My Wheelchair Experience Shows Me We Should Be Aware of Others

I’m not a fan of cold weather at all. Even when I could manage my legs with skis or a snowboard attached, I was never interested in being out in the snow. Of course, I enjoy the views of white-tipped trees and mountains, but I find they’re most enjoyable from indoors, sitting next to a fireplace with a cup of hot cocoa.

The progression of my Friedreich’s ataxia (FA) and its mobility issues, paired with my dislike of cold temperatures, means I’m never tempted by snow or cold regions, no matter how lovely they are to look at.

Warmer temperatures and sunny days are significant reasons I stay in California; the weather is hard to beat. However, we’ve been dealing with unusually cold weather and much more rain lately. California needs the rain, so I’m not complaining about that. But this cold, wet weather made me excited for a cruise to Mexico I’d planned to kick off 2023.

As I chose to do on my cruise last year, I used my wheelchair on the trip. I’m still independent at home and can manage my mobility issues with the aid of a walker, but I find the wheelchair to be safer on a cruise. Not only does it help me manage the constant motion of the ocean, but it also allows me to conserve energy and save some time.

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January 5, 2023 Columns by Kendall Harvey

Setting My Intentions for a New Year With Friedreich’s Ataxia

My sail date was Jan. 7, just one week into the year. The weekend before, I’d watched several New Year’s TV specials that featured various celebrities and musical artists. For example, Dolly Parton paired up with Miley Cyrus to co-host “Miley’s New Year’s Eve Party.” NBC also showed a “Today” interview in which Parton implored viewers to show more kindness in 2023.

I didn’t think much of the sentiment at the moment, as it felt too general and basic for me — almost a safe call to action that lacked any specific direction. However, on the second day of my cruise, which was spent entirely at sea, Parton’s message to “try a little harder” to be kind started replaying in my head.

As I navigated the ship, still getting used to the limitations of the wheelchair, I had to take extra caution when transporting my food and drinks and wait several times for an elevator. On a large but confined cruise ship with roughly 4,000 other passengers, this wasn’t always easy.

Some people offered to open doors for me, carry my drink to my table, and even let me on the elevator first. However, those helpful folks were the exception. Although I didn’t encounter any intentional rudeness, most people simply didn’t notice me or my wheelchair.

Recalling Parton’s message, I wondered if kindness is what the world is lacking. As I reflected more on this during my cruise, however, I realized that what we lack instead is an awareness of others. Self-absorption is all too typical.

I’m convinced that if we challenged ourselves to put others’ needs first in everyday life — by simply opening the door for someone or offering to help carry items when their hands are full — the world would be a much better place. Ultimately, kindness will be the byproduct of increased awareness, and everyone can benefit from it.

This year, instead of simply resolving to be kinder, I intend to pay attention to those around me, put others first, and find ways to help — big or small.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.