No, No, No! Well ... OK

by Barbara Twardowski on September 1, 2007 - 11:54am

QUEST Vol. 14, No. 5

Three times I broke my right foot. Three times in the same place — directly below my big toe.

Strangers would ask why I was on crutches and wearing a cast, and I concocted elaborate stories to explain my temporary impairment.

“Skiing, over the holidays,” I’d say.

“Car accident. The vehicle was totaled so a broken foot is a minor inconvenience.”

“Dancing. My partner has two left feet.”

I rather relished the opportunity to be normal. Using crutches, I could fly. With three legs to walk on, so to speak, I didn’t limp anymore. The crutches gave me stability and a new, exhilarating confidence. I no longer worried that I would fall.

While most able-bodied people would find crutches a nuisance, I was empowered. People opened doors for me. They moved out of my way. But the best part was, they didn’t look at me as though I were different.

Third time not so charming

The third time I broke my foot, the doctor suggested I wear a leg brace.

“A what?”  I was a 26-year-old woman. Braces are ugly. Wasn’t it bad enough that I’d never worn a pair of heels? Charcot-Marie-Tooth disease (CMT) had deformed my feet.

I was repeatedly breaking my foot because it dropped down when I walked. I was literally tripping over my own foot and snapping a bone.

I fell easily. I couldn’t run. My upper body would propel ahead of my feet. I couldn’t stand still either, so I rocked back and forth. I spent a tremendous amount of energy trying to force my body to behave. At cocktail parties, I refused to drink, fearing people would mistake my imbalance for inebriation.

As the doctor talked to me about bracing, I asked the important questions.

“What color is it?”

“It depends on the type you get. Some are white or flesh-toned.”

“What kind of shoe can I wear with it?”

“It depends.”

I made an appointment with a prosthetics expert, who advised bringing along several pairs of shoes. He showed me a simple AFO (ankle-foot orthosis) made of white hard plastic with Velcro straps. The only shoe that would fit around it was my tennis shoe.

I was angry. No way would I wear tennis shoes with my navy blue suit or Liz Claiborne silk dress. And the Velcro caught on my stockings. How could I go to my office job in tennis shoes?

I slid my foot into the brace and then the shoe, stood up from my chair and walked across the room.

No more teetering

I was amazed. I wasn't teetering. I no longer had to hike my foot high up off the ground to take a step. Why had I waited so long to get a brace?

A few years later, I sprained the left foot. I got another brace. And for a while, the braces worked.

And I worked. I kept working until I was seven months pregnant. Throughout my pregnancy, I fell. I used a cane and fell; I used a walker and fell. Finally, my obstetrician said I had to use a wheelchair. The 30 pounds I gained while pregnant were completely throwing off my balance.

I didn’t argue or worry about how I would look. I had to do it for my baby.

Hey … I’m still here

But I hated using the wheelchair in public. The first time my husband and I went out to dinner, the waitress asked him, “What would she like to eat?” Using the wheelchair made me a nonexistent person. I was stunned and shocked.

I also hated having Jim push me. I couldn’t see his face when we talked, and he couldn’t hear me. I knew the wheelchair was temporary and necessary, but I was determined never to use one again.

After our son was born, I used a walker for several months. It made me feel old at 33. Gradually, I regained my strength and used only a cane and wore the leg braces.

When my son, Weston, was almost 2, I fell outside a busy shopping mall and dislocated my elbow. Once it healed, I began using Canadian crutches (which link to the forearms) for stability.

A year later, I was walking to a downtown business meeting and my legs just went out from under me, tossing me to the sidewalk. I couldn’t get up. Homeless people helped me.

That’s when the doctor said I should stop working. I did. I couldn’t risk breaking a hip or incurring a head injury. I had a child who needed me.

So I began using a manual wheelchair at the mall, grocery store and at home, and raised an active toddler. We didn’t go anywhere without Jim.

As CMT weakened my hands, the manual chair became impossible to use. My hands would tire and I was unable to roll up slight inclines. After fighting with the insurance company, I finally got an electric wheelchair.

I still had enough balance to place my wheelchair in my car, using a crane that replaced the middle seat of our minivan. When Weston entered fifth grade, his new school was completely accessible. I zoomed through the corridors, serving on the PTA and volunteering in the office. Middle school kids thought I was cool.

But by the time Weston finished junior high, my balance was so poor that I could no longer get the wheelchair in and out of the car independently. I couldn’t go anywhere without assistance.

On the road again

For two years, I lost my independence. I gave up lunching with friends, volunteering at school and going to my Bible study. We considered buying a dropped-floor van but I didn’t want to spend the money.

Barbara Twardowski in van
The author's day-to-day life became considerably easier after the purchase of her wheelchair-accessible minivan.

After injuring my back this past summer, we finally bought a used wheelchair-accessible minivan for $43,000. Now I push a button and the doors automatically open and a ramp slowly extends to the ground. I can drive the van from my wheelchair, which locks into place, again with the push of a button.

Last week, I drove to the high school and picked up my son — by myself.

I’ve resisted using every piece of equipment that has made my life better. Although each brace or chair or vehicle has improved my life, these devices also mean my disease has progressed. And I always wonder — what’s next?

For now, I’m trying to live in the present and enjoy what I can do today. I’m trying to be grateful. I’m 48 years old. Long ago, I stopped worrying how my shoes look with my dress.

Barbara Twardowski lives in Mandeville, La. A freelance writer, she’s a frequent contributor to Quest.

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