Living with a progressive disease leaves me in a ‘pit of unknowing’
With FSHD, I am constantly losing abilities and independence
In the book “Good Enough: 40ish Devotionals for a Life of Imperfection,” authors Kate Bowler and Jessica Richie write, “Blessed are you who are buried. You who feel stuck in the depths of grief and despair or who sit in the pit of unknowing.” Since reading this devotional, I’ve been thinking about the phrase “the pit of unknowing.” I find myself in that pit, looking for a lifeline.
Because I live with facioscapulohumeral muscular dystrophy (FSHD) and lingering damage, including blindness, from a major car crash, I know I will continue to lose my independence until it’s totally gone. I just have no idea if that will be next month or years down the road. The unknowing is tough to deal with.
I think this uncertainty is something many people with degenerative conditions must deal with. As people age and lose capabilities, they join us in that pit of unknowing. The anxiety I’m feeling as I lose ground to FSHD, accident damage, and aging doesn’t make me special, just human. None of us knows what tomorrow will bring.
Grappling with an unpredictable timeline
During my career working with people who, like me, struggled with vision loss, I facilitated support group meetings. Typically, these groups were made up of folks dealing with a variety of conditions, such as age-related macular degeneration, diabetic retinopathy, glaucoma, and retinitis pigmentosa.
These conditions typically cause a gradual loss of vision. We covered a wide variety of topics during these meetings, but one subject that came up frequently was whether it was easier for someone like me, who lost vision totally and suddenly, or for people who were dealing with a condition that was stealing their vision gradually. It was always my contention that I had it easier. My vision was suddenly gone. Despite several surgeries and a cornea transplant, I remained totally blind. My eye doctors were very clear: There was nothing they could do. I was left with no choice but to get over it and move on with my life.
That’s exactly what I’ve tried to do. I spent more than 23 years working with people dealing with vision loss and am always striving to be the best husband, father, grandfather, and friend I can be.
FSHD has been steadily stealing my muscle strength since about age 55. My back, hip, and knee problems from my car crash, combined with the muscle weakness in my calves and feet from FSHD, take away much of my mobility. The devastating effects FSHD has had on my right arm make most activities of daily living much more difficult. Weakening core muscles have made simple things, such as getting out of bed and maintaining my balance long enough to pull my pants up, a challenge.
Several cycles of physical and occupational therapy over the past two years haven’t helped. I exercise, but my FSHD progression continues.
Still, I hope that, somehow, I’ll find ways to accomplish at least some activities of daily living independently and continue to do some of the things I enjoy. I know I’ll lose a lot of independence when I’m forced to use a wheelchair in my home instead of a walker — a transition that’s coming.
The last few times I’ve ridden in a friend’s Subaru to play music for a senior group, it’s been a real struggle to get out of his car. I’m also finding it more difficult to get into the rear seat of our van. I’m wondering if it’s time to think about a van with a wheelchair lift.
I’m trying various adaptive silverware and making dietary decisions based on which foods I can eat without the full use of my right arm.
I’m desperately trying to retain functions for as long as I possibly can. This experience has given me a much better understanding of why many of the people I worked with who had vision loss didn’t want to learn Braille or use technology with speech. They continued to look for more powerful magnifiers, better lighting, and technologies that would allow them to use their remaining vision for as long as possible. They were living in that “pit of unknowing,” as I am now, and holding on to what they saw as a lifeline.
I’m doing what I can to focus on living in the present. My mindset has become, “If this is my last time doing something, enjoy it for all it’s worth.” If there’s something you enjoy doing, savor it every time you do it. We never know when a door may close on a chapter of our lives. Seize every day, my friends, and make it the best one you can!
Note: Muscular Dystrophy News Today 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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