Joe's POZ Blog

2005 marks the 21st year of my HIV infection and I though that some remembrance might be in order, because I surely would not be here today, if it were not for so many incredible people from years past. I have faced many challenges during my journey with HIV, but I never felt that I was traveling alone. I was fortunate in that I was taught early, to use all the tools at my disposal and to think outside of the box when necessary, to deal with my challenges. And the greatest of those tools were the people and sense of community that I was so fortunate to be a part of, days after my testing positive in March of 1985. I was part of the first wave of AIDS Service Organizations (ASOs) and I remain living proof of the value of community and peer support when dealing with a catastrophic illness.

My journey started in Detroit, Michigan when I received a letter from the Red Cross advising me of a problem with my latest blood donation. It instructed me to contact their main office and make an appointment with one of their nurses. Upon my arrival, I am met by a Nurse Ratchet type who coldly informs me that I have tested positive for the HIV virus and she hands me a card for the infectious disease clinic at a nearby hospital, suggests I make an appointment there and then shows me the door. As we move toward the door, she stops just long enough to make sure that I understand that I am never to donate blood again and with no further comment, I find myself out on the street. That is what passed for HIV counseling in Detroit in 1985.

My life as I had known it, came to a very abrupt halt. I was divorced, with an infant daughter and I had become HIV positive. I won't go into any detail here as the story of my becoming positive is best saved for another time. What mattered was the journey to finding the support I needed. Fortunately that help was closer than I realized and so I made my first appointment with the Infectious Disease clinic at Henry Ford Hospital, because one must always start somewhere.

Henry Ford Hospital was a behemoth hospital, with a clinic for almost everything and was built through the generous donations of the Ford Motor Company family. It had two floors that housed the AIDS patients that came for its care, clinical trials and for too many, a place to die. The staff was top-notch, caring beyond reason and being surrounded by so much illness and death, they were often crazy as loons. They promoted a sense of family and their care encompassed everything you could need, especially for those of us who were newly infected.

My first appointment was the longest day of my life. The endless questions, the poking and prodding, the seemingly dozens of vials of blood drawn for testing, the reassurances and for the first time, a feeling that while my life had changed, it just might continue. The ID clinic prided itself on coordinating your care whether within or external to the hospital. They were the ones who referred me to a small AIDS Service Organization (ASO) called FRIENDS Alliance, where I would find an unparalleled sense of belonging and an incredible community of positive people.

FRIENDS Alliance was a grass root, membership-driven organization that was run by the members, for the members. We identified our own needs and then found ways to address those needs. It was where I attended my first support group, began addressing my new status and ultimately made some of the best friends of my life. Because the organization was self-governed, your needs were easily met, because somebody was always in the same place that you were in this journey. While support groups can be initially very intimidating, the ones at FRIENDS were just like meeting with old friends. Nobody cared how you got HIV, all that mattered was you were infected and the group only sought to help you address your needs.

The support radiated from our location in an old Catholic grade school in a desolate section of downtown Detroit. Since our members dictated our services we covered everything from case management to maintaining a clothes closet and prescription drug closet. We had hundreds of members, which was depressing, because it seemed that the infections would never end. But no matter what travesty would befall any of our members; there was always that sense of community.

That sense of community could be felt in the monthly potluck dinners, the Holiday feasts, the support groups, or just by sitting in the living room and talking with members who would float in throughout the day. The sense of community seemed to permeate the building, but the greatest power of that community was in how we looked out for each other, how we cared about members who had long been forgotten by their friends and families. We became their family and in doing so it forged bonds that remain, even today. And we needed those bonds because the state of HIV/AIDS in the mid-80s could only be described as bleak and that was on a good day.

This was a time when there were no medications to treat HIV and your medical treatment was often as big a surprise to your doctor as it was to you. We spent our time comparing notes and trying to keep everyone alive, even as opportunistic infections were killing our members in alarming numbers. A time when there were lines for clinical trials, because at least you might get access to SOMETHING that might prolong your life. A time where often all you could offer each other was a shoulder to cry on or being there as the life left yet another afflicted by AIDS. It was a time when being HIV positive was anything but OK and it was a time that will be forever seared into my being.

