The last time I saw my dad, he flew out to see me in Vermont. I was in my early thirties, he was in his early seventies. Older than just about any man on his side of his family ever got. Both of us were dealing with serious health problems. We never said it, but we knew we’d never see each other again.
I think he’d only heard secondhand and thirdhand about how I was doing, for a long time. Neither of us were big on phones or emailing at the time. He’d gotten some weird ideas into his head over the years. But they’re pretty common weird ideas to have.
At the time, I’d been very sick for years. Doctors really didn’t know what was going on, despite looking. I’d bounced in and out of the hospital. They’d find out pieces the hard way, but something more was always going on than what they’d expected. They could never really figure out what. I’d always get sicker than I should under the circumstances. At home I was mostly in bed. I’d use a tilt-in-space powerchair if I got up, but every second was exhausting.
Anyway, I wasn’t constantly looking for a cure. I wasn’t holding out hope that one day someone would figure out everything, and my life would be better. And longer. And easier. Or whatever. That just wasn’t where I was focusing.
Somewhere along the way, he’d mistaken that for giving up on life. People do that. They don’t get it. At all. That that isn’t even the thing. I wasn’t depressed or hopeless. I was reasonably happy. I didn’t have a death wish. I hadn’t accepted my fate that I was just gonna die and that’s what happens to people like me. It wasn’t any of the stories people tell themselves about disabled and sick people to make themselves feel better. And I wasn’t doing what some disabled people do, I wasn’t repeating those stories back to myself.
I just wasn’t on their map of life at all. And most people, they don’t want to look too hard at the place I was. It scares them.
Anyway, my dad was genuinely worried about me. I wanted to make him understand. And I struggled to find words.
I told him I’m not waiting around to be alive.
I’m not staking my happiness on something that does not happen to most disabled people, ever.
I’m not staking my happiness on certainty. Even healthy people don’t have the certainty they think they have. Nobody does. You can’t actually ever be happy that way, because you’re grabbing something that’ll never be there, unsatisfied without it.
Honestly I’m not even staking what I want to do with my life on happiness. I’m reasonably happy, but if I’m not, I’m not gonna wait around to be happy before making a contribution to the world.
Because there’s nothing more that close shaves with death and living long periods of time with Death as almost some kind of companion that’s nearby but not quite there, has done to me, than made me want to do things for other people. When I can, of course. And not in the weird sense like you have to have a job to do that, because that’d be ridiculous.
Anyway, I was insisting pretty forcefully that I don’t know how much time I have and I’m not gonna spend that time waiting for something that just does not usually happen to people. I’m going to do whatever I can with whatever I can to live the life I can, like anyone else. I’m not different. And I’m not fucking waiting around to be alive, especially if I don’t know how long I have.
I was pretty intense and fierce and passionate about this and he could see that.
And something shifted.
He went from seeing me as giving up on life, to someone who was living my life.
And I think he finally went from seeing me as a child he worried about to an adult he thought was gonna be okay.
I don’t remember what he said either.
I just remember you could feel the air shift, like he had not even realized what I was doing was a thing you could do. And as soon as he understood, he knew I’d be fine no matter what happened.
We hugged, and we cried, and he left.
He died before I ever saw him in person again.
I… wasn’t cured. But they figured out what was going on. Really three things that were going on, one thing after the other after the other. One I’d been born with, one probably developed ages ago, and one had started recently. And they treated or modified my body to handle those things. And I’m still alive long after I would’ve been if they hadn’t.
I’m not cured.
My life is not any more certain.
The treatments have their own risks.
I’m alive right now and that’s all any of us can say.
But my health is precarious. It always will be. Everyone’s is. Mine is much more obviously and easily.
And all of us have to make a life where we are, not where we might have maybe could’ve been in the future sometime if we hoooooooooope enough for a cure.
Like yeah if they can do something that’ll keep me around awhile, I’ll do that, and I’ll adapt, like I already have. But knowing how limited time can be, I’m sure as hell not gonna spend that time just waiting. Even when I can do nothing else but keep my body breathing and my blood pumping and I look like I’m waiting, I’m still living. Life hasn’t gone anywhere.
And really what already happened was extraordinary and rare. The chances that all things came together so that I was still around and they happened to be looking in the right direction to figure things out (especially since they’d already tried those directions before, but wrong, and figured they’d found nothing)… that really doesn’t happen to too many people. It makes a good story. People like to find it inspirational. It’s not. I got extremely lucky. If people sit around being wistful about that not happening, and not doing life in the meantime no matter what it looks like, they’re gonna have problems whether it happens or not.
And to be clear — I’m not half dead. I’m not partially dead. I’m not dead but still being kept alive. I’m right here.
But I’m alive. Until I’m not. Like everyone else. My body and my health and all that doesn’t change that in any way. I’m not less alive, partially alive, technically alive, creepy-artificially alive. And that’s gonna stay true no matter what until I’ve actually got a toe tag, guys.
(In which case have me composted and dump as much as you can of the results in the ground in Redwood Terrace as close to the Mother Tree as you can get, if you want to know. But not until. Geez. I have all the time in the world to feed trees and fungus and crap, and I’m glad to do so, I think it’s a wonderful thing in fact, but I have to actually be a corpse first. And there’s plenty of people who seem determined to declare me a corpse while I’m still breathing. And I will fight them as hard as I can as long as I can for me and others.)
But right now. I’m alive. And I’m not gonna spend my life waiting for a cure that’s unlikely to happen. I’m living right now. Always. I don’t wait to be alive. And as soon as my dad realized what I meant by that, he knew I was gonna be okay no matter how long I had left.