When I was 25, I took an unlikely job as an editor at a travel magazine. As a journalism graduate, the editing part of the job was a natural fit; as someone who’d never flown on a plane, the traveling part seemed a little daunting. I’d been diagnosed with Charcot-Marie-Tooth disease six years prior, but at the time, I could still walk a mile and traverse stairs and step over the side of a common hotel bathtub. I had a natural curiosity about the world. I had a position that took care of a lot of the planning — sometimes the hardest part for a 20-something to learn.
The world, it turned out, was waiting for me — and I got out in it.
I traveled with a friend or two or in a large group or (mostly) alone for seven years. I discovered great American cities, bought the best plaid wool scarf in Edinburgh and ate cheese and fruit and bread around a table packed with people sharing a single knife in a little corner of Provencal France.
I believe in the power of travel. I’ve never felt more in and of the world than when I haven’t been at home. The tastes and sounds of each culture, the languages, the history, the struggles and successes — these are things that unite us, that make life rich and broad.
Traveling is difficult for me now. It became so several years ago, before my last trip for the magazine — that glorious eight-day stint in France. For much of the time, I used a manual wheelchair (kindly rented to me from a chemist shop). I loved every second, bumpy as it was on centuries-old streets. And when I got home, I focused on my career. Writing. Growth of a different kind.
This summer, I acquired my first walker. I chose one that was lightweight and quick-moving and not at all cool-looking. As soon as it arrived, I took it to a local Omaha, Neb., bike shop that agreed to make, if not a hipster fixie, a better-looking mobility device. Two weeks later, my walker emerged with gold brake cable housing, gold-trimmed wheels, grippy cork handles and a wicker bike basket worthy of any Saturday morning farmers’ market run.
Betty helps. I do walk faster and more confidently with assistance, now essential every day — and something I knew I’d need when my boyfriend planned to attend a four-day conference in California and I decided to tag along.
The first thing you learn while researching about traveling with your own piece of durable medical equipment is that it can be dicey. Airlines check and/or stow walkers, canes and wheelchairs in a variety of ways; in my case, and with the airline with which I was traveling, my walker was going to be checked at the gate. In any case, it’s not unusual for equipment to be damaged and in some cases destroyed. And while airlines do replace damaged equipment at its original value, they won’t do anything about, say, a market basket hanging off the front.
I ordered a backup walker — one a little heaver and less expensive than Betty. I did take the backup to the bike shop, where I did have new brake cable housing, better brakes, new handles and a gold bell (in lieu of a basket) installed. On our travel day, my boyfriend wrapped the handles in bubble wrap, packed my bell and off we went.
I’d already arranged for wheelchair assistance before arriving at my hometown airport. Omaha’s airport is small, so wheeling through — my boyfriend pushing the walker and I riding in a wheelchair pushed by an assistant — wasn’t an issue. And the first gate check wasn’t bad, either; when we arrived at our next stop, the walker and its wrappings were intact and waiting for us. Subsequent experiences weren’t always so smooth; in some cases, getting to gates on a series of trolleys became laborious. The walker’s wrappings disappeared. At one point, the walker got left outside as we deboarded a plane; eventually it turned up at a neighboring gate.
The first thing you learn about traveling with your own piece of durable medical equipment is that it (probably not ironically) requires coordination.
I’d recommend doing that prior research on procedures and policies; in the future, I’d double-check them with the airline when making wheelchair and other airport transfer arrangements, too. Learn what tools you can take with you for simple repairs (my boyfriend took a screwdriver that was nearly confiscated), and research rental and repair options in your destination before you take off.
There can be other obstacles. It’s important to call hotel or other accommodations and make sure accessible rooms are truly accessible; we had to switch rooms in our hotel upon discovering one of those common bathtubs, over which I can’t step any longer, no matter how many bars surround them. Getting the lay of a hotel’s public land early on is key, too; locate ramps and the best accessible doors. Chat with the desk staff or concierge. Scope out restrooms. I learned pretty quickly that visiting the ladies’ is one thing on foot and another on foot-and-wheels; when there’s no button or samaritan to open the door, opening the door becomes its own negotiation.
You will find new kindnesses. There will be an Uber driver (or a dozen) who will help tuck up your equipment for a ride. There will be a hostess who finds a spot to stash your walker at dinner. There will be at least three people at the airport who offer to push, to give up their seat, to carry something for you just for a little while.
My walker did not come through entirely unscathed; an edge of the backrest padding is slightly mangled. Stickum from a claim tag is still waiting for removal. I’m glad I didn’t take Betty. But if Betty had been my only option, would I still have gone? Yes. I would. I would’ve packed her basket and padded her and fixed her back up.
Traveling with medical equipment — and with a disability — is more complicated than it is without. There’s a layer of awareness required in addition the usual travel planning, and sometimes, for a minute or five, that takes some of the fun out of it. And then you turn around and see an ocean you haven’t seen in 12 years, and the walker and the ramps and the caution and precaution fade because there is the world, and you are in it.
I’m still working out the new rules and ways of traveling. But now, again, I’m traveling, and it seems not so unlikely.
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