ALS: down with negativity

I miss kitchen talk. At my brother’s house on Martha’s Vineyard just after Labor Day weekend, I received the opportunity to remember.

Peeling and cutting up apples for an apple crisp I would not taste placed me in the kitchen with my wife Kathleen and sister-in-law Alison where their chatting lifted my spirit. Hearing Alison describe her yoga routine, I recalled the tree pose I once did. Her kitchen renovation made me think, oh yes, we must replace our gas oven. I admired the letter to the editor she and my brother Clay wrote concerning immigrants at Alligator Alcatraz. When they are at their second home, she has upped her involvement in the League of Women Voters from local Naples, Florida to the national group in D.C. Their travel to Croatia to visit friends made me recall pure Caribbean-like water. Christmas in Hawaii will be festive. Back to cooking: how much light brown sugar, cinnamon? How about lemon juice and zest?

Before Alison and Clay arrived, Kathleen took a trip to the Scottish Bakehouse for croissants and cinnamon rolls. I felt that inhaling those delicious aromas would kick up my sadness, as bakery was one of my favorite ways to start vacation days. I sat on the back porch instead, listening to the cicadas pulsating as I mused on how each night we were visited by a stag who seemed curious to meet us. I looked forward to his visit and stared into his eyes as if we were each asking, who are you in your universe?

I’m relying on nature to give me perspective. Every late afternoon I pushed the red rollator, a walker on wheels with a seat (given to me by Compassionate Care ALS) down to the beach with Kathleen who skipped stones. Listening to the lapping waves gave me solace. How can I welcome this way of life with no treats to savor? Life can feel grim. I’ve started to call my liquid feeding “my lifeline” as it allows me to survive without choking. We have two trips to look forward to: Brenda texted that the CCALS cancellation list came through for us and we can go to the Retreat Center in Falmouth October 2-8^th to celebrate Kathleen’s 80th birthday. Then we will return to the Vineyard for Christmas with our daughter, granddaughter and my sister’s family.

My brothers Clay and Tom explained that when using ChatGBT and Perplexity, one choice is to use it first and then edit; another is to write your thoughts first, then give them to AI to edit. Clay suggests that I use AI to research more about my condition. That will take energy I may not have right now. Tom sent me an article in the daily online Axios about how to avoid the negativity bias coming from the doom and gloom out there in the world: “You control you.” I will continue working on that.

Clay thanked me for sharing so many details of my life. He said “Most people are so private they don’t share what’s going on.” I was relieved to hear that he liked hearing the details. I wonder sometimes if I’m oversharing. He had been at Harvard to welcome the international freshman to the dorm he lived in when he was a student there. I would love to have been able to talk about that rather than being limited to writing questions on my Boogie Board.

For some reason my gravity bags stopped dripping freely when I sat at the dining room table with my family. Was part of the blockage the stress I felt being observed by my high performing family? My sister Jane couldn’t come because she is so dedicated to leading her memory care residents in their daily activities in Newburyport. Clay and Alison are world travelers who still play tennis with passion (as do Jane, Tom and Holly). Tom and Holly also won the summer season of Alerion sailboat races at the yacht club where Tom is Commodore. When I was 12, I painted, sailed and raced my Turnabout named Queequeg when my brothers were enamored of their motor boat and waterskiing. I was the family’s sailor until Tom built the insides of a 41-foot Morgan sloop Alcyone. My biggest accomplishment was sailing a 21-foot 110 to Marblehead with friends Julie and Joanie to participate in Race Week. In high school, I won my foot-high silver and blue women’s doubles tennis trophy. In college and grad school I raced sailboats on the Charles River and in San Francisco Bay. Alas, now I’m sitting on the beach, period.

I came home for a cataract surgery evaluation that took half a day at Mass. Eye and Ear. So many eye tests, numbing eye drops, and so on wore me down and so I didn’t manage to question my surgeon’s recommendation of new glasses for reading and distance for the next nine months. I’m also ambivalent about adding another major stress to my life right now. As long as I can see clearly, I’m OK with that. But I need the ALS Clinic’s help regarding the experience of other Bulbar ALS patients. Has anyone managed to get cataract surgery when the surgery is done looking straight down through a microscope meaning the patient has to lie flat on her back? Google says adjustments can be made in the positioning. We’ll see.

My neck brace is also not on a timeline yet. I don’t know when I’ll be scanned or how long it will take for the brace to be made, fitted, and usable. Our friend Joanna knows of a set designer who might be able to help put something together with velcro.

Alison gave me a lavender heating pad for my shoulders to help after my fall to the ground while staking dahlias. When I got back home I tried to leap up on the high bed and I fell on my back and shoulder again, crumpled in a corner on the floor. Now the heat and weight of the heating pad and a massage have helped.

My healing conundrum: I will avoid negativity by finding ways to distract myself through connecting with others, keeping in touch with my dahlias, avoiding falls, holding my balance. From the mysterious to the obvious next steps, I will ask for help from the ALS Clinic and use a stepstool to get in bed. Hearing other people’s travel stories is fun. Kathleen is holding it all together, thanks be to her. My purpose to get my novel out in the world is happening as I’ve sent discussion questions for September 15^th to the Hyde Park Racal Equity and Justice Book Group who will discuss Act I of Burnt Umber (available on Amazon). Please world, help me to discuss, listen and learn.