Daring (54 page)

“How much?” she demanded.

“Two, sometimes three glasses of wine.”

“Every night?”

“Oh, no, not every night,” I lied.

In her utterly precise, clinical voice, Dr. Pat spelled out her prescription: “It's simple. Just pour four ounces of wine into a glass, not one drop more, and have one glass a night, six nights a week, at most.”

“I'll try that!” I said with genuine enthusiasm. Within a few weeks, I was back at the sports bar. I was a late-blooming problem drinker. A shame, really. I missed all the fun years. I'd never gotten to drink margaritas all night and dance on tables and enjoy the delirium of imagining myself to be as devil-may-care as Drew Barrymore and brilliant as Marie Curie—after all, she died lit (albeit by radiation exposure).

In recent years, Clay had warned me more than once that I needed to cut back on drinking. “It will dry out your skin and give you wrinkles and take the sparkle out of your eyes.” If that weren't dire enough, he added, “You'll end up looking like Bill Buckley.” Clay knew how to get to a woman. He pointed to a recent magazine photo of the eighty-year-old bon vivant whose TV debates amused even us liberals with his polysyllabic exuberance. It was a horrid mask of radishy skin and red-rimmed, rheumy eyes.

A year passed before I had another checkup with Dr. Pat. “I filled your four-ounce prescription. It didn't work.”

She picked up the phone and introduced me to her friend Peggy, a veteran of a twelve-step program. Peggy invited me to go to a meeting with her that very night. She met me on the street, a blonde in a cowboy hat who was proud of being on the north side of sixty. Before I had a chance to make excuses, I was being welcomed into the nave of a huge Presbyterian church packed with what I called Uppies—well-dressed urban professionals over thirty—hundreds of them. Who knew that everyone under forty in Manhattan was in recovery?

One after the other people introduced themselves the same way: “Hi, I'm Bev, I'm an alcoholic,” or “Good evening, I'm Rob, I'm an alcoholic.” I couldn't bear the thought of raising my hand and making such an announcement. Peggy sensed my trepidation. She whispered to me: “Just say your first name and ‘I have a desire to stop drinking.'”

“That's enough?”

“That's the only requirement.”

I was fine with that. The speakers came up two by two, a man and a woman, each couple more nauseatingly upbeat than the last. I'd expected downbeat tales of self-loathing. But as I listened, it dawned on me that people were seeing themselves in these stories. Gradually, I began to recognize myself as well. The laughter around me was startling, even uproarious. I found myself laughing. That's what shocked me about this fellowship. These people were high on something. I wanted some of what they had.

At the end of the meeting we all held hands and recited the serenity prayer. It had never been so meaningful. Women huddled around me, the newcomer, and pressed their contact numbers into my hands. Then Peggy took me out for pizza and introduced me to her drink of choice: cranberry juice and seltzer. “Keep coming back,” she said.

I found a meeting closer to my apartment and began showing up every day, as advised. It felt good to start the day at seven by entering a church basement for a spiritual booster shot with a cast of characters I couldn't have made up: opera lovers and moving men, a young dancer and a feisty octogenarian. Gay, straight, black, white, socialite, sybarite, they were all endearing—well, almost all. As we reviewed the steps of the program, I learned that any life run on self-will cannot be a success. Even though my motives might be good, unchecked self-will almost always put me in collision with someone else, even people who were trying to be helpful.

When I had to go to a
Vanity Fair
party, anxious that I wouldn't be able to resist a glass of wine “to take the edge off,” I called my sponsor. She gave me a few simple tools. Stay away from the bar. Ask for Pellegrino with a lime. Eat, talk, go home early if you feel temptation. It worked. When I passed couples sitting in the spring sunshine at an outdoor café and sipping wine, did I feel a surge of envy? Of course. So I'd have a wicked dessert like profiteroles doused in chocolate sauce. When I repeatedly declined to be served a drink, my Irish friends would look at me as if I was suffering from cognitive decline.

“You don't drink?” they would shriek.

“No.”

“At
all
?” they would scold.

