‘Change or die’: Learning to embrace my new life with MG

In his book “Change or Die: The Three Keys to Change at Work and in Life,” Alan Deutschman presents his belief that humans are resistant to change. According to Deutschman, even when we know that our behavior will lead to death, change is so difficult that most of us won’t, or can’t, achieve it.

Throughout my professional career, my days were a rush from one activity or obligation to another. I grew dependent on detailed plans that determined how my days would be organized. Then, without being invited, myasthenia gravis (MG) entered my life. Changing my habits was crucial to navigating life with the condition, but I couldn’t do it.

I was diagnosed with MG just as COVID-19 hit the U.S. My world shrank to the four walls of my house. All of a sudden, I was working from home. My social life disappeared. Family gatherings were postponed. Travel was no longer possible. And gradually, MG made it impossible to perform simple daily tasks such as showering and dressing, yet I still wouldn’t change.

Then, one day, while in the grocery store, I tried to look at some cans on a top shelf and realized I couldn’t lift my head. I left the store immediately. As I anxiously drove home, my eyes were so sensitive to light that I could barely open them, and I crept along in panic. Change was occurring all around me, yet I refused to acknowledge it.

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In the months that followed, my MG symptoms worsened. I continued my pattern of resistance, and life became a bad dream. I sank lower and lower. Well-intentioned people assured me that “things will get better.” I took this as proof that everything was fine as it was. I just needed to be patient and wait for the inevitable return of my former life.

That return never came. Instead, I went through two major surgeries, countless medical procedures, multiple trips to the emergency room, and four prolonged hospital admissions. It was physically and emotionally taxing. Something had to give, but I didn’t know what it was.

As a kid, I heard elderly family members speak of their readiness to leave this world, but I couldn’t comprehend that. Life had so much fun to offer. To leave was like being plucked by one’s parents from a wonderful party and sent to bed. I lacked any understanding of the sorrows and cares life brings. I didn’t know how life changes one’s perspective.

Then I experienced my first full-blown myasthenic crisis and spent Christmas in the hospital. I was unable to speak, swallow, or breathe. As I lay helpless in a hospital bed, I gained a new understanding: Our lives can become filled with challenges that make death seem like a welcome release. In that moment, I understood I could change, or I could die. It was that simple.

Shedding my old life and embracing the new one

I decided to change. The words of artist Andy Warhol came to mind: “They always say time changes things, but you actually have to change them yourself.” I would no longer ignore MG and hope for it to magically go away.

I thought about lobsters. As adults, these crustaceans shed their shells every year or two and grow new ones. MG requires that I shed my life before my diagnosis and plan out a new one. The steps would be small and include things like showering without assistance or taking out the trash. These may seem like minor tasks, but with MG, they’re major accomplishments.

Recently, while performing my morning routine, I noticed that showering felt easy and effortless. It wasn’t a monumental and dangerous undertaking. Through practice and effort, I’d regained something MG had taken. My new shell was growing.

More changes will be necessary, and I’m sure they’ll still be difficult for me. I’m reminded of a line from one of Dr. Seuss’s poems: “You’re off to Great Places! / Today is your day! / Your mountain is waiting. / So…get on your way!”

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.