VGV for AIDS Over the weekend of February 6-7, eight Vermonters helped raise over $1,500 ’ for AIDS research by playing volleyball in a Boston based tournament. Vermont was the only team not from the Boston area. Although Vermont's team finished seventh in the seven-team “B” Division, the team reported that it was a worthwhile endeavor, not only helping raise money, but they learned more about playing com- petitive volleyball. Vermont Gay Volleyball has been playing on Sunday evenings in Burlington for well over four years. The group‘s main intent is for gays to gather in a social atmos- phere with little emphasis placed on ath- letic ability and style. Basic rules are fol- lowed but the main focus is comraderie and the opportunity for a little exercise. This past January, in preparation for the Boston tournament, a group from the Sunday night outings started playing on Friday evenings to practice skills and rules. However, after the team’s first match at the tournament it was evident they still had quite a lot to learn to reach the competitive evel Forconfidenfial AIDS Information Call 1-800-882-AIDS March1988 Coming out with AIDS in Vermont by John Rutkowski In September of 1987, Iwas diagnosed with AIDS. My immune system was se- verely suppressed, I was I-IIV-positive, and the virus was affecting my central nervous system. My initial diagnosis was “AIDS- related dementia,” based on problems I had in speaking, memory, and motor coordina- tion. In late October, I developed a cough, shortness of breath and a sudden high spik- ing fever. I was taken to the emergency room, where it was diagnosed as pneu- mocystis carinii pneumonia, a common opportunistic infection. Much of the early period is a total blur to me now. I remember very little of the March on Washington, even though I was there. This “lost month” is not uncommon —— it seems that between the combination of medical problems and the emotional im- pact of diagnosis, a haze develops. By November, the fog was starting to lift. I had begun taking AZT in mid-Oct0- ber, and it had a noticeable impact I began to deal with the reality of having AIDS. In many ways, the haze was the classic “de- nial” stage familiar to anyone who has ever read Kubler-Ross’s work. When what was happening began to hit me, my entire life became centered on AIDS. I read everything I could, I talked to everyone about it. It was like coming out all over again. Despite my fears of negative reactions I have been fortunate. Family and friends have all been positive and supportive, and no one has turned away from me because of the diagnosis. I considered going into an experimental treatment protocol at the National Institute of Health, but became frustrated with the delays and the insensi- tivity they displayed towards me sot I de- cided to stay in Vermont for treatment. I also had to face the realization that I was no longer capable of working, and began to deal with the social services bu- reaucracy. Although I applied in October, my first social security disability check did not arrive until February, and I am still waiting for my SSI checks and my Medi- caid card (there is supposed to be a waiting period of less than 60 days for these). Dur- ing that period, I had no income, and de- pended on loans from family and friends to get me through. For someone who had always been notoriously independent, it was a disheartening turn of events. I now must take AZT every four hours, getting up in the middle of the night and remembering to take it during the day (a task now made easier with the help of a beeping timer my mother gave me for Christmas). I mustalso accept my physical limitations. I walk slower than before (friends joke that I am like the traditional “Chinese wife,” always ten paces behind). I tire more easily, and need to nap in the afternoon if I want to stay awake at night. I jokingly tell people who ask what I do for a living that I'm retired (at age 28). My speech is noticeably affected; I am unable to get a sentence out without stam- mering or slum'ng my words. At times I need help opening a bottle of pills or but- toning a shirt. My handwriting is pratically illegible. All of this is very painful. I am determined to take power over AIDS, andl am convinced the only way to do this is by becoming a full, active and in- formed partner in my own health care, not a passive patient who mindlessly follows orders. I am exploring treatment options, following new drugs and therapies in both the general and the technical press. I may start taking AL-721 in addition to AZT. It is promising and as a natural food product, it has no toxicity. I have decided that it is important to be publicly vocal, to be willing to say publicly that “I am a Vermonter who has AIDS.” Vermont has looked at AIDS as somebody else’s problem. I want to help give AIDS in Vermont a human face, to make Vermon- ters understand that AIDS is here, that we must deal with it. That’s why I decided in the fall to become the People With AIDS (PWA) rep- resentative on the Vermont CARES board. That’s why, slowly, I’ve been stepping out (Continued on page 9) C.A.R.E.S. Plans VT AIDS Conference Vennont C.A.R.E.S., will sponsor a three day conference. “The Vermont ‘Re- sponse to AIDS,” April 15,16, and 17, in Plainfield, Vermont. The conference will feature a series of workshops, support groups, entertainment, and otherevents at Goddard College. Over- night accomodations and meals will be included in the conference. The conference will culminate with the Vermont C.A.R.E.S. armual meeting, where new officers and board members will be elected for the next year. More details will be available in late March. People with ideas for particular workshops or questions about the confer- ence are encouraged to contact Vermont C.A.R.E.S. at 863-2437.