How my perspective about mobility aids has changed over time
Mobility aids can help to restore independence as FA progresses
I’m often asked to share my perspective about the future as a progressively disabled woman with Friedreich’s ataxia (FA). The question always makes me ramble on with a series of contradictory thoughts and words like “afraid,” “unsure,” “sad,” “overwhelmed,” and “anxious.” It’s clear I haven’t devoted much time to processing such thoughts about the future.
As a result, I’ve dedicated a good amount of time recently to thinking about my future with FA. Following are a few of my more organized conclusions about the topic.
I am hopeful that more FA treatments will become available to battle an ever-expanding list of progressive and degenerative symptoms I will face. But, at least in the near future, I must face the reality that my disabilities will become even more disruptive to my lifestyle. My abilities will diminish. As sad as it is to see that written in black and white, it doesn’t pain me as much as I once thought it would.
When I was diagnosed with FA in 2013, at the age of 25, I thought that my life as I knew it essentially would be over as soon as I became dependent on mobility aids. That is part of the reason I fought so hard to walk independently again after recovering from a broken ankle and surgery in the summer of 2018.
In February 2019, I could no longer deny that I needed to use a mobility aid. It was essential, not only to help me walk safely and prevent another catastrophic fall, but also to preserve my energy and restore independence.
It seemed so counterintuitive to me that becoming dependent on a mobility aid would restore my independence, but it did. I no longer found myself waiting for my husband, parents, or friends to help me do the things I needed to do. I could do more things independently with the aid of my walker than without it.
Because of these evolving experiences with my walker, I can now add “hopeful and excited” to my list of adjectives describing the future. And although I do wish that mobility aids weren’t part of my journey, my fear of the future has diminished because of them.
I know that the complications a wheelchair or a mobility scooter will add to my life will require a logistical and emotional adjustment. But I can also see how a wheelchair will aid my mobility so that I can continue to be an active participant in my life.
A common refrain in the faith community notes that while I may not know what my future holds, I do know who holds my future. I relate to that sentiment more and more every day. I trust that my future will have good things to outweigh the bad, because the one who holds my future is good.
“‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'” — Jeremiah 29:11
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.