When MG brings bad things, we can become better people
What I've learned about physical and psychological pain
Since 2020, I’ve been traveling along the myasthenia gravis (MG) road. Sometimes it’s filled with pain, as it was in 2021.
We don’t usually think of MG as a physically painful disease. However, the effects of one of the main drugs used to control it, prednisone, can cause avascular necrosis, which causes severe, intense pain. Intravenous immunoglobulin therapy can be accompanied by debilitating headaches.
Sometimes when the physical pain has passed, the psychological pain remains. Just like the physical pain, the psychological pain is often ignored or overlooked. One can’t see it. It causes no visible bruising and doesn’t require braces or tubes. Nevertheless, it can be debilitating and result in isolation and confusion.
Psychological pain was recently front and center in my thinking. During that time, I returned to my books and encountered two individuals who helped me bring some meaning to my struggles. The fictional character Miss Havisham and the real-life Rabbi Harold Kushner showed me the high risk we humans take when we ignore psychological pain. I think that everyone who lives with rare diseases can learn from these two. I certainly did.
As an undergraduate in college, I read Kushner’s book “When Bad Things Happen to Good People.” Kushner’s son Aaron died from progeria two days after his 14th birthday. The book is the rabbi’s attempt to find meaning in Aaron’s physical pain and the rabbi’s psychological pain that remained after his son died. Kushner’s suffering led him to write that “pain is the price we pay for being alive. Dead cells—our hair, our fingernails—can’t feel pain; they cannot feel anything.”
Facing pain head-on is difficult. Ignoring it can be disastrous. Literature offers us the cautionary tale of Miss Havisham, an epitome of the disaster that can accompany psychological pain that is ignored or suppressed.
While dressing for the ceremony on her wedding day, Miss Havisham learns that she has been jilted. Her betrothed won’t be waiting nervously at the altar. To make matters worse, he has swindled her. Unable to confront and overcome her pain, Havisham becomes a pitiable creature. She roams her home dressed for a wedding that will not be. Something within withers and destroys her.
At 8 years old, I had two brain surgeries to remove a tumor. The right side of my skull was removed, the tumor excised, and a plastic piece implanted where the bone had been. None of this was anywhere near as painful as the necrosis avascular I endured in late 2021.
The memory of those days is vivid and dark. When I close my eyes, I can clearly see myself lying in bed, sweating, blinded by the pain. I can still feel the carpet burn on my face when I lay alone on the floor, with nobody around to help me get up. Thinking about these days brings nausea, and it takes great effort to write about it.
Why remember the physical and emotional pain of those days or the other losses caused by MG? I do it because I know something valuable is buried underneath the suffering. Moments with and without pain are both valuable.
Sometimes we who live with rare diseases confront pain and suffering sooner and more frequently than those without a disease. These struggles can positively impact our lives if, like Kushner, we find meaning in them. A greater struggle is not to allow ourselves to wither and become vengeful like Miss Havisham.
My struggle between these two outcomes continues. As I journey along the MG road, I recognize anew the wisdom of the poet Rumi’s words: “The wound is the place where the Light enters you.” May you be filled with light.
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.
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