Not A Hemophiliac, My Hemophiliac

(NOTE: Based on time elapsed since the posting of this entry, the BS-o-meter calculates this is 6.03% likely to be something that Ferrett now regrets.)

Whenever I think of hospitals, I think of my Uncle Tommy.

Yet how could I not? Half of my memories of my sainted uncle are at hospitals; us dropping by to pick up his cryoprecipitate twice a week, seeing him on the nights he bled so badly they had to keep him in for overnights. I remember my uncle’s five o’clock shadow thrown into harsh contrast by the fluorescent overheads, his leather boots clacking on speckled white hospital tiles, wreathed in the scents of old cigarette smoke mixed with the ammonia scent of freshly-mopped floors.

His life was intertwined inextricably with the hospital. When he was a kid, he spent two weeks out of every month there, practically growing up in the childrens’ ward. His best friend was a kid with a terminal illness who died before he was twelve. He used to go over and comfort the scared kids when the nurses had to give them injections, showing them through his own needle-scarred forearms that the IV wasn’t that bad.

When he died, I found nurse porn in his VHS collection. In retrospect, it shouldn’t have been a surprise.

Tommy’s existence was a product of medical science – he’d basically spent his whole life dying just a little slower than hospital advances could catch up to him. He was born with hemophilia, which meant his blood clotted so slowly he risked bleeding to death from gashes you or I would just bind up – and when you’re a three-year-old hemophiliac, every toddler tumbler means potential death.

But as I said: the technology caught up to him. At birth, he wasn’t expected to make it to six. At six, he wasn’t expected to make it to twelve. At twelve, it would have been a miracle if he’d become a teenager – and then, when he got to his mid-twenties and it looked like hemophilia was a solved (if expensive) problem, he got HIV from a blood transfusion.

Somehow, he managed to live through that until HIV medications could stabilize his conditions, a gruelling decade.

Then he got hepatitis. Managed with that.

Then he got pancreatic cancer, and that’s all she wrote.

And that continual lack of a future stunted him to some extent; he was always terrible with money, because Tommy literally couldn’t imagine having to pay debts two years from now. He had no image of himself as a future being. Yet paradoxically, because he was an accountant, he was also very good with money, dying literally hundreds of thousands of dollars in forestalled death and still managing to leave me $20,000 on a technicality I still don’t fully understand.

What did he buy with that money? Pretty much what I would have: comic books and CDs. Fine meals. Fun outings.

No, I lie; it’s exactly what I would have.

Because Tommy was my best friend.

We’d sit down on a sleepy Sunday afternoon like this, and drive out to the corner store, and pick us up some Archie comics and some chocolate milk (he’d get beer, but I don’t think it’s coincidence I’m drinking a beer today), and just sit around and read comics with MTV on in the background and shoot the shit.

I was… a very lonely teenager. It took me a long while to get past a combination of my own social anxiety and my unwillingness to fit in anywhere. And on those days, those Sunday afternoons, Tommy and I would discuss how great the latest Stephen King book was and talk about Eric Clapton and I’d rag on him about him smoking still and he’d just shake it off and tell me it was too late for him to change, but maybe I could.

And when I was depressed, I could talk to him too. He knew loneliness. He had a lot of friends, before he got HIV and retreated inside and got ready to die – and it was a damn shame that he spent fifteen years withdrawn, braced for a death that took him by surprise – but even though he could have had people over at the drop of a hat, he also understood his dramatic, awkward, fumbling nephew well enough to give him hope on the bad days.

I was the last person he talked to before he died.

Literally nobody who knew us though that was a coincidence.

And for as much as he loved me, he’s laced through my DNA. I walk slow, because Tommy walked with a cane and even now, almost twenty years on, I still amble at his pace. I have his guffawing laugh, which sometimes draws attention at restaurants.

And I can’t stop thinking about him now that the world’s in a pandemic.

Because of the hospitals.

I remember begging Tommy to move out to Michigan with me, near the end of his life – back when he was miserable and hurting and I wanted to take care of him. And he got bitter – he couldn’t leave. The doctors here knew him. I told him that was bullshit, he could start over again anywhere, and it’s to my eternal shame that this was not true – Tommy knew more than I did. As a man who survived through medications, having a stable of physicians who never questioned his own needs – who trusted that he’d only ask for the drugs he needed – was literally life support for him.

I wonder how Tommy would deal now. Now that the hospitals have become a place of danger, where coronavirus has made it so that simply walking in has become a risk.

He couldn’t not go.

But that’s the thing; Tommy was incredibly goddamned brave, for someone who was so goddamned fragile. He’d walk through bad neighborhoods at night with a limp and a cane, eyeing potential muggers as if to ask them what they were gonna do. For him, the worst had already happened.

He was afraid of some things; being dependent on people was certainly one, me aside. (He always relied on me, a fact I still wear with pride.) But he wasn’t afraid of mortal danger. I know he’d walk into that hospital, mask on, shrugging because what the hell, life was always a risk, here’s another one, fuck it.

Maybe that was foolish. Maybe that’s a short-sighted attitude borne of his stunted future. But it also served him well, getting him adventures a man of his medical history should never have reasonably been allowed.

He lived life on his own terms. And I respect that. This virus would be a concern, but not a panic; he’d deal, as he always dealt.

I’ll deal. As I have always dealt.

Because I am my Uncle’s son.

(If you enjoyed this, it was inspired by the National Hemophilia Society reminding me about Hemophilia Awareness Day. If you got a few bucks, I’ll remind you that hemophilia is incurable yet requires expensive, weekly transfusions to help the afflicted survive, so maybe throw them a few bucks? It could be a(nother) act of kindness in a time of pandemic.)

1 Comment

  1. Anonymous Alex
    Apr 22, 2020

    As with every time you’ve shared memories of your uncle, I really feel like I know him a little bit, and am sad that I couldn’t have known him more. Though part of me does wonder whether I would have appreciated someone like him back when I was younger–and, perhaps more importantly, whether someone like him would’ve given the time of day to someone like I was at the time.

    But yeah, in spite of never having met him, I miss him a little, too.


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