I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
As with most vacations, I knew I’d be in for a lot of walking when we took our children to Boston this summer. That meant I had to think about which mobility aid I should bring after considering safety, practicality, transportability, and access.
I first visited Boston in 2011 and fell in love with the city. I enjoyed the food, history, desserts, sports, parks, personality, shopping, and more. It was a fantastic trip, and my husband, Kyle, and I were eager to return and see Boston through our children’s eyes.
However, our last trip took place before Friedreich’s ataxia (FA) entered my life and began diminishing my balance and coordination. I anticipated that this trip would be a different experience, and I desperately hoped that it’d still be enjoyable.
Traveling with FA
Kendall Harvey, center, and her children head into a Red Sox game in Boston. (Courtesy of Kendall Harvey)
FA adds a layer of complication to everything in my life, especially traveling. I knew that revisiting a busy city with historic sidewalks and tight spaces could be challenging for my newly disabled body. I also know what happens when I ask too much of my body, so I had to think things through.
I didn’t want to depend on someone pushing me in a transport-style wheelchair with wheels that don’t handle bumps and uneven surfaces well, so I decided that the wisest choice would be to rent a mobility scooter.
Overall, I was pleased with my choice. I brought my two-in-one rollator walker and wheelchair to use at the airport and in the hotel room, and I used the rented scooter when we explored the city. I was able to do almost everything and keep up with my family, which was my goal.
With the scooter, I was able to maintain a level of independence. I was also able to hurry across crosswalks safely, traverse uneven walkways that would be unsafe for me to walk on, and maintain my energy for long, adventure-filled days. I even braved the subway system on my scooter.
Kendall and her daughter ride the subway in Boston. (Courtesy of Kendall Harvey)
I was so pleased with how accommodating the people of Boston were, and I was pleasantly surprised at how accessible most of the city was for me.
However, spending nearly a week sitting wasn’t all positive. There are many things I don’t enjoy about being disabled, and those things become more apparent when I’m not at home, where we have adaptive measures in place to accommodate my physical limitations.
I know the nature of FA is progressive and degenerative and that the days of me needing to sit full time are approaching. This thought overwhelms me. I’m not emotionally or mentally ready for this transition.
Becoming dependent on a walker was difficult, and even after more than five years, I’m still getting used to it. Life with a progressive disability demands constant adaptation. I know that accepting a full-time seated mobility aid — be it a scooter, manual wheelchair, or electric wheelchair — will be a lengthy process requiring copious amounts of patience, grace, adjustment, and humor. Getting previews of that life, such as my observations on our trip to Boston, has made that obvious.
No matter what my disability requires of me, I know one thing for sure: I’ll always choose to experience life over pouting about my disability. This world has too much to offer, so I’ll continue to adapt and enjoy it.
“So be careful how you live. Don’t live like fools, but like those who are wise. Make the most of every opportunity … .” — Ephesians 5:15-16 (New Living Translation)
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