The Curveball, Part 2: Some are Worse Than Others

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by Kevin Schaefer |

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change in perspective

As I wrote in a previous column, the unpredictability associated with SMA is in many ways the hardest aspect of the disease. I’ve broken my leg several times, but this was the first time the doctors allowed the bone to heal on its own, instead of casting it or performing surgery. This decision brought me both relief and uncertainty. While I was relieved that I wouldn’t have to be put in a body cast for six weeks, I also was skeptical if this whole “let it heal on its own” method would work.

Following my 15-hour torture session in the ER, I was finally moved into a hospital room where I could sleep for a whopping three hours before the nurses barged in at 5 a.m. to check my vitals. That Friday morning is when one of the doctors proposed this treatment method to my parents and me. He said they would keep me at the hospital for about two weeks until the pain got to a manageable level, and then probably move me to a rehabilitation center. Again, I was hesitant about this idea, but the doctor assured me he has seen it work with other young adults with similar conditions as mine. Reluctantly, my parents and I agreed to this plan.

The remainder of the hospital stay had its ups and downs. I was fortunate enough to have excellent nurses who were careful and who listened to me. I even joked with them that I sound like Lady Gaga when I’m in pain. As they rolled me in bed to change my sheets or wipe my butt, the sounds coming from my mouth ranged from “ra-ra-ra!” to “ga-ga-ga!” This prompted one of the nurses to bring up the scene from The 40 Year-Old Virgin when Steve Carell gets his chest hair ripped off and yells “Kelly Clarkson!” The fact that these people shared my sense of humor and were patient with me made the experience much easier.

I’m also incredibly blessed to have had so many friends and family visit while I was stuck in the hospital. I even got to see one of my best friends from high school, as she was finishing up with nursing school and happened to be doing clinical trials at the same hospital that I was staying at. It’s funny how things like that work out.

The bad parts of those two weeks: The pain I was in, taking dumps in a bed-pan, being woken up early for vital checks and, most of all, the amount of cable TV I endured. Seriously, how many channels is Friends  on during the day! As for the bed-pan nonsense, I can’t tell you how amazing it felt to get back on the toilet when I got home. Also, why can’t someone just invent a bed with a small hole cut out in the center so you can do your business right then and there? I have many ideas like this which would make the world a better place.

Anyway, my pain did decrease significantly after two weeks and I was able to go home. The first thing I did was send my Dad out to get me fast food while I watched Escape From New York in the comfort of my own room. You know hospital food is bad when a Burger King meal tastes like it fell from heaven. From there I continued to take it easy in bed for a bit, but I was back in my chair by the middle of the week.

I’m now getting out again, and only taking painkillers as needed. All in all, it’s been a much smoother recovery than I originally anticipated, and for that I am grateful. SMA can throw a curveball at you at any given moment. Some are worse than others, but the only thing that matters is how you respond.


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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