The Unexpected Benefits of My Disability Becoming Visible

Just recently I moved into a new category of disabled. For many years I’ve been part of the invisibly disabled, struggling everywhere – whether in a store, in a crowd or in a parking lot. I started asking young people to help me – playing the little old woman thing. But I so often had to ask. And sometimes it’s just easier to go home, stop shopping, stop looking for a parking place.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I’ve had some problems with walking for some time now and I had been ignoring it. When I would reel around and stay upright, I was gleeful. “I didn’t fall!” Then I sprained my ankle. It wasn’t a bad sprain; I taped it and a few days later it felt pretty good as long as I didn’t bend it one way. Then I started to fall a couple of times because it would just collapse. In addition, we discovered I seemed to have some nerve damage or impingement on that same leg.

While taped, the ankle felt so secure, so strong! Without the tape, it was just wobbly. Then I realized I was just wobbly. As one fellow EDSer said, rubbery. I have osteoporosis and have been dang careful since my diagnosis to prevent breakage. So I started trying to figure out what mobility aid I could use. Not a cane, the wrists don’t work well enough for that. Not a walker, I can’t lift the sucker in and out of the car. Regular forearm crutches required too much hand/wrist action. I didn’t feel ready for a wheelchair.

Then someone suggested a new type of forearm crutch. They look like something out of Star Wars – I rented a pair and was sent white. I wanted black, thinking I would rock the Darth Vader look. My cousin says the advantage of white is that it’s easier to see. Then the world changed.

All of sudden I have people offering to help me as I enter a store or when they encounter me in the store. I have folks apologizing to me when they suddenly realize I’m waiting patiently for them to get out of the way. I get stares when I’m used to being ignored. I get asked questions since the crutches are really quite different looking. I’m no longer a mousy little old lady, but a standing up straight storm trooper!

I became visibly disabled. I am seen now.

I get help – sometimes even when I don’t want it. I get salesclerks falling over themselves to help me. Folks no longer try to figure out if I’m disabled or not when parking in a disabled spot. They no longer resent my ability to walk after I am seen parking in a disabled spot. Inside, they either give me plenty of space to maneuver or ignore me as if I don’t exist. The dichotomy is truly fascinating.

I keep getting myself into foolish situations, like walking into a store and realizing I have no way of carrying products or using my preference of a small cart. The crutches just don’t fit on it or even on the larger standard shopping carts. I carry my iPad dang near everywhere as it’s my new book du jour – lots of reading material! Well, try carrying that and a pocketbook on crutches. Nope. So I finally got a knapsack (my first ever real one) with deep partitions, buckles, pockets and the ability to adjust to my needs.

In some ways I love it. In some ways I hate it. I also hate having to carry anything; however, my asthma inhaler now has to accompany me. Did you know Maine is one of the states with the highest asthma rates? My occasional mild asthma has turned into a constant mild asthma. Guess it’s not going away again. That inhaler was the last straw for the small pocketbooks I’ve been carrying for years. I moved to a larger cloth bag ($5 at Goodwill) to be able to carry all the bits and pieces that need to go with me now. Then I had to trade it for a knapsack.

I bought a small wristlet purse for the money and credit cards that can be pulled out and used separately. I’m now carrying my Morphie charger for the phone and my car charger as well. I carry a set of ostomy supplies, leaving nothing to chance as I have for years. I bring an eyeglasses case so that I don’t lose or break my reading glasses as I have done so often in the very recent past. And an extra small cloth bag for shopping – though I’ve found enough stuff hanging off the crutches tends to make me much less safer. And the list of contents goes on…

Walking on the crutches has shown me that I’ve been walking so carefully that I was watching the floor, hunching over and walking incorrectly. One of the weird problems of Ehlers-Danlos syndrome is poor proprioception where it is easy to momentarily lose a sense of where the limb is in relation to the body. So when things go bad, it’s truly hard to figure out the right way to do things. This is why EDSers are used to being called clumsy.

I’m now in constant physical therapy using the crutches. I’m standing straighter and walking correctly while using them. I’m starting to be able to better stand straight without the crutches since I’m exercising those core muscles that are still so weak after a massive abdominal surgery two years ago. And it’s less likely I will fall.

As time goes on, I feel less and less conspicuous. I now can go walking even when I feel weak or ill. I can go places where I may have to stand for longer than I want as I can now rest on the crutches. I don’t have to give up shopping before checkout. I’m moving more and enjoying it more. When someone expresses pity for me, I tell them this is the better solution – helping me to avoid a wheelchair, keeping me mobile and self-sufficient.

Now if I can just figure out how to shop as I need while on crutches. I need a tethered float cart to follow behind me. What? Not possible? Au contraire. After all, I now have Star Wars crutches!