How myasthenia gravis prompted me to embrace change
Chronic illness forces people to give up the life they once knew
“No man steps in the same river twice, for it’s not the same river and he’s not the same man.” — Heraclitus
“It’s the paradox that the more you allow yourself to accept that change is inevitable, the more likely you are to change intentionally and adapt.” — Julia Samuel
March 12, 2020 started as a regular day. I’d been teaching in the Dallas Independent School District for 21 years, and I loved my job. The intellectual stimulation, the faculty camaraderie, the fun and love for and from students all combined to make an incredibly wonderful professional life. I looked forward to another decade in the classroom. But by day’s end, everything had changed.
Around noon, our principal announced that due to a mysterious “thing” called COVID-19, school would dismiss early, and spring beak, scheduled to begin on March 16, would start that afternoon.
As I locked my classroom door, I was overwhelmed by the thought that it might be the last time I did this. Something inside me knew that this wonderful period of my life had come to an end. But our human ability to survive by ignoring darkness prevailed, and I told myself that things would quickly return to “normal.”
But normal never returned. Like others, I went through the fear, panic, and uncertainty of COVID-19. Then, on June 24, 2020, my neurologist told me that I have myasthenia gravis (MG). My MG journey had begun.
However, I had a frame of reference many MG patients lack. In 2011, after 11 years with MG, my dad died at 86. I reasoned that I would start taking some medicine and resume normal life. Wasn’t that what he did?
Adapting to the new reality
Three years later, I still have not resumed teaching. My financial situation has been curtailed by long-term disability, and I’m now earning only 66.66% of my teaching salary from temporary paid medical leave. Only the help and support of family and friends keeps my head above water.
I ride what I call the “MG roller coaster.” I’ve taken, or am taking, prednisone, mycophenolate mofetil, pyridostigmine, and efgartigimod. After four hospitalizations, two rounds of plasmapheresis, multiple rounds of intravenous immunoglobulin treatment, MG still hangs over my head like the sword of Damocles. Even on good days, I fear the house of cards may tumble down in an instant.
These life changes anger me. I didn’t want to stop teaching. I didn’t want to lose the daily interaction with my students and colleagues. I still want to be the guy local television stations interview about “hot” educational issues. I haven’t tired of the affirmation that comes from being chosen to serve on district-wide committees. The pride felt when honored by the Federal Republic of Germany, the European Union, the National Archives, The Gilder Lehrman Institute of American History, the National Endowment for the Humanities, and the U.S. Congress has not faded. You get the point. MG took all of that away and confined me to my home. Trips abroad and nationally were replaced with hospital stays.
As the third anniversary of these events approaches, I’ve begun to achieve some clarity. While I once planned my life, I no longer believe in plans. As Scottish poet Robert Burns wrote, “The best laid plans of mice and men often go awry.” I’ve replaced plans with a nascent willingness to embrace change.
I wish I could say that this willingness is complete and I now move forward with determination. Sadly, this isn’t the case. But it is clear that I am not alone. I now see that while the changes in my life have been painful, change is inevitable. Whether it began three years ago, or 20 years hence, it could not — cannot — be avoided. I clearly see that change is part of every life.
A passage by the BBC’s Lindsay Baker caught my attention:
“Since humankind has existed, many great artists, writers, and philosophers have grappled with the notion of change, and our impulse to resist it. ‘Something in us wishes to remain a child … to reject everything strange,’ wrote the 20th-century psychologist and author Carl Jung … echoing Heraclitus. … [A] refusal to embrace change as a necessary and normal part of life will lead to problems, pain, and disappointment. If we accept that everything is constantly changing and fleeting … things run altogether more smoothly.”
In the same article, psychotherapist Julia Samuel noted:
“Change is the one certainty of life, and pain is the agent of change; it forces you to wake up and see the world differently, and the discomfort of it forces you to see the reality of it. It’s through pain that we learn, personally and universally.”
I have felt the pain about which Samuel speaks. Only recently has this pain become understandable. I’m now working on learning from it.
For me, the lyrics of legendary soul singer Sam Cooke are no longer just part of a good song. I get them now and am learning something about the positive changes that can accompany pain. “Change can be an engine of progress,” Baker observed.
“There been times that I thought I couldn’t last for long
But now I think I’m able to carry on
It’s been a long, a long time coming
But I know a change gonna come, oh yes it will.” — Sam Cooke, “A Change Is Gonna Come,” 1954
Amen, Sam! And blessed be.
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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