I’ve often heard about the multiple stages of grief, especially when faced with the loss of my dad. I’ve wrestled with grief as I’ve come to terms with expectations for myself following my Friedreich’s ataxia (FA) diagnosis. On my podcast, this seems to be a recurring topic among the folks we interview, most of whom are affected by rare disease as well.
We’ve likely all had to come to terms with putting aside our 2020 goals before April due to the ongoing pandemic. Whether we’re facing a rare disease, a passing loved one, a cancelled event, or spending most, if not all, of our time isolated at home, most of us are dealing with one stage of grief or another.
I’m currently preparing to move across town. I’ll only be going about 10 miles, so this could be labeled an “easy” move. I don’t have to coordinate professional movers or shipping containers, start a new job, or worry about the time it takes to travel across the country. Although it’s an “easy” move, comparatively speaking, no move is easy, especially when living with a debilitating disease like FA.
I’ve come to realize that I’ll experience different stages of grief my entire life. Although things become easier to manage, some things just hit me differently at different times.
I was diagnosed with FA in May 2007. It was a shocking and surprising diagnosis accompanied by “play-it-safe” advice: Buy a home without stairs, avoid treadmills and free weights, stick with swimming for exercise, consider a walker, and so on.
None of this was bad advice — it just didn’t resonate with me at the time. After 13 years, I feel like I’ve come to terms with the realities of FA and its progressive nature.
However, while looking for a new place, I realized that my abilities are different today than they were 13 years ago, and I found myself wrestling with grief once again.
I was reminded that an apartment that’s only accessible by stairs isn’t the best scenario for me. Neither is a shower without ample space for a shower chair and a grab bar. Every place I looked at had pros and cons, and in the back of my head, I thought, “It’s just temporary.”
After a few site visits, I found myself asking two questions frequently: “What if?” and “How long?” What if I fall and break a leg again? What if I need to use a wheelchair sooner than I expect? How long is temporary? How long before the next noticeable change in my progression?
Although I’m not one to live in pessimism or fear, I also pride myself on being realistic and somewhat reasonable. I’m careful to lay out all the pieces of a puzzle before I conjure up a plan of attack. In addition to laying out all the pieces, I also keep the end result in mind, or a picture of what could be within close reach.
I’m not sure how “experts” might advise me to deal with grief, but looking at the big picture, recognizing both pros and cons and keeping the ultimate vision in mind allows me to remain grateful and optimistic.
I’m grateful that I’m not done yet and confident that the future is bright, even in the midst of grief.
A fellow FA patient and Friedreich’s Ataxia News columnist, Kendall Harvey, recently wrote about the many things she is grateful for. Her perspective on the challenges of 2020, and on FA, are inspiring me to remain hopeful and grateful in the midst of grief and the holiday season.
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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