On Getting Up Again

Part of being disabled is waking up one morning and wishing you could be done with it all.

I’ve never admitted that before, least of all in a public forum, but I think it’s something we have to acknowledge at one point or another. It’s not so much wanting to die as it is wanting an end to things, wanting to … cease.

I say all of this because, on the flip side, part of being disabled is knowing that no matter how much you may want an end to things, you have to continue. As much as I’d like a different life, or an easier one, or a kinder one, this life is all I have. I have no choice but to live it, and to live it well — or, at the very least, to the best of my ability.

I’ve wasted so much time wishing for a different body, a better body, with fewer imperfections. Clearer skin. A smaller nose, fuller lips. A year or so ago, I fell out of my chair and chipped a tooth, but even before that my teeth were crooked, jagged, sharp, and unwieldy. These are things I’ve hated about myself for a decade or two. And even though I’m trying to love my body this year, it doesn’t make it easier. I still wake up with aches and pains. I still wake up with one desire: for it all to stop. The headaches and fatigue and acne scars — they’re practically bruises at this point.

And my brain. We’ve been fighting for months now, and it still isn’t any easier. Never knowing what to trust — anxiety or my parents. My best friend, telling me for the thousandth time that we’re OK, we’re good, everything’s fine. Grappling with the knowledge that when my friends get married and have kids, I’ll still be here. Here in my parents’ basement, at 11:07 p.m., having just taken my first melatonin of the night. When my parents die, I don’t know what will happen to me, and that, too, is a thing of grief. My brain goads me into meditating on these things. The depression only makes it harder to resist.

The other day, I found myself thinking just how much I wanted to be done. With my smudged glasses, my ever-increasing Netflix queue, even my “Dungeons & Dragons” campaign. My book. My master’s degree. Things I love, but on bad days, it’s hard to remember why. But I always come back to this, this moment of clarity, of what can I do, followed by “get up, eyes up, let’s go.” That’s all there is: the holes we fall into, the holes we dig ourselves. All the dirt beneath our fingernails. It’s hard work, pulling ourselves out. But we do it anyway. Today, and tomorrow, and all the days after.

In times like these, I return to poetry, my survival kit. “Instructions on Not Giving Up” remains, somehow, at the heart of me. “A return,” says Ada, “to the strange idea of continuous living despite / the mess of us, the hurt, the empty. Fine then, / I’ll take it, the tree seems to say, a new slick leaf / unfurling like a fist to an open palm, I’ll take it all.” What can we do but take it? What other option is there?

I think of a song in my survival playlist: “Please throw down that rope, I want out.”

Tomorrow, it begins again.

P.S. The poem my column is named after is published in The Offing! You can find it here.

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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.