Guest blogger: Jonathan Williams
I met Ann at a writer’s conference in the fall of 2016. When I told her what I did—helping people write their own books and tell their stories—she told me she had a story to tell and wanted to know more. Ann impressed me as someone who was easy to get to know but who was also serious about telling her story and about caring for her family.
Over the next few days at the conference we got to know each other better, and a week or so after the conference ended, I started helping her tell her story. The result is a book the both of us are proud of. It tells the story of living with myotonic dystrophy, and the obvious, and not so obvious, challenges Ann has faced. I’m biased of course because I think Ann’s book is great, but it seems that I am not alone—everyone she has shown it to seems to gobble it up. The reason for this is simple: Ann opens up and tells the truth as she gives us the inside story of her life. Naturally, everyone who reads it is thankful that she has let them peek into her world as she tells her family’s story without holding anything back. Now, Ann didn’t write her book to please anyone or to be nice to anyone or to impress anyone. No, she wrote her book to share her joy and her pain. And by doing so, her readers can see that they too can have joy in the midst of pain, whether they care for someone with DM or with some other illness.
In the course of helping Ann with her book, I got to know a couple members of her family. At the conference where I first met her, Ann had her son Michael with her. Of her four children, Michael suffers the most from myotonic dystrophy. As is typical with this disease, his immune system is compromised and his muscle tone is diminished, which leads to a host of problems, including digestive issues, problems swallowing and eating, and (for Michael in particular) problems speaking. You see, when Michael speaks, he has difficulty forming plosives (sounds like b, t, d, etc.), and Ann had to translate whatever he said for me. But Michael’s speech issues don’t hide his happy and vibrant spirit and personality. Having myotonic dystrophy hasn’t prevented him from smiling or cracking jokes, luckily, so he does both a lot. Later on, I also took the opportunity to attend a doctor’s appointment with Ann, Michael, and Chad at the University of Utah Clinic, and I got to hear about the extensive list of medications Chad and Michael have to take daily. I saw firsthand a simple test performed on Michael by their doctor, which demonstrated that he had this form of muscular dystrophy. It was a fascinating and a sobering moment to see how this profound disease could be diagnosed so simply.
If you want to know more about the physical and mental effects of DM, Ann’s book is as good a place as any. I’ve mentioned a few of Michael’s physical effects, so I won’t repeat those here, but I do want to mention the one mental effect that disables people with DM more than you might realize, and that is their impaired executive functions. Most of us, who don’t suffer from DM, take our ability to make decisions and prioritize our daily tasks for granted. But for most people with DM, these are often monumental tasks. In her book, Ann tells about a time when she took her oldest son grocery shopping after he had moved out on his own. When they got to the frozen food section and she started to ask him what vegetables he wanted to get, his brain overloaded, and he sat down in the middle of the grocery store and couldn’t move. Ann had to end up just choosing some veggies for him and finally got him to get up and keep going. There’s more experiences like this in her book, so please read it to find out more, but that one is typical and illustrates one of the biggest challenges people with DM face.
Being as familiar as I now am with Ann and her family’s story, I know well that raising and caring for her husband and her four children has been anything but easy. Still, through writing her book and through serving in her community and at home, Ann has kept the focus in her life on serving others.
Ann’s story is still with me. Even though you may not know anyone with this debilitating disease, her story should still speak to you. With all of the suffering and uncertainty in our world today, the time is right for a story like Ann’s.