The rigors and rewards of traveling with a disability

The Best Therapy
The rigors and rewards of traveling with a disability
By Heidi Nye | Illustration by Neil Webb
Westways September 2011

When my kidneys failed in January 2009, I figured my traveling days were over. Hooked up to a dialysis machine for 10 hours a night, I sometimes found just traveling from my bed to the bathroom a daunting journey. Yet I longed for adventures.

So as soon as my condition stabilized, I flew to Nova Scotia to spend six weeks in a cabin near the Bay of Fundy, hiking in the woods with my dog.

After that trip, I stayed with friends in Paris and the French countryside, took a solo road trip along the California coast, and made my maiden journey to Las Vegas to see if the reality matched the hype.

Getting to the destinations was not all fun and games. Prior to each trip, I had to arrange for delivery of a 30-pound box of dialysis solution for each day away. At the airport, I was invariably patted down and made to partially undress so that the Transportation Security Administration (TSA) inspectors could examine my insulin pump and dialysis tubing. My machine was too sensitive to risk checking, so I’d lug its 40 pounds onto the plane. And one of my checked bags was devoted to the surgical masks and other medical paraphernalia required to perform dialysis.

I found the trips to be worth every bit of the effort. I learned that besides the pluses that naturally come to any traveler—new experiences and learning opportunities—travel can empower you if you have a physical challenge. At home, you often must put your trust in doctors; when you travel, you transform into someone who can rely on their own resources to navigate unfamiliar lands. You can then take this newfound confidence back with you to better negotiate the rough terrain of health-care systems.

Travel emphasizes the big, wide world, making it easier to not focus on your infirmities. The aches, pains, and inconveniences of chronic illness or disability temporarily take a backseat to the adventure ride of new sights, sounds, textures, and tastes. When you’re caught up in the quiet majesty of a redwood forest or the vibrant energy of the Champs-Elysées, it’s easy to mute the internal emotional din of physical challenges.

Illness and disability can be isolating, but travel forces you to mingle with strangers. It also brings you into contact with others who are traveling despite oxygen tanks, dialysis equipment, and wheelchairs. It becomes clear that you are not alone: Nearly 1 million Americans are on long-term oxygen therapy, more than 100,000 begin dialysis each year, and 1.6 million living outside institutions are wheelchair-bound.

“Modern medicine has created all sorts of outrageous gizmos to keep patients alive,” says Downey-based nephrologist Michael P. Butman, “but does that necessarily give patients the quality of life they want if they’re not doing the things they used to enjoy doing? If you derive enjoyment from travel, you’re probably going to feel better about yourself and about being compliant with your treatment [if you travel].”

Pushing yourself to travel despite the rigors of dealing with a disability can give you the gumption to do other things you’ve put off because of your condition. Maybe now you’ll finish college or gain fluency in French or write that novel.

Travel, in part, gave me the confidence to fight for a spot on the kidney transplant wait list.

Then last December, I had a successful kidney transplant. The courage and strength I developed through traveling helped me face the surgery without flinching. Though I no longer undergo nightly dialysis treatments, I’m a living example of the fact that travel opens doors, not only to the world outside, but to the even grander world within.

Long Beach–based journalist Heidi Nye writes unique poems for special occasions at The Wedding Poet.

Taking the Bumps Out of Traveling With Medical Equipment

Before You Go

Scope out your destination. Ask if your hotel and nearby attractions are wheelchair-accessible and if your hotel has backup electricity. Can nearby medical facilities handle your condition in an emergency?
Work with a travel agent. Your travel agent can provide information to assist you in making the necessary arrangements to support a physically challenged traveler.
Check your health insurance. Does it cover you out of your area or overseas? Consider travel insurance that covers medical emergencies and transport, as well as trip cancellation. Discuss travel insurance options with a travel insurance provider at the time of booking to discuss your options, including preexisting conditions coverage.
Provide information ahead of time. Give as much information as possible up front to the airline reservation agent, your hotel concierge, and the Transportation Security Administration (TSA).
Check Federal Aviation Administration (FAA) regulations. Not all medical devices are FAA-approved. Some may interfere with flight equipment. Provide specific information to your reservations agent about your device.
Make sure your equipment will work overseas. Do you need a converter or a transformer? You can purchase supplies from Magellan’s.
Secure a doctor’s note. Some airlines require this. The TSA allows medical oxygen without a doctor’s letter, but only certain portable oxygen concentrators are approved by the FAA for use on airplanes.
Request a mobility-impaired bedroom on a long-distance Amtrak train. If possible, plan your itinerary from one staffed station to another so that attendants can assist you, if needed.
At the Airport

Arrive early. Plan to arrive an hour and a half earlier than normally required.
Wear easily removable shoes. If a disability prevents you from removing your shoes, let the officer know so that you can be screened using an alternate method.
Resources

Amtrak, special needs, and accessibility
Transportation Security Administration

http://www.calif.aaa.com/westways/2011-09/Pages/best-therapy.aspx