Facing ALS by tapping into my old self

The moment everything shifted before Thanksgiving was when I realized that I needed some Fruit Center therapy. Kathleen drove us to the smallish market in Milton, and found an unusual empty parking place on a Monday afternoon. I admired the outdoor offering of wreaths and swags, and pushed a cart inside past the corner of colorful table flower arrangements, and a wall of cakes and pies. I headed for the small organic chicken we would stuff and roast, and serve with a buttery, maple syrup filled acorn squash, and other sides Kathleen might make. On this night, I would cook a Lemony Dijon and Dill cod dinner for Kathleen though I might not eat much of it.

My strategy worked. I felt like my old self, lusting after all the treats I used to eat—sushi with avocado and salmon, kalamata olives, sharp cheddar Oscar Wilde cheese, wild strawberries from Canada, coconut key lime yogurt, eggplant parmesan, 19^th hole sesame stick and nut mix, elderflower seltzer to which I’d add a slice of lime. I can still eat tiny bits of fresh guacamole, garnet sweet potatoes, Faroe Island salmon. The Fish Market’s offering of fresh cod fillets from Iceland made me smile, and I chose a glistening piece to cook for Kathleen’s dinner.

Thanksgiving arrives

My life has always revolved around shopping, cooking and eating, so it’s no surprise that I’ve felt uncertain how to celebrate with a shred of a voice, and being barely able to taste the banquet.

Now to feel grateful for maintaining some strength. What would it be like to be the 75-year-old farm laborer in Florida who tried to enact heat protection for outdoor workers after he suffered heat stroke, lost consciousness, and had to be hospitalized? As the NYTimes reported, he advocated for water, rest and shade breaks, riding buses to attend public hearings, but the protections were banned by Florida’s Governor DeSantis who said it would be unfair to allow different rules in south Florida from the Panhandle. I noted this laborer got paid $1.50 for each bunch of sweet potatoes he picked. Shame on us.

Speaking of advocating for health protections, When I got the signal from our State Rep Rob Consalvo this week that the time had come, I sent my letter to the MBTA’s General Manager Phillip Eng. I begged for plug-ins for the diesel engines that are still idling through many nights. Our former Mayor Menino instituted plug-ins (so that engines could be started without idling). He lived in Hyde Park, and as a result of the plug-ins, our neighborhood was silent. Since his death, the pounding has upped the stress for people (like us) living in houses built on a rock ledge that vibrates (while others don’t even hear it). In the six houses in our city block, four people have come down with cancer, including me. I survived lymphoma, but my cheek biopsy that cut a nerve may have led to my facial muscles losing strength, and now ALS. I’m going to stay involved and connect with whatever grassroots organizations surface.

This week, I also participated on a Zoom to help create a decision aid for patients deciding whether to have a G-tube installed (like the one I have). I hope patients can give their feedback in groups. After 20 years of conducting shared decisionmaking focus groups, I saw how groups give people courage to reflect honestly on their own experience.

I will never forget the man who threw screws from his first back surgery on the focus group table in Miami. His outburst led to tales of repeat surgeries that went awry. One woman in tears in a focus group in Atlanta said she was not told a lumpectomy was possible rather than having her breast cut off. The group supported her and my colleague Ellen noticed, they seemed lifted up by participating in a conversation that might help women like them in the future. Several asthma patients in San Diego worked out contingencies to not have to let go of the beloved pets they were allergic to (for one, it was her horse). In Seattle, patients reflected on better food and exercise choices they’d made after being diagnosed with diabetes. A group in Scarborough, Maine included a few who opted not to have a stent or bypass surgery. They managed their heart disease by spending the summer outdoors, a few playing golf. Not everyone has that choice, but some do.

Now in my case, two diets no one would ever want to go on—the Cancer Diet and the ALS Diet—made me lose the 30 pounds they now want me to gain back. Part of me resists. I like feeling light on my feet, having all my clothes fit so loosely. How do all of those thin actresses maintain their energy and strength? For now I must gain strength however I can. One more irony, having lowered my cholesterol significantly, I read that high cholesterol supports longer life for ALS patients.

My healing conundrum: roll with the punches, trust yourself, give back to others all that you can.