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Twas the Night Before Solstice
Praise and
Challenge:
A Vermont Story
by Lynn Martin
On September 29, 2005, a national organization called Experience Works, Prime Time Awards honored me for being 70 years old and still working. Each year they honor someone from each state. I was chosen to represent Vermont. The award included an all-expense-paid week in Washington, D.C.
The final awards dinner was in the Ronald Reagan Building and International Trade Center. In presenting me with the award, the words AIDS, substance use and syringe exchange were said aloud. Remembering the deliberate neglect Ronald exhibited toward AIDS during his entire administration, and that, today, the Bush administration chokes on the phrase 'syringe exchange,' I felt triumphant. It also brought back memories of 15 years working in the epidemic. Here are some highlights:
Good morning Mr. Otis, I say aloud, my morning incantation to insure I arrive safely on the fourth floor. You would understand why if you could see the elevator. No bigger than the average closet with brass metal doors that crash shut the minute you touch a button. Only one button though. It can only recognize one request at a time. It was originally run by a gravity-fed water system.
It begins with participating in a Walk For Life fundraiser. On the Walk, images of my three twenty-plus-year-old children now loose in the world accompany me. Would they know the sexual/drug using history of a prospective relationship? Probably not. And so the epidemic became personal. It was about me and mine. It was about friends, relatives and my community. I volunteered at the next meeting held by the AIDS Project to put together a library for those infected and affected by the virus. That's all it took to give away the next fifteen years of my life. Fifteen years of incredible learning and mind altering experiences.
It begins with a budget of under $4000. Today, in 2005, the budget is somewhere around $450,000 a year. It begins with a group of people who were determined services would be available for those infected with HIV. This tiny group of people were successful in building an AIDS Service Organization that helped individuals find medical, psychological and social services. It helped individuals find housing, food, transportation to appointments: the vital connections to others that lessened the isolation and helped reduce fear. It educated a community on the needs of HIV-positive people. It educated schools on the needs of HIV-positive children. It educated hundreds of volunteers that provided services not only in the community, but all over the world as young college students took the knowledge with them in their travels.
The office is on the fourth floor of the Italian American Building. It consists of four rooms. Outside the windows of the Director flows the Connecticut River. The view is spectacular. The entire staff agreed that one window would remain deskless so anyone needing to just look could do so. Early in our residency, we had two babies who came with their mothers to work. No babies have ever been held by so many for so long. One of the best ways to cope with frustration was to hold a baby.
And there has been and will always be frustration. Burn-out is an ever present danger, one that was never talked about enough. In the 80s it was death. Many of our first clients died soon after we got to know them. Young, creative, beautiful people dying before their parents, before their time.
Remember my name, they all ask. R would sit with me before a class. He was about to tell his story. He did this over and over, because he told me, he didn't want anyone else to become HIV-positive. He would tell the young people about his use of alcohol, and how it had caused him to ignore safer sex and take risks he would never have taken while sober. He did not talk of being gay.
R was Catholic and carried guilt like a cross. We met one bitter December day in a church basement with an ecumenical pastors' group. One of the clergy there was a Catholic priest. R told his story. He ended by hanging his head and saying he had betrayed his church. Oh no, said the priest, with tears in his eyes, the Church has betrayed you. This same priest gave the sermon at the funeral service for R speaking words of praise for R's courage. I only hope R was listening.
These stories are the fabric of every day's work. The phones ring. Volunteers wander in and out and do everything from fundraising to folding, stamping and mailing letters. Clients come in to meet with the case manager, pick up food, gas cards, use the telephone. They can be silent and solitary or gregarious and full of laughter. It is never still. A staff person can be talking to a panicked caller who may or may not have been exposed to HIV. They can be trying to find a dentist who will accept someone without insurance.
Death hovers, is stared down, and retreats into the wings. But it is always there. Even today, with all the medications, clients die. But mostly they struggle with a day focused on medications and appointments.
M kept his hopes up by always being engaged in some scheme. He loved cars. He actually managed to find ways to fund one or two of them, and he could be seen driving up the Main Street waving casually at everyone like some town official.
He was exasperating and as lovable as a teddy bear. M was killed in a car crash. He was alone, returning from looking at yet another and better car. Every time the outer door to the office door opens, we all still look up expecting to see M standing there demanding our full attention.
And then there are the stories of the caregivers: a story of commitment, faith, and love.
The epidemic takes its toll on workers also. A day can be a roller-coaster of emotion. Staff are faced daily with their own mortality, their own "There but for the grace of god go I." Support from within is crucial. Recognizing signs of burn-out and stepping in to help is an everyday occurrence. A staff person can achieve miracles of programming in both direct services and prevention, only to fall to funding cuts and a failure in imagination in the very place he works.
It is now 2005. The HIV virus was identified in 1982. AIDS is rarely front-page news nowadays. Yet people are still getting infected in the United States at the rate of 40,000 each year. And, yes, people are still dying. Despite drug miracles and miracles of support and connection, HIV isolates and frightens. Yes, we need to do more testing to identify those who are HIV-positive. But it is what happens once someone is diagnosed positive that determines what kind of nation we are.
The bigger questions are still with us, the same questions that were there in the beginning. Will it be prejudice or understanding? Will it be judgment or love? Will the help continue to be there when needed no matter who needs it, and no matter where they live? Who will see that understanding, love and need will be met except you?
Lynn Martin is a published poet and a former AIDS prevention worker at the AIDS Project of Southern Vermont in Brattleboro.