Health procedures may be routine, but that doesn’t mean they’re easy
Living with SMA, I’ve learned that experience doesn't always make things easier
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Recently, I was teasing my brother about how he apparently doesn’t care about me anymore. (Don’t worry. This couldn’t be further from the truth.)
The next day, I was scheduled for an iron infusion and was dreading it. Because I live with spinal muscular atrophy (SMA), maintaining my iron has always been an uphill battle. The medication I take for my gastrointestinal (GI) problems blocks iron absorption, and iron supplements cause severe GI upset for me. Infusions are the only way I can maintain my iron levels, but unfortunately, nasty side effects and long recoveries tend to follow. When my brother gave a blasé “good luck” to my upcoming procedure, I razzed him about it.
“Remember that time you bought me flowers after a tough procedure?” I teased him. “Now, you just wish me luck the day before and don’t even check in the following day to see how your poor baby sister is doing.”
He responded with a cheeky smirk, and we both laughed. In his defense, the flowers were definitely warranted that day. It was after a pretty traumatic feeding tube exchange four years ago that still haunts me to this day. But somewhere along the way, procedures like those became more routine. I grew thicker skin and faced bigger beasts. Somehow, this became the norm, and neither my brother nor I realized this until I joked about it with him.
Familiarity doesn’t take away the challenges
After all, managing my health with SMA has always been an ongoing battle, and I don’t often stop to think about the magnitude of what I face. It involves regular appointments, treatments, procedures, and unexpected health issues like iron deficiencies. It means facing everyday challenges that most people wouldn’t even consider. Over time, the overwhelm becomes a bit more familiar. I learn how to navigate the routine, even when it takes more out of me than I let on.
Yellow roses from Alyssa’s brother. (Courtesy of Alyssa Silva)
Nevertheless, the familiarity doesn’t always make it easier. With my recent iron infusion, knowing what to expect helped me prepare for the day ahead. However, I also knew I would get sick. I knew that in the hours after my infusion, I would start to get symptomatic and need a few days to recover.
In all my trials living with SMA, I’ve learned that experience doesn’t always make things easy. I can get used to medical procedures and still feel exhausted. I can know what to expect and still feel anxious. I can laugh with my brother at how ordinary these experiences have become, while acknowledging the fear that comes with knowing none of them are ordinary at all.
When I got home from my infusion that day, I was completely drained. My head ached, my joints hurt, and my urine was brown, a weird yet normal side effect of the iron infusions. Then, as I entered through the door, I spotted the brightest, most beautiful yellow roses on my kitchen counter and smiled. I didn’t need to check the note to know they were from my brother. I knew his intentions were real, but he also hinted the flowers might be a little tongue-in-cheek.
Despite our banter, my brother deeply cares about me and is one of my biggest fans. He may not always know what to say or do during the many difficult challenges I face, but he always reminds me I never have to face them alone.
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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