Even with myasthenia gravis, all shall be well
On challenging days, I recall the wisdom of 2 women
Julian of Norwich’s “Revelations of Divine Love” — which she’d originally recorded in 1373 — was first published in 1670. Still in print, this classic of Christian mysticism has influenced unknowable numbers of readers, myself included. I’d like to share how this book has affected my personal philosophy and worldview and suggest it as beneficial reading to all who are affected by rare diseases.
I live with myasthenia gravis (MG) and am currently in a period of paying increased attention to my disease. That involves visiting specialists in many fields. Those in the rare disease community understand what I mean. We need to come up with a term for those many days of appointments.
I’ll spend hours in waiting rooms, watching those god-awful medical infomercials that seem omnipresent in such places nowadays. Occasionally I’ll strike up a conversation with another patient or caregiver. I review my notes, which include observations and questions I have for the doctor.
These visits can be emotionally draining. MG presents all sorts of challenges and asks for sacrifices I’d rather not make.
I’ve been at the MG game for almost five years now, and I’ve developed an equilibrium that helps me get through tough days. Part of that ability is formed by seeking out as much information as I can find. Reading and researching have always been central to my attempts to understand what life sends my way. Filling in the blanks and finding answers to my questions helps alleviate my anxiety.
However, no amount of research can alleviate all of my anxiety. As I sit in waiting rooms, my mind wanders down all sorts of paths. To be honest, most of them aren’t very positive.
I don’t like journeying down these dark roads, and as I sat in a waiting room on a recent Thursday, two women came to mind. One was a relative, Jodie, who passed away two years ago. The other was Julian of Norwich.
Lessons from 2 women
Jodie had a successful career that allowed her to live comfortably until age 102. She taught me much about acceptance of each day’s challenges.
In her late 80s, Jodie decided to renovate her beautiful beach home. She wanted to leave it to her children in tiptop condition. She spent well into six figures on the work, and it was spectacular. It was her summer home, and she dedicated part of it to storing all the artifacts from her long life.
That fall, the lake house was closed for the winter. A month later, Jodie learned that the hot water pipes had burst, steaming the entire house down to the studs. Nothing could be salvaged. The physical damage was intense. The loss of the pictures and other knickknacks gathered over 100 years was heartbreaking.
The insurance would cover the rebuilding, but memories can’t be replaced. The first time I saw Jodie after the terrible event, I told her how sorry I was for her. “Don’t be,” she told me. “I look at the bright side.” I thought to myself, what the heck is the bright side of this damage? Without a hint of sadness, she told me, “When it’s done, everything will be brand new.” I was dumbstruck. She had found the one positive amid all the disaster.
I’m trying to apply this philosophy to my medical challenges. I know that the doctor visits will never stop. New diagnoses will bring new challenges, and there aren’t any websites that can tell me what those challenges will be. I’m learning to accept them and realize they might come today, or tomorrow, or whenever. Jodie would find something positive in them. So will I.
Many centuries ago, Julian of Norwich gave advice that’s still applicable and most likely will remain so. Neurologists, podiatrists, maxillofacial surgeons, primary care doctors, orthopedic surgeons, and gastrointestinal specialists are some of the doctors I visit regularly. The overwhelming information from these visits makes me want to scream. When I reach this point, I remember what Julian said: “All shall be well, and all shall be well, and all manner of thing shall be well.”
It can be so for you.
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.
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