As My Body Weakens, I Must Adapt and Move Forward

Kevin Schaefer avatar

by Kevin Schaefer |

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Kevin Embracing my inner alien

As I’m writing this, I’m not working on a laptop, but on my iPhone. To my left is my robotic arm, mounted on the side of my wheelchair, which I’ll use later tonight to eat dinner. Over in the corner sits my chest PT equipment, which I use every morning. And on my nightstand is my BiPAP machine, which I use while I’m sleeping. There’s also my Hoyer lift in my bedroom, which my parents and some caregivers use to transfer me to and from my wheelchair.

In short, I live in a high-tech Batcave and I am ready to move to Gotham City to beat criminals to a pulp.

OK, maybe I’m not quite on that level, but I do use several technologies every day, none of which I needed when I was younger. Living with SMA requires, however, that I make changes as my body gets weaker over time. Take, for example, how I write.

When I was younger, I was able not only to type on a computer, but also could write by hand. Technology certainly makes it easier to write faster, but there’s nothing like the ebb and flow of pencil on paper, knowing that you’ve created something with your own hands. I was never that good at drawing, but I loved to sketch and doodle as a kid, nonetheless. Plus, I loved to do my creative writing by hand. I’d fill notepads with terribly amateur stories and ideas, plays and fan fiction. Even if the material itself was the abysmal work of an undisciplined fanboy, it brought me great satisfaction to see my handwritten words on the page.

As time went on though, I had no choice but to type more. It became too physically taxing for me to try to write with a pencil or pen, particularly for school assignments, and as such I started using my laptop on a regular basis. I was a late bloomer when it came to joining social media, not getting a Facebook account till my junior year of high school. I used my computer only for writing and looking at a bunch of movie websites. Throughout middle and high school, I was able to type on laptops and school computers; now, however, I barely remember the feeling of using a regular keyboard.

My senior year of high school, I received an iPad around the time of my birthday. From that point on, I quit using a laptop altogether and converted to the tablet. The on-screen keypad provided an easier and faster way for me to type, and I could also use the device to download eBooks, digital comics, music, videos, random apps and for social media. Pretty much all of my college work, from papers to articles for the school newspaper to other projects, is stored on my iPad.

I was convinced that I’d be able to type on my iPad without difficulty for the rest of my life, but once more SMA laughed at that notion. While I still use my iPad a lot, it is becoming more draining to do work on it, and I’ve found it easier to write on my phone. Given that an iPhone screen is obviously smaller than an iPad, I don’t have to move my arms to reach all the buttons on the keypad. Also, a modern iPhone screen is just large enough for me to be able to see clearly what I’m writing, and I edit using Google Docs.

When I finally get my new wheelchair (that’s a story for another post, but my family and I had to fight our insurance for this chair), I’ll have a built-in Bluetooth device, which will allow me to type with my joystick. This is another adaptive technology that I used to be resistant to trying, but now that my muscles are weaker I have to give it a shot.

It’s hard to even want to adapt sometimes. With all the physical changes that have happened in my life just since high school and college, I like to be stubborn and set in my ways when it comes to certain things. I often get frustrated and think to myself: Do I really need another piece of technology to keep up with?

The fact is this, though: If I don’t adapt when things get rough, then I can’t pursue the things I want. Writing is at the core of my being, and if I have to make adjustments to how I do it to keep doing it, then so be it. If I were to quit just because I can’t hand write or type on a computer anymore, then I really would be wasting away without any purpose. Instead, I choose to adapt, even when it’s annoying and frustrating, and to keep moving forward.


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.


Dave Kincla avatar

Dave Kincla

I can only sympathise Kevin. I am just at the I-cannot-type-any-more stage. Horrific as it is, we have to adapt or give up :|

Can I ask what robotic arm you use? Cannot seem to find any online that seem purchase-worthy. Are you happy with yours?

Kevin Schaefer avatar

Kevin Schaefer

Hi Dave, glad you enjoyed my article. Yes I use a JACO robotic arm. When I got mine insurance wasn't covering them, so we did a GoFundMe. Now however there are insurance companies that cover at least part of the price. I use mine all the time though. You can find out more about it here:

Dave Kincla avatar

Dave Kincla

Excellent, thanks for the link. It looks suitably sci-fi :)


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