To have without holding:

memories of life with a person with AIDS

(The following address was delivered at the AIDS Memorial on May 30, 1988. It is part of a work-in-progress. A longer version of this address has appeared in "Facing AIDS: A Special Issue," Radical America, 20:6 (1987).

My lover's name was Paul Di Angelo. He was diagnosed with AIDS in march of 1983, and died seven months later in October. During those seven months, AIDS fundamentally restructured the rhythms and routines of our life together. Daily life became ordered by the demands of health care: the trips to health center and social service agencies in March, April and May; the daily visits to the hospital in June, July and August; the scheduling of Buddies and friends while I was at work, the routines of home health care and housework in September and October. Within those rhythms and routines, Paul and I worked to carve out a time for us alone; a time to recount and share the events of the day, to weigh the possibilities and probabilities of illness and recovery; a time to maintain and sustain a life, and gradually to create a death, of our own.

Although neither Paul nor I realized it in March, his illness turned in a slow process of dying. My memories of those seven months are marked by the milestones in Paul's illness: the flu that wouldn't go away in February; the diagnoses of cancer and pneumonia in March; the fatigue and diarrhea in April; his hospital admission in May; the discovery of an intestinal parasite that left his body unable to absorb nutrition and the consequent IV feeding in June; the spreading cancer and recurrent pneumonia in July; the surgery to implant a Hickman line in his chest in August; his return to our home later that month; the steady decline in weight and strength and the hallucinations in September; his death in October. That simple fact -Paul's death colors all my memories of those final seven months. I would like to talk briefly about how his eventual death came to shape our existence; how we came to accept and transform

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his increasing physical dependency into a giving interdependence; and how I learned to help Paul die his own death, and thus to share his death and to carry that experience with me as a living

person.

As Paul became imprisoned within his weakened and inefficient body, so I became imprisoned within his illness and dependent upon the help of others. During the first months and throughout his three-month stay in the hospital, I tried to manage things by myself. I realize that my initial reluctance to delegate tasks was partly a failure of trust in others, and partly an unwillingness to lose some of the control I thought I could retain over the situation as a whole by manging the minutiae of our daily lives. But it became literally impossible to continue doing it all. Indeed, my initial stubborn refusal to give up some of my

responsibilities (and imagined power?) left me at times feeling frustrated and resentful: frustrated with the tasks that left no opportunity just to spend time, resentful of the time Paul spent with others, resentful of being "taken for granted". To need help from others and to learn to accept help without false pride--these were part of my experience of Paul's illness.

Ironically, I learned that dependence did not lessen my participation in his life or his death. We retained that special kind of communication, the trust, that developed over six years of living together. There was a special kind of reliance, of letting go, that Paul shared with me. With others he would try to remain self-reliant, to struggle his way out of bed into the bathroom event that took place twenty times a day. With me, he would let himself be lifted and carried, to have his food cut up and be fed, to be washed. With me he would explore the conflicting emotions raised by his increasing physical dependence. We were able to share these things because friends and Buddies gave us the time and opportunities to do so. During those final weeks at home I learned that

accepting help openly, honestly, graciously, was simply acceptance of our common limitations as human beings; simply the acknowledgement of our common, mortal frailties; and the transcendance of them through acts of unattached and unadorned kindness. Paul's illness taught me the kindness of strangers

As there was kindness, there was also cruelty. Nothing made me so angry as what I viewed as our rejection by others: the fleeting concern of some friends who visited at first and then disappeared; the empty curiosity of some acquaintances; the frightened turning away by friends from whom I expected more. In retrospect, I understand these actions. I realize that Paul and I, simply by our existence, were forcing each person to define his or her own attitude toward Ideath. This is a tremendous burden to place on people. For some friends it was simply too painful to stay through those final weeks. But neither Paul nor I had strength for tolerance; we had to face our fears and get beyond them. At the time I felt abandoned and bitter, feelings I hoarded to mobilize by physical and emotional resources. retrospect, I realize that I was making these people scapegoats for my own despair. And despair was something I had to learn to live with.

During those final months of his illness, I struggled to help Paul die his own death. That required my separating myself from him, separating and acknowledging my survivor-needs, my guilt about his contraction of AIDS, my guilt about the ravaged condition of his body and my good health, my guilty feelings about sex, my need to understand my feelings about his death--separating my needs from his needs. His need was to live as fully as his body would permit. Even during those terrible last weeks, Paul retained the vitality and energy to build new relationships, to project himself as a person in relation to another, to give of himself through interdependence. When I recognized his need to live his own death, then I was able to let go and share his death with him.

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Although it may at first sound strange, the closest model with which to compare my experience during those seven months of life with Paul is the experience of mothering. (My mnother brought this home to me when she said, after being told of Paul's death, "The hardest thing in the world to bear is the death of a child or a mate.") Whether performed by women or by men, mothering involves the intimate physical care of another being, the provision of unconditional care and love, the subordination of self to others, and an investment in separation. As Paul's condition worsened and his body became hypersensitized to pain, caretaking tasks became my gestures of love. An arm draped lightly over his chest while he slept created too much pressure, so we learned to sleep together without touching. A hug caused pain, not pleasure, so we restricted ourselves to his resting his hand over mine, or my lightly caressing his cheek with my forefinger. As his body became bloated from inactivity, his speech slurred from medication, his talking painful because breathing was painful, learned to communicate love through a glance. As our ability to use touch to express love narrowed, my consciousness of the love infusing acts of physical care was heightened.

Many of my memories of those seven months are visceral: memories of the body associated with the touch of intimate physical care. Shampooing his hair, washing his back, and shaving his face at the hospital. At home, changing the bandages on the Hickman line in his chest, moving him on the bed, carrying him out of bed and into the bathroom, cleaning and when changing him he became incontinent, feeding him. Watching the gay man carry his lover upstairs in Lanford Wilson's Fifth of July triggers a somatic response in me that is inadequately described in words. It is a response grounded in the memories of physical care: memories of watching his capacities for self-reliance regress to those of a year-old child; memories of life with a vibrant young mind trapped in the body of a feeble old man. Α response rooting in my learning to accept his death, learning to thwart the reflexes of grab and of clutch, learning to love and let go, learning to have and not to hold.

These are Paul's legacy to me in 1988. Through Paul's willingness to draw me into his illness, he taught me to face death. And by facing and becoming part of his death as fearlessly and feelingly as I could, I confronted the limits and mortality of my own existence. That sense of mortality has become a part of me. Like wearing a ring, I have grown used to it, and I'll never forget it. Beyond language, my body will remember it. I will never forget it because I don't want to forget.

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