February 21, 2014

Missing pieces

Post-transplant day 73, pulmonary rehab #36. The missing piece.

Call it worry. Call it unhappy anticipation. Call it separation anxiety. But when one of my people is missing from rehab, I get anxious. I get the jitters and can't focus.

Let me define "my people". I'm talking about my close friends, especially the ones I knew before I moved to Durham, but also the ones w/ CF who made contact w/ me early and who have depended on me for advice and anecdotes and guidance. The ones who work hard in rehab and who anxiously await their transplants; or the ones who have had their transplants and are struggling to get out or stay out of the hospital. My sisters and my brothers. "My people" is a list that grows longer weekly, it seems, but it only goes to show that the friends you make in rehab are something special.

So when a rehab day goes by that someone doesn't show up, it can be for only four reasons: they got transplanted and are in the hospital; they got sick and are back in the hospital; they had conflicting clinic appointments; or, recovered enough with all surgeries done, they graduated and went home. Of course you can imagine I fear the worst each time, especially when someone isn't yet even listed, or is newly post-transplant.

I look around each day and wonder who's missing? When I figure out who isn't there, I wonder why? Generally I can't ask the staff. Even if they know, they're constrained by HIPAA. What I can get from staff is whether they know or not - which means hospital/clinic...or the person is gone for some other reason. Maybe people just play hooky from time to time. Hell, I wanted to play hooky today. Still, even if it's just a clinic conflict, I'm relieved when they come back. Rehab doesn't seem *right* until they're back, because I firmly believe rehab is our place. When someone is gone, it's as if a piece is missing from a puzzle.

I don't know if anybody else feels the same sort of stress when their friends are absent. I don't know if anybody feels that way about ME, although I do know I'm asked after. And the time grows near when I will be gone for good; back to my home in NYC and only visiting rehab when I have a multiple-day stay in Durham for some procedure. And those will be few and far between, and my friends will - I hope - have also soon moved on. When I do leave, in March, will people notice I've gone missing?

Recently, a friend of mine, Dan Jagendorff, passed away. He was too young, too young; yet he is gone. Unexpectedly....ripped fom us - his friends, family, and colleagues - without warning. This next season at Spaeth Design will be hard without Dan's presence in the prop shop. The man could build anything. There's a raw part of my soul where my decade-old friendship with Dan used to be. The Spaeth puzzle will find a replacement piece, but the fit won't be the same. The picture will be different.

Similarly, it is that way at rehab when people leave for good. The mix changes; the change in rhythm hurts a little. Then a new rhythm develops...until, once again, someone goes missing.

Sometimes, they don't come back after transplant. It is rare, but I know of two, one of whom I had just started to get to know better at rehab. It's an uncomfortable fact of our modern science: transplantation is dangerous. It is imperfect, touchy, life-and-death. Some never make it to transplant; we are sick, after all, and there's a shortage of organs. And some people never leave the hospital. They are not merely a missing piece at rehab, but also in the lives of the people who knew them, much as each and every donor is now a missing piece in the puzzle of their loved ones' lives.

At my initial surgical consult, Dr. Reddy was very blunt: I may not survive the surgery. 1% don't. I may die in the hospital. Another 1-2%. 5% of those who leave the hospital won't survive their first year. While I had (have) everything going for me, I could shove those small chances to the back of my mind - but I do have a will and advanced directive because of those very possibilities. I am left wondering, though, now that I'm on the other side: have I made enough impact on people's lives, brought them enough joy, that I would have left a Cris-shaped hole in the universe? Would the pictures of people's lives have been missing a piece? And what light would shine through that hole?

Today I looked around and, excepting April who I knew was out due to surgery and Denise who is still inpatient, it seemed everybody expected was there. Piper, Lynda, Corey, Ellie, JD, Heather, Rob, Corrine, the Weird Sisters, and even my newest acquaintances, Gloria, Kristin, Jesse, and Cynthia. My anxiety was greatly reduced.

Today I was reminded that though you can fill the pieces in and complete the puzzle in a number of ways, you will never get the same picture as before. All you can hope for is as complete a picture as possible.

1 comment:

Debra Blackwood said...

We cant control who comes and goes in our lives but we can be blessed with the time they are in it whether its for years or a few days. Although, I often wonder the same thing. Anyways, I just wanted to let you know that you are missed in rehab and you will definitely be missed when you are gone, not only by your cf friends but also by me.