Later, I came up with a self-deprecating answer that also happened to be true. “I'm at a stage where I can either drink right or think right. I'd rather do the latter.” I let other people do most of the talking, and they enjoyed hearing themselves talk a lot more than listening to me. The next morning, I actually remembered what we'd talked about! I called my sponsor with this revelation. She had a droll response.

“If the solution works, consider that
you
might have the problem.”

The meetings offered a fellowship that began to feel like a rope bridge across the chasm of living like a widow in rehearsal. I depended on those familiar faces, the smiles of recognition, the outrageous laughter, the agonized sharing. I began to learn humility. These were not losers. These were finders. We were helping one another interpret the steps and find our own way back to equanimity.

I quickly learned that the fellowship was a spiritual program, but not religious. Although the twelve steps often refer to “God,” it is clear that the interpretation is left to the seeker. One's Higher Power is “God as I understand Him.” As I found my way to belief in my Higher Power, I finally acknowledged that I was willful, selfish, and dishonest with myself. My mother had been an alcoholic and I knew that alcoholism was a progressive disease. For most of my adult life, I had been a moderate drinker but always on guard. The long vigil with Clay had shredded my defenses. I was exhausted—physically, mentally, and emotionally.

Giving up my riotous self-will freed so much energy. But only if I kept up my spiritual fitness program. As my sister, Trish, said, “To pray without meditation is like calling up God to tell him your problem and hanging up before you get the answer.” I found the best way for me was to start the day with a prayer and meditation. And when I didn't have the time or inclination to do the good-girl morning routine, I remembered Mike Love's liberation theology: once in a while, you blow a meditation.

“
CLAY SHOULD HAVE BEEN DEAD YEARS AGO,
” his primary doctor told me. Dr. Orsher spoke like an old friend, and he was. “You've given him ten extra years of life. Nobody has gotten the care and attention you have given this man. That's why all the doctors who've worked on Clay have made every effort to keep him alive—because we've seen the devotion between the two of you.”

I was deeply touched. But I still wasn't ready to let Clay go. And he was nowhere near ready to give up. I had written a piece for
Parade
magazine, “Who Cares for the Caregiver?,” and I remembered learning about something called
palliative care
.

Weeks later, Clay was running a high fever and choking on blood in his tracheostomy. His nighttime aide and I managed to clear his throat. But even though I was now paying for twenty-four-hour coverage, I was overwhelmed. That bleak morning—was it winter?—I made a cold call to Mt. Sinai's Palliative Care Center. The director, Dr. Diane Meier, gave me the name of the geriatrician who worked with her, Dr. Sean Morrison. The doctor himself answered. I gave him a capsule history of Clay's condition and told him Clay refused to go to the ER.

“Good,” he said. “Our whole goal is to keep people with chronic illnesses out of the hospital.”

“Is palliative care like, um”—the dreaded word—“hospice?”

“No, hospice is support for dying,” he replied quickly. “Palliative care is support for living with chronic illness and the best quality of life. There is no deadline. And the patient can continue with medical care if it makes him more comfortable.”

“Where do we go, then?”

“I think it's best if I make a house call,” he said.

I almost dropped the phone.

It was another godsend. A surprisingly young man turned up at our apartment, gave me a warm handshake, and went straight into the bedroom. He asked for a footstool and sat at Clay's bedside, intentionally beneath him, to invert the usual doctor-as-God posture. He kept asking Clay what
he
wanted. At first, Clay's speech sounded mushy, schlurpy, like a really bad telephone connection. For an editor who had cultivated the precise speech of the mid-Atlantic man, what could be more humiliating?

With only a few questions, Dr. Morrison was able to construct a clear narrative of how Clay's many victories over cancer had depleted his body's strength and weaponry. He would start him on antibiotics to reduce the inflammation. But more important, he said, he wanted to hear Clay's life story. “What are your goals?”

“
My
goals?” Long pause. Clay spoke up more fully and clearly than he had for the past year. “I want to get back to walking.”

“What are the important things in your quality of life that we need to preserve?”

“Gail.”

