Are your conversations too focused on your disease? Just let it be.
A columnist draws upon his formative years to find some sage advice
When I attended a college staffed by Augustinians, five theology courses were required for an undergraduate diploma. Those classes helped me develop a mature understanding of religion and spirituality.
Back then, I couldn’t know that one day I’d find a valuable lesson in the work of the four Evangelists, other authors of the New Testament, the writer of a traditional American spiritual, and one of the biggest musical figures of the 20th century. Readers who live with myasthenia gravis (MG), including me, may find this lesson valuable.
The New Testament passages are 2 Corinthians 5:7, which states, “For we walk by faith, not by sight” (KJV), and James 4:8, “Come near to God and he will come near to you” (NIV). Both passages have been interpreted as surrender to a higher power as well as acceptance of the moment. Centuries later, the theme of surrender appears in the American spiritual “Just a Closer Walk With Thee.” In the latter part of the 20th century, John Lennon further developed it in his song “Imagine.”
At this point, you’d be within your rights to ask how any of this relates to MG. The answer requires a few quick detours.
Only I can stop this
The first detour is into the mental health of those with the disease. Over time, I’ve experienced challenges to my mental health from something as simple as taking six medications on time each day. I’ve also had serious difficulties, such as waking during the night unable to breathe and wondering if I should dial 911. I always want to discuss how and when these troubles happen. Talking about them is my way of gaining understanding.
Detour No. 2 involves changes to one’s daily life. MG requires regular visits with my neurologist and other medical professionals. It can necessitate accommodations at the grocery store, the Department of Motor Vehicles, and many other places. Couple this with the wide range of medications that are familiar to only a few, and I have enough material for dozens of conversations.
For me, these detours can have negative consequences. It’s possible, however unintended, for me to center my life on MG. When talking with friends and family, I sometimes forget there’s a limit to how much they may be interested in hearing about my medical journey.
These friends and family may, out of a genuine desire to be caring, ask several questions about my health and my symptoms. In these cases, they may lose track of my desire to talk about something other than MG.
For the past five weeks, I’ve been staying with a cousin while major renovations are being done on my place. I officially nominate her for sainthood! Two mornings ago, when I came down to breakfast, she asked how I was. Without regard for the weather or plans for the day, I began to discuss my symptoms and their different stages of seriousness. Then I stopped myself. A light came on, and I was crushed by the thought that at times, I didn’t seem able to discuss much unrelated to MG.
I know that only I can stop this. But how?
In search of a solution I did some serious thinking. My conclusion surprised me. It’s summed up in the writings of the aforementioned New Testament authors and their musical descendants: Let it be. Just don’t discuss topics related to MG all the time. Chill!
MG and other chronic diseases require careful treatment and monitoring. None of us should ever lose sight of that. To maintain a healthy equilibrium, however, we need to create boundaries that separate all that comes with MG from all the other events, big and small, from which days are formed.
When you are too focused on your disease, take a step back. Choose one of the songs I’ve mentioned or check out the writing of the Evangelists or their compatriots in other religious traditions. Find a good secular author. Forget about everything health-related. Find some peace. Let it be.
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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