Tuesday, August 16, 2011

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.

Thursday, June 23, 2011

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.

Wednesday, June 1, 2011

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.

Thursday, May 19, 2011

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.
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