High Temperatures Make My Brain Become Strangled in Static
Columnist Stephen De Marzo is learning to cope with MS and heat sensitivity
AM radio is infamous for bad reception, resulting in nothing but static. You can search the dial frequency by frequency, and it’s all static. Occasionally you will cross a station, but then the car moves, and the reception is lost again.
When I’m overwhelmed with the heat, that’s what it feels like. Static! It feels like my mind is closing off and my brain is being strangled. The noise only exacerbates my multiple sclerosis (MS) episodes. I have to retreat. I need cool temperatures, quiet, and sleep to reboot.
After the diagnosis of my primary progressive MS (PPMS), I read about the struggles people with all types of MS have enduring the heat, and it wasn’t long before I started learning about my own challenges.
My wife and I enjoyed going to local restaurants for dinner, and one of our favorites during the summer was an outdoor bar and grill. We went there in June 2021 (three months after my diagnosis), and while it was hot, it wasn’t unbearable.
Nonetheless, I started overheating. I couldn’t keep my head up, and I had no strength in my legs to get up and walk to the bathroom. I asked the waitress to bring over water, ice, and towels, and I put the drenched towel over my head for several minutes. During this cool-down period, I was unable to think clearly or speak.
It took about 30 minutes for me to recover. The experience was unsettling for me, and we decided that we’d give up eating outside during the hot summer months. Since that time, the number of my heat intolerance episodes has increased, and while each experience is slightly different, there are some trends that I’ve noticed.
In March, I almost passed out due to my overheating during a wake we attended. The weather was comfortable outside, so I wore a suit and tie. But inside, the air conditioning in the funeral home was not rated for the number of people who attended. The temperature in there had to be in the high 80s, and with hundreds of people gathering and talking, I knew I couldn’t handle it. The noise and heat in the small funeral parlor were intolerable, forcing me to be carried out for air.
I drank water and stayed outside for about 30 minutes to get my senses back in order. After this incident, I decided that I wouldn’t wear suits anymore.
Yet after attending a wedding in April not wearing a suit and feeling too casual, I decided to try wearing one again for a second wedding in June, this time without a tie.
This event was a resounding disaster. The wedding ceremony was outside, the cocktail hour was outside, and the temperature was 95 degrees in the shade. This heat tsunami set me up for a complete physical and mental shutdown that forced me to leave the reception early.
Again, static shut me down. Normally I am a very conversational person, but not when I’m overloaded. The heat and static are the tunes, and I become extremely irritable. Rags, ice water, and escape are the only stations I want in those scenarios.
My wife is a planner, but I can be quite stubborn and don’t always listen to her. The week of the June wedding, she was watching the temperatures and asked me not to wear a suit since we’d be spending time outside and it was going to be extremely hot. On the day of the wedding, she asked me to shower early so that I could rest for a while before we headed out.
I told her I could handle it. Well, I was wrong. My vanity and my desire to be part of the festivities in the heat created an unpleasant evening for both of us.
I’m now following some of my wife’s planning lessons. This past weekend I went to a pool party when it was 95 degrees. I was appropriately dressed, in shorts and a T-shirt, and did my best to mingle in the shade. As soon as I felt symptoms coming on, I immediately retreated into the air conditioning. My friends were very understanding, and this action worked to mitigate the effects. I lasted the night and my spirit was renewed. Boy, it was a great night!
The next day, a very good friend sent me this text:
“You are an inspiration, my friend. The one thing we all have in common is that our bodies will fail at some point. Thanks for showing us all how to face it gracefully while always bringing joy to others. Love you and your amazing wife! Stay well.”
It was a great night, static and all!
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