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.
Last week, my family and I went to the beach with our neighbors for a fun end-of-summer getaway. We stayed in a precious beachside rental that had a room full of bunk beds for the kids, plus everything else we could need. It was wonderful. The only problem was that it was a two-story house.
All of the living areas were downstairs, and the bedrooms were upstairs. For most people, that wouldn’t be a problem. But for this walker-dependent Friedreich’s ataxia (FA) patient, it quickly became incredibly frustrating.
If I go slowly and hold on to secure handrails, I can go up and down stairs. However, I am unable to carry my walker up or down stairs, so I had to have one of the other three grown-ups in the house follow me with my walker so that I could safely walk once I reached the other floor.
This may not sound like a big deal, but to me, it was just one more reminder of my disability. I wasn’t capable of doing the things that healthy people are able to do while on vacation. I was already feeling pretty helpless, since I couldn’t carry coolers, beach gear, or luggage, but now I couldn’t even go upstairs to help my daughter put on her swimsuit or grab my phone charger by myself. I went back and forth between feeling like a burden and a leech the whole time.
I wasn’t able to contribute in the way I wanted or be productive. It put a dark cloud over our sunny beach experience.
The truth is that I had the same abilities and disabilities on vacation as I do at home, but my home is more accommodating, so I am more independent here. I can safely get in and out of the shower by myself because I have handrails. I can safely get in and out of the house because we have flat thresholds with no stairs. I can reach everything I need in the kitchen because I intentionally set it up that way. Plus, I feel comfortable at home, where I trust my surroundings and my ability to navigate familiar spaces.
When I was diagnosed with FA in 2013, my first fear was that my husband, Kyle, would grow to resent me as my symptoms progressed, I became increasingly disabled, and his role as caretaker expanded. That fear turned out to be moot, because Kyle is the most patient, caring, and encouraging spouse, and we have an open dialogue. I still do whatever I can to ease the burden on him by maintaining as much independence as I safely can.
Our vacation made me think about my perspective on my reality. Neither Kyle nor our family friends ever complained about my requests for assistance. They readily offered help, whether I needed it or not.
I deserved an enjoyable vacation as much as everyone else there, and the help requested and given was less of a burden than I felt it was. I simply need to take a moment to remember that assistance is usually given from a gracious place of love. I need to remind myself that I am wildly blessed to have people who do not view my disability as a reason for pity, but rather an opportunity to make my daily dark cloud a little lighter.
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