Love remains…

When Alzheimer’s disease progresses—annihilating ability to word-find, understand language, and speak cogently to loved ones—what remains is affect; particularly affection. In the early stages, this disease has periods where sufferers exhibit highly reactive emotions that often present as angry, nonsensical or delusional. These periods are particularly hard on close relations and caregivers.

One very difficult experience I recall happened eight years ago in a favorite Upper East Side restaurant. Mom and I were dining and suddenly her neighbor came up to the table to say hi. Startled that she didn’t recognize him, Mom launched into a hysterical rant about how I was planning to kill her. Increasing agitation caused her to suddenly get up and leave the restaurant. I ran after her knowing she would never calm down if I caught up with her. So instead I followed her as she wandered the streets agitated and lost; finally ending up at her building. From across the street I saw her smiling and talking with the doorman. When I entered the lobby she sneered at me. Then let me accompany her up the elevator and into her apartment. She never spoke of what happened in the restaurant. Just as she never admitted to having Alzheimer’s, even through the five years she spent living in a Memory Care facility.

Four months ago her deteriorated physical condition required a transfer to a medical model nursing care unit for memory patients. Though it is considered the best unit of its kind, it is nothing like the family-oriented, loving memory care environment she thrived in. She no longer eats and sleeps most of the time. Mom is making it clear: I am ready to bring this horrible last 10 years of my life to a close.

For the last four years Mom has not known who I am. Yet, when I arrive, though she cannot speak much, she immediately brightens in her affect. The love is palpable. She laughs when I make jokes. I can’t tell if she understands anything I say, but her eyes display interest as I relay the goings-on of my life. I hold her hand when she lets me. Play Beatles songs she and my Dad adored. If she gets agitated I stand behind her wheelchair holding her shoulders gently to restore parasympathetic response.

These days it is especially hard to leave at the end of a visit, knowing it may be the last time I see her alive. Sadness pervades the field between us. We stand together in the awful knowing that she, a highly intelligent and deeply caring woman, has been utterly decimated by Alzheimer’s. And even so, our mutual love remains… triumphing spectacularly over this dread disease like a victorious army refusing to lose its most precious treasure.

All Things Must Pass Away

For ten years Twitter has been my primary resource to access and interface with colleagues nearby and far flung. Residing and working around the globe, my feed was populated by a rich mix of medical, psychological, academic, contemplative researchers and clinicians.

I was appreciative of how intentional contact curation made this possible and somehow I assumed Twitter would not change. The basic platform would remain as it was. My community would keep contributing and interacting with intelligence, care and respect. Oh how wrong I was.

Of course I knew that Twitter was a cesspool of hatred, misinformation and nefarious bots. Yet, I counted on Twitter’s infrastructure of values/rules of conduct to keep that away from my feed. Then a couple of weeks ago the specter and reality of Elon Musk arrived full force and disassembly began to erode much of Twitter’s corporate and technical foundation.

One by one my community began to close their accounts. And my feed filled with Elon Musk’s antics and the counterpoint #twitterapocalypse. The rich community I had relied on for years to offer up the latest and most interesting research links and discussion dissolved before my eyes.

And I was sad. So bereft and powerless.

And then the wave of Mastodon tweets started showing up. “Find me now @mastondon!” So I investigated Mastodon and though it seemed interesting, I kept bumping up against the futility of not finding my people. So many servers… disjointed, slow, not intuitive coding in the app. And I realized anyone could say they are me and create a profile that looked like me. Big red flag!

For years people have admonished social media sites as superfluous, consumerist, privacy nightmares, and rife with the worst humans can dish up. It was not till my community went away in a poof of Elon Musk smoke that I understood how real cyber-reality actually feels for modern humans. Especially when a user has carefully over many years orchestrated it to deliver nurturing, informative, and honest content.

Today one of my colleagues let me know that Noam Bardin, former Waze CEO, has decided to get in the game of building a new social media site Post.news dedicated to “Real People, Real News, and Civil Conversations”. They seem to be taking their time to carefully build, so now you can only join the waitlist. I look forward to my invitation arriving so I can see what Post is actually like.

I did not expect Twitter to devolve so quickly and yet I know all things are subject to impermanence. My heart goes out to all Twitter employees–whether fired or remaining. Thank you for a wonderful decade! May you find peace and healing.