When Your Traveling Disability is That You Can’t Sit

Long ago, in what now seems like a galaxy far away, I was a businesswoman who traveled very light. Everything I needed fit into a very small carry-on case. Airport and flight delays did not bother me. Traffic jams were no big deal. I was in high-tech public relations and flying to different cities frequently as part of my job.  

And then in 2007 I developed a rare condition called sciatic nerve entrapment. Unlike the people with disabilities who are wheelchair-bound and cannot stand or walk, I have nerve entrapment in the piriformis muscle of each leg, and cannot sit without intense pain. It is not related to the spine.

Since my disability is not visible or apparent, it means that in some situations I can “pass” as normal, whatever normal is. If you saw me standing in a bar or walking on the street, you would not know there was anything amiss. But – it presents frustrating challenges when I am in a situation of forced sitting, which could be on a plane, at a conference, a dinner, or a social gathering.

The general public is dubious that someone who appears to move with little difficulty might have a serious invisible condition. It has taken me a long time to come to terms with the cards I was dealt, but now I am more strategic about planning ahead for travel, and more intrepid about speaking up to let people know my limitations. I’ve also become more creative.

In 2009-2010, I had to fly back east regularly in order to help take care of my mother. It was a five-hour flight each way. I came up with a workaround, because sitting in a plane seat that long, and taking multiple trips to plane hop across the country, were out of the question.

On the very first flight, I boarded early and told the flight attendant about my condition. I asked if I could help pass out snacks and collect trash during the flight, in addition to standing in the back of the plane. He was more than accommodating, and since that time when I have long flights I volunteer to help the crew. They have more empathy for people like me now, I’m certain.

It helps to see the humor in some of the things we have to do now because of our condition, whether visible or invisible. On that Southwest Airlines flight, I happened to be wearing a white polo shirt and tan khaki pants. Unwittingly, I looked just like one of their flight attendants! The crew put a pair of wings on my shirt and announced over the loudspeaker that there was a new flight attendant on board, and to be kind to Linda since it was her first day. Many of the passengers fell for it, hook-line-and-sinker. We were about 2.5 hours into the flight when a passenger asked me as I walked past what part of the country we were over. I had no idea. I replied as authoritatively as I could, “Kansas,” and moved on down the aisle.

Since ice bags are not permitted through security, and I absolutely cannot sit more than a few minutes without ice, I bring plastic bags with me and once on board, ask the flight attendant to fill it with ice. I may have to empty and refill the bags a couple of times during a flight, but the cold is good for numbing the nerve pain. Sometimes the bags can leak, so I’ve learned to wear dark jeans so that it doesn’t look as if I had an unfortunate incident en route! I also bring on board two pillows, wear lidocaine patches, and take a muscle relaxant.

The days of traveling easily with one tiny carry-on are gone. I have come to terms with that. I know I am lucky to be able to be somewhat mobile, yet on the flip side, there are so many times when I thought, oh it would be so nice to be able to sit without pain! I’d like to be able to sit and watch a ballgame in the ballpark. I’d like to be able to go to a concert. I’d like to be able to sit at a computer and work for hours. I would like to go to an all-day conference and listen to the speakers. I would like to sit down on a rock after hiking a short trail. It would be nice to experience a long romantic or social dinner instead of a hurried up, drinks-and-appetizer meal.

Over the last eight years, because of this condition, I have come to a better understanding of the challenges that people face with travel, and how unwittingly our society has not done its best to accommodate those of us who don’t represent the “average” traveler.

There is an expression in social media about the “wisdom of the crowds.” We can’t influence that collective opinion unless we speak up. Individually it is a tough road to manage our disabilities, visible or invisible, but together we represent a powerful voice. If we summon the courage to share what our world is like, the more people will get it. Sites such as www.brettapproved.com are a great step (or wheel!) forward.

I often think of this stanza from Tennyson’s poem “Ulysses” when I need encouragement:

We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

We must keep pushing.

Linda VandeVrede 1 total posts