Main Squeeze Blues
Phyllis was my soul mate — a smart, sexy, vital woman who organized our lives and those of other people too. A brutal but mercifully short bout with cancer may have taken her from me, but I’ll always have the wonderful memories of our thirty years together. And I know I’ll be seeing her again.
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When we came home to Austin in January 1982, broke but happy, I joined the staff of Texas Monthly and Phyllis started her highly successful career in real estate. Over the next twentysomething years she worked with a procession of companies: Eden Box and Company, West End Properties, and finally AvenueOne, where she served on the board. She was also on the board of the Austin Public Library Foundation, which gave her enormous satisfaction (and gave the foundation someone who could organize, create, and outwork a dozen her size). Almost every year—usually in the fall, when we celebrated our anniversary and her birthday—we took fantastic trips: to New York to hear our favorite opera, La Bohème; to Boston and Martha’s Vineyard; to San Francisco to celebrate my fiftieth birthday; to Chicago for a rendezvous with Phyllis’s old friend Sherry “Bad Bunny” Broder; to Mexico and Canada and especially to Europe. Taped inside the door of Phyllis’ small home office is a list of our ten European trips, dating back to a tour of Germany, Paris, and London in October 1987. Our final trip was last November, just after Phyllis’ sixty-fifth birthday, when we went with Doatsy and other friends to Paris and Amsterdam. With each trip we fell more passionately in love and grew more attuned to and appreciative of the rare gift that God had given us.
In the late eighties, Willie Nelson helped Bud and me sell an old screenplay to CBS. Phyllis and I used our share of the money to buy a lot in the Judges’ Hill neighborhood of Austin, just west of downtown, and to build our home, which Phyllis designed and decorated with her unmistakable eclectic style. A year later CBS filmed a sequel, and this time we spent the money on finishing out our patio and landscaping the yard.
WHEN YOU’VE LIVED LIFE TO THE MAX, dying seems especially slow and clumsy and mean. I prayed a lot during those months, prayed for a miracle I knew God wasn’t disposed to honor. I funneled a lot of my bitterness and rage in God’s direction. Watching her suffer was the hardest thing I’ve ever done, but it would have been infinitely harder without the angels of Hospice Austin.
Starting in late April, a team of professionals came to our home, headed up by our assigned nurse, Barbara Winchell. Barbara or one of the staff nurses was available 24 hours a day. “Our job is to keep her alert and as free from pain as possible,” Barbara told me, and that’s what she did. She had directed the hospice staff to stock our bedroom with oxygen equipment, a hospital bed with adjustable rails, a wheelchair, and a walker. Anything Phyllis asked for Barbara found. She visited us weekly, or more often if we needed her, making certain that Phyllis was comfortable, that our family was okay, and that we had an abundant supply of all the meds we needed. My instinct was to overmedicate, but Barbara made sure I knew when and how to use each medication in our kit. The most important thing she did was listen to Phyllis and talk to her, letting all of us know that we were not alone in this. Knowing what to expect in a normal dying process helps alleviate some of the fear; we came to understand that these final weeks were a celebration of what Phyllis’s entire life had meant.
I had gotten a glimpse of the hospice experience when my mom died some years ago, but this was the first time I understood what hospices are really about: They’re about helping families deal with death. Patients who have an incurable disease and six months or less to live are eligible for hospice home care, which is usually paid for by private insurance or Medicare. Ability to pay is not a consideration at Hospice Austin, one of only two nonprofit hospices in Central Texas. The hospice depends on donations from individuals, corporations, and foundations, as well as a group of about four hundred volunteers who augment the two hundred on the professional staff. Each patient is assigned a team of caregivers that includes a registered nurse, a nurse’s aide, a social worker, a chaplain, and a volunteer.
