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 the Fourth of July approaches, I’m thinking about the word “independence” a lot. At 32, my independence looks different than I’d once imagined.
As a Friedreich’s ataxia (FA) patient, my body is progressively losing so many abilities. Most noticeable and problematic is my degenerating coordination and balance. Because of this, I use a mobility aid full time. For now, I use a walker to keep me safely on my feet, whether or not I have someone around to help me.
I have been using a walker for about two and a half years. After getting over the initial shock and adjusting to needing full-time assistance, I wrote a column about how becoming dependent on a mobility aid restored my independence. And it truly did.
I no longer had to wait for someone to help me by lending an arm when I was out running errands. I no longer stayed inside on the couch when my kids were running around the yard. I was able to safely be a part of the action, by my own authority, at my own speed. I felt empowered. I was capable again. I was independently able to face and overcome the challenges FA put in my way.
But because my balance has progressively worsened, I’m redefining my independence again.
I am now dependent in new ways. I frustratingly have to request and accept help beyond what my walker provides. I often find that even using my walker full time isn’t enough. I need someone to help steady me when I am standing up and reaching for my walker. I need someone to walk beside me and control my momentum when I am going downhill with my walker. I need someone to help me reach for high things or carry heavy things that I used to be able to handle so long as I had one hand steadying myself. I can no longer walk with one hand on my walker and one hand holding on to one of my children’s precious hands.
In other words, my walker, the savior of my independence, is no longer enough. Once again, I am dependent on help from others.
This new stage of progression has happened slowly. But as I had to do after the sobering realization that I needed the walker in the first place, I now have to figure out where I most need independence, and then find the solution that best fits into my life.
What will that look like? A more stable four-wheel walker? A wheelchair around the house so that I conserve energy and strength? A scooter when I’m in public so that I can maintain my level of activity around the house?
I honestly have no idea yet. What I do know is that I now have no independence from FA. FA is everywhere all the time. It is relentlessly becoming a more problematic part of my life in every single way. My walker used to be enough to combat my worsening balance and coordination, but my progressing symptoms have made my mobility aid attempts look like little Band-Aids on a cruel, life-shortening disease.
I am confident that by Independence Day 2022, I will have reclaimed some of my independence from the relentless and tireless conqueror and usurper that is FA. But this year, I will reflect on all that my walker has allowed me to do in the last two and a half years, and continue my search for a solution that works for the current stage of my constantly diminishing abilities. In other words, I won’t stop fighting FA for my independence.
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