his/her position to improve your quality of life.

5. A good doctor will listen to your story like a detective, picking up illness clues as you go along, so that they may solve your illness mystery. And they will do this even when they are in a hurry.

6. A good doctor will be skillful, brave and meticulous while somehow managing to stay humble.

7. A good doctor knows when to think outside the box or bend the rules for the good of the patient/family.

8. A good doctor understands that, sometimes, holding a patient’s hand through difficult times is just as important as prescribing the proper dosage of medication.

9. A good doctor discovers that in order to be an extraordinary caregiver, they must learn how to take good care of themselves first.

10. A good doctor understands that, in their practice, they walk a line between science and mystery every day.

Doctors Make Me Giddy

2009-03-10T06:20:00.000-07:00

In an article entitled "Living with chronic illness: a phenomenological study of the health effects of the patient-provider relationship," Chesla C. Fox noted that chronically ill women who reported a connected relationship with a health care provider and viewed their care as a partnership had more confidence and motivation to manage their illness and a greater sense of well-being. More and more studies like this one are popping up and telling us that the inter-personal relationships between patients and caregivers are key in the treatment outcome. It seems silly to say that patients will be more compliant if they like their doctor, but it is a fact.

The Junior High Effect
One of the rarely discussed but often difficult parts of many medical treatments is the effect on one's ability to go to the bathroom. Anesthesia and narcotics can make a person unable to go to the bathroom while some other meds will cause frequent, unpleasant and unwelcome trips. Talking about poo and pee is not encouraged in this culture (is it in other cultures?) but, rest assured, this is a major issue for many people dealing with illness and medicines. For those who are suffering with stomach issues, it really can be unbelievably miserable.

After my first transplant, it took a long time for my stomach to recover from the anesthesia. In fact, I was eating with no "output" for 14 days. Yes, two weeks. I had a raging and insatiable appetite from the steroids and, despite my condition, continued to eat and eat long after I had become a 'Buddha Belly.' It was rather astonishing how much my stomach expanded and I can honestly tell you, I rarely thought of much else. When I wasn't shoveling food in, I was lamenting what I had just eaten. I walked the halls as much as possible trying to make things move. It ranged from highly uncomfortable to almost unbearable.

By week two, I was obsessed with my stomach and growing increasingly irritable. I was snapping at everyone who came in the room. Everyone, that is, except my doctors. Somehow, when the doctors were rounding, I was able to turn on my happy patient face. We laughed and joked about my misery and being F.O.S. (full of shit). No matter how bad I felt, when they walked in my mood and demeanor did an about-face.

I wasn't playing a game and I wasn't even faking my cheer. When I saw my team walk in the door, I really did feel an energy boost. And it wasn't just me. When the docs came in, my father became very talkative and jovial. My mother became sweet and proper. My sisters beamed with gratitude and smiled widely. My brother became very professional and authoritative. Each of us changed in a very noticeable way when the doctors came by. The family picture they saw when they walked in my hospital room was not a false one but it wasn't an entirely natural one either.

So what is that about? Why did I go from whining, complaining and crying to laughing and grinning just because men with white coats walked in the room? Why did my whole family change their tune? I can only think of one explanation. This is a result of The Junior High effect.

As much as we would like to believe that we are all grown up now, the truth is we will forever carry with us a piece of junior high. Those were the days when all that mattered was who was popular, who had cooties and where you fit in the pecking order. In those days, a good day might have been marked by the most popular girl in school asking if she could borrow your pencil and actually knowing your name. A bad day would have been when the most popular boy in school said you stuffed your bra. Whether you were a jock, nerd or drama kid, the impressions of social ranking were branded on our brains during our time in junior high.

When my doctors walk in the room, I am the geek and they are the cool kids. I am excited by the attention they are paying me and this emotion masks some of my physical problems. I want them to like me, to praise me and to accept me as one of them. Over the years, my reaction to this desire for acceptance has varied. Nonetheless, whether I was rebelling against their power over me or trying to prove I was worthy of prom queen, the person they saw before them was not always "the real me." Considering the amount to which physicians rely on observation in treating patients, this is worthy of noting. So, to the "cool kids," what you see may not be what others see when you leave the room.

