by Merle Hoffman
I am overhearing a phone conversation – the tone of the speaker is intimate – concerned – loving parental… long complicated words are being spelled out – RETINITIS – CHEMOTHERAPY – LYMPHADEN0PATHY – repeated again and again.
The voice on the other side of the phone was BOBBY’S – and he had missed his appointment “Is your lover with you now – does he know you will probably have to be going into the hospital?” The question is asked gently but firmly. The speaker is a nurse practitioner named Gary. His bright red curly hair, plaid shirt, glasses and jeans place him just about anywhere. His name tag and stethoscope around his neck – the phone at his ear – the place I am standing in – place him on ward 86 at San Francisco General Hospital – the Oncology Unit – The AIDS Ward.
I knew I wanted to go to San Francisco General a year ago – AIDS had been in the papers. The issue was argued politically, medically and philosophically. Susan Sontag used it as a focus of social critique. Illness as a metaphor – it had shades of the medieval black plague – it was controversial – dangerous – and it was profound.
The profundity touched me one morning when I was dressing and listening to the radio. It was an interview with a Shanti counselor on the AIDS ward. She was saying something extraordinary – something that made me pause in my daily ritual – something about the fact that working with AIDS patients made her realize that if she would choose her own death – she would want to know she was dying – for one year, she would want to experience the clarity, the restructuring of priorities – the immediate’ placement of things important and not so important that she had been witness to by working with some of her AIDS patients.
And then of course there was the sexuality issue – the fact that a large majority of the AIDS patients were male homosexuals – an easy target for the right wing ideologues – Falwell’s proof that God was punishing our society for its decadence. Not only was abortion a blight visited on the sinner but now the Deity had something even worse in the offing – The “GAY PLAGUE.”
And then there was Calvin – my hairdresser. The strangeness had gone on for about a year – I would be called and told that he could not make appointments or would have to be late. He started to look thinner and thinner. I would question him – he just said he wasn’t feeling well – some stomach problems or something. Then one day as 1 was sitting in his chair, while he went through his programmatic cosmetic rituals – I looked up into the mirror and caught his eye – and again asked him what was wrong – He didn’t answer verbally – but he answered – 1 knew at that moment that he had AIDS and I also knew that he was dying.
Gary put the phone down – he had been on it for almost 15 minutes – “You know that was Bobby – he’s incredible – 30 years old – AND HE HAS FOUR FATAL ILLNESSES – any one of which can kill him but he’s still going strong. He’ll have to come into the hospital for about a week this time.” I looked at Gary – down the hall which could have been any ward of any hospital anywhere in this country – but it was different. I had felt the anticipation when I got into the taxi at Berkeley. It was about an hour’s ride through the Bay area over the Bridge into the City. The driver left me off at the front entrance of the hospital.
“Where is ward 86?” The attendant smiled broadly. “You know you’re about the 50th person that asked me today – but I’ll do it one more time.” So he gave me directions – I had to go through the gates marked Family Planning Clinic – an immediate connection for me – then into the elevator – press “86” The doors opened onto more conversation. TWo men seated at phone desks – similar medical words – phrases “no – you can’t catch it by being in the same room – yes we do have community support systems” – intense, involved, caring.
They were expecting me. Yes they would let Dr. Kaplan know that I was here. I sat down in front of them – In a strange way I felt comfortable – safe – that I could trust these people.
Dr. Kaplan came out to greet me. I was referred to him through a contact in New York – he would be my guide – my connection to the world on 86.
We started in his office – a small partitioned cubicle. He told me about his work – how being an oncologist got him used to his patients dying – sort of. How the research didn’t have the answers – yet – how much the medical staff depended on the support systems generated by the gay community and the City of San Francisco – how on some days it was horrible – when they had about 60 patients in the last stages of the disease coming in weekly for treatment – how he had to deal with the depression – the rage – the incredible unbelievable reality of 30-year-old men dying –
I asked him about medication – anti-depressants. They didn’t use them. After all. the reality was that they did have a fatal illness (50 percent of patients diagnosed with AIDS are terminal) – what could drugs do for that? I asked about his own depression. He said it was difficult.
