The Letter I Don't Know How To Write

Hey Perry,

I know this was an open ended conversation and we picked up the threads from time to time, but now I have to close it and I don't know how to. I talk more than you anyway so I guess it's only fair. But we had to talk about this, right? It's something that's really too hard to talk to your family or close friends about - not really talk. Too much baggage. It was easier when we didn't know each other so well at the beginning - it was a safe place to say things we wouldn't dare say to other people. Then it got harder because it's safe to talk about dying with a passing stranger. But once you know them, you don't want to think about it anymore. They go from being a statistic to being a friend, and it's impossible for us to imagine a friend becoming a statistic. It's easier to imagine it happening to ourselves, because we know in our hearts that we are not immortal. We know what it feels like for everything to spin out of control. But that friend? That's the guy who won't ever let it get him. I don't know how. Maybe because he's been through so much, that you come to suspect he's superhuman. So I have to confess, I simply overestimated your immortality. Everyone did. And that miscalculation shows on the faces of everyone here today. I hear the miscalculation in the quiet that has overtaken the HVIC unit today. The nurses are trying really hard to work, but we're all a bit lost. Krista's a mess. A few people won't make eye contact with me. Kat is putting on a brave face but I can hear it in her voice. Everyone is numb.

You were already out of it when they admitted me on the 16th. They moved me down to 1170, or as we call it here on the HVIC, "Perry's room." They didn't know whether to put me here or in 20, right next to where you've been since the day after Christmas. I think this room was the wiser course, because I would have likely tried to sleep in the chair next to you or refused to move from the hallway outside your door, if my IV cable and TAH hose would have reached that far. So here I am, sitting in your chair, using your TV and bathroom. Of course, I'm keeping it cleaner than you did because you're a slob, dude. Still, t's weird, your stuff not being here. Even weirder that you're not in here when I come back from a walk, cussing at Ryan or Tyler for creaming you in Madden. I feel like I'm violating your privacy somehow.

Remember that time you put the Ghost Pepper sauce in Adam's drink? He was sick for a whole day, but we were laughing about it the other night. It was a good prank. Sean's not here anymore, but I'm sure he'd laugh about the apple incident too. Cindy went back to the float pool but every time I see her she wants to do a skin assessment. Glad you got such a kick out of my victimization. Jerk. A lot of people are gone now, which is pretty much your fault. They can't come in this room anymore, and they can't focus without the thump of your Freedom Driver as you try to dictate which nurse you'll have, or bugging them to walk over to the Slushie machine in the Children's hospital with you. They've either left or moved to other units because they screwed up and got emotionally involved. Impossible not to. You kind of sucked people in that way.

It just seems like this whole thing should have ended right, ya know? The story of a young guy who struggled with HCM his whole childhood, implanted with a TAH at 18, going on to transplant and having a long, happy life. Because for some reason, those are the only stories people want to hear. They don't want to hear about brain bleeds, bone marrow cancer, ECKMO machines, ventilators, bleeding out, brain damage, transfusions, and then at the end...the good guy loses. You gotta admit, it makes for a really crappy story.

But it's our story, right? The one about private battles, fought in P.E. class in jr. high when you couldn't run the laps like everyone else. Hiding out to escape the inevitable pain that will plague you the rest of the day if you do the push-ups. A-fib spinning the room around, and that frantic moment when it feels like someone just dropped a truck on your throat. Waking up in the middle of the night and it really hits you that your life is at the mercy of a machine you don't understand, or even trust. And trying to breathe through the panic so the alarm doesn't go off. Holding at bay the worry that you could buy it at any time. Watching friends fall away as the drama burns itself out when they realize there may be no end to this. It's okay that they can't finish the story with you, but it's another battle to let them go and not be angry. About making plans for a food truck and an apartment, soccer with the kids, and drum sets, and fantasizing about a normal life on the other side - one you know is unlikely to ever exist because of rejection and biopsies and immuo-drugs and possibly dying from the stupid common cold.