Do You See Me?
I have been seeing some of the same doctors for nearly 20 years. They have seen me sick and they have seen me healthy. They have seen me in the depths of depression and on top of the world. More than anything, they have seen me at my most vulnerable.

Perhaps it is that past vulnerability that drives me to "prove" to them that I am now strong. Recently, I sent my doctors and nurses an email about a talk I was doing in the hospital. It really had nothing to do with them, I was going to be speaking to medical students. So why did I send the email? Because I want them to see me, to see the person I have become. I want them to witness my work and approve of me. Like a little child, I want them to be proud of me.

They, perhaps even more so than I, know the fragility of my life. Because of this, they may never see me as I see myself and that bothers me. I spent so long living a smaller life than I was capable of, I want them to now understand my true potential. I want them to see me differently. I want them to stop viewing me as "just a patient" and see me as a colleague of sorts.

It has only been within the last year that I have been able to see my doctors as human beings and not superheroes or villains, as the case may be. Perhaps with time, as I continue to pull back the curtain, I will find they do see me as a whole person. Or, even better, perhaps one day I will overcome my childish need for their approval and just appreciate our relationships just as they are.

What I Know Now
I hate to add more weight to an already heavy load, but being a good healthcare professional is not only about being skillful with medicine. There is immense power in the patient/caregiver relationship. A physician's interest in a patient's well being can inspire a desire to be compliant and even spark a person's will to live. Equally, a lack of interest can make a patient feel isolated and without the support needed to make a valiant effort at getting well.

Whether you like it or not, healthcare professionals are often regarded as the top of the line in human beings. An encouraging word or a snide comment can make all the difference to those who admire them. When we are weak, we may rely on the strength of the professionals around us. When we are well, we may seek to prove ourselves worthy of their care. Being an effective nurse or doctor means being willing to also be a friend and a parent. Being Student Body President isn't easy.

Googling Grief

2009-03-06T12:19:00.000-08:00

Letting Go of Oprah

2009-03-05T06:15:00.000-08:00

I was curled in a ball on the couch under a pile of blankets. My fever was just high enough to make me slightly shiver. I closed my eyes and tried to relax my muscles and my mind. I knew the Tylenol would kick in shortly and I trusted this moment would soon pass. At the same time, this physical feeling and body posture was undeniably familiar, therefore transporting me back to countless times of illness in the past.

I had a strong suspicion that what I was feeling was a result of acute rejection. Unlike chronic rejection, the illness that made it necessary for me to have a second transplant, acute is usually treatable with heavy doses of steroids. Intellectually, I understood that there was little reason for grave concern. Despite this, I did not resist the impulse to allow my thoughts to travel into the realm of worst case scenario. What if this was something serious? What if I was facing my third terminal illness? What if this was the first day of the ending of my life? What if all of my healthiest moments were behind me?

To some, this might seem like a ridiculous and morbid road to travel. After all, I am normally quite a positive person who holds true to the motto: "Be optimistic now, you can always cry later." But for me, for where I have been in my emotional and spiritual journey, pondering the end does not feel morbid or ridiculous at all. Walking beside the presence of death has become second nature to me and thinking about it in such concrete terms is only one mental step forward in consciousness from where I operate normally.

So, under my pile of blankets, I took that step into "what if" and was slightly surprised by my own reaction. The more I thought about shedding this "mortal coil" the more my body relaxed. I was practically melting into the fibers of the couch cushions. Stress was draining out of me and I was feeling a sense of relief I did not even know I needed. All of the obligations, the pressures and the striving for goals were transforming in the fantasy of my life coming to a close. Most of what mattered moments before no longer seemed to be of such value. I was becoming free again.

We all have stories and beliefs we function by. Some of these we may be aware of and others we may not. Certainly, after my experiences, there are many reasons for the work I do and how I do it. Stories play in my mind and tell me that "I must do all I can, while I can" and that I "have a mission." These are inspiring and humbling thoughts that drive my every day attitude and work ethic. What I learned on the couch that day, as stress evaporated along with my fever, is the interpretation of these internal stories needed some serious attention.

For the sake of argument, let's say that I am correct in believing that I have a mission and should do as much as I can regarding that mission while I am here on earth. Let's also say that there is nothing wrong with this as a basic core belief. But how then am I defining the mission and what does it mean to "do all I can"? This is where my feet may have fallen off of the path and ego took over. I shaped the definitions to these things early on in my career and they were all based on external confirmation of my worth. There was a staircase of ways to the top, and the top was Oprah. When I reached her, I would have fulfilled my destiny!

