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Columnist Writes About Losing Abilities
Hey everyone, here’s Kala’s newest column. She talks about losing the ability to drive her chair. Losing abilities is devastating, and I really feel for her. I wrote a similar column last year about losing my ability to play video games. I like her point about doing whatever we can while we still can. Don’t take any ability for granted, essentially.
https://smanewstoday.com/2019/06/18/disease-progression-spend-energy-reserves/
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8 Replies
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This same thing happened to me, and eventually I lost the use of my hands altogether – no more feeding myself, no more driving my chair with a joystick, no more writing. But as a person with SMA often does, I used my stubbornness & ability to fight for what I want. I researched & called all sorts of wheelchair providers, and I found out that I might be able to use a sip & puff. This was back in the day when Christopher Reeve had just passed away, so I thought to myself – why can’t I do something to drive my chair with my mouth just like him. That’s when I found out that using a sip & puff isn’t about having to blow hard or being able to sustain long breaths. It’s more about the pressure you put with your lips & tongue, along with minimal bits of air. Once I got that down, I was free again! Back to cruising the mall & hitting the streets to go wherever I wanted.
Yes, this change in my status caused me to end up getting a feeding tube, but the bright side of that is I don’t get sick as much as I used to & I actually get to feel full for a change. I also can’t write anymore, but I’ve gotten very proficient with Dragon NaturallySpeaking and scroll the Internet, play on social media, & spend hours on my Facebook games. Yeah, it sucks that I can’t really use my arms the way I used to, but you are always ways to work around the bumps in the road. And, if you can’t think of how to do it, there are people here in the forums who may have already conquered whatever you’re struggling with and would be happy share how they were victorious over SMA!
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That’s an excellent point. Often times we don’t need to lose an ability, we have to change it.
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Kelly, thanks for sharing how you drive your chair. For me I think I’d try everything before I’d give up the mobility a power chair gives me. Even though I can understand where Kala’s coming from, I would have a difficult time with that. One of my motto’s is to do what you can until you can’t, and I think that’s kind of what Kala’s getting at, but I also like finding alternative ways to do things.
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Art is pretty important to me as well, and I definitely sometimes worry about losing the ability to use a paintbrush or pencil. There are a lot of options for digital art, but it doesn’t give me the same joy or satisfaction as using my hands. Definitely going keep enjoying my art work as much as possible for as long as possible!
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My crafting keeps getting smaller and smaller in scale. Sometimes I look back at projects I’ve done and I’m amazed I did it because there’s no way I could accomplish that now. Since I can’t do as much myself I try to inspire others to be creative. I walk my nieces through projects and even let them use my precious art supplies.
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That’s awesome! I love doing things with niece as well. We worked on a gingerbread house at Christmas time. Since it’s hard for me to attach the candies, I asked her to find certain colors to add. And since she’s so young, it doubled as great color practice! Until she got bored and just wanted to eat everything at least.
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I want to respond to your comment about possibly losing your ability to create art your way.
Judith Snow lived with SMA 2 until the ripe old age of 65. Judith devoted her life to creating community around things that she believed in and wanted to participate in. She travelled throughout the U.S, Canada, Scotland, Australia and other places promoting inclusion.
One movement she created was the Laser Eagles Art Guild. I don’t know if it is still active, but for many years people would come together in a space to create art for people who, like her, could not move their arms at all. Judith used a laser pen that she could hold in her mouth, and a fellow artist/enabler would trace her line with a paintbrush. Over time they developed ways to communicate whether the line would be thick or thin, textured or flat, etc. It gave her a lot of pleasure to be able to exercise this creative side of herself. She even had an art show at the Art Gallery of Ontario. The art show was a model of having fully accessible art, there was a video of her doing art and doing other things like being hoisted up a rock climbing wall, and some of her paintings were replicated in three dimensions so that they would be accessible to someone who was blind. A book of Judith Snow’s collected writings and thoughts is available online. The book includes some graphics of Judith’s art.
So even if we can do things the way that we used to, I think it’s important to make peace with ourselves and come to terms with doing things in a different way. I was very lucky to have known Judith, personally. She had guts and some of it rubbed off on me.
I used to love writing by hand, then moved to doing all of my writing by typewriter/keyboard, and now use DragonDictate with voice/mouse.
I miss being able to handwrite cards to people, but now I use online cards from two or three different companies so I can still send them, at least to people who have computers!
We have to channel that stubbornness to keep going, cultivate a close circle of good friends and use every bit of technology available to do what we want to do, like Judith did all her life.
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That awesome Tracy! Judith definitely sounds like a person to take notes from.
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