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I'm back. More to come!

May love lead...

I have often gotten on my soapbox with regards the the language we use when we talk about/with dying people. I have often threatened to haunt anyone who uses a battle metaphor after I have died. When I fade into the beyond, I will simply have gone onto another natural manifestation of energy, I will not have lost a battle with anyone or anything. It is the difference between seeing death as moving into peace or death as something, the opposite of peace, to be avoided at all costs.

What I now have to add to this rant is that, in many cases, we are responsible for the language used around us at the time of our terminal illness/death. I see now that, with some exceptions, the ones we love are merely following our lead. When I see the dying railing against the "unfairness" of death, I see those around them declaring war and suffering under the weight of an invisible foe. When I see the dying who make peace and spend their time expressing gratitude for what was/is, I see those around them declaring their love, reminiscing about the times they will always cherish and working for ways to make the patient's time left full and harmonious.

The way we lead our loved ones during our final days is not something we decide. It is a reflection of how we lived and what we believe. How do you imagine you will lead those you love when you are on the deathbed? How would you like it to be? Are the two in alignment?

Pity: The Fool?

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

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!

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!

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

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

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

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"

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

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"

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?

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

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

Very Superficial

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

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

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

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

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

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

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