ALS: Sketched from Life

We were going to see Winslow Homer’s watercolors this week at the Museum of Fine Arts but remaining entry ticket times were too late for me in the afternoon. So in place of going, we watched an online Zoom lecture and I heard themes I wanted to address with you.

First, I misheard the title of one painting Leaping Trout as Weeping Trout. I’ve cried three times this week after stopping the medication Nuedexta. One of its “side benefits” is stopping one from irrelevantly laughing or crying. I believe the time has come for me to be emotional and express it whenever I can.

Our lecturer Christina Michelon, PhD, pointed out that Homer’s work celebrated translucency as did Japanese prints brought to the Museum of Fine Arts by William Bigelow in the 1880’s. He was the inspiration for my fictional character Doro Banyan’s grandfather and her desire to change her family’s legacy at the MFA in my novel Burnt Umber published in April 2025.

In Driving Cows to Pasture, Homer presents a man with his back turned to us so that we see his crisscrossed suspenders. I think of myself going through my routine every day stoically turning my back on all I feel, having given up the freedom to live my life as I was living it before this wretched diagnosis.

Rocky Coast and Gulls shows splashes of waves that look like spitballs. Oh yes, the waves in my life are now spitballs.

Turn, Turn, Tumble; Tumble, Tumble, Turn was the gallery’s naming of the march of time toward the end. I am being pushed to the end of my life with ALS. Not knowing what will happen next, feeling myself losing my balance, experiencing more shortness of breath. I feel discouraged by never feeling comfortable. Mucus alternates with dry mouth, day in, day out, all night long. My eyes are so blurry I can barely see. I miss my old body.

Good news I have this week, I learned from the Minnesota Bulbar Support Group that Temple University is creating a neck brace that will be available once measurements are submitted, by 3D printer. Could this one possibly be comfortable to wear? In the meantime I ordered the Headmaster Collar on Amazon and I hope to make it work.

Our friends Meri and Jennifer offered to write and ask the MFA Bookstore to carry Burnt Umber. If anyone else would like to do that, you may consult these details below and send your own version to membership@mfa.org and cc: MFA Membership Director Amy Waywell. No pressure. Only if it appeals to you.

To Christina Michelon, PhD, lecturer: You gave such an excellent Winslow Homer lecture. When you mentioned William Bigelow’s Japanese prints, I wanted to tell you that the novel Burnt Umber (published in April 2025) was inspired by Bigelow. The main character, Doro Banyon, is trying to change her family’s legacy by making the MFA more inclusive. If you would recommend it to the bookstore it could be read by the museum-going public who are trying to connect with the Boston community to make the MFA more inclusive.

At the large gift shop my friend asked if there was a section of fiction whose stories had to do with the MFA. She said there were none, just nonfiction books about art in the museum and one that addresses race “Please Wait by the Coatroom: Reconsidering Race and Identity in American Art.”

This website: pamelahowlandwescott.com will give you themes and the cover which features the MFA as a main character. Also see reviews on Amazon. The author has ALS and no speaking voice which is why others are needed to encourage the museum-going public to read this book.

My healing conundrum this week: ask for help and don’t feel bad about it. Ask for help in holding your head up, keeping your balance, managing mucus and dry mouth, feeling emotional. People’s voices have also grabbed my attention. Ranging from the MFA Lecturer and Membership Director to Liz Stanley of the ALS Association’s Creative Pursuits Program to the man who talked Kathleen through shutting off our dishwasher’s alarm at 9pm one night this week. She was dealing with so much, she momentarily mistook laundry soap for dish soap and had to flip the circuit breaker switch in the basement. These voices resonated with confidence this week. I so miss my own speaking voice.