Becker's Muscular Dystrophy - My Family's Inherent Strength
Growing up in The Bronx in the 1970s, the patriarch of our large family was my Italian grandfather. For as long as I knew him, Grandpa was in a wheelchair. It was vaguely explained to me as I got older that he had a “bad leg”, broke his good leg, and ultimately that is what landed him in the wheelchair. While he stayed at home during the day on his own, Grandma worked full-time as a milliner, making women’s hats. They lived on the same street as we did, three houses away, on a strip of two-family attached, townhouse-style homes. There was always someone checking in, helping him or keeping him company.
Now, when I say “helping him” I do not mean Grandpa needed help with any of his day to day activities. Either Dad or one of us kids were sometimes there to be his “assistant” in whatever he was up to. He was a very proud, self-sufficient man and got along just fine during the day while Grandma was at work. At the age of 17, Grandpa came here from Italy on his own in search of his father, taught himself english and became a jeweler, commuting everyday to lower Manhattan to support his family. At the age of 55, he continued using his hands once he became wheelchair-bound, making jewelry from home. He also kept a garden behind the house, crawling down and up the stairs each day, watering and weeding from a small stool he would move around the garden. His flowers and vegetables flourished! I have fond memories of that garden, admiring how he was able to grow incredible things in such small spaces, training the cucumbers and string beans to crawl up the side of their neighbor’s garage. In addition, he taught himself woodworking, intricately making a dollhouse and furniture; one for me and another for my cousin. He also carved a circus set for my brother, ornaments for the garden and several plaques and wall hangings. A man of many talents, Grandpa would not let his disability hold him back and keep him idle.
Finding Out the Truth
It was not until Grandpa was 80 that we realized there was something wrong with another male member of the family. My grandparents had three girls; one passed away when she was very young. My mom and aunt had five children each. When my aunt’s second oldest son was in his 20s, he started having leg pains, difficulty walking and a hard time getting up from a seated position. At the suggestion of a doctor who was treating Grandpa for heart issues, they had him tested for muscular dystrophy; he was diagnosed with Becker’s Muscular Dystrophy (BMD). I remember as a kid always watching The Jerry Lewis MDA Labor Day Telethon with my family and making a donation; it was an end of summer tradition. Now it was hitting home, becoming a reality for our family.
The news was devastating for everyone; the doctor suggested we each get tested and see a specialist. BMD meant that my mom and aunt were carriers of the disease and could potentially affect their children; passing the disease to their boys and causing the girls to become carriers like themselves. It also meant that we finally knew why Grandpa was in a wheelchair. The day my aunt got the diagnosis about her son, she was on her way to tell Grandpa the news, but he passed away suddenly of heart failure before she could see him. Thank God he passed without knowing he was the originator of the disease that was now debilitating his grandchildren.
What is Becker's Muscular Dystrophy (BMD)?
What we know about Becker's Muscular Dystrophy is that it is not curable or treatable. The signs do show in the boys between 5 and 15 years of age in the form of enlarged calves and as they mature, muscle weakness occurs in the legs and pelvis area; walking ability is usually lost at 40-60 years of age. It can also affect the heart muscle. My aunt has four boys and one girl - the three oldest boys have different levels of it and her daughter is a carrier. Her youngest son, had a diving accident when he was in his 20s and became a quadriplegic, spending most of his life in bed or in a wheelchair; it was never determined if he had BMD. He lived many more years (the doctors predicted days at the time of his accident) than expected and had a full and active life before he passed away at the age of 49 in 2010. After struggling with a drug problem, he bettered his life, doing a lot of reading and studying. He got married, moved to Virginia and built an incredible garden that Grandpa would have been so proud of; all things he probably never would have done if he didn’t have the accident.
Becker's and My Family
In my immediate family it has affected only the oldest and the youngest members. My sister Linda the oldest, is a carrier and passed it on to her three boys. Her oldest son Michael, who is now 42, experienced leg pains when he was a child. He has had heart problems for the past ten years, no longer has leg pains, but was recently put on a heart transplant list. Her middle son David is 40, and has it the worst. He is on permanent disability and home with his two girls. Linda’s youngest son Steven, unfortunately, passed away last year at the age of 34 of renal failure. He showed minimal signs, but doctors could not determine where the kidney issues originated. My brother Chuck, is the youngest member of our family at 52. As a young boy he showed signs - the large calves - but symptoms did not begin until he was older. He and his wife do not have children. He also is on permanent disability because his job was very physical.
Like Grandpa, the men in my family do not let this disability stop them from being active; they too are an inspiration and I am in awe of their courage. For some reason, Chuck’s hands have been affected and it does somewhat limit the things he can do. But, he never sits still - he is either tinkering under the hood of a car, mowing the lawn, helping out a friend or family member and he is a great cook. The same goes for my nephews. Michael is doing everything he can to keep his own heart. He goes to the gym, goes on hikes, follows a strict diet and keeps up with his appointments. David has become a stay at home dad; he cares for the girls and is a genius at organizing and decorating for their birthday parties. You can also find him tinkering with cars and he did a great job redoing the kitchen and bathroom in his house.
Sure, they have their moments. Chuck gets frustrated when he drops things or when he can’t open a jar; something that used to be so easy for him to do. He and David both fall suddenly, which to an outsider seems like it is for no reason at all, or it can happen at an inopportune time; sometimes we laugh about it. Recently, I was speaking with David and he said, with dread in his voice, “I do not want to wind up in a wheelchair.” He caught me off guard and all I thought to say was that these days people in wheelchairs are still living amazing lives. It was that conversation that inspired me to write this. In hindsight, what I should have said to him was, “You come from a strong line of wheelchair bound men! Your great-grandfather was incredible - you are a lot like him. I wish you could have known him.” They say God won’t give you more than you can handle, but I think in this case, the strength of these men in my family is inherent; it all began with the originator, my Grandpa.
© 2018 Kim Kiedaisch