United by Myotonic Dystrophy, a Daughter Honors her Mom on Mother’s Day — and the 25th Anniversary of Her Death

Leslie, in her 20s, and her mother Helene.

The anniversary of my mother’s death, sadly, typically falls on the week of Mother’s Day. She passed away one month before her 56th birthday, 25 years ago. Her obituary listed lung and brain cancer as the cause of death but, naturally, there’s more to this story.

In the decades since her death, I’ve learned that my mother and I likely shared a neuromuscular disease — myotonic dystrophy — although she never had a name for it. As I approach my own 56th birthday next year, I know I need to defy the odds that my mother couldn’t.

As early as I can remember my mom had physical problems. She also had had another child who died after three days in the hospital incubator with a breathing problem, which my mother blamed on the negligence of doctors and the hospital.

At Leslie’s Bat Mitzvah at age 13.

She complained of constant stomach problems, which she tried to alleviate with gall bladder surgery and daily consumption of Coca-Cola. In my teen years, she was frequently hospitalized for respiratory issues that could be traced to a collapsed lung when she was 19 — although a lifetime of smoking didn’t help the situation. In her mid-thirties, she had cataract surgery, which was unusual for someone at that age.

While I was off at college in the northeast, my mother experienced significant depression, which she quelled with daily Manhattans and Xanax, and complained of extreme fatigue. When I visited her I tried to share books of affirmations and other new agey stuff I was finding helpful with life’s challenges, but she viewed them as disingenuous and hurtful. Shortly after college I returned home for a four-year period before I moved out west. I wanted to help her and we had some good times — but not as good as I’d wished for.

My move to California was a fresh start for me filled with excitement. My relationship with my mother soured and my parents were dismissive of my enriched sense of independence. Every couple of months there were more medical problems, although I could never tell what was real or imagined. In the preceding year, she told me of tests at the University of Miami that revealed a rare disease. She was paraded in front of medical students because one calf muscle was visibly diminished as compared to her other leg. At some point, we argued; I can’t remember the origin of the conflict. A phone message broke the months of silence; my mother was in the hospital after experiencing seizures.

The diagnosis soon came – lung cancer that had metastasized to her brain. She assured me her lung cancer had nothing to do with her daily smoking habit. My father never told either of us that the doctors gave her a year to live.

Helene and Leslie at age 27, just before she moved to California.

I visited several times during her illness, though the last visit – when I was 30 years old –made me realize she was likely not going to get better. She hallucinated that I was her sister, Ginger. Two weeks later, on the evening of May 4, 1992, we spoke on the phone and she told me she was “getting her life in order.” The next day she passed away.

When, five years later, I was diagnosed with myotonic dystrophy a lot of things began to make sense. It explained why my mother’s second child didn’t live and why my mother suffered physically and emotionally. Scientific research has come a long way and my mother never could have known she had a genetic condition that was passed on twice and in increased severity to her second born daughter. She never could have known many people with myotonic dystrophy can suffer from anxiety and depression and many in turn self-medicate in unwise ways. She never could have known that her disparate array of problems was part of a multi-systemic condition.

For two years after her death I don’t think I laughed. And, I’m a funny person…I love to laugh. Grieving is a long, difficult process. Her passing changed me. In some ways, it freed me. Over time I’ve realized that so many of the aspects of me that I truly appreciate are because of her. The irony is that she helped create a person with a strong enough will and determination to defy the odds. Every fiber in my body is geared toward living the healthiest life possible – physically, emotionally and spiritually.

Mother’s Day can be tough on those of us who have lost our moms. But it gives me an occasion to remember and honor my mother’s life and to thank her for the life she’s given me — one that I’m hope I’m living in a way that would make her proud.

Leslie Krongold, Ed.D., who lives with myotonic dystrophy, is host and creator of the Glass Half Full podcast, which explores positive ways to cope with a chronic health condition. As a teenager in the late 1970s, she was an MDA Summer Camp counselor in Florida and a youth chairman for Dade County. She has served as an MDA support group facilitator for 17 years in northern California and is a member of the National Community Advisory Committee.