How to enjoy summer despite MG and heat intolerance
Taking precautions is key, but with modifications, summer can still be enjoyable
On Oct. 10, 1935, the classic of American theater “Porgy and Bess” opened on Broadway. The show was not an instant success. Its first run ended after only 124 performances. Despite this, it went on to become an iconic part of American theater. “Porgy and Bess” demonstrates how sometimes greatness isn’t immediately recognized.
As far back as I remember, when summer rolled around, I’d hear someone singing or playing the “Porgy and Bess” classic “Summertime.” This song is now recognized as one of the finest in American theater.
I mention this because summer has arrived in Texas. Summer here consists of dry, soul-crushing, triple-digit days. This weather won’t let up until fall arrives.
Sunset walks on the beach
The other day, I was out with my friend Barbara, and we were bemoaning the weather. I should mention that Barbara has a master’s degree in theater arts and has spent much of her adult life working with high school students. Barb loves live theater, and her car radio is always tuned to Sirius XM’s channel “On Broadway.”
Barbara has been with me since day one of my myasthenia gravis (MG) journey. She understands MG as well, if not better, than many MG patients. ”Summertime” came on, and Barb, aware of the heat’s negative impact on MG, quipped that the lyrics should be changed to “Summertime and the living ain’t easy.”
I laughed at the humor. But we became serious and had a discussion about the effects of high temperatures on MG. An October 1980 article published in JAMA Neurology noted that, “The deleterious effect of heat on the clinical symptoms and the electro-physiological abnormalities of myasthenia gravis is well established.”
There isn’t much we can do about the weather. But we do need to understand that it can add to the isolation that often accompanies life with rare diseases. Our friends and loved ones may know that we have MG, but naturally, they don’t know as much as those of us who live with it do.
In her column “You’re Invited to the Barbecue! How to Make Summer Events MG-friendly,” fellow columnist Shawna Barnes wrote: “Through my experiences, I’ve recognized that it can be difficult for friends and family members to understand this rare disease, let alone know how to support those of us living with it. When people don’t know how they can take action and help, they tend to shut down or remove themselves because they feel helpless.”
I suggest that we spend some time helping those close to us become aware of how MG has changed our lives. Even simple things most people take for granted can impact our lives. I remember swimming in the ocean and foraging on the shore for washed-up pirate treasure. Then MG came along and made the enjoyment of these pleasures impossible. Now I can walk the beach early in the morning or late in the evening.
Once I’d spend much of the day in the pool. But MG has limited this now to cocktail hour, when the sun has begun its journey to bed.
My pool and beach days are in the past. But I’m OK with that. Many of those who once shared beach and pool fun are no longer here to share summer. I reflect on those people and how they made my life richer. I can walk the shore at sunset. I can drink my cocktails in the shade.
I’ve rearranged my summer activities so I can be with those I love. I’m trying to avoid a situation Shawna captured perfectly: “The heat of summer has caused me to miss out on more family functions and events than I care to remember. Losing the ability to attend these events sucks. Being unable to participate makes me feel like a noncontributing member of our family. As a result, relationships can suffer — especially if people don’t understand how the heat affects MG.”
There are many ways we can mitigate the negative effects of summertime heat on MG. Myaware compiled a list of these that is worth checking out. But don’t stop there. Engage your care team in a discussion about this issue. They know you best and may have suggestions you haven’t considered.
What’s important is that we get out there and enjoy summer as best we can. Let’s follow Ralph Waldo Emerson’s advice: “Live in the sunshine, swim the sea,/ Drink the wild air’s salubrity.”
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.