ALS: Talisman Memories

As the snow fell on Sunday night, and after reading your replies to my morning post, I felt my emotions rise. Now I wish I could say more about my dear old ex-husband Jamie who just died with Stage 4 Metastatic Lung Cancer in his bones. But I’m giving him privacy for now. My healing conundrum is that I will grieve his passing while working on the other mysteries in my ALS experience. Once he asked me “when will you write a book about us?” Maybe not a book, but a Substack post at some point.

Mystery #1: How close am I to leaving this earth?

I have no idea. A bit about my current context. We had watched the Patriots beat Houston; they move on to play the Denver Broncos at high altitude today. Last Monday, on Martin Luther King Day, we zoomed a celebration of our Hyde Park community. As the Black men’s chorus sang We Shall Overcome, tears fell out of my eyes. Our Attorney General, Andrea Campbell, had said “we are living in wicked times.” Others replied, “We must find a way to respond to the wickedness by doing the work of justice.” Kathleen’s brother Randy reported from Patagonia, Arizona a friend marched with a sign: I LIKE MY ICE CRUSHED,

Mystery #2: figure out how to manage everything from your neck brace, to meds for shortness of breath, to mucus management. I’ve become exhausted by not sleeping for more than two hours at a time. Every night I get up every 1-2 hours to suction. My day on Tuesday was devoted to the business of life: from sorting out health insurance to writing messages on Patient Gateway to arranging a Hospice information meeting to ordering grip bars for the shower and gel cushions to sit on.

Mystery #3; Why have I lost more weight? My dietician sent a liquid feeding alternative made with peptides to see if that creates less mucus and adds a little weight. After the first two nights, I was scraping off dark brown paste from the roof of my mouth and still gurgling early in the morning,

Mystery #4: How can I create space in my study where I now sleep in a recliner?

I have always let my energy guide me to decide what to do next. This week, I kept wishing I could throw out stacks of notes left over from writing my novel, all arranged in three stand-up file sections: Beginning, Middle, and End.

When I asked myself why must I look at them all vs. simply toss, I got my answer from a one-time Zoom talk for museum members by an artist at the Isabella Stewart Gardner Museum. James Prosek helped me to solve Mystery #4: why must I look once more at each bit of research I saved while writing my book Burnt Umber?

The artist asked himself: why do I keep the shells and rocks I’ve found? Isabella Stewart Gardner noted that handheld found things contain memories. I realize each section of my papers contains memories just like treasured stones. Isabella felt passionately for every art object she found. As a result she felt all of the talismans she brought home gave her remembrances. The artist looking at it all now said “Sometimes this museum feels like a flea market. But it gives me the solace Isabella described as “hands to work, hearts to God.”

Mystery #5: my joy comes from visits with friends. Pam Redgate brought a lavender orchid, corn bread and chocolate brownies to go with Kathleen’s Chili for a Crowd from the Silver Palate. Martha spoke of finding joy while boxing up everything in their house to prepare for selling and moving to Marblehead. Rebecca walked Isaac once more and he was delighted to see her. Kathleen’s sister Christine calls from Wisconsin (weekly) along with Kathleen’s friend Ruth from Pasadena. Sue Taylor told us of their stay at a Lenox B &B to embrace the 8-inch snowy winter in the Berkshires—perfectly cozy. Diana and Phyllis zoomed from Key West. I got an overview of my 55^th Wellesley Reunion on a Zoom with Mary B and Wellesley classmates.

My Physical Therapist Meg supported my comfort, and Nurse Practitioner Annemarie covered every base of care. My CCALS Senior Liaison Eileen helped me navigate the health insurance bureaucracy, and Home Care Assistant Bridget gave us future planning support. Our Governor Maura Healey gave a rousing State of the Union talk we enjoyed in our living room with many examples of people who helped others in crisis. I can be in crisis or not, but enjoy moments of love and levity when they grace me.

Our couples counselor Teri sat in our living room, such a gift, and helped us pull it all together. Especially helping me feel I could say what I needed to say here about Jamie. Rest in peace, my dear old friend.

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