Reframing the question ‘Why me?’ in life with a rare disease
How an old hymn helped this columnist shift his perspective
When I was diagnosed with myasthenia gravis (MG), I thought I understood the illness. The years since have been eye-opening. My MG has spiraled out of control several times. On those trying days, I wondered, “Why me?”
I think I’ve finally found an answer to this question.
After my diagnosis, the treatment regimen included high doses of prednisone. While this helped control my symptoms, it also led to serious problems. After several months, I began to experience mobility issues. The smallest movement of my legs caused intense pain, which increased to the point that I’d wake up screaming in the middle of the night.
In January 2022, doctors figured out the cause of this pain: The prednisone had prevented sufficient blood flow to my hip bones, killing them — a condition known as avascular necrosis. Replacing both hips was the only way to end the pain.
At the time, my physical pain was accompanied by emotional and spiritual suffering. What had I done to deserve this? I wondered. Hadn’t I tried to live a decent life?
On an intellectual level, I knew this line of inquiry wasn’t healthy. But we humans aren’t always rational creatures. My rational side was swallowed by my physical and emotional pain. Yet, eventually, a new understanding began to develop.
Finding answers in faithfulness
A year ago, on July 20, I had my left hip replaced. Six months later, I had the right one done. The surgeries were successful, and the physical pain went away. But the emotional pain lingers.
To mark the anniversary of my first hip surgery, I spent time reflecting on this phase of my MG journey. I wanted to heal some of the wounds caused by months of suffering.
As I reflected, the words of the old hymn “Great Is Thy Faithfulness” kept popping into my head. I decided to learn more about the song.
I discovered that its author, Thomas O. Chisholm, was in poor health his entire life. In a sense, he was a compatriot. Chisholm’s inspiration for the hymn was Lamentations 3:22-23, which says, “It is of the Lord’s mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness.”
But how did words written 2,500 years ago and made into a hymn a century ago relate to my struggles? I found the answer in faithfulness. As the anniversary of my surgery approached, I recognized that I’d been sent people who walked faithfully with me through very difficult days. My sister, Ann Marie, and my cousin Margi are two of the most impactful.
In the Bible, we find stories of incredible women. Perhaps the most extraordinary are those who remain with Christ to his last breath. While all of the men reportedly ran away, the women stood firmly. Others spoke of their love and faithfulness. The women at the foot of the cross lived it.
Ann Marie and Margi would be uncomfortable with any comparison with Mary, Martha, and the other loyal women in the Bible. Yet every day these two model faithfulness and love. Many speak freely about love for others. These two demonstrate it with concrete, daily actions.
Ann Marie gives selflessly of herself to her immediate and extended family. When she hears of someone in need, family or not, she doesn’t hesitate to offer help. She’s been with me at every step of my MG journey. On those days when the pain was unbearable, she’d help me change my focus. She’d lead me down memory lane with a funny story from our childhood or read passages from her sixth grade diary that are worthy of a comedy special.
Margi models what it means to be a loving, compassionate woman. Her devotion to her children is unlimited. When she comes across someone experiencing homelessness, she opens herself to them. She’ll give them all the money she has with her, or go to Costco and purchase them whatever they need. Saturdays she serves lunch in a homeless shelter. Most importantly, she spends time talking with these people. She tells them they are loved.
When I was in need, Margi and Ann Marie were with me. Day or night, if I was in the emergency room, Margi was with me, and Ann Marie was there on the phone. When I went into surgery, it was the same. If I was depressed, Margi would show up with Pablo, her French bulldog. When Pablo’s around, depression is impossible.
Now I understand why “Great Is Thy Faithfulness” kept playing in my head. Through their faithfulness to the fundamental principle that we should love one another, these two women pulled me through some difficult times. They gave to me because that’s who they are. Nobody deserves this love, yet they give it unconditionally.
Those of us with rare diseases will always want to know why we developed our diseases. Maybe our focus should be on the people who journey with us. With gratitude, we can ask, “Why me?” We did nothing to deserve the gifts of our loved ones, yet they were given to us anyway.
Great is their faithfulness.
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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