What it means to go the distance while living with SMA
The album “A Whole New Sound” is a treasure trove of nostalgia for millennials. Released last month, it features early 2000s punk rock bands performing covers of iconic Disney songs. Listening to Simple Plan’s rendition of “Can You Feel the Love Tonight” fuses every ’90s kid’s love of alternative emo rhythms with our love of “The Lion King.” It’s simply a match made in heaven for my generation.
My favorite track is “Go the Distance,” the triumphant ballad from “Hercules,” performed by We The Kings. It’s a classic hero’s journey anthem, illustrating the desires and determination of the movie’s protagonist to find his place in the universe. Its lyrics are also perfect material for a punk rock reimagining:
“I have often dreamed of a far-off place
Where a hero’s welcome would be waiting for me
Where the crowds will cheer when they see my face
And a voice keeps saying this is where I’m meant to be.”
In a few days, I turn 31. Thirty-one years of living with SMA makes me reflect on the concept of going the distance. In a literal sense, I can go the distance of a Little League field in my power wheelchair before my atrophied muscles wear out. Three decades and some change in disability years is more like senior citizen status.
From a figurative standpoint, going the distance with SMA means confronting and navigating a constant stream of unpredictability. In the past three years alone, I’ve trained and worked with five personal care assistants, adapted to major changes with my healthcare team, received a new diagnosis, said goodbye to multiple friends in the SMA community, and learned things about myself in the process.
Living unapologetically
Disabled people tend to apologize for things outside our control, myself included. We spend an exorbitant amount of time worrying about the needs and capabilities of our caregivers and loved ones, and we neglect our needs and desires. Sometimes that means clenching our teeth through pain and discomfort to avoid scenarios in which we feel burdensome.
Recently I started working with a friend who’s a disability life coach. As one of her clients, I discuss topics and issues that I’m struggling with, and she works with me to provide tools to address those issues.
When it came to caregiving and my frustrations there, she helped me realize the difference between temporary solutions and the root of my problems. While I’ll never have a permanent caregiving solution and will always face barriers, communicating my needs as best I can is the only way I can live fully and unapologetically.
Letting myself feel what I feel
For years I’ve written about embracing my disability and showing people that being disabled isn’t a tragedy. I fully believe that, and I wouldn’t exchange my life for one without SMA if given the chance.
Still, that doesn’t mean I don’t have moments, days, and sometimes weeks of relentless frustration and despair. I hate dealing with fatigue, pain, and discomfort, and, especially as I get older, I wish things were easier. I’ve learned that it’s OK to advocate for the inclusion and validity of disabled people while also feeling the weight and frustration of living with a disability.
Going at my own pace
The other day at an SMA fundraiser, a kid with my disease zipped past me in his wheelchair at lightning speed. My family remarked that I used to do the same at that age, propelling myself ahead of everyone else at grocery stores and around our house. Now that I’m an old fart, I couldn’t keep up with my younger self if I tried.
I don’t regret slowing down. While I still consider myself adventurous and love going to conferences and conventions, I go at my own pace. I take my time getting in and out of my van, take breaks when I’m tired, and understand that it’s OK that I not cling to a constant state of adrenaline.
As I continue listening to “A Whole New Sound” on repeat, I’m not sure what my 32nd year will entail. For now, I’m where I’m meant to be.
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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