As my FSHD progression worsens, I’m battling feelings of shame

My facioscapulohumeral muscular dystrophy (FSHD) has progressed to the point where daily activities are increasingly challenging, and often impossible, to manage on my own. As a result, I now need more help than ever before.

I know I’m doing the best I can. I exercise daily, hoping to keep myself moving for as long as possible. I stay as active and independent as I can. But despite my efforts to maintain independence, each time I need to ask for additional help, I feel ashamed. Rationally, I know I shouldn’t, but the feeling persists.

FSHD and joint problems stemming from a 1989 car crash are to blame, not me. The blindness I sustained in that accident only adds to the challenge.

Recommended Reading

December 11, 2024 Columns by Robin Stemple

I’ll continue to do what I love, despite the FSHD ‘hangovers’

My challenges are anything but minor

For many years, I handled most of our house cleaning — washing dishes, emptying the dishwasher, taking out the trash, cleaning the bathrooms and kitchen, scrubbing floors, dusting furniture, and vacuuming carpets. Over time, my arm instability and blindness led to a few accidents. I felt embarrassed when my wife, Wendy, had to take over dusting. Eventually, worsening balance issues caused several falls while vacuuming. Wendy, who was working full time, had to assume that responsibility too. Gradually, I’ve had to give up most of these household tasks, and each surrender brought another wave of shame.

We switched from buying milk in gallons to half-gallons because the larger containers became too heavy for me to handle. Then, last year, we had to switch again to quarts.

I remember feeling ashamed the first time I needed a wheelchair for an outing at an amusement park. While some people with disabilities find a wheelchair liberating, I felt only weakness and helplessness. That same shame resurfaced when worsening balance, strength, and joint issues forced me to use a walker full time at home.

Recently, I performed music at a facility called The Haven, specifically in the memory care unit. It’s often difficult to engage people in these settings, but that day, the crowd sang, clapped, and even danced along. Though I was exhausted by the end, I felt profoundly grateful to have brought them some joy.

My driver and partner, Richard, gathered his percussion instruments and went to get the car while I packed up my small speaker and microphone. Julie, a recreation aide, brought my wheelchair over to the piano so I could transfer. That’s when things went haywire.

I have to push with my arms, along with every other part of my body, to stand up these days. This is a delicate process. I need everything to be at just the right height to make it work. The seat can’t be too low, and whatever I’m pushing off with my arms has to be at an extremely specific height, as well.

I’m not sure what was off that day, but I spent at least five minutes trying to stand up on my own, without success. Julie took my arm, and we tried together, but it still wasn’t enough. Ultimately, she called another aide for help, and only then, working as a team, did we manage the transfer.

It wasn’t pretty — in fact, it was pretty ugly. When I finally sat in the wheelchair, I landed on the very edge of the seat. I managed to push myself back into a safer position, but it was a close call. My face was flushed from both exertion and embarrassment. Needing help with the simple act of standing was a tough blow to my pride.

I’m fortunate to be surrounded by people who are genuinely happy to help in any way they can. Knowing this helps me move past the shame and embarrassment I often feel when I need to ask for assistance. It also helps to connect with others living with muscular dystrophy or similar conditions, because they understand these struggles intimately. As one friend in the FSHD community reminds me, our situations give others the chance to help, and most people truly want to. With that in mind, I’m working to transform my shame into gratitude.

Thank you, one and all, for your kindness — large and small.

Note: Muscular Dystrophy 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.