A blessing in disguise: What has my FSHD given me?

I’m reading “Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance” by Ady Barkan, a late lawyer and political activist who had ALS. It’s been a tough read so far.

In the book, Barkan recounts his experiences after being diagnosed with ALS in his early 30s. He does an excellent job detailing his heartbreaking story, in which he continued to live a full life with his wife and young son as long as possible.

In his activism, Barkan used his ALS diagnosis to highlight the importance of preserving the Affordable Care Act, well known as Obamacare, noting how it supports those of us with disabilities. In fact, he was instrumental in saving it when it was challenged several years ago. His efforts included multiple trips to Washington, D.C. to protest. He was arrested on several occasions, leading to media coverage that helped bring the issue to Americans’ attention.

Recommended Reading

February 15, 2024 News by Marisa Wexler, MS

Edgewise Therapeutics’ EDG-5506 on FDA fast track for Duchenne MD

I highly recommend you give Barkan’s book a read. It may bring you to tears, but it’ll also bring some smiles and even some laughter. But there was one question Barkan struggled with in counseling that particularly caught my attention: “What has your ALS given to you?”

Diseases such as ALS, my own facioscapulohumeral muscular dystrophy (FSHD), and other forms of muscular dystrophy take away a lot from those of us who must deal with them. It’s easy to find a list of effects that FSHD or other diseases will have on you. It’s harder to find a list of their benefits.

Reading Barkan’s book has forced me to take another look at my life and ask myself, “What has FSHD given me?”

There was a definite pause in my writing process as I pondered this question. There are no easy answers, but please keep reading, because I did come up with one particular blessing that FSHD has provided — and it’s had a profoundly positive effect on my life.

Investigating my work — and my values

I believe my FSHD diagnosis at age 14 softened my heart and made me a more compassionate person, with a desire to help those in need. These values led me to volunteer for a summer camping program for people with intellectual disabilities when I was in high school.

While I began college as a chemical engineering major and could do the work, I just didn’t feel it was what I wanted to do for the rest of my life. I wanted to help people. This feeling led me to transfer colleges and switch my major to special education.

After college, I put my studies to work. I spent a year teaching in an adult education program, then moved on to a job coaching people with intellectual disabilities, helping them become employed. After that, I spent eight years as a special education teacher in high school.

After my 1989 car crash (with a driver under the influence) that cost me my sight, my wife, Wendy, and I started a home-based business creating personalized recordings for children. We wanted these recordings to be special, so we didn’t just throw in the child’s name on a few songs, then mass produce the recording. Instead, we included the child’s siblings, parents, grandparents, cousins, special friends, pets, and more. (It’s amazing how many variations there are for children to refer to their grandparents. Wendy’s “Nanna,” and I’m “Pappap,” but listing all the alternatives for grandma and grandpa would exceed my word limit for this column!)

I enjoyed ending these recordings by telling the child how special they were. I told them that “your friend, Robin, loves you,” that their family loved them, and that it was a pleasure to sing some special songs just for them.

After making these recordings for a few years, I founded the Somerset County Blind Center here in Pennsylvania. This work didn’t allow me time to continue with the recordings. But I was able to serve with this organization and its successors for over 20 years, until my FSHD caught up with me.

FSHD has slowed me down. I’m not doing as much in the community as I used to do.

The slower pace has, in its way, been another blessing, though. The extra time allowed me to begin writing this column. I also began doing a few personalized recordings again.

Technology has changed. Today I record on my computer instead of cassette tape. After I complete a recording, I share the music on Dropbox, burn it on a CD, or provide it on a thumb drive. So far, I’ve done recordings for my grandkids, nieces, nephews, and other special children in my life. I’ve been thinking about expanding the work so I can sing for more kids. My voice isn’t what it used to be, but I still have that heart of compassion, thanks to my FSHD!

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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.