I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2015 and it was not until May 2017, while confined to a wheelchair, that I took my first flight as an NMOSD patient. My mom took me to Los Angeles, California, from our home in Cincinnati, Ohio, as a gift after graduating from cosmetology school and passing state boards.
A few months before my California journey, I took a 7-hour road trip in a van to Atlanta, Georgia, to attend a conference. Despite the limitations of being in a wheelchair, it wasn’t too difficult because I was able to sit in the back seat and stretch my legs across the whole back. Also, I didn’t have to worry about getting out of the vehicle to use the restroom because I had enough room to change the brief that I wore as needed.
As the summer vacation season begins, airlines worldwide are canceling flights and dealing with overcrowded airports, frustrated travelers, and staffing shortages. For rare disease patients like me, air travel presents unique, anxiety-inducing challenges. And that has me looking back to my first air travel experience in a wheelchair.
I was nervous but curious to know how wheelchair users get on flights. I knew there have been many before me who have traveled by airplane but it never dawned on me what the experience was like.
My mom booked the flight on the phone. She was questioned about my walking limitations, whether I needed an escort to the gate, did I need an airline wheelchair, and did I need an aisle seat. To secure my seat, I had to give the height, weight, and width of my wheelchair.
Read about therapies for NMOSD
Prior to the day of my trip, I went on YouTube to see if I could find some videos and have visual representations of what would happen that day. NMOSD is a rare autoimmune disease that affects the optic nerves and the spinal cord. The pain, muscle weakness, and diminished vision with this rare disease are obvious deterrents to travel. That’s why doing advance homework on what the air travel experience for me would be like was so important.
On the morning of my flight, checking in was complicated but largely went well because I was prepared. After checking in my main luggage, I was especially careful checking in the small suitcase that had my daily care supplies, and the pads that I place on my bed before retiring for the evening.
Once I was done checking in, my airport transport representative was called and almost like a hospital transport, escorted me through security screening, which was a significant perk because I got to go through the fast lane. Transport takes me all the way to my gate. When it was time, I was taken onto the plane and carefully transferred to an aisle chair.
I was strapped in with seatbelts so I could stay secure while they maneuvered me to my seat on the plane. The aisle chair was very narrow. I was first to board, along with those traveling with me, and the last one to exit the plane when we landed.