For Gary, dealing with the dying AIDS patients helped him cope with his own anxiety about getting AIDS. He felt that if in fact he was ever diagnosed with AIDS he could deal with it easier because he was involved in helping others do the same. Maybe.
Then there was his bike and the hills of San Francisco – that was his therapy – the rides alone in the hills when there was one phone call too many – one Bobby too many –
Kaplan asked me whether I wanted to go into the in-patient area – the place where the final stages of this deadly drama get played out.
I wanted to see it – to be there, so we walked through the green hospital corridors together until we reached the area –
There were only 12 beds – outside of each room a bright pink poster entitled INFECTION PRECAUTIONS, listed directions for staff dealing with the patients – a check off system.
MASK GOWN GLOVES PUNCTURE PROOF NEEDLE BOX IN ROOM NO PREGNANT WOMEN – and then there was the room with the handwritten sign outside that read NO FLOWERS
No flowers – it was then I felt I wanted to cry.
The literature rack told volumes. Brochures such as “Coping with AIDS’! “Getting Your Affairs in Order”, “A Bridge of Love and Affirmation”, “When A Friend Has AIDS”, “Affection Not Rejection” – spoke to the love and support of the staff for these patients.
All of the workers on this ward were volunteers, and most of them were gay. I asked whether their being gay was the primary reason for their wanting to work on this ward? “Not the only reason – but it’s important.” The issue of this disease – AIDS – had galvanized the gay community – had created networks of ancillary support systems that reached out to the established medical community – surrounded it and supported and changed the conventional avenues of medical treatment.
A visual flash – the end of a bed – a thin almost skeletal leg sticking out of the white bed sheets – spasmodically twitching – the door partly open – someone sitting at the bedside –
And then I felt the rage – one lives one life making choices that challenge the established order, struggling to self-actualize, to break free of barriers that don’t fit –
Loving and touching and experiencing – planning futures – paying bills – living in and out of the societal norms – and one morning just like any other morning, coffee, a cigarette – the daily rituals that give comfortable habitual structure minor anchors. Then one morning your throat hurts – or you realize that you’ve been tired too long – or there’s the feeling that the gland in your neck is swollen. One morning/afternoon – or anytime – your world radically changes. And there is no reason. And yet there is.
Gary told me that his experience of working with dying patients showed him that “angry people die angry and actualized people grow more”.
As if AIDS were an enormous challenge – facing death – learning to cope – to reach the acceptance level was something that not all attained.
Gary’s rage would come at a strange time. It would come when one of his patients finally came to the point of acceptance – and would tell him “I’m ready – I’m not fighting anymore”. It was then that Gary would take to his bike – take to the hills – As if their acceptance was his failure –
And I thought of my beginnings at CHOICES. In the early ’70s when abortion had not been legalized nationally but was legal in New York. When there was still all the shame, guilt, fear and stigma. How the community of women reached out – how they referred, educated, counseled and supported the women – and how the medical community let them do it –
In the case of AIDS where medical technology has not been able to develop a definitive test to diagnose or cure the disease – physicians so used to playing God with all the answers have to face the reality of limited answers – here also, the medical community out of necessity has stepped aside for love – for the community of caring and another definition of healing. A modality that should ideally be utilized in all medical care, not only for the issues that trouble or frighten us.
We came back to the outpatient ward. Kaplan was called to the phone – more instructions – more bad news to give.
A patient passed by supported by a staff member – thin, walking haltingly – and I knew that I was there for a moment in time that would be repeated again and again.
I didn’t disturb Kaplan – the connecting line was too important. I touched his shoulder as I left feeling specialness of these people.
Calvin died last week. He died in San Francisco.
Was he accepting – or was it more of the “do not go gently into that good night; Rage against the dying of the light…”
Did Calvin remember my caring?
The only thing I can think of now is that I hope wherever he was that they let him have flowers.
Merle Hoffman is publisher/editor-in-chief of On The Issues magazine and founder/president of both Choices Women’s Medical Center, Inc., and Choices Mental Health Center.