When MG has me reeling, I turn to the healing power of reading
Books certainly aren't a cure for disease, but they can make symptoms bearable
My earliest school memories revolve around reading class. I couldn’t wait until after lunch, when we’d get out our books and take turns reading. I loved Dick and Jane, Sally, Mother, Father, and of course, Spot. I began a love affair with the written word that continues to grow today.
My family members hint that perhaps I should let this love affair cool a bit. Two years ago, I spent four months in Maine. I arrived with two books and left with 52. When a book catches my imagination, I must have it. As Emily Dickinson wrote, “The heart wants what it wants.” Mine wants books.
This love affair has guided me through some rough times, including the past two weeks. My books have helped me persevere. I have some advice for those who struggle with disease and its challenges: Find solace in the written word.
I suggest you begin with an internet search for Dorothy Parker and the Algonquin Round Table. Treat yourself to one of Parker’s books. Familiarize yourself with Harpo Marx, Edna Ferber, and the other geniuses who were members of the round table, as well as friends like Noël Coward. Read their works. They’ll start you on a life-changing journey.
Life with myasthenia gravis (MG) is challenging. There are days when I’m numb from the struggles. When morning comes, I may be grateful for a new day. Then I remember the struggles the day will bring, and the excitement and newness evaporate. I ask of the day what Parker asked when the phone rang or she heard a knock on the door: “What fresh hell is this?”
Calling in reinforcements
I know that a positive attitude helps our bodies heal. Doctors and social workers have given me copies of a pamphlet prepared by the Myasthenia Gravis Association of Western Pennsylvania. It recommends that those with MG “avoid stressful situations as much as possible.” It’s good advice, but life with MG is a stressful situation.
Two weeks ago, I received a letter from my disability insurer informing me that I was no longer disabled, could return to work, and my monthly disability benefits would cease. It blew me away. On some days, I need 16 hours of sleep, my speech is unintelligible, and I struggle to breathe.
Three days before that, my neurologist and I concluded that my current treatment regimen wasn’t achieving the hoped-for results and it’s necessary to try another approach. Three years of treatment and still no solution to my symptoms. The clouds of depression gathered above me. It was time to call in the books.
I headed over to my bookcase and took down “A Room With a View” by E.M. Forster. A few afternoons in Florence, Italy, and rural England always ease my worries.
Every year, I spend time in the American Southwest with “Death Comes for the Archbishop” by Willa Cather. It was time for that armchair journey.
Lastly, I pulled out “Enough Rope” by Parker and “The Algonquin Roundtable New York: A Historical Guide” by . I’ve befriended those creatives who gathered at New York City’s Algonquin Hotel, and I eat with them as often as I can.
As I read, my depression doesn’t magically evaporate. Nor are all my problems solved. But I do begin to feel better. As the pages turn, I feel as if I’m slipping into a warm bath. My muscles relax and my mood brightens. My friends are back again, reminding me of a world beyond the present. They assure me that everything will be OK.
I’ve traveled a long way from my afternoons with Dick and Jane. Books have taken me to some fascinating places and introduced me to amazing people. They’ve lightened my mood and helped me see that every problem has a solution.
When life’s challenges come your way, find a good book to read. It may inspire a determination to persevere through difficult times. My friend Dorothy Parker sums it up in her poem “Résumé:”
“Razors pain you;
Rivers are damp;
Acids stain you;
And drugs cause cramp.
Guns aren’t lawful;
Gas smells awful;
You might as well live.”
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.