The past four weeks have taught me some hard lessons, which came as no surprise. I’m the type of person who constantly searches for meaning and purpose during every peak and valley of life — especially the valleys. Finding valuable takeaways from every difficult situation in my life has helped me come to terms with the downsides of SMA.
Without coming across as wanting sympathy, I must admit that more valleys than peaks filled July. In addition to recovering from unexpected health issues, I’d also been dealing with, as I call them, mystery flare-ups that have been occurring for about a year. Doctors can’t quite pinpoint it, but basically, my nervous system gets a little wonky with certain triggers, particularly heat and humidity. And where I live, July was the second most humid month on record.
When these flare-ups occur, I become a couch potato; my body feels too weak to do anything else. However, there wasn’t really any time for these flare-ups to take place this past month. There wasn’t really any time for me to get sick, either.
As I mentioned in the past, I plan and host a big gala fundraiser for SMA every year, and this year it falls on Aug. 3. Several weeks leading up to the big event consist of planning, planning, and more planning. My team and I don’t stop. With that said, I didn’t have time for those flare-ups. I didn’t have time for hospital stays. I needed to work, and that was where I went wrong.
Instead of recuperating, I worked hard. I wore myself thin to the point that my stopping point would be determined by how weak my arm muscles felt and how fast my heart was beating. Stress became a driving force to get things done, and I refused to let others tell me otherwise.
I reached my boiling point Friday night into Saturday. I was scheduled to go to the Taylor Swift concert with friends — something I’ve never missed in years passed — but knew my body wouldn’t allow it. I was physically exhausted, and my nervous system was wonkier than ever. But I didn’t want to miss out on something because of my lack of self-care and the inability to “do it all.”
I was devastated, and I broke down that Saturday morning because I knew I had messed up and had to pay for it. But my parents, being the two incredible people that they are, intervened and gave me a proposition. As long as I promised to put my work aside for a day, rest, eat, drink, and most importantly, breathe, they said they would buy tickets to take me to the show. If I didn’t feel well, we would just leave. It wouldn’t have been fair of me to put my friends in that kind of predicament, so when my parents offered to go, it was the perfect solution.
I made it through the concert that night feeling better than I had in a long time, and that night, I was feeling a new level of gratitude. I was grateful to have been blessed with two of the most selfless parents who are always willing to make the best of any situation. And I was grateful to reside in a body as resilient as mine. As I continued to reflect on the past month and the mistakes I had made, that’s when the hard lesson hit me.
For so long, I’ve used working hard as a measurement for success. But I don’t mean the kind of success people refer to in their careers. I mean success in my overall health. If I’m working hard, it means my body is working hard. It means SMA isn’t winning because I’m able to push past my limitations and not live my life on my body’s terms. I realized I’ve lived with this mentality for so long that the thought of rest seemed preposterous. In my skewed perception, rest symbolized weakness, and I wasn’t going to settle for that.
As much as I wish to take away all the hard stuff that happened in July, I’m grateful for it. I’m grateful my nervous system went wonky when I overdid it. I’m grateful my parents told me to slow down when they did. Most importantly, I’m grateful my body listened when I finally understood.
My success isn’t measured by how much work I accomplish or how many words I type in a day. It’s measured by how well I nourish my body and how well I feed my soul. And, after taking several years to arrive at this point, I think it’s finally time to become successful.
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.