A Power Outage and a Frozen Ramp

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by Kevin Schaefer |

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Here in North Carolina, the weather fluctuates between springtime warmth on Christmas Day to freeze-your-butt-off cold a couple days later. We sometimes get all four seasons in the span of a few weeks, but it’s the wintertime that requires the most preparation. It forces people like me to adapt to any situation, like when the power goes out in the middle of an ice storm.

For most people, a power outage is primarily an inconvenience. But for those of us with SMA, losing access to power means more than not being able to watch Netflix for a day. It means being unable to use our electric hospital beds, bilevel positive airway pressure machines, and cough assist machines, and charge our wheelchairs and electric lifts. We have an unequivocal dependency on technology that puts us in peril when we don’t have access to the dozens of assistive devices we use every day. 

So, yeah, a power outage is quite a nuisance.

I recently encountered this scenario on a Sunday afternoon, and it no doubt interfered with my plans to binge-watch “Cobra Kai.” I had just finished getting ready, and my mom had toasted my bagel just in time. The power cut off right around lunchtime, but there wasn’t a ton of sunlight outside, given that it had been storming all morning.

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My parents and I spent the afternoon at home, hopeful that the power would return in the evening. I did some reading on my phone and had my mom open the blinds in my room to allow the small bits of outside light to creep in. Yet, as 6 p.m. rolled around and it was getting darker and colder, we decided to head to my grandparents’ house for the night. 

By this time, the wooden ramp I use to get in and out of our house was covered in a sheet of ice. I had no choice but to drive down it slowly and with absolute precision. Two of the Daniel Craig James Bond films feature characters walking across a frozen lake and trying not to fall in. As I did my best to keep my wheels from spinning on this terrain and my hand from sliding off my joystick, I felt a bit like 007. I’d take a martini if I could make it down safely.

Fortunately, I did. Otherwise, I likely wouldn’t be telling this story. We drove to my grandparents’ house five minutes away, but then came the matter of sleeping arrangements. Any time I check into a hotel, I must be adamant about reserving a room with an accessible bathroom. When I’m just crashing for a night at a friend’s or a family member’s place, I can’t just ask them to remodel their home at a moment’s notice to accommodate me. I make do with what’s available.

My grandparents’ bathroom isn’t wide enough for me to access with my commode chair, which means that my normal morning shower routine wasn’t an option. Knowing this, and also keeping in mind that standard beds are hard on my body, I opted to sleep in my chair for the night. The advantage of the Permobil model I use is that it tilts and reclines into a solid resting position, and it also has an adjustable footrest. It’s not nearly as comfortable as sleeping in my hospital bed, but I made it work for a night.

By the time we got home the next day, the power was back on and the ice had melted. I had spent more than 24 hours in my chair with the same catheter on the whole time, and I was quite ready for a hot shower.

Living with SMA is a constant game of adaptation. Whether it’s a power outage or a family vacation plucked from a John Hughes screenplay, I and others in my community know how to manage any number of absurd scenarios.

Still, I like my bed just as it is.

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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