I’m Savoring Where I’m at in Life With SMA
Late last month, I posted a Reel for Disability Pride Month about comparison. I’ve written previously about jealousy and the dangers of comparing yourself with others, especially when you’re living with a chronic illness like SMA. You lose perspective. You start to blame yourself for things that are out of your control.
In the caption, I argued for “accepting where you are.” That isn’t to say you can’t be dissatisfied with your situation. Dissatisfaction is part of life. But you can strive for change while simultaneously recognizing that where you are in life is the result of countless complex circumstances. Some you can address; many you cannot.
It’s hard work, balancing acceptance and dissatisfaction. God knows I’m still learning. But it’s important — so much so that I filmed a Reel about it.
Days after I posted it, someone commented with a question. Accepting where you are is all well and good, but what if you hate your current circumstances? What if there’s nothing desirable about your situation?
I sat with that comment for a long while. The therapist in me had a reply all ready to go, but the patient in me took her time in responding. I wouldn’t go so far as to say I knew where this person was coming from. But I could empathize with them, and I was wary of invalidating their frustration.
In moments like these, I turn to one of my favorite self-help writers: Heather Havrilesky, of “Ask Polly” fame, who writes about everything from sex and intimacy to climate anxiety. Over the years, I’ve taken solace in Havrilesky’s sharp, cutting, much-needed words.
In one of her columns, Havrilesky speaks to the balance between acceptance and dissatisfaction:
“Practice saying that to yourself when you’re desperate to escape or erase the past or retreat to your childhood bedroom: I’m in the right place. Say it on the subway. Say it on the sidewalk, in the rain: I’m in the right place. I’m exactly where I’m supposed to be.
“Life is a series of moments, strung in a line. Feel where you are. There’s nothing to regret and nothing to dread. Some days you’ll feel satisfied and other days you’ll feel disillusioned. The more you feel, the more joy will seep into your life. Soon, you’ll find a new dream that’s big and beautiful enough for your taste. That’s when you’ll remember how to be bold again. But for today, savor the work of being right here.”
Savor the work of being right here.
I say this to myself all the time. Not to invalidate my desire for more, but to affirm my lack of autonomy. There are aspects of my life that I’d change if I could. But I can’t. When you consider my circumstances — the disease, the dependency — my situation makes sense.
Of course I live with my parents, when you consider the physical, emotional, and financial toll of living independently.
Of course I struggle to find a well-paying job, when you consider my physical abilities, my lack of transportation, and the forced poverty of disabled folks.
With SMA Awareness Month coming to a close, I find myself returning to this more and more. There are so many things I’d change about my life. So many things I’d change about SMA, and the world at large. Some of these changes I can make; some I cannot. Every day is a lesson in balancing acceptance and dissatisfaction.
I’m where I’m supposed to be; I’m not yet where I want to be. Both of these things are equally true.
The SMA community has come a long way in a short time. That is reason to celebrate! But that doesn’t negate how far we have to go. Our thriving babies don’t negate the patients without access to disease-modifying treatments.
Our successes are important. But so are our failures.
This month, I’m savoring where I am. My disease is relatively stable. My mental illness has its ups and downs, but for the most part, I know how to take care of myself. My career prospects are improving every day. I’m not happy, but I’m getting there. But there’s still so much I want — to achieve, to experience, to enact.
Both of these things can be true. And they are.
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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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