Okay, I'm not proud of it, but I have Caller ID. It protects me from people I don't want to talk to, or don't want to talk to right then. Some callers, hoping to thwart my machine, have cloaking devices, but these register as unknown caller, a dead giveaway. Caller ID's only flaw is that it doesn't tell me what the caller wants, only if it's friend or likely foe. About a year ago I got a call from Lee Duff, an old friend and racquetball partner. His identity was dutifully reported by my machine, so I picked up, thinking he meant to invite me to Waterville for a match, whereas, in actuality, he'd called to ask a favor. With any luck, the next generation of Caller ID will provide more information. It will tell me: "The caller is your old friend Lee, but he's not calling about racquetball. He wants to know if you'll donate your time, energy, and name recognition to benefit a local hospice organization. You might want to pretend you aren't home." Now that would be a useful machine. [For the rest of this exclusive excerpt, see the May 2008 issue of Down East.]
But it doesn't exist yet, so I picked up. It was indeed my friend Lee, who had, since retiring as superintendent of schools for Winslow, Maine, agreed to chair the board for Hospice Volunteers of the Waterville Area. Would I be willing to drive to Waterville to discuss some sort of fundraiser? I stood there glaring at my Caller ID for a long beat, convinced of its betrayal, before finally saying, sure . . . of course . . . why not . . . when? We could also play some racquetball, Lee added sheepishly.
Well, of course, it's not unusual for authors to be asked to do charity events. Like most writers I know, I do a fair amount of pro bono work for a variety of worthy causes. I give readings or short talks for the benefit of schools, libraries, literacy initiatives, even hunger organizations. The idea is that an appeal from a writer, especially if he's well known in the community, may count for more than one from an average citizen. The problem is - and I say this from experience - they don't count for much more. Occasionally writers are able to help raise significant sums, but far more often our best efforts result in what I've come to think of as "literary bake sales." After all, we're not rock stars or athletes or actors, and merely showing up as ourselves rarely loosens purse strings. Worse, when people ask if we'd be willing to do "some sort of fundraiser," what they're hoping to suggest is their flexibility (anything that suits us will be fine with them), whereas what they really mean is that they have no more idea than I what I might do for them. There are all sorts of nonprofits seeking help (and deserving it) and they all seem to share the same half-dozen threadbare ideas for raising money in heartbreakingly small amounts.
Nevertheless, I drove to Waterville, where I met with Lee and Dale Marie Clark, who directs the hospice program and whom I immediately liked. That's the other bad thing about working for nonprofits. The people who head them up are invariably the kindest, most generous, decent, and hard-working people you'll ever meet; you really do need a machine to protect yourself from them, because once you meet such people in person you're doomed, just as I was ten minutes after meeting Dale Marie.
So, for the next couple of hours we trotted out all the old, stale ideas, and I explained, party-pooper that I am, just how little money a reading or a lecture or workshop for local writers would likely generate: a dispiriting exercise. Luckily, my companions were both first-rate storytellers, and between listlessly advancing and then dismissing these stale fundraising ideas, Dale Marie and Lee fell to swapping tales, many having to do with hospice clients and volunteers. At some point it dawned on me that stories were the thing these folks were rich in. And here I was, a professional storyteller. What, I wondered, if I wrote some of these stories down, published them in some sort of pamphlet? The flaw in that idea was immediately apparent. Too many stories, too few of me. Such a project would take forever and I had, after all, my own stories to tell. On the other hand . . . what if I could convince some of my writer friends to join me in the enterprise? What if a half-dozen of us wrote one story each, resulting not in a pamphlet but a real book?
