3 Months of Sisyphean Struggles Teach Me About Endurance
What happened when speaking, swallowing, and seeing became big problems
“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.
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.
This article sums up the last two+ years of my life perfectly. Thank you, Mark, for so eloquently articulating what it is like to live with severe refractory MG.
Hey there Peter. I appreciate your kind words. My dad also had MG (lived to be 86) and I never fully understood his struggle. He would say he was tired an I'd think -shake it off. It can't be too bad, it's just fatigue. Now I understand and feel I could have been more understanding. I think perhaps it's the nature of MG. It is an invisible disease. Others can't see any outward signs. No scars, no outwardly visible symptoms. I have had nights where I didn't have enough energy to reach over and turn off the table lamp. Peter - I understand fully the struggles you face. Please keep me posted with your journey. Best regards, Mark H.
I was in mg crisis I was completely paralyzed my daughter found me on the floor couldn’t yell for help or move and was in hospital16 days. I had 10 treatments of plasma aphersis it helped but took 11/2 months to be able to walk and talk and feed myself. I’m on predsone but now have. 2 fratures in vertebrate slowly getting off of them also mestinon all this since Feb 2022. So just to let you know it did help me good luck and take care.
Gaylee! you are the second Gaylee I've met. I have a dear friend of 23 years who spells her name Gayleigh. If you are anything like her, and I'm sure you are, you're a real delight. Prednisone is a wonder drug. But, as you know, it must be used with caution and great seriousness. I was on 60mg for more than a year. The prednisone caused avascular necrosis of both hips. (the bone is killed by the prednisone.) It was months before they were able to diagnose it. I went for every test imaginable. Finally I was hospitalized due to a crisis last December) and one of the team listened to ne about my left leg. Within 12 hours I had a diagnosis.The months before diagnosis were the worst in my life.The pain was so intense I would involuntarily scream and beg God to take me. The hip surgery was great. BUT, it threw my MG all out of whack. Monday my orthopedic doctor told me it was time to start thinking about replacing the right hip. Yesterday they injected steroids into the right hip snd for the first time in five weeks Im not in constant pain. Keep me posted about your journey. I understand some of the problems that confront us. I'll ad you to my prayer list. Regards, Mark H.
Three months after diagnosis I had a breathing crisis. And awoke hooked tow ventilator three days later luckily ivig worked. It’s over a year later I’m on low dose prednisone and cellcept. So far so good but my crisis left a lasting impression But made every day that much more meaningful