Tenacity keeps me going amid the symptoms of myasthenia gravis

I was caught off guard recently when a friend asked me what one word describes my ability to cope with the ups and downs I’ve had since my 2020 myasthenia gravis (MG) diagnosis. I asked if I could give my answer after dessert.

As we ate, we reminisced about a close friend who’d lost his battle with multiple sclerosis and depression. Financial, physical, and emotional burdens became too much for him. As we talked, it became clear to me that “tenacious” describes my ability to cope with the challenges of life with MG. Let me explain.

During arguments, my mother would often say “once you get something into your mind, there’s no changing it.” She made tenaciousness sound negative. I don’t see it that way. Life has taught me that at times, you hang in there even when it seems a losing cause.

I took a position coaching students that nobody else would accept. With determination and grit, I molded them into division champions. If I hadn’t been tenacious, I might never have formed some wonderful relationships with young people. I wouldn’t have shared their joy and excitement when, despite all expectations and obstacles, they stood on the victory podium.

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In December 2021 I experienced my first myasthenic crisis. I was hospitalized and unable to speak, swallow food or water, open my eyes, or breathe without difficulty. The doctors told me I was on the verge of respiratory failure. For 10 days I underwent plasmapheresis, physical therapy, and other lifesaving therapies. At times it was brutal. But no matter how tough things became, my tenaciousness made me tougher. I successfully came through the crisis.

After discharge, I discovered that my family hadn’t expected me to survive the ordeal. The medical staff gave them a grim prognosis. When I heard what my family believed, I was surprised. It never occurred to me that I might die. Despite the difficulties of a myasthenic crisis, not for one moment did I consider they couldn’t be overcome. Was that naivete or tenaciousness? Whatever it was, I walked out of the hospital in time to celebrate the new year.

It took three years of experimenting with various treatments before my MG was controlled. Each time we’d try a treatment, my hopes would rise. When the treatment failed, I became depressed. My neurologist encouraged me and advised patience. She said it can take years to bring MG under control. I didn’t want to hear that.

When you try treatment after treatment, with no success, it wears you down. I’ve compared myself to Sisyphus. Each new treatment was another rock to roll uphill. When the treatment failed, it was the stone rolling down the hill. My situation seemed futile.

At one point, I told my sister I was exhausted and didn’t think I could go on. I had almost no fight left in me. I just wanted to rest, to be at peace. Maybe it was time to face defeat and give up the fight.

Then the little spark of tenacity left in me told me to go on. I summoned my last bit of strength and began infusions with Ultomiris (ravulizumab-cwvz). My world changed. My symptoms were controlled. This time the rock remained atop the hill. Sorry, Sisyphus. Like Lazarus, I was back from the grave.

Tenacity has assisted me in other ways on my MG journey, but I’ll relate them another day. Meanwhile, I’ll end with a word of caution. Tenacity is, I suggest, a quality that will help all who live with rare diseases. However, it shouldn’t make you rigid, headstrong, or inflexible. I always keep in mind that my doctors have knowledge I don’t. I hope I’ll never confuse tenacity with stupidity.

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.