My oldest friend Bruce has chronic lyme. He’s had this condition for 26 years now – before mainstream medicine recognized lyme as the difficult disease it is.
I have described Bruce thousands (yes thousands) of times. Never successfully. He is (really and truly) actually like No One else. I don’t know
We met in college where we were both English majors. He was one of the funniest human beings I had ever met, and could talk for hours on end (me too).
We’ve shared many group houses together, and 37 years ago, Peter and I bought a house with Bruce in Upstate New York. The house was a stop on the underground railroad – storied and majestic and upstate dilapidated, too, and we have had so many unbelievable days and nights, right here. We’ve grown older together, in this small imperfect village of Cornwallville, a place where our neighbors and we share the road that connects us, although much of what we believe is different.
We still all live together every summer.
Bruce’s now legally blind (low pressure glaucoma). For someone who values what things look like more than anything, losing his sight has been impossible. And he’s pretty much alone (no partner) and often suffering from excruciating pain in his body from his lyme.
He’s gone to many many many doctors: regular MD types at regular institutions, and many kinds of healers from all over the world. The healers have machines, vitamins, hexagonal water, and psychic abilities.
Nothing worked. And his lyme got worse.
What he loves most in life is to garden. Our 28 acres are his canvas, and he’s created many astounding and miraculous paintings of plants, of vegetables, of flowers most of us have never before seen.
Gardening is where the ticks find him, and where the lyme induced arthritis hurts the most. But he still gardens.
His neuroopthamologist, a well known doctor at Columbia Presbyterian, puzzled by the rapidity of the deterioration of his eyesight, sent him to an infectious disease MD named Ben. Ben said lyme was the reason. Lyme was the cause. And lyme needed antibiotics in an IV drip, twice a day for a month.
That sounds like a simple diagnosis. But the medical system is never simple: insurance, official agencies, dispensers of the antibiotic, manufacturers of the IV drip. It’s been a summer of hell for Bruce, who left his garden to go to his hot apartment in the city and wait for people to call him back about all the pieces that aren’t in place.
We’ve tried to help. I wrote a poem describing our attempts, and the one woman who was sympathetic.
Bruce long lyme disease saga maybe
I’ll try to write a short story describing
his 26 year bout with lyme but for now
there’s this:
we took him to the Famous Lyme Doctor
Richard Horowitz MD who also treated
the Dalai Lama wrote a famous book
I tried to read not easy to write a readable book
about lyme unless you’re Atul Gawande.
When Bruce could see better
he read the same book 3 summers in a row
Seeing Without Glasses (he couldn’t).
In June he found an infectious disease doctor
at Columbia Presbyterian who said to take
IV antibiotics for 4 weeks starting now.
I’ve had many conversations with his doctor
whose name is Ben. Ben has possibly
the worst office staff at the hospital.
Peter tried to help one day. He said
he’d find a social worker liaison there who
could be our go between. He dialed a number
and handed me the phone and a woman
who sounded like a good relative of mine
older woman, patient, maybe even a Socialist
said Tell Me Everything my favorite
phrase in the English language
and I told her about Bruce’s lyme disease
and Ben’s difficult staff and Richard Horowitz
and the Dalai Lama and she listened and made
appropriate sounds and in the end she
said You know I’m in billing right?
I didn’t but I asked for her name and
sent her a thank you
note. I hope she gets it.
Love, Esther
PS: Come join ALTE and Celebrating Aging to see Peter’s new movie My 2020
Thursday August 11th at 7 PM at the Rosendale Theater. (You’ll see Bruce on screen.)
More information right here: https://www.rosendaletheatre.org/movies/alte-in-association-with-celebrating-aging-series-presents-my-2020/