Finding inspiration in mundane moments in life with SMA

I have a confession to make. When the time comes to write this column, I often cry out to my parents, “What do I write about?!”

I’m usually met with eye rolls. I don’t blame them. I’ve asked this question so many times that it’s become a running joke — a way for me to razz my parents. I’ll incessantly ask until they give me ideas — that I usually don’t like. Then, I’ll take my column in a different direction.

I’m not proud to admit that I have trouble brainstorming ideas. But I’m so accustomed to the circumstances in my life that I often forget how unique they are. I forget that they are worth sharing.

From my perspective, my life is seemingly mundane. The health battles, hospitalizations, caregiving woes, and other daily nuances of life with SMA are all I’ve ever known. We all have our crosses to bear, and these are mine. So it’s sometimes difficult for me to see outside my little world and recognize that my life and daily routines are great starting points for my writing.

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I recently had a moment of clarity on this matter after having a draining week. After putting in a long workday on a Monday, I went to the hospital to swap my feeding tube for a new one. Exhausted and mentally drained, I got home after 7 p.m.

As luck would have it, I barely slept for the next three nights. One night, my feeding bag had a defect that needed replacing. The next night, the alarm on my supplemental oxygen went off because of a kink in the wire. Then, on the third night, our house lost power.

Because I’m a light sleeper, I couldn’t go back to bed after these minor inconveniences disrupted my sleep. My body requires a good nine hours of sleep if I want it to function the next day. Otherwise, my muscles have little strength, and my energy is depleted by noon.

Nevertheless, I persisted. Regardless of my fatigue and feelings of being overwhelmed, SMA doesn’t take breaks. I had health insurance issues to resolve, new medications to take, and emails to write to doctors. When I wasn’t managing SMA, I was working and trying to be a good daughter and friend. Fortunately, I have a great support system and co-workers who understand my needs and give me grace. I’m just not always willing to accept it. Instead, my stubborn personality likes to persevere.

When the weekend came and I finally had a moment of reprieve, I remembered how unique life truly is for me. I don’t hear my nondisabled peers talking about their frequent trips to the hospital after work hours or having to navigate the constant back-and-forth with insurance companies to get medically necessary medications. I don’t hear about their muscles slowing down or their breathing difficulties when they’ve had little sleep. Sometimes it takes a little chaos in my life to be reminded of that.

Although my daily struggles with SMA seem routine to me, they are anything but ordinary. In the midst of my mundane activities — waking up, working, having one-way conversations with my dogs, watching reality television, going to bed, and repeating — SMA is weaving a web of intricacies that make this little life a beautifully complicated story to tell. And I’m proud to share it with the world.

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.