The result, a little over a year later, is a publication called A Healing Touch: True Stories of Life, Death, and Hospice (186 pages; $15.95; www.DownEast.com
), a small volume of true stories by Maine authors Monica Wood, Wesley McNair, Bill Roorbach, Susan Sterling, Gerry Boyle, and me. When I approached my fellow writers (none of whom had the right kind of Caller ID either) with yet another opportunity to work hard for yet another worthy cause for free, they all said yes before I could even finish my pitch, and Down East Books saw in the volume we were proposing an opportunity to do not just well but good. (All of the book's author royalties will go to the Hospice Volunteers of the Waterville Area, and Down East will donate a portion of its profits as well.) We contributing writers are enormously proud of A Healing Touch, in part because we badly underestimated the job. We thought, perhaps because we weren't going to have to make these narratives up, that they'd be easy to write, the work of a few hours or perhaps days. But the stories we were told by both hospice patients and volunteers ended up grabbing us by the throat, worming their way into our psyches, and in general demanding far more of us than we imagined, more than we probably would have volunteered had we known what we were in for. We think the resulting stories will surprise readers. They aren't morbid. There's death in them, yes, and loss and pain, but also hope, and humor, and healing and, most importantly, life. It's a book to read yourself and then to pass on. Someone you know needs it. It may even be an antidote, of sorts, to ungenerous impulses, like the one to not pick up the phone because it might be an old friend wanting something you can and should give.
The following is an edited excerpt from Richard Russo's story "You Know Who You Are," from A Healing Touch: True Stories of Life, Death, and Hospice.
One day in 1994 Lee came home from school and was surprised to discover that Ann, his wife, was not there. Had he forgotten a meeting? They both had very busy schedules. She was a tireless volunteer at their church, and her fair-mindedness and industry made her much sought-after when it came to committees. Lee himself had just gotten out of one meeting and he'd come home for a quick bite to eat before driving back in to town for another. It was odd, though. Usually, Ann left a note if they weren't going to eat dinner together, and there wasn't one. Nor was there a message from her on the answering machine, and the house didn't feel like she'd been there recently. He was talking himself out of becoming anxious when he heard her pull in. A couple of minutes later, when Ann came into the kitchen, she looked more puzzled than worried. "Funny thing just happened," she told him. "I couldn't remember how to get home."
* * *
He knew. Right from the start, some part of Lee knew. Ann's forgetting how to get home was not "a funny thing," and now he began to recall other incidents. Of late, Ann had seemed uncharacteristically absentminded. She'd walk off and leave a stove burner on in the kitchen. Opening a kitchen cabinet, Lee would discover something that belonged in the pantry, and when he went to put it there he'd find something else that belonged in the kitchen cabinet. Such mishaps were minor, insignificant in and of themselves, but now he had to consider another terrible possibility. Had Ann simply forgotten to turn off the burner, or did she not remember its ever having been on? Was she hurriedly putting things in the wrong place, or could she not remember where they went?
There was a difference, and Lee knew, deep down, what the difference was, that it had a name. But it wasn't a name that could be spoken out loud, at least not yet. And there was another thing he was sure of. Ann knew, too. Only fifteen years earlier she'd gotten a call from her older brother, asking her and Lee to drive to Houlton to help assess her father's condition, which at the time was often called "hardening of the arteries." But it was Alzheimer's, an aggressive case, and by the time the family convened, her mother was black and blue from trying to deal with him. Ann and Lee had been instrumental in convincing her mother there was no way she could handle her husband any longer.
A month after the first, there was a second driving incident. This time he and Ann were returning home from Houlton in separate cars, Lee leading, Ann following. Lee noticed she kept falling behind. Even in his rearview mirror, Ann's driving didn't seem right. Worried, he pulled over onto the shoulder and she, blessedly, did, too. Getting out, he found her pale and rigid with terror, gripping the steering wheel as if her life depended on it, even with the car at rest. She'd forgotten not just how to drive, but how the car worked, what made it go faster, what slowed it, what turned it off. The harder she thought, the more foreign everything in the car seemed. It was all too complicated, as if, in the blink of an eye, a child's game of Chutes and Ladders had become a Rubik's Cube.
