3 Months of Sisyphean Struggles Teach Me About Endurance

“Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” — Kelly Hemingway

I remember when I first read the myth of Sisyphus. I thought it’d be awful to work diligently at a task and always come within a hair of success without ever being able to achieve it. What most impressed me was how Sisyphus, despite his experience, continued giving all to an impossible task. Failure to strive was never an option.

This summer, as I struggled with health issues related to myasthenia gravis (MG), I walked in Sisyphus’ shadow and gained insight into how I deal with things that are difficult.

For most of July, August, and September, I was in or on the brink of myasthenic crisis. I lost most of my ability to speak. Eating and drinking grew difficult, then impossible. My vision deteriorated so much I was forced to stay in darkened rooms, unable to watch TV or read.

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I kept reassuring myself that things would improve. Maybe tomorrow I’ll be able to swallow. Perhaps if nap, I’ll be able to speak intelligibly. I didn’t want to end up in the hospital!

Things didn’t improve. Early one morning, after hours of gasping for air, I realized I was licked and dialed 911.

MG has taught me a few tricks. I had an overnight bag packed and ready, filled with my medications, change of clothes, cellphone charger, and reading material. While waiting to be seen by the intake doctors, I wrote a narrative of what brought me to the hospital.

In the emergency room, I kept hoping for the impossible. I wanted them to tell me that I’d been overreacting and should go home and things would improve. Instead, I was admitted.

Initially, it was hoped that intravenous immunoglobulin (IVIG) replacement therapy would bring my symptoms under control. I steeled myself for 16 hours of transfusions. I told myself, “I can get through this. Two days, then I’ll be back at home.”

I knew things weren’t going well when, after the second infusion, the neurologist told me that the news wasn’t good. As they say in the movies, “The results weren’t what we’d hoped for.”

A familiar occurrence in my MG journey: dashed hopes.

I would need a port installed and to undergo five two-hour plasmapheresis (plasma exchange) sessions, during which all my blood would be removed, cleaned of antibodies, and returned. I call it a gruesome procedure, but it’s miraculous. I began to feel better. Maybe this time I’d rolled that stone up the mountain and achieved success. I would be home in a few days!

Then my hopes were dashed again. Once more the doctors informed me that the results weren’t what they’d hoped for. It was necessary to try another treatment.

This one worked. I was discharged and went home eager for some good food and decent sleep. But once home, my condition deteriorated. Four days later, I was back in the ER. The stone had rolled all the way back down the hill. I had no fight left. I wanted release from the endless struggle. Dashed hopes.

I began to identify with Charlie Brown. Every time I went to kick the ball, it was pulled out of reach. It wasn’t fair!

That’s when I had an epiphany. Of course it wasn’t fair. Illness isn’t about fairness. I wasn’t singled out because of some character flaw or transgression. I had a right to be angry. It was OK to be irritated by the needles and medicines. Throwing something on the floor or ripping up something wasn’t an unprofessional or immature response. At some moments, it was necessary.

Far from a character flaw, it was proof of my humanity.

I have family and friends who listen to me when I fly off the handle. They understand my limits. I know they’ve had times when they’ve wanted to cart me off to an asylum. But they’ve held back, knowing that beneath those periodic clouds of darkness, there still exists the me they’ve always known.

I’ve never wanted to “embrace” my MG. I still don’t. But I’ve learned to embrace each moment. I now know that my life won’t someday pick up where it left off before my diagnosis. Life is composed of moments of physical and emotional pain. Failure to live those moments as part of the fabric of my life is to miss out on life.

Our days are numbered. Those spent in hospitals or connected to IV lines are as rich and valuable as any others.

As best you’re able, ignore the pain. In each moment, find the gift. If you feel you must shout, throw something, or tear something up, do it. It won’t diminish you. It demonstrates your humanity. Be gentle and kind to yourself. And thank the nurses, staff, and doctors.

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.