I’ve never struggled more with writing a column. How does one write a column for Lambert-Eaton myasthenic syndrome patients who are part of the high-risk category during the COVID-19 pandemic?
My normal writing schedule was useless last week. If I had written my first draft and let it sit before going back to it a day or so later, who knows if any of it would have been relevant. Things are changing by the hour.
Even social distancing is changing. Those of us with chronic illness have been utilizing social distancing before it was “in” to protect ourselves from catching colds and viruses. Now, everyone on planet Earth needs to practice social distancing. But not everyone is happy about it or is willing to do it.
According to the Muscular Dystrophy Association, “There is currently no preventative vaccine or specific treatment for COVID-19. The best way to prevent illness is to avoid being exposed to the virus.”
Observing the reactions of people without chronic illness to social distancing can be infuriating. Some people don’t want to stop their social lives for COVID-19. If they aren’t in the high-risk group, they might wonder why their daily activities should be affected.
Seeing photos of friends in restaurants or at events over the past weekend, or traveling to locations with growing numbers of identified COVID-19 cases, made my heart drop.
How many more days or hours will it be before everyone in our social media feeds takes this seriously? It won’t be weeks because the virus is here. The Centers for Disease Control and Prevention and the World Health Organization are trying to stop the situation in the U.S. from turning into what we are seeing in Italy. They say we are only about 10 days behind and that we must utilize social distancing to flatten the pandemic’s curve.
My high school Latin teacher, Mary Jane Poole, has lived in Florence, Italy, for more than 20 years. She has been keeping in touch with friends and family via social media. Her loved ones are relieved that she hasn’t contracted the virus. I asked her how she’s handling social distancing and life now that the entire country is on lockdown.
Following are some of the things she shared:
“I began my own partial social distancing before it was advocated and then mandated here in Italy. That was because I had arrived in Florence (where I have lived for more than 20 years) on February 21st from Los Angeles via Paris, and understanding that one could have the virus asymptomatically for up to two weeks without knowing it, I decided to lie low a bit.
“Everyone has had to take on the ‘keep your distance’ attitude now because it has been ordered by the Italian government until April 3rd, at which point it will be reassessed. We are allowed to buy food (only in one’s own zone), go to a pharmacy for health items, to the post office, and the bank. Breaking the law is risking a fine of around $250. If on public transportation or in a car, you must have an official form describing why you are out.”
This is Day 4 of mandated isolation, and so far, I am fine … lots of books to read, areas to clean, items to knit and sew, people to stay in touch with electronically or by phone, and there is my hope that all those years in Maine taught me what to do to counteract cabin fever.”
On “Italy’s night of music,” when people in towns and cities across the entire country played music from their balconies or courtyards last Friday evening, Mary Jane listened to the sound of church bells ring out across her neighborhood.
Church bells in Florence, Italy. (Video by Mary Jane Poole)
Italy is onto something. It is incredibly important to stay informed, but it’s also important to feed your isolation with things that are good for the soul. And music has always been a source of comfort to me.
One of my favorite singer-songwriters is Adam Ezra, who like every other musician on the planet, has had to cancel his tour. Instead, every night at 7 p.m., he performs mini-shows live on Facebook. “These are scary times. This can be a space you can show up and hang out for a little while,” Adam said in a video.
Last night, my soul was soothed with Adam’s good looks and amazing voice streamed live to my TV set. I danced in my seat and sang along. For the hour he was streaming live, I safely escaped my isolation and connected with other music lovers.
That’s my advice for this week: Find something that soothes your soul, whether it’s music, drawing, painting, or another creative pursuit, to escape the isolation of social distancing. Stay safe.
For the first time in my lifetime, we are all social distancing together. We can do this.
“Veni, vidi, vici!” (In Latin, “I came, I saw, I conquered!”)
Note: Lambert-Eaton 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 Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
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