After My MG Diagnosis, I Found Value in Togetherness
“I’d trade all of my tomorrows for one single yesterday.”
The soulfulness of Janis Joplin’s voice and poignancy of Kris Kristofferson’s lyrics in “Me and Bobby McGee” have always resonated with me. The despair and longing are raw. Is there any return from that wasteland?
Against my will, I learned the answer.
In June 2020, one week before departing from my home in Dallas to spend the summer in Maine, I developed double vision. I made an appointment with my optometrist, who referred me to other doctors. I spent the next few days undergoing tests at Baylor Medical Center. Four days later, I had a diagnosis: myasthenia gravis (MG).
In an instant, the life I’d known disappeared. Upset, I called my sister and told her the news. “We’ll get through this together,” she said. When Ann Marie speaks, we listen. “Rie” means what she says and doesn’t shy away from difficult realities. I took comfort in “together.”
The problem with my eyes was ptosis, or eyelid drooping. Sunglasses were necessary at all times, and venturing outside was impossible. My fatigue grew so severe I couldn’t turn off a lamp.
I began taking Mestinon (pyridostigmine). Eventually we had to add high dosages of prednisone. When that duo didn’t work, CellCept (mycophenolate mofetil) was added to the mix. My medicine cabinet began to resemble the pharmacy at CVS.
It was still the heyday of COVID-19, when nobody really knew how the virus would affect MG patients. Isolation became synonymous with survival. Driving, shopping, playing cards, going to the theater — all the little joys of everyday life vanished. Fear and caution shrank my life to within the four walls of my home.
I’d learned about the necessity of mourning after my parents died — Dad in 2011 and Mom in 2016. The writings of Elisabeth Kübler-Ross, the psychiatrist who proposed the five stages of grief, helped me navigate those losses.
These lessons helped me once again after my MG diagnosis. The life I’d lived before my illness was no more, and it required no less mourning than any human death.
In that darkness, I decided all my tomorrows weren’t worth a single yesterday.
Soon, my speech deteriorated. I needed help with basic necessities. I’d always been independent and a control freak. Now I couldn’t cook, clean, shower, or tie my shoes. What had I done to bring this on? Why couldn’t I have yesterday back?
Rie would tell me not to say this. “Look forward, not backward,” she’d exhort, but I couldn’t let go of my former life.
Ancient Greek tragedian Aeschylus taught that if we desire to learn, we must suffer. He found meaning in suffering, writing, “… in our own despair, against our will, comes wisdom through the awful grace of God.” I’d read Aeschylus’ works and taught them to students in my history and psychology classes. That summer, I came to understand them more deeply.
Living with a rare illness requires a paradigmatic shift. No matter how strong the individual, the journey cannot be solitary. Once we grasp this, we turn a corner. Our love for family and friends is multiplied. Accepting my need for assistance lifted a veil, allowing me to see that there’s no shame in asking for help with tasks like shopping or cooking. As I passed through my own “Dark Night of the Soul,” as described by 16th-century mystic and poet St. John of the Cross, it was love and connection that pulled me through.
I discovered BioNews, the publisher of Myasthenia Gravis News, and connected with patients and caregivers. Here was a community, open to everyone, comprised of people who understand the host of challenges MG presents. A community that provides easy access to the latest science and clinical work as well as emotional support.
Unable to speak, I found pleasure in sitting quietly as my 3-year-old niece built a volcano and her 5-year old sister read “The Pout-Pout Fish” (which I highly recommend). When ptosis prevented me from reading on my own, I discovered Audible. Once again, the world of books was open to me. Things may never be the same, but perhaps they take on new shapes.
To others living with MG, mourn your losses (I certainly mourned mine), but plan for a rich future. Plan a trip even if you know you’ll never take it. Honor your yesterdays, but don’t trade away a single tomorrow. You might find in your darkest night, and against your will, wisdom will come “through the awful grace of God.”
Rie and her husband, Joe, share everything with others, always inviting people to drop by for dinner or take a dip in the pool. So I know she won’t mind if I share her advice: “Nobody does this alone. Let go of that burden. We’ll get through it together.”
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.
A very true and insightful article. My experience was very similar. Double vision led to my diagnosis but I had other symptoms for several years, swallowing difficulties, falls without causes and some muscle weakness. High doses of prednisone were my initial treatment and then I started on infusions of Solaris. Solaris and a small amount of prednisone keep my symptoms under control nicely. I do get tired easily and require mote sleep but I am doing well.