Today is your birthday, and so it should be about you. Shouldn’t it? But is it any more? You are drifting farther away from us, morphing into someone we don’t recognise, or, at least, regressing into a you we never knew, and that becomes very apparent on occasions like these. Your words emerge in a whimsical, nonsensical order. Your mood shifts, a spring storm regressing the landscape to winter. A sadness replaces the stern expression so standard on your face these days. You rarely dare look us in the eye.
I’ve seen this aversion of the eyes before. In Grandma. In the Man Made of Mercury Glass. In children obscuring that broken thing in the other room. This shift, then the courage melts away, a hailstone on a warm summer’s afternoon after the thunderstorm has dissipated. It brings me a melancholy sadness. An immense ache deep in my soul. Maybe because I once too had a hard time looking people in the eye, not out of fear, but because I lacked courage. He lacked courage: the Man Made of Mercury Glass. A valiant roar. A bland goodbye. But that’s a story for another day.
I sometimes wonder how I cope with this at all. The first year I returned to Chicago after the pandemic, days after your diagnosis, I’d made Hungarian goulash for the whole family to celebrate your birthday. Not having been exposed to it as much as we were growing up, the kids weren’t terribly impressed, I don’t think. Despite me telling everyone I hadn’t seasoned it, someone grizzled how bland it tasted. You kinda picked at it and reshuffled it around your plate. At one time, you would have politely eaten it even if it did taste like shit. But this was one of the signs something was different. (You aren’t very interested in anything any more.)
I sat on the couch and cried. Not at you picking at your food. At the change in you. How this was the beginning of the end of you. Darcie came over and wrapped her arms around me. I couldn’t even get the words out. For once: speechless.
Tonight, we spoke about the changes in you. Darcie and me, that is. This was after I snapped the photo of Avery doing homework on her laptop, away from the rest of us. Zooming in on my phone, I saw Avery had been looking at a photo of her and you from your birthday last year. It couldn’t be last year, could it? You looked so vibrant, or rather, more vibrant than the somewhat tired visage you present now. Showing Darcie the photo of Avery glancing back in time a year to the day, we pulled the photo up, and, sure enough, it was one, not two, years ago. How much had changed in so little time. Not only for you For all of us.
I hate using the word decline, especially as someone else described your condition as “stable”, but I’m the one in the outer orbit that returns like clockwork, a comet approaching the sun for the first time in 77,000 years. Every time I come back, you’re different. Some changes are subtle; some are overt; all are changes for the worse.
I’m worried about you. You’re scared. Aphasic. Tired. So very tired and worn down.
But I take your small hand in mine, or wrap my hands around your thinner-than-ever arms, and guide you, help you to wherever we are going. Your hands feel cool against mine. You shuffle your feet, unsure of your footing. I try to be confident, calm, collected, as if I know where this journey is taking us, and yes, I know the ultimate endgame, but I’m not really sure who you’ll be next time I return.
So I hold your hand, try to lullaby soothing words to you, and lead you to wherever we’re going. I need to stay present. I need to stay in the here and now. To savor these moments, as morsel-like as they may be, instead of worrying about the future.
See, I’m scared too. And tired. I see how worn down you are, and I know that weariness, because I too feel life dulling my edges. It seems like I just start getting up before someone kicks me in the ribs again. No, not someone. A gang of someones. Kicking. Stomping. Bashing my head in.
But I stand up. Dust myself off. Keep fighting. I have to. It’s not a choice — at least not right now — to surrender. Life’s tried to beat the shit of this queer nerdy kid day after day. I didn’t fight that hard to keep my head above water just to hold my breath and pass out.
I want you to still fight. That selfish part of me that wants you here, now and forever, in whatever shape that may take, because you have always been here and I need you here. Don’t I?
In the last few years, I’ve come to understand I can only control what I can control. I am not God. I cannot wish anything into being. Things end. Sure, things begin, but things end too. And no matter what we believe, we are all immortal in one way or another. Things change. Things change form, things shift, things that were once one thing become something else. They transform. Like my beliefs, like my understanding of who I am and how I relate to others and my place in this world, this society, this family: they transform.
And so shall you.
I don’t want you to leave — that’s just me being selfish again — but I understand you can’t sustain this form forever. I see it breaking down. Most of us can. And part of me knows I will eventually have to let you go. To rest. To be happy again. To be with those you miss so very much and talk about all the time. So they can nuture you again. Hold you, and love you, and take your small hand in theirs and feel the coolness of your skin. They have missed it. They have missed you. And I will when you have gone as well.
Today is your birthday. And we tried to make it about you. But it isn’t any more really. Is it?
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