“Your wife. What else?”

“Just being able to get out—see the world. I'm a journalist!”

The doctor and I assured Clay we would make that a priority. We talked for a long time about things we could do together that would make his life worth living. Then came the hard questions.

“What about the ability to recognize people and talk with them?”

“I don't know,” Clay said.

“Neither do I,” I interjected. I had to speak up. “Let's say you had a massive stroke. I need to know if you would want to be prolonged in that kind of state.”

Dr. Morrison backed me up. “It helps to know, because then I can guide your wife through decisions like this, rather than putting everything on her shoulders. That's why I'm asking these hard questions.”

Clay and I looked at each other. Honesty was cruel. “I don't know all the answers,” he said. Dr. Morrison suggested we talk about it and then write out our values and our goals for care—“Your wishes in your own words.” As I walked him to the door, the doctor emphasized that we were entering a partnership, the three of us. He would also provide a team, including a nurse practitioner to monitor Clay twice a week, a social worker to walk me through the phases, and possibly a volunteer chaplain. I had to tell him the truth. “I'm willing to do this. But, honestly? I don't know how to walk Clay through the valley of death.”

“Nobody does,” he said. “We'll walk it together.”

MORE AND MORE, EACH DAY,
I thirsted. Not for wine. It was a spiritual thirst, to calm the burning within. I needed to reach for the invisible thread that could connect me with the sacred, the source of wisdom. In some deep recess of my imagination, I could almost see that thread. Sometimes I glimpsed it in nature; only occasionally in church; often, gaily, in the moment of playing make-believe with my grandchildren. Most memorably, I saw it while walking a labyrinth.

On a daylong retreat for caregivers in Oregon, I was encouraged to try using this ancient practice to find the spiritual thread. A labyrinth is the opposite of a maze. A maze is a riddle, with many different misleading paths meant to trick you. A labyrinth is one continuous spiral meant to lead you to the center, where you meditate and seek guidance, and then, perhaps with a recognition or an inspiration, the path will lead you back out into the world.

At first, I felt a sense of shedding. Then a flowing with the other walkers, in a silent shared intimacy. Coming upon abrupt twists and turnings, I thought,
Oh, I recognize this, it's the pattern of caregiving.
Nonlinear. Unpredictable. Sometimes it felt as if I were going backward, moving farther than ever away from the center of understanding. Then, by surprise, I found myself in the center. The mind chatter mostly stopped. I felt a quieting. It was a place of inner knowing. Aware of my shadow self, that scrap pile of unacceptable emotions—infantile fears, self-pity, resentment, rage—I began to pray.

Resurfacing, feeling refreshed, it came to me: the inspiration I had prayed for.
Write about the journey of the family caregiver
. Advocate for them. Caregivers don't take care of themselves. Eventually, I walked around labyrinths enough times to use the experience as a metaphor for the psychological turnings faced by the caregiver. If I could map out those turnings in words and examples, a book might help other pilgrims to make some sense of the journey. I thought of the title:
Passages in Caregiving: Turning Chaos into Confidence
.

Another fear surfaced from a place too terrifying to go. I had not told anyone, had not even articulated it to myself, so fractured was my attention, so numbing my mind chatter.

I was terrified I could no longer write.

DR. MORRISON TOLD ME
what needed to change was myself. “Didn't
Vanity Fair
ask you to cover Hillary Clinton's campaign?”

“Yes, but how could I leave Clay?”

“Gail, who are
you
now?”

The question stunned me.

“You're a different person than when I first met you. You're losing yourself. You won't be Clay's caregiver forever. You're a writer. You must get back to being who you are!”

Just the thought of plugging back into a society that was electrified by a presidential primary contest between the first woman and the first man of color sent a frisson of excitement surging through me. Dr. Morrison called a family meeting at Clay's bedside to ask his blessing. By now, the doctor had outfitted Clay with a simple speaking valve. And our round-the-clock home-care team was solidly established. The doctor had barely articulated his prescription for me before Clay exclaimed emphatically, “Go! You must go! Just call me with the gossip.”