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New York clinical psychologist Alan Dienstag, a guest on NPR’s excellent Speaking of Faith program, was talking about his experiences leading a writing group for people in the early stages of Alzheimer’s disease. I was especially moved by his accounts of the inevitable transition out of the group by participants no longer able to communicate in ways that contributed to the meetings.
He recalled one such woman who, it seemed, had reached that point. As her disease advanced, he continued seeing her privately, helping her hang on to what few connections her brain was able to make, especially those with Nature.
A smile’s light suddenly broke through her opaque expression, and he knew this had reached her.
Even after she could no longer vocalize her experiences of the birds, animals and plants, she and Dienstag would still just walk around and look at things. Later, when she’d retreated still further into “almost a mask-like blankness,” he began talking with the woman’s husband about whether their sessions were the best way to spend her time.
Meanwhile, Dr. Dienstag was preparing to go on vacation. He knew the woman shared his love of the beach. So, as he was leaving their session, he told her that’s where he was going.
A smile’s light suddenly broke through her opaque expression, and he knew this had reached her. He asked her, “What do you love about the beach?”
Then, in Dienstag’s words, “She kind of drifted away…and she got very quiet. And again I waited and I thought…she can't really answer that question. And she turned to me and she said, 'There's some kind of music that lives there.'"
NO IDEA
I witnessed a similar breakthrough in my mother during her last few years in this life. No one seemed willing to say whether she had Alzheimer’s or not, but it seemed clear that she—or at least that bright, articulate part of her spirit once visible to us—had gone somewhere.
I joined Mom for dinner every Thursday evening. I’d catch her up on the latest news of family and world. Most of the time I couldn’t tell if she understood me or not. Even when I’d try to engage her with a question, her expression would remain blank, her eyes unfocused.
I wanted to give her the benefit of the doubt, hoping that, at some level, she heard and understood me—perhaps like what we sometimes hear about people coming out of comas and remembering people who’d visited and talking with them.
She lifted up her head from her osteoporosis-bent body, fixed her cloudy eyes right on mine and said, “Oh, you have no idea!”
Once in a while, Mom would look at me and start talking exactly as she might have ten years earlier. The first few words would have that familiar, bright, engaging intonation I remembered. “Well, you know I’d…” Whatever it was she’d intended to say, the thought would evaporate into thin air. That was it. I didn’t know what to do.
Sometimes I'd just assume that what she’d intended to say pertained to what I’d been telling her, so I’d go back and provide more details. Or I’d try to guess what she’d meant to say, but she wouldn’t respond to my questions. This had happened several times when I finally said, “Mom, it must be awful knowing what you want to say and not being able to find the words!”
It was a long shot; I figured it would go right through her. But she lifted up her head slowly from her osteoporosis-bent body, fixed her cloudy eyes right on mine and said, “Oh, you have no idea!”
Nature can affect us at any number of levels and in ways we might not expect. Both of these women, even though nearly stripped of their ability to interact with anything outside of their own skin, still managed to find and express a point of connection.
BRING ME DOGS
How haunting these glimpses into the hidden layers of mind and spirit. After all, we know so little about those places. At least so far, we can’t interview anyone who’s been there and come back in any condition to tell the tale.
Perhaps my mother’s comment comes as close as we’re going to get to a report on what that’s like. I suspect each of us lives with a shard of fear that we could succumb to Alzheimer’s, ending our days in what seems like it must be a living hell. Would we be acutely aware of our alienation, or might Nature (or would God) mercifully provide us an antidote to the loneliness—perhaps the emotional equivalent of adrenaline?
I want to believe that, just as a person can lose his or her hearing or vision or legs and still adapt and carry on with a happy, productive life, one with a cognitive disease like Alzheimer’s might fall back on some other, as yet unknown, capacity for happiness. Perhaps it’s an imaginary world or maybe just a heightened level of spirituality.
Whatever it is, I pray the reason we don’t yet know about it is simply that we haven’t been able to find it. We should all be grateful to the researchers who are looking.
Might Nature … mercifully provide us an antidote to the loneliness—perhaps the emotional equivalent of adrenaline?
If I’m ever in that position—unable to communicate, possibly even close to death—my fondest wish would be that someone give me the benefit of the doubt that I gave my mother that evening. Believe—no, expect—that, in some way, at some level, I’ll understand.
It’s not so different from how enlightened parents teach their children. Just as they expect their kids to understand some things other parents might assume are beyond them, I’d like my loved ones to expect that I can hear them, understand them and appreciate their presence.
And I don’t want this credit to end with just the obvious physical and mental contacts. I want them to understand that I’ll still need spiritual nourishment too. As Dr. Dienstag did, take me outdoors and let me feel the air, smell the earth, witness life. If anyone says it’s pointless, ignore them.
They’ll understand.
