After more than a decade without one, I have a new power wheelchair
I’ve never understood why some people are weird about wheelchairs. Why the pity? Why think needing to use one is one of the worst things someone could face?
I blame my first power wheelchair for my inability to understand. I got it when I was about 9 from Make-A-Wish. Not for a moment do I regret that choice.
I still vividly remember the day I got that wheelchair. My parents had yanked me away from my computer, declaring that we were going out. I didn’t know what they were up to, or why I had to go if I didn’t want to, and they wouldn’t tell me. So I spent the entire car ride being grumpy.
All the grumpiness disappeared when I saw it: my new “toy,” its seat shaped to my measurements and with yellow rims, waiting for me in a hotel room with a surprise party. I was delighted and wasted no time getting into it.
Later, a friend arrived with hers. We went to Toys R Us and dinner, as kids do. But the fun was just beginning.
On the outside (of the road) looking in
That first power wheelchair unfortunately lasted only a few years. It was in good shape, but my spine’s curvature had outgrown it. Moreover, I became too easily fatigued to want to head out much.
Did I miss racing, playing hide-and-seek, power soccer, and bowling with my friends after I gave it away? Sure. Did I itch to go shopping on my own while my family had dinner? Of course. Was it fun being my brother’s Uber before Uber was invented? Sometimes.
But I didn’t feel like I needed a power wheelchair. I was content to be pushed around if it saved me energy and I was comfortable.
Until last year.
More than a decade after I stopped using my old power wheelchair, I realized how necessary a new one would be to my adult life.
I suddenly had speaking engagements, meetings I had to attend in person, and frequent social outings planned with friends. I went from going out every other month to every other week. It was a fantastic change of pace for me, to be so active again. But it highlighted a loss of independence I soon wanted back.
As an example, while I was out with my friend Phoebe Chua a few months ago, fireworks exploded over the restaurant where we were having dinner. She could turn her power wheelchair instantly to get a good look at them, but I couldn’t. By the time my caregiver got up to spin me around, the last burst of color in the sky was gone. It was frustrating.
(Not to mention that Phoebe likes to drive her chair pretty fast — too fast for my caregivers to keep up when they’re pushing me.)
So I worked up the courage to ask my mum if we could get me a shiny new wheelchair.
Sweet, sweet freedom
I didn’t have high hopes that I’d be able to sit comfortably in a new power wheelchair. The severity and rigidity of my kyphoscoliosis — the forward and sideways curve of my spine — has made finding comfortable seating often nigh impossible for me. It’s how I ended up with a manual wheelchair that my occupational therapist clocked as too big for my frame — because every other option was unsuitable when I was 18.
Thankfully, she and the wheelchair vendor we contacted could customize a power wheelchair model for me. It’s nowhere near what might be possible in the U.S., what with the beanbag-shaping technology it has and Singapore lacks. But it does the job, and it’s pretty comfortable.
A couple of fittings, a few months waiting for the subsidies to be approved, and a few more months waiting for all the parts to arrive, and I finally got back the freedom I craved. In fact, I was so excited for it that I forgot my glasses when I left my flat to buy groceries downstairs for my first outing.
Though my current struggle with back pain caused by my spine’s curvature to restrict my activities right now, I’m hoping I’ll get back to being like that little kid who raced her friends soon.
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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