Guess who spent the last several days in the hospital with the stomach flu!
I think I mentioned in a previous column that I haven’t been sick in — well, years. Somehow, for some reason, I’ve managed to stay pretty healthy, so the experience was frightening, to say the least, and strangely new. I’ve only ever been to Children’s Hospital, but since I’m 21 now — I’ll be turning 22 in a couple of days — I can’t just pop over to the kids’ ER. I’ve graduated, apparently.
There were so many things I wanted to write about. I remember sitting in the waiting room — pale, trembling— watching through glassed-out eyes as people swarmed around me. It wasn’t an awful bug, just a 24-hour one, but my body hadn’t exactly been prepared for that amount of detox. I couldn’t keep anything down. I knew that, at the very least, I should run a water feed through my G-tube, stave off dehydration for as long as I could, but even that upset my stomach. By the time we got to the hospital on Friday night, less than two days after I first got sick, I couldn’t talk. My dad almost called an ambulance.
All this to say I’ve been thinking a lot, about a lot of things. Most of it has to do with my writing, my career, my future. It’s easy to forget how fast life is, how fast it goes up in smoke. And for me, with my fragile health — with the death sentence from years ago, the one that doomed me to nine years or fewer, the foretelling I somehow managed to circumvent — everything feels that much more precious.
I could’ve died this weekend. And, yes, I could’ve died last weekend or the weekend before that, there’s always that possibility. But I don’t want to live in that fear. I don’t want to always be looking over my shoulder, because then the question becomes one of exhaustion. When will I no longer be able to run? When will it all catch up with me?
It’s easy for me to write these articles and say that, oh, the trip changed my life, the hospitalization refreshed my perspective, everything’s different now. But this is where it comes to a head, where the rubber meets the road. Here, right now. I have been given this moment, this moment, not the next. Nothing beyond that is guaranteed. And with Trumpcare bouncing around the Senate, it all feels so inescapable, so cloying. People are going to die. And I hate that. Most days, I don’t even know how to cope with that; how to wrap my head around it.
If you get anything from these articles, anything at all, I hope it’s a sense of urgency. The time is now. People are waiting for you to call your senators now, people are waiting for you to protest, to put your bodies on the line, like so many activists have been doing for so many years — now. Donate. Text RESIST to 50409, reach out to your congressional representative. Do something, anything, whatever you can. And when this fight’s over, find more work. Put the time in. Don’t wait.
This is for me as much as it is for you. I need the reminder, too. I gave myself a bit of a grace period while I was sick — for a while there, I couldn’t even sit up in bed — but it’s time to start writing again. No more “days off.” No more okay, but do I really need to hit 500 words today, can’t I just write a thousand tomorrow? I don’t want to live my life like that. And I don’t think I’m supposed to. Here I am, inexplicably alive, 12 years after they said I’d be dead and in the ground, and for what? Why?
I wrote an Instagram post earlier today. The first day of the rest of my life, I said, and I think that fits here, too. It’s the first day of the rest of your life. What are you going to do?
Eyes up, I wrote, and I meant it. Let’s go.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.