It sounds silly to say out loud now, but I developed a strong attachment to the goal of being on Oprah. As time ticked by, I was becoming more and more impatient and disappointed that Oprah was still nowhere in reach for me. Oprah was in my mind when I wrote, spoke and made plans for my career. At the time, I had no idea that Oprah was tormenting me.

It wasn't until I felt the weight of the Oprah Goal lift from my neck and shoulders that I understood that, what was once an innocent dream, had become a burden too heavy to carry. By being attached to such a specific and lofty goal, I had stopped concentrating on the mission and mostly focused on the outcome. In doing this, I was not only causing myself undue stress but I was missing out on the brilliance of my own life as it was without Oprah.

As a sick person, I am surrounded by the meters of success our culture provides. As a sick person, I have often felt I did not measure up to many of these. To have a college degree, to own a home, to travel the world, to have a full time job--these are the archetypal images I have of what it means to be a grown up. Oprah was going to be my fast track to getting full grown up status. Once again, however, I am now grateful for the wisdom of illness as I look back on the lessons I have learned from a lifetime of being sick and attempting to find worth in an occupation.

Faking It
When I was 16, one of my first jobs was in a sandwich shop. I prepared the sandwiches in front of the customers and one day I had a coughing fit while doing so. My cough sounded horrible even though I was not really contagious and, not surprisingly, the customer refused the sandwich. After a brief confrontation, he left the cafe. I was embarrassed, hurt and confused. My boss was unbelievably kind about the whole thing and encouraged me to not let that one person make me feel bad about myself. What a wonderful man! But I was also not stupid, as much as I tried, I could never stifle the cough when customers were around. Food prep was probably not a good place for me to be.

My next job was in a book store which seemed like a much safer environment. One day I was not feeling well and I was checking people out at the register. I must have had a surly look on my face because the customer told me I "try should smiling sometime." I was taken aback and was not aware that I looked so unpleasant that I deserved this public facial reprimand. Sometimes, when we are very sick, it is all we can do to speak, stand and shuffle the papers around. I simply didn't have it in me to smile too.

In both of these early work experiences, I learned the expectations of those around me were that I should appear and act "normal." Being that I wasn't normal, this caused me stress and I sought elaborate coping mechanisms to fake it. Each job search came with its own questions of places to escape if I needed to cough, public interaction and flexibility of sick time. The pressure I felt to be normal also started me down the path of major overcompensation, meaning I would have rather crawled to work than call in sick.

Balancing It
As time went on, cystic fibrosis became a bigger and bigger part of my existence and the line between life and work grew thinner and thinner. With the strong drive to continue faking it and to appear "normal" (aka employed) sacrifices had to be made somewhere. As my body grew weaker, these sacrifices became more dramatic. It came to a point, when I was trying to live the dream of being and actor and a director, that my days revolved around the next rehearsal or performance.

Each day, I would sleep as much as I could in order to have enough energy for the theater. I did treatments religiously, not so much for myself, but to stay in the game. During a show's run, I would hold out on going into the hospital or getting home IV medications. As a result, each show's closing was followed by a trip to the emergency room and a three week hospital stay. This all seemed perfectly worth it to me.

I'm not judging this approach to living and working with illness. Who knows what is best when you factor in quality of life and the value of pursuing one's gifts. At the same time, however, it must be noted that what I saw as a skillful balancing act at the time was actually quite out of balance. Because I had set work as the priority, everything else suffered. The only social life I had was at the theater and my days at home were quite lonely. I was putting my body under tremendous stress and pushed it well beyond its limits because "the show must go on." I was so attached to the goal that I had very little outside of it.

The question I have now is not whether this was a right or wrong way to approach a career. What I wonder now is where that motivation, the drive to seek normal, was really coming from. Was it coming from a genuine passion for the work, a passion so strong that it deserved to be the orchestrating factor in my life? Was it coming from a place of ego, a need to prove that I was a working actor? Perhaps it was old fashioned denial? In a world where there are no role models for success without achievement, I wonder, could it have simply been that I didn't know any other way to be?

