Reluctantly, I retrieved the Sunday New York Times from the front porch this morning. Since Beau died I haven’t much felt like watching television, reading books or the newspapers. I mostly just like to sit in silence and look out my front window—a bit like an Alzheimer’s disease patient myself. I let my mind float away from the suffering of this world. I find that if I don’t move or think, it brings a kind of peace. Albeit an unnatural kind.
I pulled the blue plastic bag off and left the newspaper on the kitchen counter while I made the coffee. Please, please have a good travel section. Not like last week’s issue which was all about London. A place I love but don’t really need right now. Give me India, or Kenya or Cambodia, or Singapore, or the Philippines. Places that remind me of Beau when he was alive in the world. Places that remind me of my own self when I didn’t feel so lost.
I took my place by the window and took a long sip of hot coffee. I put the Times on the floor next to me. Maybe I will get to it, maybe I won’t. Oh look, the cat got to it first. Saved by the cat. But what is that picture next to Kitty? That’s a man curled up in bed with something very very wrong. His wife is spooning him. What? Who are these people?
And then I read it. The story of woman who loves a man with a rare form of brain atrophy called frontotemporal dementia. This version robs personality and language first, and can even turn the kindest person into an angry beast. Then, like with AD, its victims become a shell.
From the paper:
“The frontal lobes are sort of the last frontier in the brain,” Dr. Huey said, adding that the losses these patients suffer are helping researchers understand more about what the frontal lobes do. As the brain atrophy progresses, Dr. Huey said, patients “have pieces of psychiatric syndromes, but not the whole syndrome.” For instance, they have compulsions, but not the usual accompaniment, obsessions. So they may wash their hands over and over again, but not in a worried or anxious way. Some lose their inhibitions and moral judgment. Shoplifting is not uncommon. Many have the apathy and social disconnection that usually go with depression, but they do not feel depressed.
“They’re not down, but they just don’t enjoy things as much as they used to,” Dr. Huey said. “There appears to be a dysfunction in the reward circuit, where activities that were rewarding and pleasurable no longer seem to be. These patients lose themselves.”
Far more reamarkable in the article is Ruth French’s story of love and loss over her husband Michael. Their relationship is the centerpiece of the article.
On most days, she spends several hours at the nursing home with her husband. She shaves him and sometimes climbs into bed with him to hold him and to nap together.
“Where do you carry my heart?” she asks him, referring to a poem they love by E. E. Cummings.
He smiles and pats his chest.
And then it hits me. This is exactly what I need. What we all need. More stories. Less statistics. I feel my experiences with my father in the words of Ruth French. (Full story here.) I feel nothing when I read that such-and-such number of people will have Alzheimer’s or dementia by the year 2025. I want to know the story of every single one of those people. Only then can we understand the grandeur of what is being lost with each individual case. And only in this way, too, can we preserve their memories in a manner that medicine still cannot.
I’m sadder this morning, instead of a numb. Don’t worry, it’s a good thing. I’m not staring out the window, I’m writing. And I can’t wait to read the Travel section—which is, serendipitously, full of trips to Asia.
Because of the power of someone else’s story, mine makes more sense. Suddenly I’m a mermaid again, with Garuda looking over me. Real fairy tales don’t have happy endings, but that’s why we love them–and life–so very much indeed.