Human before all

What's left when there's nothing left

Since my most recent decline in health, I’ve been reflecting on what it means to be human when the world has been taken from you.

Anyone who’s followed my story over the past few years, and anyone who’s been around this illness, knows that it’s pretty much always bad news — and I’m the unhappy messenger.

You’re able to do and be less and less, squeezed into a smaller and tighter spot, ground and shrunk down to little and nothing, stripped and laid bare. The losses accumulate, and by the time you adjust to one, another one comes — wham! You die again.

You try and try and try. It doesn’t matter. The dying never stops. The initial wound never quite heals.

I’ve made the banal observation that people clearly care a lot about what they can do, and when you can’t do things, it affects your spirit. It’s hard to believe I haven’t been a healthy body in nearly thirteen years.

In a way I’m still that same person I was before I got sick, with the same expectations and hopes, still just waiting for things to go right again — to wake up and realize it was all a bad dream. So many long, lonely years, waiting.

There are days I really wish I had died when I first got sick all those years ago. It would’ve been more beautiful in a way, young gun struck down in his prime, all the could’ve beens, people would’ve actually mourned me, and then all this suffering never would’ve happened. Instead of being forced to live on as a non-person year after year and watch every trace of light and life go all out of you.

That’s what this illness does. It unpersons you. You can’t become anyone. You can’t make new memories. You can’t live in the world. Severs what makes you human. Spares no part of you. Just eats it all up, and what’re you left with then? What are you then? To accept your own death as a living reality — no one ever taught me how to do that.

It’s like constantly waking into a nightmare. I am alien. I will never be whole. And you go so long with coping that you forget you’re even doing it, that there’s anything outside of it. And then you get a snapshot of how other people are living and feeling, the sorts of things they care about, and how they would look right through you, how they literally could not imagine what it’s like to be you and would never want to and would at best feel vaguely bad for you, and I’m angry and it hurts all the time.

I don’t want to feel this way anymore.

Yet this hole in the ground still somehow belongs to me. I’m still conscious and breathing, can still observe and reflect and imagine and dream and even love from my little vantage, my heart still beats. There’s still honor and dignity to be had, in the little choices and moments, in the spirit with which I comport myself. I can still appreciate art even if I can’t make any, can still know what good is even if I can’t be good, can still notice life even if I can’t take part— can always watch the world go by from the sidelines and enjoy it second-hand.

I like breathing and seeing and knowing things.

Maybe I’ve been ground down to almost nothing, but maybe whatever is implied in that “almost” is the most important thing there is.

I’m still a sort of person. Reality still exists. Life still matters. There has to be something beyond my own pain. I have to believe in a world that exists without me.

I’m staying alive not for the possibility of “being someone” or “making it,” but for the sake of my family and friends and for everyone who’s ever touched me or who I’ve touched and because I want to and because I must. Being human, being alive is unconditional. It means something, God knows what, but it does. It’s good. And whatever it means, it includes everything, even when all is lost. My sense is that we put too much into external things anyways.

Now I aspire to be no one, and being no one is not much different from being anyone or everyone. To be one with the human experience, or some such.

So this is my freedom. It’s all I am and all I have. Just to live and be. And my icy glare.

I’m not a writer. I’m a human being and a sufferer before all else.

It’s not ideal but it’s enough, for now.

It could be that my fate is simply to bear it and bear witness, and that’s all.

I believe I was put here to suffer, and that’s all.

The question becomes how to suffer in the most human way.

Sometimes, on the occasion I go out, it will hit me all of a sudden and I’ll remember what it was like to be a part of the world, really part of it— will catch a brief glimpse— and it fills me with a sweet sadness. Sadness, because the world is gone for me. Sweet because in fact the world is still there, full of life and light, and it will always be a part of me.

It’s not a bad feeling.

real human being — brows perpetually furrowed