ALS: Stumped

I don’t know what to do about the uncomfortable neck brace, the wheelchair waiting for me in the dining room, the mucus that keeps me from sleeping each night, or my insurance that is still in process to try and have coverage for the fanciest wheelchair when it gets to that. I must figure out how best to live in our 1878 Victorian two story home. I am most comfortable on the living room couch where I can hold my head up. And now I’m reading A Marriage at Sea by Sophie Elmhirst about the couple whose sailboat was hit by a whale and sank. They are floating in a raft tied to a dinghy in the Pacific Ocean where “Sharks circled and buffeted the raft. A turtle got caught in the dinghy ropes.“ They worried he might chew through them or take a bite out of the raft. It took a long time to set him free. These are such fitting images of unpredictable scariness and struggle that I’m feeling in my battle with mucus.

The only funny thing about this disease is I never paid attention to it before I had it. Now what do I need to change to manage it? Should I move downstairs or keep walking up and down the stairs? I am sleeping in a recliner upstairs with a view of tree branches and the sunset when it lights up the sky in pinks, orange and reds. The wheelchair seems too big to use in our home. I am stumped.

In the weekly support group three people talked about falls. They joked about our frequent faller program in place of the frequent flyer program. One member who slipped off his recliner and landed on the floor has a huge long bruise on his back. I walk now with a hiking stick. I decided to talk it through with Meg, my physical therapist, Teri, our couple’s therapist, and Johanna, our palliative nurse practitioner.

My PT Meg’s humor helped lighten my load. We tried on the brace and as before, it hurt my forehead and anterior left shoulder. Meg laughed and said we can send some feedback and see if Rusty has more comfort ideas. I do feel this is my fault. I should have insisted on comfort from the beginning.

Our therapist Teri helped me to accept that I can keep trying to live, though comfort comes and goes. I needed to be reassured that my care is not causing Kathleen too much pain. She told Teri what happened a year ago when she had a double brain bleed after taking care of my feedings and meds and all the house chores. While she was being treated for a month or two, I did my own feedings, meds, caring for Isaac, and the Sunday night trash and recycling carry outs. Thank goodness that was then and not now. Back to the Marriage at Sea book, I appreciate my couch as opposed to being on a raft in the middle of the ocean where “It took such energy not to feel hopeless…It is not so much the feats of endurance that keep people alive as the absence of surrender.”

My palliative care nurse practitioner Johanna, a birkenstocks lover like me, realized that the color of the deer head she cut out and painted for us (hanging on our front door) is burnt umber. It helped so much to have her attention to get medication refilled urgently and to figure out how to use the wheelchair in the world. I will try to summon the strength to take it on the MBTA Ride to the Museum of Fine Arts for Winslow Homer’s watercolor exhibit.

This week’s healing conundrum: I was told by practitioners and loved ones that I have a right to live each day as best I can. I don’t have to feel guilty to ask for help. I know, however, that I must hold onto my purpose. This week, it was not only to love my family of Kathleen and Isaac.

It was, as always, self-care that’s turning into a night shift, and trying to get my novel Burnt Umber into the Museum of Fine Arts Bookstore for sale. I finally found the piece of paper that Rebecca obtained for me about their product application process. I gave them my website address pamelahowlandwescott.com with all of the information needed for ordering, and emailed as requested:

Dear MFA Bookstore,

During Mathew Teitlebaum’s decade of tumult as Director of the Museum of Fine Arts, I wrote my debut novel Burnt Umber about a fictional character Doro Banyan whose great-grandfather brought back art objects from Japan to create the Asian Wing of the museum. Doro wants to change her family’s legacy as she comes to understand and feel the desire for inclusivity. When her mixed-race 11-year-old friend describes being bullied in school, Doro does her part by creating a bully quilt in community with others affected by bullying.

In gratitude for the work the MFA has done, I am sending my novel to you and if you can direct me to the proper people in charge, I would like to send it to your IDEA (inclusion, diversity, equity, access) Task Forces who could use it to help recruit community members to bring more change to the museum. I also hope the MFA Bookstore will carry it.

Please note that I moved quickly to self-publish the book when I was diagnosed with bulbar-onset ALS in September 2024, and though I am still mobile with strong hands, arms, legs, and brain, I have lost my speaking voice. I can respond by email or text or use my cloned voice on Zoom if needed. My passion for art at the MFA goes back to studying Art History at Wellesley College and I would love for my novel to be of use for the museum.

So to all of my friends and family: hold onto your purpose. That is the best thing you can do to hold onto your life.