Anticipating the storms of 2025, when I’ll be using a wheelchair
More independence will come, but only after I protect myself from the rain
As I begin 2025, all of my planning, expectations, projects, and so forth are through the lens of this awareness: This is the year I’ll start using a wheelchair full time.
Knowing this shift was coming has been both helpful and hard. As my family and I fully embraced the Christmas and New Year’s festivities, I let myself get swept up in the happiness and nostalgia of it all. Meanwhile, I was constantly plagued by this nagging thought, which never left my brain: “What will this look like next year from a wheelchair?”
I pushed through the bleak, heavy, and complicated feelings this question yields and had a wonderful holiday season. It remained wonderful even in the wake of a scary fall I had at the beginning of December.
A painful reminder
I’m a co-leader for the Girl Scout troop my daughter, Collins, attends. We took them to sing Christmas carols in various wards at a nearby retirement home, including the memory-care ward.
After we parked outside the lobby, I walked around to get my walker out of the trunk of my SUV. My daughter raced over to join her friends, who were gathered near the entrance, but I lost my balance and began to fall. By instinct, I dropped my walker to free my hands to help brace myself when I hit the ground. My left arm and the left of my backside took all the impact.
My friends all raced over to help. A quick inventory told me that nothing was broken, so I decided to smile, accept help getting back on my feet, and focus on the Girl Scout outing.
Adrenaline-fueled shock is a real thing. I was able not only to keep it together, but to truly enjoy the sweet sounds of the girls leading the retirement home residents in carols. The minute I got in my car to drive home, however, the shock wore off and my body felt my injuries.
Sitting was incredibly painful, but I’d injured my tailbone and pelvis worse in the past, so I knew that those would heal in a few weeks. What worried me was the heel of my palm and the base of my thumb, which were throbbing. Since I could move the thumb, though, I knew it wasn’t broken. At worst, it was sprained.
When I got home, I immediately got into bed, took pain relievers, and properly positioned ice packs around all of my injuries. As I sobbed, I couldn’t help but think, “This could’ve been avoided if I’d just embraced my fate and been in a wheelchair.”
After giving myself a day of lying in bed and icing my battered body, I slapped a brace on my thumb and got back to life. I gave myself grace with reminders that hindsight is always 20/20, and my issues aren’t solved as simply as being in a wheelchair. I have a lot to figure out, and I’m working on it.
Facing the rain and storms
I recently came across an inspiring poem by Sharyn March that reads as follows:
“Monarch butterflies will not attempt to fly in the rain
because the rain drops will damage
their delicate wings
they will rest
and wait it out
it’s self-preservationit’s okay to rest
during the storms
in your life
take all the time
you need
you will fly again
once the storm passes.”
For me, 2025 will be the year of the butterfly, and transitioning to a wheelchair will be the big storm. But it’s self-preservation, and I’ll again be independent once the storm passes.
“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” — Galatians 6:9 (NLT)
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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