I’m lucky that I was diagnosed at a young age, too young to remember anything that happened. I was talking to my father about it the other night, how he and my mother sat shell-shocked across from the doctor, listening to explanation after condolence after death sentence. I can’t imagine how hard it must’ve been for them to hear that I wasn’t supposed to live longer than 9 years of age. Meanwhile, I was oblivious and utterly content.
One of my good friends was recently diagnosed with multiple sclerosis (MS). The diagnosis is tentative, as she’s waiting for a neurologist to look over her MRI results. But it’s been a rough couple of days. She’s a year older than I am and in great health. To suddenly be hit with something like this without warning, is difficult. Now, there is nothing she can do but sit and wait.
It’s hard watching her go through this, knowing from experience what it’s like to have your feet pulled out from under you, yet also knowing that in these periods of waiting there’s nothing that can be done.
I’ve never gone through a diagnosis like this. My SMA has been a part of me and my life for as long as I can remember. The oldest memories I have are, in one way or another, all touched by my disease: making my way through Disney World in my manual chair; squirming against the mattress of a hospital bed as I underwent chest therapy; sitting in my parents’ backyard, watching the neighborhood kids jump on the trampoline next door. I’ve always been sick, and my life is a testament to that, to the resilience that comes with being intimately familiar with death. So, I find myself unable to understand. I empathize, support her how I can, but there’s only so much I can do.
The last few weeks leading up to spring have always been the hardest for me. (I know that technically it is spring, but it snowed here yesterday, so I’m not on the bandwagon yet.) This year is no exception. I’ve been struggling with depression, a lack of motivation, and general sadness. It’s hard getting up some mornings. I’d rather stay in bed, with my cat curled beneath my chin and my Star Wars poster greeting me every time I open my eyes. But watching my friend go through this has reminded me, at least for the time being, how lucky I am to have these moments. Not everyone gets them.
As I write this, my lungs ache from all the respiratory treatments I’ve been doing. My head is fuzzy from the sinus infection that just will not go away, and my elbows are sore from rubbing against the armrests of my chair all day long. But every few minutes, my best friend sends me something over Facebook messenger and I smile, less because of what she’s saying and more because I love her.
My PCA is out getting my meds, but she’ll soon be back with her daughter, who gets so excited to see me that she chants my name the whole ride here. The sun is out, chipping away at the thin, sparkly layer of snow. I’ve never been the biggest Sylvia Plath fan, but I’m reminded of that one quote of hers: “I took a deep breath and listened to the old brag of my heart: I am, I am, I am.”
I am. And that is enough for today.
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.
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