Okay, forgive me for indulging in a little bit of a click bait headline there, but I hope this is the only time and in the only context in which I ever post “I’m going to jail.” A couple weeks ago, a customer nominated me to be “Locked Up” to raise money for the Muscular Dystrophy Association. If you are nominated, you are not obligated to participate, and to be honest, I wavered initially. In addition to being busy with work, I have also been struggling to create a balance in my personal life and to overcome the lingering depression, anxiety, and trauma of my brother’s attack last fall. Did I really want to add another commitment to my already full plate? However, muscular dystrophy is not a disease unknown to our family, and supporting the Muscular Dystrophy Association (MDA) was always a priority for my mom. Ultimately, I knew I wanted to get involved and offer my help, even if that meant getting “locked up.”
If you are unfamiliar with muscular dystrophy, below is a brief description courtesy of the Mayo Clinic:
Muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. In muscular dystrophy, abnormal genes (mutations) interfere with the production of proteins needed to form healthy muscle.
There are many different kinds of muscular dystrophy. Symptoms of the most common variety begin in childhood, primarily in boys. Other types don’t surface until adulthood.
Some people who have muscular dystrophy will eventually lose the ability to walk. Some may have trouble breathing or swallowing.
There is no cure for muscular dystrophy. But medications and therapy can help manage symptoms and slow the course of the disease.
The MDA actively works to assist individuals suffering from muscular dystrophy, ALS, and other related life-threatening conditions. They dedicate resources to medical research for cures and treatments, to community outreach and education, and to personal support and life-enhancing services to victims of the disease. To raise money, the MDA sponsors a “Lock-Up” program where business owners and community leaders volunteer to spend an hour in jail and to (hopefully) raise $3,500 in bail money from friends, family, and fellow businesses.
At one point, my mom was a “jailbird” too, representing the property management company for which she worked at the time. When I was nominated, I felt a connection to her, particularly because my nomination occurred a few days after her birthday. My mom was the kind of person who put her own needs aside in order to help someone else, and everyday I strive to be like her. This nomination gave me an opportunity to follow in her footsteps at a time when I wanted to feel close to her and to show my personal support for a cause which touched her life personally.
My mom’s favorite cousin Doreen was diagnosed with muscular dystrophy as a child and ultimately lost total control of her muscles to the point of being unable to breathe without help. While I never knew Doreen personally as she died from complications of the disease when I was very young, every Christmas we have a beautiful memento of her to lovingly unpack and place on our shelf.
Doreen always loved to paint, and as the muscles in her hands began to deteriorate, she would grip her painting hand with the other to steady it and hold the paintbrush. Eventually, she could no longer use her hands. Rather than give up on her passion, Doreen taught herself to paint by holding the brush between her teeth. As a gift for my mother, she painstakingly painted porcelain angelic mice locked together in a kiss, always mindful of creating crisp lines and even coats. As someone incapable of reproducing something so beautiful with the use of both my hands, I have always treasured these mice and the sacrifice and time it meant for her to make them for my mom. In fact, growing up, my brother and I learned early to treat the kissing mice with a deferential reverence for fear of breaking them, which is probably why they are almost thirty years old now.
My aunt Debbie, however, remembers Doreen the person and wanted to share a little about a remarkable woman who lived most of her life with muscular dystrophy.
Growing up, Doreen was a real pistol. She was diagnosed early with muscular dystrophy, but her symptoms did not progress until she was in her early twenties. Her doctors warned her about what kind of life she could expect when the symptoms worsened, so Doreen lived every day to the fullest. She was a daredevil who did and said whatever she liked, and she enjoyed every moment she had. Even though she was older than me, we grew close when we spent the summer together. I was only a teenager when muscular dystrophy reared its ugly head, and Doreen was forced to use a wheel chair. But she didn’t let that slow her down! She remained independent and never gave in. She would still dress herself and apply her makeup even if it took longer than it used to.
Because of her disease, Doreen never expected or even wanted to get married. She didn’t want to be a burden to someone or to force them to watch her get worse and worse, and when she meet her future husband Robert, she told him from the beginning about having muscular dystrophy. She tried constantly to talk him out of going out with her and visiting, but Robert would not be swayed away from Doreen. He loved the person, not the disease. Ultimately, the two of them became engaged and wanted to get married. But Doreen didn’t want to come down the aisle of the church in her wheelchair, so daddy came up with the idea of putting wheels on a bar stool. Doreen could be sat on the chair and her dress spread out over the stool, and her brother Kirby would gently push her down the aisle so that it looked like Doreen was actually walking with him. She was so beautiful and happy that day. It was a real blessing to see her then.
Sadly, the disease continued to get worse, and she could not maneuver on her own. She needed machines to help her breathe and eat, and it seemed so fast that she went from walking to a wheelchair to a bed with tubes helping her breathe. Robert took care of her every step of the way, bathing her, dressing her, and moving everything for her. We were always a close knit group, and it was hard for everyone in the family to watch a woman who always kicked life in the ass wither away before us, but I know she is in a better place now.
If you have a little extra money, please consider donating to our “bail fund.”
No donation is too small! Plus, it’s tax deductible, and you will have supported a foundation dedicated to helping people like Doreen have access to more resources, better treatments, and perhaps one day, a cure.
Erica & Debbie