I Can Still Walk in My Dreams
Often I’d rather dream than face reality. I reflect on this most mornings, when the sun rises enough to turn the sky pinkish-blue and my eyes flutter open.
Typically, I wake up on my left side and have to turn myself over to get out of bed. But turning over isn’t as easy as it once was. I reach for the trusty SuperPole, which not only allows me to transfer into and out of bed independently, but also provides a handy grip when I need to turn over.
After I turn over, I grip the SuperPole’s handle tightly and sit up with my legs dangling off the edge of the bed. I try to keep my uncooperative feet squarely on the floor for support, then hoist myself from the bed to the seat of my wheelchair, landing on the seat cushion with an awkward thud.
I should be used to this maneuver by now, but the progression of Friedreich’s ataxia (FA) is still like a splash of cold water in my face every morning, even though it’s been 18 years since I started using a wheelchair. Every morning, I’m still surprised and disgusted by how much I strain over a simple transfer.
It seems cruel that while I’m asleep, I believe I’m fully functional. My dreams make me forget I’m disabled. For a few glorious seconds on most mornings, I forget about FA as I’m caught between holding on to my dreams and waking up. Then, I face my loss of abilities anew.
As I was writing this column, an episode of the podcast “Throughline” highlighted the importance of dreams throughout most of human history. Sigmund Freud wrote a book about the power and influence of dreams, although many of his ideas about the subject aren’t considered as serious these days, including what I learned during my own mental health education.
I believe that our own self-perception reveals itself most clearly in the main characters of our dreams. And in my dreams, I don’t need a wheelchair.
While the progression of my symptoms is disheartening, it varies significantly from one person to the next. As someone in his mid-30s, it’s true that some people my age, and even older, can walk without the assistance of a wheelchair, but others who are younger than me have symptoms I don’t, such as diabetes, heart arrhythmias, fatigue, blindness, and difficulty transferring independently. Some even face death due to FA.
I am incredibly fortunate to be able to function somewhat on my own, even with a SuperPole, a wheelchair, and an increasing amount of help with performing my daily activities. I don’t take my independence for granted, especially when thinking of others in similar situations.
But that doesn’t make accepting my limitations any easier. Maybe it’s foolish and petulant, but it’s also heartbreaking to wake up in a disabled body every day.
On the other hand, it allows me the space to ponder the eventual development of a treatment or cure, which may not be too far off. The first investigational treatment for FA could obtain regulatory approval in the U.S. as early as this year. Other exciting advancements are happening in the field of gene therapy.
Perhaps I will only walk again in my dreams. But what if reality catches up to our dreams?
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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