Last week, I shared how my wife and I met, which sounds like a romantic comedy or Hallmark film, but unfortunately, life isn’t always perfect. Now, to answer the other question: Vicki doesn’t attend church mainly because she has Myotonic Muscular Dystrophy (MMD1), a genetic disorder. I had never heard of this illness before and wish I still hadn’t, especially after witnessing its devastating impact on her family.

About fifteen years ago, Vicki’s heart inexplicably began to fail. She underwent two surgeries: one to implant a temporary heart pump and another a year later to receive a new heart. After her slow recovery, doctors said she looked good and could run a marathon if she wished, but she never regained her previous energy. She tired easily, remained clumsy, and could not make a fist with her right hand, which we believe was caused by nerve damage from an IV. We accepted this as the new normal and moved on, caring for our toddler son and resolving to live our lives to the fullest.

Then we noticed that Vicki’s older sister, Beverly, began experiencing similar problems, and later her older brother, Lawrence, did as well. Beverly, who has always been a hypochondriac, consulted numerous doctors and underwent years of testing before being diagnosed with MMD1. Vicki underwent similar tests and discovered she had it too, as did her brother. Both of their parents were likely carriers, and all three children inherited the condition. Their mother may have had a mild form, which may have contributed to her unexpected death from a heart attack during back surgery in 1999.

Knowledge of MMD1 is limited. It causes gradual muscle weakness that hampers daily activities and self-care, resembling ALS but progressing more slowly. No cure, treatments, or effective drugs are available. Exercise and stretching offer only a slight slowdown and may cause discomfort. Vicki is slowly losing the ability to perform everyday tasks. She constantly suffers from pain and fatigue, often needing to nap. Taking a shower or making a short trip to the doctor completely exhausts her. She can barely walk now and depends on a wheelchair, with the risk of becoming bedbound later.

MMD1 originally targeted Vicki’s heart, a muscle, leading to its failure. She would have died at 37 in 2010 without her heart transplant. The disease also affected her siblings, weakening their bodies until they needed to live in assisted care facilities. Beverly suddenly died of a heart attack at 50, and Lawrence at 54, both in 2020. BTW, Vicki’s transplanted heart is fine; it’s the rest of her body that is growing weaker.

Vicki is now wheelchair-bound, and since I’m retired, I am now her full-time caregiver, though we have caregivers who help us two days a week. It is now too hard for her to go out unless it is necessary, and travel is near impossible. This winter, she had not been out of the house for four months. When it is warm, we enjoy our time on our screened back porch in our spacious backyard. We play board and card games, read books, watch our favorite TV shows, and talk. We also help The Closet by going through their donated games. FYI, our son, Chris, is now in college but will be returning soon for the summer.

Vicki doesn’t want sympathy but appreciates your prayers. She prefers to be seen for who she truly is, not for her disease. I ask for your prayers as I care for her. It’s a challenging job, but I love her and am committed to supporting her. Furthermore, Vicki and I believe there must be a reason for this; God has a plan, but for the life of me, I cannot see it. All I know is that I see the woman I love endure more pain than anyone should have to, yet she is determined to live her life to the best of her ability. Her strength and determination in facing pain inspire me every day.

Take care,

Bill R.