I have been reading a long piece about Alzhemiers in the New York Times that has really given me some hope about this goddamned, piece-of-shit disease. As I have written here, my Dad had it, and my best friend has it. So I’m always on the lookout for sane approaches. The article is called “Fraying at the Edges” by Michael Kirby Smith, and tells the story of Geri Taylor and her husband Jim. Please, if you or anyone close to you is showing signs of Alzheimers, or even if you’re just terrified of it – which I don’t know anyone our age who isn’t – please read this article for yourself. In a nutshell, here’s the story:
When Geri Taylor was diagnosed with Alzheimers, her therapist advised her to keep it a secret. You will be shunned by friends and family, the therapist said, people will drop away. Hearing these words, Geri knew exactly what to do – she fired this therapist and told everyone. She didn’t do it willy nilly. She told her husband first and he was freaked out for about two weeks, but then he came around to the understanding that had been growing in her: The way to play this was to be honest with their friends and family and to move forward with those who stuck around. And people stuck, not everyone, but their kids stuck, each in their own way, and a lot of friends. They weren’t perfect, but after it all sunk in, they were the people they had always been only more so in the unusually honest light of this situation.
With their eyes open to the fact that their time was limited, Geri and Jim became determined to do the things they had always wanted to do, while they could. At their house it was Carpe Diem on steroids. Geri, who had always loved taking photographs of birds, started spending hours and hours in Central Park with her camera. The intense creative activities gave shape and purpose to her life, as witnessed by her beautiful photographs in the article. The time she spent behind the camera took her out of the scary future into the still-amazing NOW, it fed her optimism,
Jim, who had always been intrigued by the idea of acting, went for it, landed a small part in an original play, loved it. Please don’t get the idea that Geri and Jim’s artistic endeavors were some kind of sad last grasp. Yes, the thing that got them going was a sad thing, but getting going and where they went was exhillirating.
Another benefit of this god-awful situation was that Geri and Jim got more honest with each other. With time short they couldn’t afford to let things slide, couldn’t let their days get gummed up with petty stuff. They became more direct than they’d ever been which led them to know and appreciate each other more deeply. “It’s ironic, but I think that this is the happiest time of our marriage…” said Jim.
And finally, the diagnosis, by making time precious, allowed Geri and Jim to live more fully in the moment. Both together and individually they got better at noticing and savoring all kinds of little pleasures. Everywhere they saw beauty and funny stuff and interesting details. “It was like becoming a Buddhist by accident,” Geri said. One of the loveliest things I have ever read was Mr Smith’s description of Geri and Jim sitting in their living room enjoying a long conversation as the afternoon became late afternoon and the light drifted through all the colors of the sunset.
Reading the article, this all makes such perfect sense to me. And yet when my friend, J, was diagnosed, it never even occurred to me to speak honestly about it with her. The diagnosis came at a terrible time, when her husband was dying of cancer. She had been showing signs for a while, usually with me it came up in phone conversations because we live across the country from each other. She would repeat something several times in a conversation and then she would ask me if she was repeating herself and I would say, no, no, no. Or I would assure her I repeat myself all the time too. When her family insisted she get tested and the tests came back, Alzheimers, she accused them of ganging up on her. And I jumped right on that horse. We bounced along like that in heavy denial until J accidentally set a fire. Then she was whisked into a memory facility where I visit her regularly. When I’m there both of us, who have shared the most intimate details of our lives for the last 40 years, completely ignore the glaring detail of where she is and how she got there. Lately it seems that more and more she does not remember the wheres and hows of her life. It’s probably too late to get honest about all this now.
One happy thing the article helped me to understand, is that that J’s husband had been helping her for years. I’ve heard of this happening, the spouse passes away and then everyone realizes that the surviving spouse has Alzheimers and that the one who died was covering for her. This has always seemed like a sad thing to me. But because Geri and Jim have chosen to show us their lives, I see what a deeply sweet and intimate time this collaboration can be. I hope it was like that for J and her husband. I’ll bet it was.
But for me and her, it was an opportunity lost. Of course, even if I’d read this article before, it might not have made a difference. Maybe she wouldn’t have been able to accept me knowing. But maybe if I had had the nerve to broach the truth, even once, maybe we could have talked about it like we have always talked about everything.
All of that is impossible to know. But I do know that if I get Alzheimers, I’m going to follow the path of Geri Taylor – I’m going tell people. I’ll be prepared for the fact that they may not instantly deliver Hallmark words of acceptance and support. But I expect most will stand with me in them-centric ways that may well be spectacular.
I also know this – if another friend of mine gets this damned thing, I’m going to bring it up with them. I would never push for a person to go public if they didn’t want to. And I won’t go on and on if they don’t want to listen. But I’m going to mention it, just saying.
I don’t need Alzheimers to know that my time is much more limited now than it’s ever been before. I’m already going head long into what I want to do, creatively, which is to find like-minded, long-living people with this blog. On the to-do-list, there are all kinds of treats I have been putting off, trips and hikes and conversations. I need to keep in mind Stephen Covey’s fabulous quote: The main thing is to keep making the main thing the main thing.
Considering the new ideas in this article, my petty level is way down. I keep having unusually sane thoughts like: “Do I really want to pitch a fit about this messy kitchen and then sacrifice perfectly good hours and even days arguing and judging and chewing it all over. “How important is it?” is my new favorite question.
This new level of calmness and sanity is a gift of long life, I think. It surprises me how I am able to look at this tragedy of Alzheimers and actually see the moments of beauty and grace, both in the experience of Geri and Jim, and in my experience with my best friend J. There really is an Age Advantage.
Geri and Jim Taylor have begun to speak publicly as part of an emerging community that advocates a more honest approach to living with Alzheimers. This work has infused their lives with a new purpose and meaning. Geri struggles harder these days as the disease takes its toll. But she is part of a medical trial for a new drug. It’s too soon for results, but cross your fingers, say a prayer, bombard her with healing light and good intentions.
To read the entire article, google Fraying at the Edges, New York Times. Or click: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-
Originally posted 2016-05-14 01:00:08.