Things I’m thankful for, although it might not seem like it, part 1

First in a series. 

In this season of Thanksgiving, it is easy for me to declare my gratitude for my family and friends, the generous and caring community that surrounds me and enriches my life. I write about these people and relationships often. They are the primary theme of my column, in fact!

However, there are things I find myself complaining about, resisting, or even fighting against that are also things I’m choosing to be thankful for today.

When I encounter a stranger (usually a young child) who is curious about how SMA impacts me, one of their first questions often is: “Why are you in a wheelchair?” It doesn’t escape my notice that they don’t ask, “Why can’t you walk?” or “What is your disability?” My wheelchair is this big, strange machine they can’t overlook or ignore. It’s a symbol for them and a reminder to me that something is wrong with me. In some ways, it feels like the wheelchair is the thing that is wrong with me.

I have already introduced you to Gladys the Squidgy, my power wheelchair. We have a love-hate relationship. All too often, I growl in exasperation at her when she doesn’t do what I want her to. She doesn’t fit through tight spaces well, will bite chunks of wood out of doorways, scratch long marks on walls, chip paint off table legs, and rip the edge of bed covers to make sure I stay aware of that. If I let my focus drift even a little while daydreaming, carrying on a conversation, or multitasking, she will do very inappropriate things, such as running over people’s toes, rearranging the furniture, or running into walls.

She doesn’t climb stairs or even sizable curbs. She takes up a lot of space and prevents me from getting really close to friends or objects I want to reach. Even though people constantly tell me I’m speeding, Gladys only has a top speed of 7 miles per hour, definitely not fast enough to win a 5K race or a game of dodgeball. She can’t fly, dance, or climb every mountain — or any mountain, for that matter.

And if I stop there, you will surely agree with me that she is a worthless piece of junk. But let’s not stop there. Let’s switch our attention to gratitude instead.

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Grateful for Gladys

If I didn’t have a power wheelchair, my world would be much, much smaller. I don’t have the strength to propel a manual wheelchair independently, so I would be stationary until someone pushed me, and then I would only go where they were able to take me, subject to their own pace and spatial awareness. And if I had no chair at all, I would be completely homebound and probably even bedridden.

So I am incredibly thankful to have a wheelchair that I can control and that gives me mobility and autonomy.

I’m also thankful for the significant improvements in technology, even within my lifetime. The buttons and joystick I use are great for my level of ability, and I’ve seen so many other great options for people who use their head, foot, or breath to mobilize their chairs.

Gladys has special functions that allow me to recline, put my feet up, and tilt my seat — all of which are important for blood circulation and alleviating muscle tension. She also has an elevation function, so I can raise high enough to turn on light switches, reach a countertop, or have a conversation at eye level with other adults.

My seat cushion, backrest, headrest, and lateral supports ensure that I am comfortable and well supported in ways that promote better posture and respiratory health.

Finally, Gladys the Squidgy is my not-so-subtle announcement to the world that I am disabled, that I have weaknesses and limitations. And, while I wish I could be more inconspicuous in a crowd, I’ve learned that there is value in being visible and promoting awareness.

I am thankful when people see me and ask, “Why are you in a wheelchair?” because this wheelchair of mine is not just a hunk of strange machinery; it provides an opportunity for people to interact with me, allowing us both to learn new levels of acceptance and compassion.

Next week, I’ll share another aspect of my life that I often grumble about, but that I realize is an incredible gift for which I am truly grateful.

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.