Doing everything differently is part of living with a disability

For this columnist, SMA and absurdity go hand in hand

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by Kevin Schaefer |

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My caregivers give me a wedgie every morning. I’ll let that image settle into your brain before I elaborate.

This part of my routine bears no resemblance to the act of torture commonly featured in teenage movies. It’s still uncomfortable, but necessary in my case. Once my morning caregivers, usually my parents, finish bathing and dressing me, they then use my electric ceiling lift to transfer me to my wheelchair. However, I still need repositioning once I’m seated. To get me upright, my parents and other caregivers grab the back of my pants and gently slide me a few inches. Don’t worry, I alert them if the pressure is too much.

I know other disabled people who do something similar, but who use a pad or extra seat cushion to slide. While I’ve tried this, I have difficulty keeping the cushion underneath my bottom once it’s pulled. A friend with muscular dystrophy talked with me about this the other day and does the same thing as I do.

The wedgie routine sounds nightmarish to most, but it works well for me. It’s one of the many nuances of my everyday existence that people outside the realm of disability don’t consider. One of my colleagues at work, a caregiver columnist for Muscular Dystrophy News Today, wrote that some of her friends hadn’t thought about how her sons couldn’t just drive their power wheelchairs into the shower. Everything we do, we do differently.

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Embracing absurdity

Consider the extra steps I had to take a few days ago when I needed to pee in the middle of the night. I needed my urinal, but due to my positioning, I would have spilled it if I had gone while lying in bed. I required space and elevation, so I asked my dad to use my lift to raise me a couple of feet above my bed. Once I was safely suspended in the air I had enough room to do my business. This act forced me to get creative. Still, it was easier than transferring to my bathroom on the other side of our house.

These scenarios used to stir up feelings of shame and embarrassment within me. I used to dwell on how awkward and frustrating it was just to get ready in the morning. Who would want their parents to have to give them a daily wedgie?

Now I approach these instances with the opposite mentality. I laugh at the absurdity of it all and embrace the notion that I’ll always do things differently. My mom and I make jokes about the wedgie routine, particularly when I’m at the hospital for my Spinraza (nusinersen) injections and have to transfer in front of staff members.

“Don’t worry, we’ve done this a few times.” We’ll say this to a nurse once I’m back in my chair and ready to reposition.

Living with SMA and absurdity go hand in hand. I know that normalcy is well outside my reach, especially with my limited arm strength. For me, different is perfectly OK.

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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