Crying at a random gas station in rural New Hampshire was on my long list of things I thought I’d never do. Yet, there I was, two hours away from home, coming undone and growing angrier than ever at a disease that was beyond my control.
I’ve been in this place before, this place that feels like I no longer have control over the things I once had. Spinal muscular atrophy can do that to a person. Although its diagnosis is strictly a muscle disease, its side effects can wreak havoc on your mind and spirit.
On that night at the gas station, I was bitter and resentful at my body for not allowing me to go any farther on our mini-road trip to a lake house in the mountains of New Hampshire. My good friends were getting married there, and after all the times they’ve shown up for me in my life, the least I could do was show up for their most special day. But as we made our way into the state, I began developing altitude sickness. (After developing vestibular issues in the past year, my body has become super sensitive to motion sickness and, apparently, altitude changes.) My father had to get off at the next exit, and that’s when we arrived at the gas station.
I immediately drove my wheelchair out of the van, keeping my focus straight ahead on a single object in hopes of counteracting my vertigo. The fresh air alleviated my racing heart, but the pressure in my head remained. Then, I developed nausea. With a pale face and white lips, I broke down.
Recounting and reliving this night is a difficult process for me. I don’t often write about my weaker moments because I don’t think they deserve to get any recognition. In doing so, these moments have done a good enough job of affecting my life to the point where I’m writing about it. But then I remember they are there to serve a purpose, and by not writing about it, I’m doing a disservice to others.
Yes, I’m supposed to be strong, not only for myself but also for others in order to continue to serve. I’m supposed to be optimistic because that was how my mother and father raised me. I’m supposed to be the girl who has SMA but doesn’t let the disease have her. That night, I was a stranger to all the things I’m supposed to be, but it reminded me and my tough exterior of a hard lesson we had learned before.
There are also supposed to be moments of weakness or defeat. Whether we choose to accept this reality or not, there are moments that are supposed to be out of our control, that try to tear us down or force us to have no other choice than to accept defeat.
When the time comes, allow whatever is supposed to be, be.
If you want to be sad, be sad. Be bitter. Be resentful at how challenging life with SMA can be and how, in a split second, everything you hoped for gets thrown out the window. Learning to allow what is supposed to be, both good and bad, is the first step to cultivating acceptance and forgiveness for the one who matters most and, at the end of the day, never gives up: you. Maybe this isn’t the reality you wanted, but it’s the one you have been chosen to live because you were strong enough to do so. SMA may win some battles, but it’ll never win the war.
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.