Since I started receiving my Spinraza (nusinersen) treatments in November 2017, my energy level has skyrocketed. Often, I don’t even realize just how good I feel now. Then I think back to when I was a teenager, struggling with sleep apnea and respiratory issues, and just making it through a full day of school was a challenge.
Spinraza has opened up a world of possibilities for me, and I feel better today than ever before. Despite my initial hesitation about having a needle jammed into my neck every few months, I can say with confidence that this therapy has changed my life for the better.
Yet, while Spinraza has made living with spinal muscular atrophy (SMA) easier for me, it doesn’t make me immune to things like fatigue and stress. I am stronger as a result of this treatment, but at the end of the day, I’m still human.
With this in mind, I am learning to recognize my own limitations. I realize that, in recent years, I’ve pushed myself pretty hard, and sometimes to a fault.
Just in the last year, I’ve written dozens of columns and hundreds of posts on the SMA News Today Forums, as well as comic book scripts and some prose fiction in my own time. I’ve also recorded dozens of podcasts, helped develop and run this site’s YouTube channel, and recruited other columnists. On top of all that, my main role here at BioNews Services (this site’s parent company) involves training and managing forum moderators for our various rare disease websites.
Oh, and I spend a lot of time coordinating with caregivers and going to medical appointments. Having a disability is a job in and of itself.
The other day, I was talking with my friends and co-workers Luisa and Tré, both columnists and forum moderators for Cystic Fibrosis News Today. All three of us talked about this notion of pushing ourselves too hard, and in turn, feeling guilty when we’re unproductive. It seems silly that we can’t just allow ourselves to turn our brains off for a few hours.
As young adults with disabilities, admitting our limitations is one of the hardest things to do. We put so much effort into proving ourselves capable of contributing to society that we end up neglecting things like rest and self-care. If we say no to things or spend a weeknight binge-watching “Brooklyn Nine-Nine,” we worry that these things might make us appear weak.
I’m learning, however, that recognizing my own limitations is not a weakness, but a strength. I can be productive and independent, and take time to rest and be lazy. Often, it’s easy for me to forget that these things aren’t mutually exclusive.
This week, I’m giving myself permission to forget about work for a few days. I’m flying to Anaheim, California, for the 2019 Cure SMA Conference at Disneyland, along with my parents, my caregiver Randy, and his fiancee. Unsurprisingly, I plan to spend the majority of my time at the new Star Wars theme park, Galaxy’s Edge.
Stay tuned. I’ll be back here in a couple weeks with a full report of my adventures at the conference. Fingers crossed that the airline folks don’t mess with my wheelchair!
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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