But you talk about it anyway, and you make plans because it helps you, just for a moment, to believe that there really is life beyond these small rooms filled with needles and tubes and finger pricks and painful dressing changes and PICC line changes. In the end, you fall asleep knowing that you probably shouldn't have talked about it at all, because it just makes you want it more, and there's nothing you can do to make it happen. If there's one thing that HCM transplants like us know, it's to not get your hopes too high. They've been smashed so many times that you don't have the energy to pick up the pieces anymore. It's not a story for TV. But it's our story and it's important because some of the time, we actually won those small battles. And we're the only ones who know how much strength and soul it sucked out of us. And I think it's okay to be proud of surviving the things we did, even it's just one more measly blood draw.

Remember how on the last episode of Scrubs, J.D. walks out of the hospital doors that last time and has a vision of all the things that might be? Friendships, and family, and happily ever after? And he's at such peace because even though he can't really see into the future, he sees a possible future, and that's enough?

I want that moment. Where I see you living in our spare room, just like we planned, being my trained volunteer in case the TAH malfunctions. And Rich and Brennan not having to carry that weight. Where I see you in your food truck, knocking out that fantastic Lasagna and all the fusion foods we worked on during my last SWANS cath. I'm working the window between taking orders and there's a big heart painted on the outside of the van. And everyone knows our story - that we fought a war together, and came out the other side with all the scars and the lessons that we learned. That you're older and I am wiser. And then we go to the apartment you had your eye on and your girlfriend and Christie meet us there with the boys and you beat us badly at Settlers of Catan and then gloat about it. You're a horrible winner, did I ever tell you that? And the kids pig out on Warheads and Troll Bites because you keep way too much candy around (if they end up with diabetes, I'm totally blaming you). I want that moment, in the middle of normal life, when no one else notices the look we exchange that says we know, between the two of us - we won the war.

But now I'm forced to let go of that moment, and remember this part, with all the tubes and machines and blood, and more needles, and remember every time I look up from my laptop how I came to be in your room. I'm forced to admit that for all the bloody battles we won, that the war was lost. It's not your fault. It's just biology, and sooner or later it gets the better of us all. It's stupid to say it's not fair that it got you sooner - that's obvious. The hardest part for me will be holding myself back from trying to make sense of it. Because no one can, and anyone who thinks they can is a damned liar. We talked a lot about that too.

I can say with a lot of conviction that I'm going to win my war. Maybe in that way, it'll feel a little like we both won, somehow. Probably not. Then again, we both know that no matter how strong our will is, and how righteous our determination, we are at the mercy of biology. And it's nothing personal - it's just doing the job Mother Nature gave it to do. There are hopes and prayers, but we also both know that in this environment, there are way more tragedies than miracles. We've seen enough of both. I allowed myself to hope for a miracle, though I've never seen anything to make me believe in such a phenomenon. I'd hoped the third-hand anecdotes were true, that maybe I would have one of those unbelievable stories about you. But we don't get to pick our stories.

I'll stay away from the fish in the cafeteria, like you said, and use the TV for my Xbox whether they like it or not. I'll check in on Jamie every day for you (I've been doing it the last two weeks if that makes you feel any better) and even try to get her to eat real food when I can. Tommy came by today to check in on you like he always does, and to say goodbye. Nearly everyone did. I'm giving Adam a lot of crap on your behalf and when I see Sean, I'll tell him you said hello. I'll stay in touch with Mudge and Terri too. But I don't promise too stay here long. Eventually the HVIC will be absent of me and Jamie as well, one way or another, and life will move on until most of us forget each other. If I do come out of this alive, and get to tell my story, it will be partly because, despite your age, you made me face reality at some pivotal moments when I almost blew it. And because even though it was a risk, you determined to finish the war, win or lose. Sometimes it's just the fighting that counts and you should get a medal for that. I'm glad we got to fight a little bit together. I expect the air is easier to breathe now, and there are no more machines to keep you from flying.

Clear skies to you, my brother.

Dave