Dear Friends,
FUUSM has been like a second family to me ever since I moved to Lakeville in 1998. I loved the people, the music, the programs, and the growth it inspired me to make! So there is something I need to tell you.
I have been afflicted with the weirdest disease.
I have ALS, a fatal disease in which one’s motor neurons lose their connection to the brain. I have bulbar ALS which starts with the throat and mouth. So early on I lost speech, beginning with the ability to sing, no great loss for the rest of the world, but still a personal loss. I now communicate solely via an erasable tablet. Fortunately, my handwriting has actually improved, and I have learned that brevity is indeed the soul of wit, but also to be relevant to the running conversation! Regrettably, I have learned I can’t spell.
One very distressing thing I am going through is increasing difficulty swallowing. Mostly the progression of ALS is in the form of general weakness or lack of coordination. With my bulbar ALS it is as if an alien mollusk lives in my mouth instead of a tongue and the legendary spirit that closes the Dardanelles or the strait of Bosporus controls my jaw; so beware, dentist, I may bite!
I now officially have ALS as other parts of my body are affected, the worst being my left-hand, arm and leg. It takes me an hour to get dressed even if the clothes are set out for me. I use a rollator nicknamed Tolstoy (suggested by autocorrect) around my condo and have graduated to a wheelchair to get down to the coffee shop just across the river because I took a nasty tumble when Tolstoy wanted to go downhill faster than my legs would go. Nothing was broken but pride. However, the trauma set me back a bit.
Now that I am in hospice care I am blessed with an amazing team of professionals. Actually, even before hospice I had an amazing team. Lucky me to have a daughter who was a very popular primary care physician who just closed her practice but knows the local medical scene well.
Early in my disease I was able to design and help install a garden almost all of plants native to southern Vermont that replaces the front yard of Al Short, the beloved gentleman friend who followed me here to North Bennington, Vermont. The idea was to set an example of what we could do with our own yards to reverse the loss of birds and insects the current use of land is causing. The photo is its September glory. We have hopes for spring and summer of ’24!
I don’t expect to live to see the spring bloom, but maybe my disease will stop progressing so fast, and maybe Trump will not start a revolution. We can always hope!
With love to all my friends who are part of the FUUSM community and those whom I never had a chance to get to know,
Mike Schroeder
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