Last time, I wrote about the day my husband Jed’s body started to shake. In this upcoming week that includes the Jewish holiday of Hanukkah, I am meditating on the holiday’s insistence that our community’s faith creates miracles out of the most profound everyday constraints.
October 2024
I insisted Jed go back to the neurologist that he’d seen a couple times, since the first time he felt a cluster of neurological symptoms that would not go away.
In prior meetings with the neurologist, I felt the two of them were acting like everything was ok – they talked in chummy, all-knowing, polysyllabic medicalese, as if Jed’s sickness was a third person in the room but they never talked about him or to him directly.
This time I insisted I go into the exam room, so if Jed tried to pretend nothing was the matter, I would calmly explain what I had seen evolve over the past year.
But before I needed to say anything, the neurologist saw it too when he asked Jed to walk down the hall, and recommended a follow-up MRI.
As soon as the MRI was prescribed, Jed started focusing on what would be his diagnosis. He read online articles incessantly searching for answers and watching as the pieces come together:
- Tremor
- Parkinsonism movement
- Nightmares
- Trouble organizing and expressing his thoughts
And the results of two different MRIs.
Jed’s mother died of Alzheimer’s, so he wanted to rule that out, or see if he maybe had two diagnoses, but the lights he saw flashing loud and bright pointed to Lewy Body Dementia (LBD), the second most common form of dementia, one that is erratic and unpredictable, attacking physical, cognitive, and emotional systems, one or two at a time, or – frighteningly and increasingly – all at once. It was the disease that pushed Robin Williams to end his life by suicide. Here’s a video about Robin Williams’ experience.
A year later …
I’m on a train from Prague to Vienna, and Jed is beside me reading In Love by Amy Bloom. The book follows her husband’s journey through medically assisted death while he is on the cusp of Alzheimer’s rendering him unable to choose when he wants to die.
Amy Bloom describes creating a journal where she and her husband could write about the hard details of his illness in a less pressurized way. In Berlin, I bought a journal for us to use in that way.
Jed and I had a really lovely vacation … first with our daughter and her family; then just the two of us … doing the things we’ve always loved to do together … walking and learning, listening to all sorts of live music, dancing, and eating the local foods beside the people who live there.
Of course there was a bittersweet quality to everything, the likelihood that we won’t be back to some of these places together, the unpredictability of everything related to LBD.
In the middle of all this, my mother died, suffering from the pain of cancer and dementia, mentally far far away. Jed’s illness and my mother’s death have unfurled side-by-side over the past year. It is a tremendous relief that my mother’s suffering in this world has ended, and I am now able to speak the words she asked me to share after she died.
This bittersweet learning and longing has continued around our kitchen table, since Jed and I returned from our vacation in central Europe. We have gotten better at welcoming these things we cannot fully know or control into the rhythm of our daily lives.
This week, take any moment from your list of Defining Moments, and write out as many details as you can think of related to that moment. Using our trip to Prague and Vienna as an example, I ask myself questions like: “Where did you walk?” “What foods did you eat like the local people?” and “What does bittersweet feel like? What else does that feeling remind you of?” Look at the places where you use generic language that applies to many people and make it specific to your own lived experience. As much as possible try to incorporate what I call the 3Ds: Details, Dialogue and Description.