It’s Been an SMA Kind of Day

It’s Been an SMA Kind of Day
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Certain days can only be described as “an SMA kind of day.”

It happens when the power cuts off in the middle of the night, causing the BiPAP machine to stop working and the hospital bed to sink. Or, when air escapes from the seat cushion, leaving a sore butt until the caregiver shows up. 

And of course, there are the sitcom scenarios that occur during medical appointments. 

The other day, I went in for my annual urology checkup. These appointments consist of an X-ray to check for kidney stones and any irregularities, followed by a meeting with my urologist. Normally, the appointments are pretty easy. In this instance, however, it fell into the category of an “SMA day.”

As I was checking in, the receptionist informed me that the X-ray machine had broken that morning. I needed to go to the cancer center on the other side of the hospital to complete my exam. 

In my head, I could hear the voice of John Candy in “National Lampoon’s Vacation” saying, “Sorry folks, this clinic is closed.” 

Alas, my dad, and I made the trek to a different wing of the hospital. The added distance was a bit annoying, but it wasn’t the most frustrating part. I don’t exactly love X-rays to begin with, but I like the team at the urology clinic. They know my needs, and they’re really efficient when it comes to transferring me out of my chair.

Now that I was on my way to a different clinic, I would have a different team and was anxious. Training a new person to transfer me is the equivalent of training a new caregiver.

Once I arrived, I quickly deduced that the team there would not be ideal for getting me to the X-ray table. We SMAers have a sixth sense when it comes to these things, and we can tell when a seemingly simple task like transferring will suck our time and energy.

Thankfully, my dad had the same vibe in this situation, and I was grateful for his presence. We both agreed that it would be much easier if he lifted me, rather than attempt to guide this team through the intricacies of my transfer process. 

The X-ray went smoothly once I made it to the table. I say “smoothly,” but anyone who’s had an X-ray knows that those tables are like lying on a rock. 

Once my dad got me back in my chair and reattached my tray and JACO arm, it was time to venture back to the urology clinic. But as an added bonus to this ordeal, my catheter disconnected during the transfer. I made this discovery moments later in the waiting room, when I tried to relieve myself. It’s fitting that I was having pee-related issues right as I was about to see my urinary specialist. 

All went well during my appointment, and my urologist said my levels were good. Still, I was exhausted when I left his office. My stomach was growling, given that it had been hours since I’d eaten breakfast. Plus, I still had to work that afternoon and moderate an SMA Zoom social in the evening. 

As SMAers, we have an innate ability to adapt to any number of situations. “SMA days” are a regular part of our routine, but they’re nothing we can’t handle. Maybe my next appointment with my poop specialist will go more smoothly.

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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.

Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.

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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.

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