How to turn contraction into expansion after an MG diagnosis

After years spent journeying around the world, Ulysses, the main character in Homer’s epic “Odyssey,” reaches the safety of home. Changed by the stimulation of dangerous adventures, he finds the tranquility unbearable. Having passed from youth to old age, he decides to spend whatever time remains on a new adventure.

I recently reread some of Alfred Tennyson’s poems and discovered connections to my life with myasthenia gravis (MG). Rare disease diagnoses shake people to the core. The future may become bleak and dull, while the past appears golden. A life where the future is filled with unknown adventures and thrills is no longer possible. Like Tennyson’s “Ulysses,” we may ponder, “How dull it is to pause, to make an end,/ To rust unburnish’d, not to shine in use!”

Were this the case, there wouldn’t be much point in struggling against the challenges and limitations rare diseases bring. As entrepreneur Andrew Thomas wrote for Inc., “Opportunity follows disappointment and expansion follows contraction. In my experience, as long as I keep my faith and stay focused on the goal, the dips always lead to my greatest expansion and achievement.” How do we take the contraction of an MG diagnosis and turn it into expansion and achievement?

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Letting go

Ulysses returned home tired and worn down by his travels. Similarly, life with rare disease saps energy. It snatches away goals and dreams that once gave focus to life. Letting go of these goals and dreams, while difficult and painful, is essential for expansion and achievement. How is this done? Who can model this for us?

Michael J. Fox was interviewed recently on “CBS Sunday Morning,” where he discussed the challenges of life with Parkinson’s disease. In the years since his diagnosis, Fox has experienced the relentless progression of the disease. Many in his situation might abandon hope for a productive life. Fox found purpose assisting other Parkinson’s patients and advocating for increased research into the disease. Contraction led to expansion.

A 1995 equestrian accident paralyzed Hollywood superstar Christopher Reeve. The actor who played Superman was unable to perform the basic functions of daily life. These limitations didn’t prevent him from changing contraction into expansion. Reeve spent the final 10 years of his life working to improve the lives of those with spinal cord injuries. In my opinion, the impact of his efforts has been far greater than the impact any acting career could have.

Age has the same potential as an MG diagnosis to close off new journeys. As years pass, the abilities we once used so freely and without any thought grow weaker and sometimes disappear completely. Before MG, I believed that as I grew old, my horizons would shrink and eventually fade away.

After my diagnosis, I spent a lot of time reading. I learned that Julia Child was 49 before she published her first cookbook. Author Toni Morrison was 62 when she received the Nobel Prize in literature. Sailor Minoru Saito circumnavigated the world when he was 77. At age 98, Nola Ochs became the oldest person to earn a master’s degree.

I probably won’t be able to accomplish what these people did. I’ll settle for the opportunity to attend my nephew’s wedding in Spain and execute the occasional coq au vin recipe from “Mastering the Art of French Cooking.” These are smaller but no less important achievements.

Former Multiple Sclerosis News Today columnist Stephen De Marzo wrote, “I realize that there are moments when you are living and moments when you are existing. The challenge is balancing the two to make truly living a greater factor in my daily life.”

Rare diseases may keep us from sailing around the world or publishing bestselling books. Yet in the moments when we are fully alive, we can flourish, we can expand.

Should our goals and achievements shrink, MS News Today columnist Ben Hofmeister advises against despair. “I think that instead of hearing ‘you can’ and imagining some lofty, unreachable goal, I’ll choose to hear, ‘What you’re capable of right now matters.’”

Facing enormous obstacles, knowing death was the only destination of which he could be certain, Ulysses once more set sail. Like Ulysses in Tennyson’s poem, we can choose to seek new horizons.

“Tho’ much is taken, much abides; and tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”

Safe travels.

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.