The fragility of my independence with a broken wheelchair

Without my joystick, I have to give up some of the control that I value so much

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by Alyssa Silva |

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Through my experience with SMA, I’ve come to understand the fragility of life. I’ve also come to understand the fragility of my wheelchair.

I’ve been using a wheelchair for three decades and have learned how invaluable it is to my life and my independence. Though people often pity me when they don’t see me walking on two feet, I consider myself fortunate to have a means of getting around. My wheelchair is my gateway to the world. But that gateway is often locked shut when things go wrong.

Early one recent morning, I was getting ready to go to my grandfather’s funeral. Still half asleep and saddened by his passing, my mind was in other places when my dad transferred me to my wheelchair. The process has become so automatic that I didn’t think about what he was doing, nor did I need to give him directions. He shifted my hips farther into my seat. He brought my left arm across my waist, then placed my right arm on top. Finally, he put my right index finger on the tip of my mini-joystick so I could drive. But I was quickly snapped out of my trance when my finger fell.

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I asked him to reposition me a few times, to no avail. Confused, I looked down and saw the problem: my mini-joystick had broken in half and was leaning on another part of my wheelchair. Because of this, my finger wasn’t able to get the right grip on the ball that sits on top. In other words, I couldn’t drive.

Thankfully, I have a second joystick behind the backrest of my wheelchair that others can use. It comes in handy when I’m bundled up for winter and can barely move my arms or when I’m feeling overworked and need a rest while I’m out. Nevertheless, giving wheelchair control to someone else diminishes my feeling of independence.

Living with SMA — and less control

On the day of the funeral, my dad was the pilot, with me as his co-pilot. We made a good team. At home, we tried rigging the joystick with some tape and hot glue. Super glue usually does the trick, but as fate would have it, we didn’t have any. But we were able to fashion something so I could drive. We hoped it’d hold us over until the super glue was delivered.

Spoiler alert: It didn’t.

As I’m writing this, I’m still relying on others to drive me around. It’s not the first time my joystick has broken, but it’s the first time I’ve had an additional one on my wheelchair so that I can still get around. For that, I’m thankful.

Even so, losing one of the few abilities I have left, albeit temporarily, has made me feel more helpless than before. To this day, I don’t know how the joystick broke. But I do know this small, seemingly insignificant gadget is my entire world. Because of my extremely limited hand and finger dexterity, a lightweight joystick is the only way I can drive independently. And without it, I can’t live my life with SMA as leisurely as I choose. I can’t feel completely free.

Please share in the comments below how you’ve managed to deal with wheelchair malfunctions, either physically or emotionally.

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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