Frightened out of his own wits, Lee nevertheless knew that the first thing to do was diminish, if possible, Ann's panic, no easy task when his own was rising. But he took her hand and went into a catcher's crouch there on the shoulder of the road, telling her to relax, that they weren't in any hurry to get home. If she was too frightened to drive, he could come back for the car later. "I'm worried," she confessed. "I don't know what's happening."
"I'm worried, too," he admitted, but he assured her that everything would be all right. Probably she'd just suffered a panic attack. How long did they remain there along the side of the road, holding hands? Lee doesn't remember. But after a while the knowledge of how to drive a car was there again, so simple, the gas pedal to make the car go, the brake to slow and stop it, the key in the ignition to start it up. So simple.
With most life-threatening illnesses early diagnosis is key and being young is advantageous. Not so Alzheimer's. The younger a person is when diagnosed, the more precipitous the physical and mental decline is likely to be, and catching the disease early gets you nothing. Ann's reluctance to talk about what was happening to her prevented any official diagnosis until spring of that first year when her symptoms became undeniable. It was their grown daughter, Kathy, who lived in the area, that finally convinced Lee to take her in to be evaluated, and it was then that the word they'd been unwilling to speak was finally said out loud. Ann was diagnosed with early advent Alzheimer's, and the diagnosis had an immediate and profound effect. She began a gradual withdrawal from everyday life, as if the word she'd dreaded for months now gave her permission to be ill, to acknowledge what until now she'd felt obliged to deny. Her decline now began in earnest.
For Lee the hardest part of that decline was the almost immediate loss of verbal intimacy. Within two short years Ann would go from confusing similar-sounding words to not communicating at all. Their marriage, like so many strong marriages, had been centered in language. They'd always made a ritual of the evening meal, during which their talk was as nourishing as the food they ate; talk was how they made sense of their time apart. Nothing that happened to them during the day was ever completely real until it was recounted, shared, evaluated. The day's delights, its outrages, its hilarity, its challenges, its significance - all of it was fodder for evening conversation, for the necessary planning of tomorrow. Strategy. Reassurance. Laughter. The language of devotion, of commitment.
Though it was difficult, Lee could bear the fact that Ann could no longer drive or cook or play bridge or contribute much to running the house, but it was beyond dispiriting to realize that he could no longer tell her about his day - the school board meeting that had, despite his best efforts, devolved into an angry shouting match, or the teacher and friend he was going to have to fire, or the secretary at the middle school who had once again arrived at work with a black eye and busted lip, courtesy of her husband. Such revelations now produced in Ann a disproportionate response, often abject terror.
So did smaller annoyances: misplaced objects, a window that wouldn't shut right. Lee had to be careful never to raise his voice, never to allow his concerns, his fears, no matter how real, to register on his face, lest they occasion great distress. Once his confidant in all things, Ann now needed to be told, repeatedly, in word and gesture, that everything was fine, that there was nothing to fear. And so it was that a relationship based on shared truth and trust suddenly became one that relied on well-intentioned, benign lies. Lee's own growing distress, his plummeting spirits, had to remain hidden at all costs.
Even worse than Ann's failures of memory were her brief periods of terrible lucidity. As her condition worsened, she became more confused, frightened, and angry than she'd ever been. Her sudden inability to do things she'd been doing since she was a child was not lost on her, at least not all of the time.
One morning when she was trying to dress herself, Lee saw that she was becoming more and more frustrated, but when he tried to help her, she turned on him in a fury, "Why don't you just shoot me?" An hour later, of course, she didn't remember having said those words, had no memory of the frustration that had occasioned them. But they were words Lee would never forget. That's one of the disease's many cruel ironies - that one person's inability to remember will cause things to happen that are forever etched in the brain of that person's caregiver. No blessed forgetting for him. Not ever.
Where elderly people with dementia suffer a gradual decline, Ann was not elderly and her decline, as predicted, was both steep and terrifying. Within months she was beginning to forget the kinds of things you wouldn't think a human being could forget: what knives and forks are for, how to brush your teeth, the difference between food, which can be eaten, and the plate it rests upon, which cannot, how to swallow the food you've chewed, who the man is who's feeding you, who you, the person doing the chewing, are. And Ann's was not the only identity under attack. "Who am I," Lee often wondered, "if I'm not this woman's husband?"