Over the years Phyllis’s boundless generosity and infectious good humor had helped or supported or made life easier for countless people, and now they overwhelmed us with love and best wishes and offers of help. Dozens of cards and letters arrived daily. Phyllis read every one, some of them several times, and made meticulous lists of people she needed to write and thank. One letter in particular caught my eye: Phyllis read it eight or ten times, crying her way through every reading. It was from a former Austin hospice nurse whom Phyllis had befriended several years earlier. Her name is Lorri Hatfield, and she lives in North Carolina now, but three or four years ago Phyllis sold Lorri and her husband a home near Austin. As I discovered later, Lorri suffers from bipolar disorder, that manic-depressive netherworld where all things are dark and fearsome and where sufferers are forever alone. A year or two after the home purchase, Lorri was hospitalized, divorced, and friendless. Phyllis, of course, adopted her on the spot. I didn’t understand the significance of their friendship or its depth until I read the letter.
It said, in part: “When my life was hanging by a thread, my illness raging, you never once passed judgment or met me with anything but genuine compassion and respect. You listened to me through the darkness and the light … loved me when I could not love myself … [gave] me courage and support in the midst of so much uncertainty … Thank you for every visit to the hospital, every cup of coffee, every letter and phone call … every smile and laugh that we shared, every hug. Thank you for believing in me …”
As Phyllis’s disease took control, there were mostly bad days, but there were some good days too. One of the best was a Saturday when Michelle and her colleagues from AvenueOne showed up at our house with a pickup load of plants, dirt, paving stones, and crushed granite. Phyllis took great pleasure in a semiannual ritual in which she redid the landscape of our backyard, but her illness made the chore impossible now. Michelle and the others came to do it for her. Over the next twelve hours they transformed patches of weeds and hard-packed dirt into a magical open space of flowers, leafy things, casual boulders, stone pathways, and terraced beds—a job that would have cost thousands of dollars if professionals had done it. It was a gift of astonishing generosity and love.
WHEN THERE IS A MEDICAL CRISIS that can’t be handled with home care, Hospice Austin sends patients to Christopher House. Phyllis went to Christopher House two times but came home only once. The first was June 5, following a frightening period in which she had hardly touched her food, slept eighteen or twenty hours a day, and was often incoherent. I thought that was the end, but Barbara realized that the problem was simply my heavy hand with the medication. Barbara called and arranged for Phyllis to be admitted to Christopher House. We were assigned to Room 8, just down the hall from the Willie Nelson suite.
More like a resort than a hospital, Christopher House is peacefully tucked away on a wooded lot in East Austin, in a one-story building surrounded by shaded pathways and a lush garden with chirping birds, a gazebo, and a bubbling fountain. Fifteen large, private rooms are spread along a hallway, each equipped with a TV, VCR, refrigerator, microwave, lounge chair, and couch that folds out into a bed. That’s where I slept the next two nights. The rooms seem open and friendly, partly because each has a rear entrance too, a door leading to a small patio and on out to the garden. This is a handy arrangement when families bring pets for a visit, which the hospice not only allows but encourages. “Pets are part of the family, part of the therapy,” explained Lorraine Maslin, a nurse with a thick Scottish accent and a strong, almost saintly demeanor.
Watching Lorraine and the staff over the next two days, the smooth and seemingly tireless way they attended to the physical and emotional needs of not just the patients but their families, I realized that hospice doctors and nurses are a different breed, one that is not easily understood or explained. Theirs is a labor of love that redefines heroism, a job that goes mostly unseen except by their colleagues and those they assist but one that carries its own special nobility. Day after day, week after week, they work with pain and suffering and death—always death—in a grim atmosphere of fear and hopelessness. And yet they seemed among the happiest group I’d ever seen. “This is a happy place where sad things happen,” Lorraine told me. It was apparent that the doctors and nurses were very supportive of one another. They held regular “de-stressing” sessions in which they talked about things that had been most difficult. “When the well runs dry, you have to be very resourceful,” says Mary Stephenson, a longtime friend who is the director of Hospice Austin’s volunteer services. “Each of us has her own way: family, religion, art, music, whatever works.”
My Library