Quitting It:
There comes a time in the lives of many chronically ill people when they have tried every angle and they still can't make their career work. The "balance" I spoke of above no longer gets them through the day and they begin to face consequences of missed work, increased illness and narrowing strategic options. This is often one of the most devastating times in a person's life. The loss of self, independence and purpose can be staggering. The perceived ending of dreams and what seems like years of wasted hard work can make a person feel angry or completely lost. For many of us, we do not go softly into this goodnight and there are many attempts to go back to work before we finally settle into a life without the ever-important career. What we see laying before us is a void too deep to initially comprehend.

For me, saying goodbye to working was the first time I came face to face with my powerlessness over my own illness. Up until then I could still manipulate it, wrangle it like a wild bull, when I needed to. The day I stopped working was the day I felt the bull had won and I was gutted. I was vulnerable to every fear and every dormant thought of my own inadequacy. I had been able to be someone, to have labels, and now I was left with being "The girl who sits on the couch and watched Oprah"? What was my point of existing? Why was I here? And more importantly, would anyone see my life as meaningful? My ego was in a state of complete panic and I had no idea how to live in a world without striving for "success."

What was amazing was that after the sadness and the insecurities passed, I found that it was actually very easy to fill my days. I had projects and routines but also found great pleasure in the flow of freedom. I connected with myself in a deeper way than I ever had and came to love who I was, not what I could accomplish. Over time, I began to wonder how people could live lives so consumed with work! How did they have time for themselves? It was during this time that I began to redefine the meaning of success for myself. Who is more successful, the unhappy movie star or the perfectly joyful Girl on the Couch Watching Oprah? I was beginning to embrace the idea that it may just be the latter.

So, this brings me back around to laying on the couch, under a pile of blankets and letting go of Oprah. Somewhere along the way, after the second transplant, I had clearly slipped back into the old mindset of success. Big conferences, more books, a name for myself: is this what it was really all about? If it was, I was beginning to see it was completely unsustainable for me. I couldn't handle the internal or external pressure. I was fading out of joy right into the need for others to me I was performing as expected. My dreams had become goals and those goals had become burdens. It was time to reframe. It was time to stop being attached to Oprah and discover the way to true fulfillment in my life's work.

It didn't take long before I had the opportunity to practice a new way of carrying this out. I was teaching a patient/family workshop of about 50 people and we were on a lunch break. I scarfed down my food so that I could have enough time to prepare for the next segment. I was in my usual speaker's "chicken with head cut off" mode and searching out a second microphone. In my mind, I needed that microphone and the post-lunch workshop's success depended on it.

As I made my way through the tables of people, participants kept popping up out of their chairs to talk with me. They had questions or stories they wanted to share and that takes time. Time I felt I needed to get that second microphone set up. When I spoke with the first few people, I was polite and to the point. I restrained myself as much as possible from looking over their shoulder, anticipating my next move on the hunt. When the third person stood in my path, I had only made it a few feet into the room and the clock in my head was ticking louder. I was getting frustrated.

As this man spoke to me, I started out seeing him as an obstacle to a very specific goal: the microphone. At some point during our conversation, however, I thought of myself shivering on the coach and letting go of Oprah. This was it, my moment to reframe. I took a breath and stopped glancing over his shoulder. I calmed myself and took a more planted posture. I made myself listen, not humor him, but really listen. In that conversation, I found the joy for my work and the fulfillment I was lacking previously. We connected, shared and were present together. He told me things I was honored to know and responded genuinely. I was not a speaker looking for a microphone, I was a person lucky enough to have a perfect stranger feel compelled to tell me his truth. I was transformed there, in that moment, and never wanted to be a speaker looking for a microphone again.

I never made it across the room that day. With every step, another person stood before me and we connected about whatever had brought us there that day. When the second segment began I did not have the microphone I needed. And no one, including me, cared. This is the work I want to do and the way I want to do it. The beauty is, I don't need to be running a workshop to make this happen. With each person, each day, I can choose to look over their shoulder for that microphone or I can be honestly present. With my life, I can choose to cling to attachments, shadows of goals I set in the past, or I can live it as it best served right now. Is success in this moment taking a nap instead of writing a new chapter? Then so be it. Is canceling a work meeting for lunch with a friend the more healthy choice today? Then it is the successful choice.

