2018: A Year for New Beginnings

I like setting goals and making lists of everything I want to accomplish over the next 12 months. But resolutions feel dangerous to me — mainly because I never actually achieve them. I finish my to-do list every day for a week, maybe two, but then I start to slip. I miss a day, and then another, and by the time January is over my performance is so spotty that continuing with my resolutions feels useless. So I call it a year — better luck next time.

I’ve talked a bit about expectations, how hard it is for me to accept the imperfections of this body. How susceptible I am to cats, dogs, the change of the seasons, a late summer breeze. All the medications I take, how they only ever seem to keep the symptoms at bay. Someone coughs in my direction, and I’m out of the game for weeks. A case of the flu and I’m in the hospital for days, maybe even a week if it turns into pneumonia. I carry these sicknesses with me, these miniature illnesses: fatigue, headaches, and strange, undiagnosable acne. The list never ends.

I used to be healthy. And, in many ways, I still am. SMA hits some people harder than others, and I’ve always been grateful for the kindness it’s shown me — at least, compared to others I know. But the decline is inevitable, and not just for SMA patients. My dad is starting to lose his hearing. My mom does yoga every night to keep herself from stiffening up. I’ve been faced with mortality my entire life, from the respiratory treatments I do every day to the tanks of oxygen in my bathroom closet — there for “emergencies” we never actually want to envision. It’s not so much that I expected to escape unscathed so much as my brain associates everything, even the smallest change, with death.

I’m still recovering from my hospital visit. The headaches, eradicated by my glasses, are back with a vengeance now and parallel the amount of sinus pressure I’m experiencing. My dad is starting to draw connections between my health and my mental conception of it. I’ve barely been able to resist the urge to research hypochondria. But I think he may be on to something. Having been healthy for so long, every hiccup, every skipped heartbeat, every headache, and every body pain leads me to the worst conclusion — death and endings.

I’m not the kind of person who’s into New Year’s resolutions, but this year, I am trying to be kinder to my body. I am trying to let my body be … a body. With all its idiosyncrasies, its off days, its “Netflix and ice cream, because I just can’t get up the energy to do anything” weekends. I am trying not to take everything as a death threat. I am allowing myself exhaustion, and sinus infections, and random aches. It is one of the hardest things I’ve ever done, but if it makes my 2018 better than all the years before, it will be worth it.

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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.