What Being In A Wheelchair Has Taught Me About Independence

Life has a funny way of teaching you lessons when you need them the most but expect them the least. My big lesson came at age 35, on an unnaturally warm February day in the middle of a soccer field, just after my wheelchair flat-out broke down.

Thirty minutes earlier, my mother and I had set out on a morning walk.  The weather was perfect—in fact, everything felt pretty perfect. But as I was wheeling myself over a tiny hill on the field, my wheelchair stopped. And it would not budge.

I was relieved when my mom and sister (who had joined us to help with the situation) were eventually able to push me to the safety of our car, but I was significantly rattled. I couldn’t shake the sense of helplessness I’d felt in the middle of that field, even days later.

I’ve used an electric wheelchair since I was in the first grade because I was born with Freeman-Sheldon Syndrome, a genetic bone and muscular disorder. It causes joint deformities, face and eye issues, and, for about one-third of people with the syndrome, intellectual disability. It’s a rare disorder and I’m one person in about 100 reported cases.

I couldn’t shake the sense of helplessness I’d felt in the middle of that field, even days later.

Although my wheelchair has allowed me to be fairly independent, I still need assistance with day-to-day things like showering and dressing. I know there will always be things I’ll need help with, things I won’t be able to approach or avoid on my own. The upside? I got rid of any sense of modesty super-early in life.

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I was seven years old when I got my first wheelchair and I can still remember the distinct sense of freedom it gave me. When I turned the power on and started zooming around, I realized I could finally go where I wanted. I could do what I wanted. It was, essentially, the moment my life actually began.

My mom tells me all the time about that day: I just kept repeating, “Thank you, thank you, thank you.”

Before my wheelchair, my parents had to carry me everywhere or I had to use my walker, which meant I wasn’t very fast. The wheelchair allowed me to keep up with my friends on the playground. That may sound like something small, but as a kid, recess is basically your entire life. I could zoom from the swings to the basketball court like a pro. Basically, I felt “cool.” Like the other kids.

When I turned the power on and started zooming around, I realized I could finally go where I wanted.

But as I got older, I started to notice just how different I was from my peers. I’d see them hop in their cars to go to an amusement park or the movies, leaving me feeling like an outsider.

Related: Shop a variety of joint and muscle health products.

My parents were always unbelievably loving and supportive, but the last thing I ever wanted was to be a burden on anyone. The teen years are rife with their own sets of challenges, regardless of whether you are able-bodied or not.

On top of having to rely on other people, I was uncomfortable about asking for help. Teenagers notoriously want independence, but my case was so different. It was literal.

All of these memories came crashing back when I found myself stuck on that soccer field. It wasn’t just about having mobility and physical freedom; it was about the need to overcome an emotional sense of helplessness.

I was forced to come to terms with my physical disability as a teen, and being stranded in that field forced me to come to terms with it all over again. I really thought these feelings were well behind me, but I was wrong.

For so long, I equated asking for help with a lack of independence; I thought if I asked for help—even just a little bit—then that meant I was giving up all the independence I’d carved out for myself. But that day, while I strained to gain some perspective, I realized something pretty poignant: Maybe things don’t have to be so black and white? Maybe I can ask for help and still maintain my independence?

I really thought these feelings were well behind me, but I was wrong.

I decided that it wasn’t a sign of weakness to ask for help; it’s a sign of strength. First of all, people want to help. Second, it actually makes me feel powerful when I use my voice to assert what I need. It makes me feel as though I’m more in touch with myself than I ever was as a teen, when I’d let my uncertainty and worry get in the way of my success.

Everyone—people in wheelchairs, athletes, everyone—has their own set of challenges. No matter what yours are, asking for help is part of the process of finding strength and taking your own healthcare in your hands. That’s brave and that’s beautiful.

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