Four years ago, my family enjoyed a week’s vacation at Bethany Beach, Delaware. There were many great moments that made this trip with my children and grandchildren memorable. There were also a couple of misadventures.
We spent a day on Virginia’s Chincoteague Island, which is famous for its population of wild ponies. The beach was really nice. There weren’t any big waves or undertow to deal with, so my 2-year-old granddaughters, Iva Jane and Julia, and my 9-month-old grandson, Theo, all enjoyed puddling around in the calm water.
There were lots of rules for beachgoers on the island. Unfortunately, there weren’t any rules for the ponies. They go wherever they want to go, whenever they want.
At one point, a herd of 20-30 ponies overran the picnic area where we had set up camp. It was a wild scramble for my wife, Wendy, and the other adults to try to get the grandkids and me out of the herd’s path. They trampled over blankets, smashed lawn chairs, and investigated picnic baskets and coolers looking for food as they ambled along. It wasn’t quite the pony experience we expected, but since no one was hurt, it’s now an amazing memory.
The other misadventure on this vacation occurred when my three kids decided that I needed to take a dip in the Atlantic Ocean. We had rented a beach wheelchair with balloon tires that made it easier for my crew to move me onto the beach, where I could enjoy listening to the grandchildren play.
After an hour or so, the kids asked me if I’d like to get in the water. The beach wheelchair was made for this, or so we thought. I lost my mind and agreed. I plead temporary insanity.
There was a strong undertow that day. The kids pushed me far enough for the waves to come up to my waist. The water was cold but enjoyable for a few minutes. Then I realized that I was sinking into a hole as the undertow pulled the sand out from under the chair.
I got to the point where the waves were coming up to my neck, and I was afraid the kids wouldn’t be able to pull me out of the chasm the undertow was creating. My daughter, Jill, and my son, Ryan, each grabbed one of the handles of the wheelchair and pulled for all they were worth. Struggling, they eventually were able to get me back onto solid ground, much to my relief. For a few moments in the struggle, though, I thought I was going under.
Doing what we can
I’m getting the same feeling now. Despite my family’s best efforts, I feel like my facioscapulohumeral muscular dystrophy (FSHD) is dragging me under.
The FSHD progression continues to take away my ability to perform formerly routine tasks. The weakness and pain have forced me to stay home more often than not when Wendy would like to eat out or Jill wants to go for ice cream.
I find myself even turning down trips to see a grandchild’s soccer game or a dance recital. Wendy and I moved to Pittsburgh to be close enough to be there for these kinds of family events, but getting down the steps, transferring to a wheelchair, and wheeling across to our garage, and then getting shoes and socks on, putting on a jacket, and transferring into our van just seems too difficult.
One day I could get a fork from my plate to my mouth, and the next day I couldn’t. Six months ago, my 19-inch toilet in my accessible bathroom was high enough for me to stand up, but the 21-inch booster I use now feels like it won’t be high enough for long. Wendy, Jill, and I are taking steps to help me remain at home and be as independent as possible. At the moment, though, nothing seems stable.
I’m working with physical, occupational, and speech therapists that come to my home. The hope is for me to regain a little strength from physical therapy, while the occupational therapist helps me find new ways to adapt and adjust. The speech therapist is working with me to solve some of my eating challenges in the hope of avoiding pureed foods. I can’t think of anything less appealing.
As I grieve my losses, it helps to talk with others in the FSHD community. Not only do they “get it,” but often they have traveled this road ahead of me and can share some lessons learned. As a Christian, I’m sure I’ll land on the Solid Rock eventually. I just hope I come in for a landing before the water goes over my head.
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.
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