When I began writing my blog, I was warned that I shouldn’t start it unless I was committed to writing on a regular basis. You can see where that went. I’ve taken a seven month sabbatical—time does go by fast when you’re having fun.
Since my last blog entry, I’ve given speeches about Alzheimer’s and caregiving in Montreal; Greenwich, CT.; Baltimore; San Francisco; Dublin; Berlin; Luxembourg and Paris. My photographs from I Still Do have recently been on exhibition in Berlin and Paris and are currently in museum shows in San Diego (MoPA) and Daytona Beach, Florida (SMP.) It’s clear to me that people around the world want to understand the personal stories behind the Alzheimer’s statistics—and art is a way for them to connect very personally and very viscerally with a disease that is often still hidden. Seeing how people bond with Ed through my photographs of him, and by extension connect with others with AD, is something I find very rewarding and touching. For me, photographing Ed has enabled me to give shape to something that’s shapeless and a voice to something that’s been silent. It’s been a way for me to confront Alzheimer’s using the only weapons I have.
Ed, by being my model, my muse, my husband, my best friend—and, always, my cheerleader—has given me a very great gift. He’s also touched thousands of people whom he’ll never know.
Since we’re in the season of Thanksgiving, I will add that Ed and I are doing well even though his Alzheimer’s has progressed. Our conversations are less complex and wide-ranging, but we still understand each other. We go for walks in the facility in which he resides or we sit in the sun holding hands. Last week, Ed had forgotten who I am and that we’re married—what he told me, though, is that I’m his best friend. That, and dinner with my family, make this a very good Thanksgiving.
A few days ago I was at the Louvre, looking at some of the world’s most gorgeous art. The Museum’s magnificent collection includes a number of beautiful paintings by Leonardo da Vinci that are hung on a wall close the room where the Mona Lisa is displayed. It was a pleasure spending time with the other da Vinci’s—I could stand in front of them for as long as I wished and get as close as I wished without disturbing others or being disturbed by them; mostly because the others weren’t there. They were in the adjacent room where the small Mona Lisa is hung behind bulletproof glass and fifteen or so feet beyond where the closest viewers are allowed to stand. Eventually I walked into the room where the celebrity painting holds court to millions of viewers each year—roughly half of whom were there when I was. Each of them was pushing, shoving, clawing his way to the front of the crowd—digital cameras held high and flashing their forbidden bulbs. The crowd looked like paparazzi—I wouldn’t have been surprised to hear people shouting “Look this way, Mona.”
One of the things Alzheimer’s reinforces is the value of living in the moment, of experiencing what’s in front of us. Maybe some of the people in front of the famous painting were experiencing the moment they wanted to experience—maybe their pleasure came from taking a snapshot, plugging their readers into their computer, and experiencing Mona Lisa several times removed. I know that many museums, including MoMA, are now working with Alzheimer’s patients because they believe that looking at art soothes AD sufferers (and their caregivers). I like to think that people with Alzheimer’s really look at a work of art when it’s in front of them.
My daughter, son-in-law and grandchildren came with me to London for the opening reception of my photography exhibition at the Cork Street Gallery. We’re continuing to travel together—taking advantage of being in Europe and my grandchildrens’ spring break from school. We’ve been on the go—as you can imagine—but I want to take a few minutes from touring, eating, walking and (on rare occasions) sleeping, to thank everyone who has taken the time to write to me as a result of the wonderful story and slide show on BBC online.
It’s so clear how deeply families and individuals are affected by AD—the stories that have been shared with me via e-mails and comments have meant a great deal to me. I love the connections and the way we enter each others lives.
My daughter kept her Flip on during my brief talk at the Gallery—I’ll send a link once we’re back in the States.
I was going to write about another suggestion for coping with AD, and then decided against it. Alzheimer’s is a significant part of my world and my life, but it’s not the only part. I’ve been thinking a lot about my photography and writing (which, admittedly, have helped me cope with Ed’s Alzheimer’s) and the part art plays in our lives, if we’re open to it. I’ve been thinking about the ways in which art can change our world and our way of seeing our surroundings. I’ve been thinking about specific painters and photographers and musicians and the riches they’ve given me—even when their work has disturbed and challenged me. And I’ve been thinking about how grateful I am to have the ability and desire to express myself through photography and writing. I’ve been thinking, too, how I hope that each of us has the good fortune to use whatever creative talents we have to nurture ourselves and the people we love—whether we cook, or garden or dance or weave. And, in indulging our more creative ambitions, we will find new ways to cope with AD—or whatever challenges we’re faced with.
I just returned from trips to San Francisco and New Orleans, where I spoke to 2000 health care professionals. The people to whom I spoke were engaged and energetic and really interested in talking about what it’s like to live with AD. I was particularly touched by grown grandchildren who had experienced the gradual loss of a grandparent to the disease, and who often watched their parents take on the role of caregiver. I know how special a grandparent-grandchild relationship can be and I think the pain AD brings to a grandchild is often overlooked. I think the grandchildren to whom I spoke were glad to be able to talk about their grandparents and Alzheimer’s. My grandson chose to write about Alzheimer’s for a class project—I know he and my granddaughter understand things about the fragility of life that other children their age might not.
On another note: when speaking before groups, I often don’t see more of a city than an airport, hotel room and venue (Convention Center in New Orleans.) When in San Francisco, though, I did have the opportunity to spend a few lovely hours in the San Francisco Museum of Modern Art—which was, not coincidentally, right near my hotel. I often head first to the photography exhibitions—and this time was no exception. But I was also struck by the design of the museum. I’m attaching some of my photographs from sfmoma; if you’re in San Francisco, try to find time to make a visit. I think you’ll enjoy it.
The opening of my solo show of photographs from “I Still Do” was yesterday at the Andrea Meislin Gallery in New York. There was a wonderful turn-out and I loved every minute of the event. I was also very touched by the people who showed up: there were four women who were high school classmates of mine with whom I had been out-of-touch for fifty years; there was a friend of forty-six years who has seen the births and death in my family as I have in her’s; there were old friends and new friends—friends I’ve made in business, friends I’ve made through photography and friends I’ve gotten to know because of AD.
And then there were the strangers who became close friends for a few minutes during the reception. One of them was a lovely European gentleman by the name of Eytan. His wife was diagnosed with AD four years ago. We shared the pain of being married to someone with AD—the experience of trying to do your best, but never knowing if it’s good enough. Eytan and I connected during the short time we had together. And there was Natalie, a young woman whose father has AD. And Paul, the husband of a dear friend of mine who has dementia himself.
I was very pleased to see people connecting to, and through, the art; and coming together in the conviction that we want a world without AD.