SMA and the power of community: Finding solace in shared journeys
Thanks to technology and the internet, I connect with people who understand
Contrary to what others may perceive, living with spinal muscular atrophy (SMA) doesn’t come with an instruction manual. Trust me, though, there are many days I wish it did.
A common question I’ve been asked throughout my lifetime is how I manage the daily nuances of my life with SMA. I always wish I had a foolproof answer for this. When I was a little girl, I thought my parents actually did have the answers to these types of questions. After all, despite the blips and health setbacks of living with a disability, I had an amazing childhood. So my naivete led me to believe my parents were a treasure trove of answers about SMA.
The truth is that they were simply trying to figure it out, like I am all these years later. Through experience, I’ve learned that living with SMA often means navigating uncharted waters and living on a prayer, hoping you’ll make the next best decision for your health. It means learning as you go and building a certain kind of strength along the way. It means getting knocked down and becoming familiar with the darkness of defeat, but finding the courage to get up again. Living with SMA is a series of setbacks and comebacks that I’m still learning every day.
Kindred spirits
Thankfully, as I’ve journeyed through adulthood, I’ve had the privilege of meeting others on similar journeys. At the SMA News Today Forums and on social media, I’ve found community with others living with SMA and have experienced some of life’s challenges together. We’ve stood in solidarity during our hardest moments, celebrated our achievements, and supported one another. Because if anyone will truly understand the implications of living a life of unknowns, it’s someone with SMA.
On the days when I don’t know how I’m managing my disability, I turn to these people and hold gratitude in my heart for them. They are my solace. When my parents were raising me, they didn’t have any resources or people to guide them through their toughest times. The internet was hardly even in people’s homes yet. My parents’ efforts were a shot in the dark and a plan based on faith. I realize how fortunate I am to be living in different times today.
I learn as I go. I make mistakes and gain wisdom and experience along the way. Some days, I may not have any clue what I’m doing or what’s to come. But maybe an instruction manual wouldn’t make sense of it anyway. Maybe it’s the grit in showing up despite these things. And maybe it’s the people I meet along the way who will make it all worthwhile.
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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