Praying that I never lose courage
Living with myasthenia gravis means accumulating loss
The limitations and frustrations that accompany life with myasthenia gravis (MG) have dominated my thinking the past few weeks. I wish I could say I’ve gleaned inspiration from the experience, but I can’t. It’s one of those times when MG has taken from me and failed to give anything back.
During these challenging days, I’ve formed a friendship with a featherless goose. We share similar struggles. Maybe we belong to the same flock. Her name is Borka, and she’s the central character in John Burningham’s “Borka: The Adventures of a Goose with No Feathers.” This wonderful children’s story captures the loneliness and isolation felt by those who are different. As the title suggests, Borka, unlike other geese, has no feathers. As far as geese go, lack of feathers is a severe handicap.
At this point I need to address some questions. Did I really befriend a fictional goose? What do I have in common with this goose? And how does it relate to MG?
Let me explain.
At once happy and sad
While hospitalized with a myasthenic crisis last year, I received an uplifting text message from my nephew, who announced his engagement. He’s an incredibly caring and loving guy, so I was excited and happy for the couple. He’s occupied a special place in my heart ever since he was a sweet, curly-haired, blond baby. Adding to the special nature of the event, it will take place in Barcelona, Spain, on Aug. 24.
The news boosted my spirits and dissipated the gloom and frustration I felt. These hospitalizations are difficult. They require plasmapheresis and intravenous immunoglobulin treatments, which are made more difficult by my trypanophobia, or fear of needles. I needed cheerful news, and there it was!
Or was it?
Since my MG diagnosis, I’ve learned that sometimes, if I want to keep my sanity, I need to ignore the limitations the disease imposes. Even as I allowed myself to be thrilled with thoughts of a trip to Spain, I knew that MG would most likely make it impossible. While thoughts of travel provided a bright spot, it was occluded by MG.
I call 2023 my Vyvgart (efgartigimod) year. This drug has helped my life resemble what it was before my diagnosis. I no longer live with the threat of a myasthenic crisis hovering over my head each day. However, like all medications, Vyvgart has limitations.
Before the June approval by the U.S. Food and Drug Administration of Vyvgart Hytrulo, which is administered subcutaneously, the protocol for Vyvgart treatment involved four one-hour infusions administered intravenously over four weeks. That was followed by a four-week interim before the start of the next cycle. This protocol posed some difficulties.
Before MG came into my life, I spent summers in Maine. Time spent with family and longtime friends, coupled with the wonderful New England summer weather, was an elixir that carried me through the rest of the year. Since 2020, MG, COVID-19, and surgery to repair prednisone-related avascular necrosis have kept me in Dallas.
This year, I anticipated a return to normal. Then access to Vyvgart infusions changed my travel plans. Insurers regulate how, when, and by whom the drug is administered, so it took months of planning to work out how I could continue to receive treatment while out of state. Having met the insurance requirements, I’m now in Maine. Better late than never.
The effort to obtain Vyvgart infusions out of state demonstrated how much I depend on the treatment. Keeping my MG under control requires Vyvgart. A trip to Spain could undo the good I’ve achieved with this drug. So I won’t be celebrating a wedding in Spain.
In a few days, my family will leave for the trip. Siblings, in-laws, nieces, nephews, grandnieces, and grandnephews will head for the land of Cervantes. Two of us will remain on this side of the Atlantic. Once more, I’ll experience anger and sadness brought on by what MG has taken away. I’ll know the pain and isolation Borka knew.
“But Borka did not go. She could not fly. Instead, she went and hid, and watched them leave,” Burningham writes.
Since my diagnosis, I’ve had many days when I’ve hid and watched the world pass by. I’ll do it again this week. Isolation and loneliness will color my days. I don’t know when it’ll pass. Perhaps it won’t. Maybe the darkness is here to stay.
I hope that won’t be true. I’m reminded of Sisyphus rolling a stone uphill. I’ve rolled depression up the proverbial hill time and again, and I’m weary from the effort. If there’s any comfort, it comes, appropriately, from Cervantes’ “Don Quixote”: “He who loses wealth loses much; he who loses a friend loses more; but he that loses his courage loses all.”
I pray I might never lose courage.
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