Affirmation

Monday, Nicole and I traveled to Columbus for her six-month check-up at Ohio State’s Wexner Medical Center. The sun shown brightly and the traffic on I70 was light, so it was a good trip. As usual, we stopped in Hilliard to grab lunch at an authentic Mexican restaurant, En Vaquero. It beats fast food.

Once more we received good news from Jerry, the respiratory therapist. Nicole is stable with no decline in her lung or blood-flow functioning. Dr. Kissel and his assistant tested her muscles. A physical therapist and orthodics specialist were consulted because there is a slight decrease in her strength and she has some back pain. No need is seen as yet for leg braces, however a back brace may help.

Neuromuscular diseases are complex and there is so much yet to learn. I am grateful that Nicole agreed to add her name to the clinical trials list.

Much more than an excellent doctor and researcher, Dr. Kissel is also a compassionate human being. Keenly aware of the toll on caregivers, he is the first of Nicole’s doctors to ever ask how I am doing. He did that at our first appointment with him in 2016 and on Monday as well.

This visit is the first time we have seen him since the publication of my memoir. Dr. Kissel is the doctor who took the time to read my manuscript and give me this wonderful blurb for it:

“One of my physician colleagues, when asked how he dealt with ‘such depressing neuromuscular diseases,’ replied, ‘I have the greatest job in the world because I get to work with heroes every day.’ This remarkable memoir chronicles one such hero’s quest to find an answer to a genetic riddle that had severely impacted her family for decades. The story is moving, meaningful, and inspiring, and reading it has made me a better doctor. It is a tremendous resource for other families in similar situations.” ~John T. Kissel, M.D.; Chair, Department of Neurology; Director, Division of Neuromuscular Medicine; Ohio State University Wexner Medical Center

Monday he wanted to know all about how my book is doing. He says A Long Awakening to Grace is excellent because of it’s larger message beyond dealing with the disease. “I’m so glad to have such a valuable book to recommend to my patients.” He asked the MDA staff person to facilitate giving it more exposure.

I was interested to hear him expand on how it made him “a better doctor.” Thirty years ago, he and a colleague worked on a project to discover the connection between myotonia and the brain. After his colleague’s death, their endeavor died as well. As Dr. Kissel read our family’s story, he regretted that he didn’t find a way to move that project forward. He supports researcher’s renewed interest in focusing on this aspect of the disease. He seemed quite interested in one colleague’s theory that it is the brain causing the muscle deterioration as well as the problematic behavior chronicled in my memoir.

One of the major reasons I wrote A Long Awakening to Grace was to educate doctors and researchers. I hoped getting an inside look at the devastating effects of the central nervous system symptoms would motivate them to put more emphasis on finding a cure for this aspect of the disease. Unless they hear the stories, they can’t fully appreciate how much more difficult it is for families to deal with the brain’s executive function deficits than with the muscle wasting aspect, as difficult as that is.

While Nicole snoozed on the drive home, I reflected on our visit. Dr. Kissel’s enthusiasm for my memoir affirms that through my writing I am making the difference I hoped for. I will probably not live to see this cure realized in my lifetime, but knowing that Nicole and I are playing a small part in potentially easing the suffering of countless others is something to celebrate.