Wednesday, July 1, 2009

To Be/Is/Am/Was/Are

I guess there are lessons I am destined to learn over and over, regardless of how many times life slaps me upside the head. Cilantro is not going to taste good this time, either. Do change the oil in the car. The third cycle on the toaster is never a good idea. Lift up your feet when you are walking.

The one that's been at the forefront lately is that I am really not anyone special... now, this is not a crisis of self-esteem, but factual statement that, beyond my own little sphere of awareness and purported influence... I am not that amazing. I am not a rocket scientist, I am not a parent, I haven't as yet made any lasting contribution to beauty in this world. I will never be a movie star or an Olympic athlete.

And, while I've had this amazing gift given to me, and this inexplicable opportunity to go on with my life ... I am not all that unique.

I guess this lesson started for real (again) when I was in Clinic about a month ago. I had a few hours to waste between appointments... and was ruminating on the fact that soon I will be "graduated" from the tx clinic and returned to my regular dr.

The UW has been adding "bling" to the wing which houses the tx clinics -- you know, the fancy signs and photos which contain quotes and vignettes about tx recipients. There are also posters. After I get past my cynical reaction ("wow, they are really preparing to compete with Swedish when they start doing liver transplants") I start to think "wow, these people are really something." One of the women is a mom, and a terrific softball player (the softball makes me jealous) ... one of the men is a heart/kidney recipient. One of the poster people had acute liver failure and was tx'd within a couple of months. They are attractive, and healthy, and smiling. And they are normal.

Like me.

I get to Clinic and there are more of me. When I started writing this post (June 11, 2009) there were 179 people on the waiting list for a liver in Washington. Since 1990, there have been more than 1,400 liver transplants at the UWMC, and I am one of the 21 in the first quarter of this year. I am one of 12 Type O recipients. I am one of 4 women who has received a liver this year, and one of 3 recipients in the 35-49 age range (I am the only woman in my age cohort).

And I am the only me. Of a thousand other "me's".

When you consider that each organ donor has the potential to give organs to 8 others, plus countless recipients of tissue, there are thousands and thousands of “me’s,” who have experienced more or less what I have. It strikes me that I may be standing next to another organ recipient in the grocery store line.

On the other hand, I could be standing next to a living donor, or a family member of a deceased donor. Maybe mine.

I’m not entirely sure of the point of this rambling, which is why I think I have taken time to come back to finish. Perhaps, it’s because when I really think about it, there’s this new (and please don’t say duuuuhhh out loud right here; remember, I am a little slow) perception of the interconnectedness of the human community.

Let me try it from this angle: I did not do anything to deserve liver disease and a life of chronic illness. But conversely, I did not do anything to deserve a liver transplant in a world of limited resources. Like all the other “me’s” that there are, I just am.

One of the coinkydinky things that has happened since I’ve let this bumble around in my brain is that it’s become public that Steve Jobs (Apple CEO) had a liver transplant shortly after I had mine. Public debate has ensued about whether or not he used his immense resources to “work” the system and get a liver sooner than other people. (This is aside from the very legitimate conversation about whether the corporation’s Board should have disclosed his health issues.) It’s possible that his access to immediate transportation to any transplant center in the country enabled him to be more strategic in choosing where to go. I don’t doubt that his position and wealth increased his health care options.

I will admit to an ethical twinge. Then I realized that the line between Mr. Jobs’ privilege and mine isn’t really all that wide, and it is certainly grey. I have the immense privilege of a family which supported a good education, which led to a good job with great medical insurance. I have the good fortune to live in an area with one of the nation’s best transplant centers. I am privileged with a good brain that enables me to navigate a frustrating medical bureaucracy, and to find advocates to help me along the way. In short, I have benefited from an unfair health care system based on an accident of birth and geography, despite efforts (or lack thereof) to manipulate the system – and in that, I am no different from anyone else.

What frustrates me is that my last statement is a lie. I am different because I have benefited and because the system is unfair. The field is not equal. As much as the process is supposed to be blind and based purely on biological factors as a measure of illness and probability of imminent death (see MELD score) – which, on an individual level, I believe is true – in the aggregate there are divisions based on class, race, and geography about the access to any health care, let alone the specialized care which I have received. And I struggle with that.

At first, I railed against the idea of a transplant feeling guilty about my privilege and feeling certain that there was someone more deserving, more important, than I. Someone who was the sole source of support for their kids. Someone who was out there climbing mountains and exploring forests. Someone who was making music … or someone who was leading innovation in technology, employing thousands, and influencing the lifestyles of countless others.
At some point I came back around to (and am still learning this lesson, over, and over, and over, and over….) this: I have the same value as Steve Jobs, and so does that much older gentleman with hepatitis C who sits across the room from me and waits with his social worker to find out if he’ll get listed. Simply because we are.

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