Illness teaches us so much. If nothing else, it has taught me that now is all we have. I will never pretend to not have ambitions or desires but those must be monitored so that they do not become burdens. I must define success for myself and not let this society tell me how valuable or not valuable I am. On the day I am laying on the couch with a fever and it is the beginning of the end, what will I remember? The disappointment and angst I felt about not being on national television or the conversation I had in the workshop where I never got a second microphone? I think we all know the answer to that.

So, today, I say goodbye to Oprah. I have let you go and I am free to be successful right now.

The Physician's Paradox

2009-03-04T10:39:00.000-08:00

Generally speaking, those who seek to practice medicine have an inclination towards science and problem solving. This certainly can be true of nurses, social workers and other professional caregivers, but I'm mostly directing this characterization at those who choose to be doctors. There is usually a belief in tests, research and data. There is a satisfaction in fixing a physical problem with a tangible and concrete solution. Facts are valued over anecdotal evidence. Chemicals and surgery are considered before the mind or emotions. The people who practice medicine want to help people with what can be seen as the undeniable results of science.

Often, this science serves us. Often, the belief in data and chemicals is proven true by a predictable outcome. Often, medicine works as expected.

But what about the days when science fails us? When the treatment we thought would be so simple goes terribly awry? Or, what about the patient who regains health after all hope of medical intervention was lost? If something does not work 100% of the time as we predict, how can we believe it to be true science? What becomes of the doctors who rely on science for their view of the world and those they treat?

I have known many doctors in my life. Each to their own degree, they allow the combination of science and mystery to instruct their practice.

I have known doctors who treat me as a grouping of cells and disease processes. These are the doctors who I find to be arrogant and blind to my basic human-ness. These are the caregivers who will leave me when my illness is untreatable or confusing. These are the same ones who think they have all the control and can not bear to give any of it to anyone, especially a patient.

It is my experience that the best physicians are the ones who are never so bold to believe they are up to the task of being a doctor. They walk the tightrope of uncertainty and scientific structure without clinging too strongly to one or the other. They remain confident in science while taking a deep breath through all that they do not know. This, the physician's paradox, is what makes the doctors I have loved extraordinary caregivers.

Back in the Sick World

2009-03-02T15:11:00.000-08:00

I have been a bad blogger. I have missed blogging, though, and have lists of topics I am excited to explore. Like with my first book, I have set my deadline for the second book's rough draft to be done by my birthday, July 17th. That means I have to get cracking here! Keep an eye out for more posts and hopefully more frequent posts.

But, I took a break over the past few weeks for health reasons. I have been feeling fatigued for a month or so and have gone to see the docs about it. We all assumed it was usual winter blahs and, since my lung functions looked great, we left it at that. At some point a few weeks ago, I started having low grade fevers and it clicked--I had a strong feeling this was acute rejection. This is different from chronic rejection, so please don't get confused.

Chronic is what caused me to have a second transplant and can be very serious. Acute rejection has the possibility of being serious but, more often than not, it can be treated with high doses of steroids with no real lasting ramifications. So, when it clicked that I had felt this way before, I asked for a bronch to see if I was right.

Long story short, I was. I had acute rejection and it was treated last week with high doses of IV steroids and now I am on high doses of oral steroids. It isn't fun being on these crazy drugs but I knew what I was getting myself into and was prepared for the emotional roller coaster. All in all, it hasn't been too bad physically.

Emotionally, it was just what the universe ordered. I hope this isn't too strange to say, but I needed to get in touch with the sick world and take stock of my priorities, goals and perspectives. When I am looking down the barrel of illness, there is no more powerful way for me to get my values in order.

I am so grateful for the fear I felt as I wondered if this was the beginning of another end.

I am so grateful for the time spent with IVs and procedures, it reminded me the beauty of being free and, at the same time, the value I have even as a person wearing a hospital gown.

I am so grateful for all of the love and support from my healthcare team, friends, family and strangers. I am a lucky, lucky patient.

My time back in the trenches of the sick world, as short as it may have been, reminded me of the lessons of illness that are sometimes easy to gloss over in times of health. I got a lot of things sorted out in my head and I can't wait to share them with you!

For now, however, I must just leave you with the pic of me before my bronch and a promise of more later, and soon.

I'm off for dinner with a good friend and ain't that what life is all about?

Love to you all!