It was a time when we maintained an alert list of people in the hospital that seemed to expand exponentially. Where hospital visits included full gowning and precautions because your presence was a threat to patients that had no immune function left. Where you took friends to visit friends, who had lost their sight, or teeth or became horribly disfigured from KS lesions or a myriad of other untreatable conditions, from a disease that we did not understand. A time when the average time on the alert list was three days, because usually after then, the member would have died.

It was a time when funeral homes not only refused to embalm AIDS victims, but to allow there to even be a wake for the deceased. It was evident that their fear was equally split between the living pos people who would attend said wake and the deceased. A time when there were too few churches that allowed AIDS services, so we would hold multiple wakes at a single service. A time where the AIDS vigil at each holiday season, would become almost too much to bear, because each year we would read the list of those who had departed and each year that list would seem to be endless. A time when you finally stopped hearing the names, as they were read, because you were just too numb from the horrific losses, losses that you were powerless to prevent.

It was a time when positive people were vilified by everyone from their family and friends, to their churches and most of society as a whole. You were less than human, something to be feared and reviled and that was further reflected by the inactivity of our own government in committing resources that might have made a difference. We were on our own, but even with the limited resources we had, we did a damn fine job. So many of those people were such testaments to personal fortitude that I consider myself very fortunate to have known them and honored to call many of them my friends.

We made sure that nobody went without care, even if it was at his or her home and that nobody ever died alone. For many of us, we were all that we had and as such, we valued each and every one of our members for the precious beings that each one represented. Yes we bickered and fought and tempers would flare, but we had to direct our anger and frustration somewhere and who better to understand than our fellow members. Eventually we redirected that anger and frustration and joined the AIDS activists, who had just begun to make their voices heard locally. We came to the sorry realization that the only ones who cared about positive people were other positive people and their supporters. If we were going to survive until more was known about HIV/AIDS, we had to secure the resources to do so. We had to secure funding to keep FRIENDS Alliance alive to maintain our circle of care.

So we developed the skills and networks to secure funding. It was a long and hard road but eventually a steady stream of funds was found and I am happy to report that FRIENDS Alliance still operates in the Detroit area and even has a few of the original members. But reality has been very unkind to the vast majority of FRIENDS Alliance members, because most of them have long since departed this earth. And with those departures, went that special community that could only have arisen through the pain and frustration of those early years.

I will never be able to describe for you, the immense loss of so many souls, because I knew too many of them to even begin to count. To stand by and watch helplessly as so many of your friends slipped their earthly bonds, only to leave another hole in your heart. But no matter how dark it appeared there was always that sense of community to see us through the darkness. There was always someone to lean on, talk to or cry with, no matter what the hour. We were all that we had and many times that was more than enough and for the times it wasn't, you quickly learned how to simply put one foot in front of the other and continue forward.

There is obviously so much more to this story, but my heart is too heavy to continue. Senseless loss will always remain senseless and I miss my friends. I'll always wonder why I survived where so many did not. I often wonder if there was more that could have been done, but how do you effectively address the unknown? I'll always have a large part of my heart missing, lost, piece-by-piece, as each friend died. They say that time heals all wounds and maybe that is true, I just wonder how many years it takes for the hurt to diminish because those losses still seem as if they just happened yesterday.

But most precious, is I have my memories and that sense of community that still accompanies me today. I miss them terribly, but I remember them fondly for they were my light in the storm that were my early years. They gave freely of themselves, even when dying and epitomized the essence of humanity to their friends. We built a community that still exists today. A community that has carried me for 21 years on my journey with HIV, keeping me grounded and confirming the path I have chosen, since my infection.

The early years, when I was fortunate enough to discover and help build, a community that I will never, ever forget. A community that attempted to make sense of the madness, but failing that, we maintained the living while grieving the dying, because there was little else we could do. Yet, it's the angels that were part of that community, which got me through the early years of my infection and who still inspire me today, tomorrow and forever.

Here's to all of you, my dear friends, while you may be gone, you will never be forgotten.