Doing what is necessary as my FA symptoms progress
A columnist must decide if it's time to transition to using a wheelchair
The Friedreich’s ataxia (FA) transition I have dreaded for over a decade is approaching, and I am beyond overwhelmed. Despite my best efforts, adaptations, precautions, hopes, fears, and routines, I think the transition to a wheelchair is right around the corner.
You might be asking, “Why do you think that?” The answers to that question are piling up, and they keep me awake at night.
The main reason is the number of falls I have experienced lately. In the last eight weeks, I’ve had six significant falls. Luckily, none resulted in injuries that required the intervention of a medical professional. I just had scrapes, bruises, and stiff or sore joints — nothing that rest, ice packs, and antibiotic ointment couldn’t handle. But eventually, my luck will run out, and I fear what will happen when it does.
Falls are completely devastating to me. They are equal parts terrifying, embarrassing, and discouraging. When my body is recovering from a fall, I usually can’t exercise safely, which makes me more resentful of my disability. The reality of how disabled I am becomes undeniable. Then there’s the monumental task of recovering emotionally, too.
This process generally involves deciding how the fall happened and how it could have been prevented. Unfortunately, the answers lately have boiled down to: It could have been avoided if I wasn’t walking.
I have lost confidence in my abilities. I don’t trust my body to walk, even with my walker. I shy away from doing much unless I have another adult around to help me, and that isn’t fair to my husband or friends, nor is it sustainable with my lifestyle.
Walking has become risky and exhausting. Although surrendering that freedom and ability terrifies me, I’m enticed by the safety and energy preservation a wheelchair would offer. I often find myself simply longing for an easier existence.
The logistics of transitioning from walking to sitting overwhelm me. There are seemingly billions of different wheelchair options, so which one is right for me? What modifications will be needed to make my house fully accessible? (We’ll need to adjust the shower, sinks, microwave, stove, ovens, doorways, thresholds, cabinets, washing machine, light switches, etc.) How will I drive? How will I get my wheelchair in and out of the car by myself? How will I stay in shape to prevent back pain and muscle atrophy? How will I go to friends’ houses that aren’t wheelchair-accessible?
These questions make me want to cry.
Prioritizing my safety
Since my FA diagnosis in 2013, I have been doing my best to accommodate my symptoms and adapt my life based on my abilities.
I recently heard an inspiring Winston Churchill quote that provided some clarity and perspective on my situation: “It is no use saying, ‘We are doing our best.’ You have got to succeed in doing what is necessary.”
Staying safe is what is necessary now. If a wheelchair is the best way to do that, then it’s time to make the transition. I have muscled my way through my symptom progression for over a decade now. I don’t need to needlessly injure myself because I refuse to accept the reality that what had been working for years might no longer be an option.
As sad as that makes me, I need to start figuring out what is necessary to make the best of my current situation.
“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.” — Isaiah 41:10
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.
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Comments
Stuart Harding
It took me ages to accept the wheelchair, and as much as I hate it, I love it. Easier to get around, no fear of falling, and best of all, less fatigue. The only suffering involved the wall and door frames in the house.
T
Great post about the complex emotions of the transition. It sounds like I am at a similar stage to you with my FA. Making the decision to use a chair feels so absolute, it feels like admitting defeat but the benefits would be numerous. Energy preservation would be huge.