Lee knew that eventually he would have to put Ann in a nursing home. Though she was no longer really Ann, the body that had once housed Ann's mind, her memory, her spirit, soldiered on and would continue so for years. But knowing that something must be done is not the same as knowing when to do it. You discover it's possible to look into nursing homes and to decide, quite rationally, which will be the best "when the time comes," even as you tell yourself that you would never, ever do that. And even as you tell yourself that a nursing home is not an option, you worry there won't be a space when the time comes to do what you've sworn you'd never do. And then, unexpectedly, you do know. When it arrives it trails even more guilt. The only thing that keeps the guilt at bay, at least a little, is your exhaustion. The truest thing you know is that after all these hours and weeks and months and years, you're simply too tired to continue.
In Lee's case the decision of where to place Ann was made a little easier by the fact that her mother was still alive. She called Lee and begged him to put Ann in the home in Houlton. That way she could visit her daughter every day. Ann's mother was in her eighties now, and visiting Ann regularly in Vassalboro was impossible. Naturally, Lee was conflicted. Houlton was a three-hour drive, and if it meant that Ann's mother could visit her daughter more regularly, it also meant that Lee would be able to do so less often. Worse, there were conflicting symbolisms. If Ann went to Houlton, she'd be placed in the very facility where her father had been admitted during the final stages of his own Alzheimer's, a symmetry almost too cruel to contemplate. On the other hand, what geometric shape is more reassuring than a circle? What would be better than for Ann to end her days where she'd begun them? It was Lee's doctor who urged him to consider another possible benefit. Lee himself was spent, well beyond exhaustion. Placing Ann in Houlton might just save his life.
That was the bottom. It lasted a while but not forever. Despair, like a car thief, had paid him a visit, gained entry, then looked around, glimpsed his host's great reservoir of strength and optimism, and thought to himself, why struggle when the next vehicle was probably unlocked, unprotected, an invitation. This one would be nothing but trouble.
For the next three years Lee visited Ann in Houlton, every other week at first, then once a month. Sometimes one of the kids would go with him, but they all came to the same reluctant understanding - Ann never knew. The visits were known only to the visitors, though, as Lee put it, "She was still there, still mine."
And so it continued until Ann's body finally succumbed, long years after her spirit had fled. Lee and his younger son Maury were there when it happened, saw Ann's features, so long frozen in pain and perplexity, relax in the moment of release, saw the wife and mother they'd known in life returned to them now in death, angelic. The entire family gathered for a memorial service in Houlton, after which Ann's ashes were scattered on Nickerson Lake, a remote and beautiful spot accessible only by boat or on foot, where she'd spent summers as a child. The family has a rustic cottage there, which Lee now tends, spring and fall, one of his myriad responsibilities, at least half of which he's taken on since he retired, since Ann's death.
Perhaps the most important of these new duties is that he's now president of the board of the Hospice Volunteers
of the Waterville Area. Dale Marie Clark, who directs the program and knew both Lee and Ann, recruited him several years ago. He also volunteers with Alzheimer's patients and caregivers. He knows what the latter, especially, are going through.
Part of what makes his story so remarkable, I think, is that at the time he could have used its services, he had no idea that hospice provided such
a wide range of them, including Alzheimer's care and counseling. He freely acknowledges how lucky he was to have four loving children, friends, and a demanding job to help him through his and Ann's long ordeal. But he also knows how close he came to losing everything anyway.
What he needed, though he didn't know it at the time, was to talk to someone who'd gone through what he was experiencing, someone who could say, "Here's something that worked for me," or, "Here's something to watch out for." And, perhaps most importantly, "This happened to me, too. I didn't think I'd live through it, but here I am."
To donate to the hospice volunteers of the Waterville area go to HVWA.org