June 2005 Archives

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.

Of all the places to experience an epiphany, I never expected it to be on the floor of my gym, while doing floor exercises. Especially when it concerns my own death, with all the baggage that has always been connected to that future event. I suppose I expected trumpets blaring or melodramatic music at least in the background and not the sounds of "It's raining men." But while the men were raining, there I was contemplating my own demise and for the first time ever, it just did not seem to be that horrible of an event. Now I don't normally contemplate my own demise, so maybe a little background is in order.

Up until last year I smoked cigarettes and had been doing so since I was 16 years old. I grew up when cigarettes were bold and cool (think Virginia Slims or the Marlboro Man) and it seemed that almost everyone smoked, including both of my parents. Being young and foolish I thought I wanted to be like them and so I started smoking. I continued this practice, for the next 34 years, until Stephen and I decided, last November to quit the nasty habit. But the damage from cigarettes had already been done.

Over the years I have had increasingly difficult bouts of pneumonia and bronchitis and each time it takes longer and longer to recover from these illnesses. For those of you who have never experienced pneumonia, it's one of those diseases that you can be cured of in a matter of weeks, but it can take months to actually recover from the disease. So when I got pneumonia at the Holidays, I steeled myself for the long road of recovery and figured by summer I would be fine. I figured wrong.

So here I am, mid-June and I just got over another bacterial lung infection that thankfully did not develop into pneumonia, but it still wreaked havoc with my lungs. I initially had it for a couple of weeks, without really knowing it, until my lungs started to wheeze, which is never a good sign. Once my ID doc listened to my lungs, he started me on Ketek (telithromycin) that is a new, really heavy-duty, broad-spectrum antibiotic. It kicked the crap out of the infection and within 3 days I was beginning to feel pretty good. I still could not breath without wheezing, but at least I knew the infection was being destroyed. And being forever the good patient, I waited another day, before I just had to get out of the house and get some exercise.

On my way to the gym, I'm still wheezing and breathing like I am under water, but I know that it is just temporary and how good exercise makes me feel and how I really need to get my lungs working again. While I might be a fool to try roller blading so soon after this infection, I figure "how bad can a few floor exercises be?" To quote one of my favorite Gilda Radner characters, Rosann Rosanna Danna: "I thought I was gonna die."

My floor exercises start with my doing a Cobra, which is a stretching exercise and in a way you sort of look like a Cobra, but the point was I had to lay, face down to begin and that just about killed me. So I calmed myself and got through the stretching and then I was ready to start exercising. As I rolled over, onto my back, my lungs seemed to gain weight exponentially. It was like a crushing force on my chest and it would almost burn with each breath I would take. Try as I might, I could not draw a deep breath and a slight panic began to set in. Even sitting up did not help. It seemed that no matter what I did, I was having a really hard time catching my breath.

Over the past years, given my history with lung problems, I just assumed that I would die of some lung related disease, because my HIV no longer seems to be the culprit that will do me in. So I've been here before, gasping for breath and I know not to panic or overreact, but this time it was different.

Even as I struggled to get my breath, I just lay back down and pondered what it would be like if I just died, where I lay. And for the first time ever, it just did not bother me, for it no longer seemed to be something to be dreaded, but something that must eventually be embraced, either willingly or not. For death is the destination toward which all of us are racing and it is one of the few things in life that is inevitable. But where I used to fear the thought of death, this time it just felt like another possible solution to this condition we call life.

Rather than being afraid, I felt calm and even as I wheezed my way through my set, I knew that most probably I was not going to die from doing floor exercises. Yet I must say that it was interesting to savor the moment and to just let the thoughts float through my head of what might happen after I die. I did not concentrate on the realities of my demise and the impact on Stephen, Kate or friends, because this was a sort of dry run and being so, it was safe to just imagine and not contemplate the true sorrow that death always brings to those dear to you.

But the strangest reaction of all was how the thought of death seemed so calm and peaceful to me. No more pills, appointments, illnesses or wheezing lungs. No more wondering about how I was going to die, because it just did not seem to matter any more. There was an eerie peace during this time and all I could finally think was: "what exactly had I feared from death?" I used to think it was the fear of the unknown, but the unknown no longer seemed so foreign. It no longer was something to fear, but in its' own time, something to embrace.

Now before any of you think I have gone off the deep end, or I am harboring suicidal thoughts, no need to worry. I have no intention of leaving this world anytime soon, but now the thought of leaving this world, no longer scares me. Where I used to see death as a horrible unknown, my view has changed. I now see death as something that has beauty, because it will be for each of us, one of the most momentous events that occurs in our lives, second only to our birth.

Strange as it seems, death no longer scares me and I like the feeling. It no longer seems to be the end of life, but rather a continuation. Continuing onto what, I have no idea, but my fear has been replaced with acceptance. I feel like I have come to terms with another facet of life, even if it means the end of it.

Maybe it means that the Grim Reaper is not so grim after all, as often times, perspective is everything. Yesterday my perspective regarding death changed dramatically and it has now become just one less thing to worry about. Granted I'm not looking to die anytime soon, but now it no longer scares me and I like that feeling.

Mother sure never warned me that there would be days like these.

One dear cost of indifference: is that too many people stood by as crack devastated parts of the black community and again we simply look askance at the devastation of Tina (crystal meth) on the middle-class gay community. While it is ultimately your sole right to self-destruct, when you insist on taking others with you, isn't that the time for the rest of us to act? How fine is the line between enabling and condemning? How many more must we lose, before we ever learn?

One absolute about HIV prevention, is that it will never work until people care enough about their own health to protect themselves. We will never be able to scare or shame you enough, not by criminalizing or even using plain logic to get you to protect your health, if you don't think you are worth protecting. The sooner we address this issue and help to change how people view themselves, the sooner we will begin to see an impact on the HIV infection rates.

One of the reasons that there are not enough positive gay role models is that so many of them died of AIDS. Thousands upon thousands of gay men, from every walk of life, who would now be reaching from there 50s to the 80s, are simply gone. Many have been gone for decades and the void they left will continue to be felt for a few decades more. How different might the gay community and even society as a whole be, if not for their loss? We will never truly understand the magnitude of loss, in the gay community because of HIV.

One of the real conundrums about gift-givers and bug-seekers is how do you get the bug-seekers to feel welcome in some community other than the HIV community? Too many gay men have no sense of a community, gay or otherwise and then see the cohesive nature of the HIV community. Where I live, if you want a good active social life, you are much better off going with the positive crowd. Same with having a sense of community because if there is anything that positive people excel at, it is providing support. So how can we be surprised at some gay men, who are so marginalized by society and even their own family, to seek the one community which not only will welcome them with open arms, but which they alone can decide to join.

One of the most frustrating aspects of political correctness is that somehow too many people have been convinced that they have a right to never be offended again. Rather than experiencing the world and choosing their own way, they insist we camouflage all the perceived ugliness in life, behind convoluted words that are really nothing more than semantic gymnastics. Instead of simply speaking and acknowledging our challenges or differences, we must rename the elephant in the room. I'm waiting to be reclassified, from disabled, to employment-challenged, because the word disabled is now beginning to bother some people, just like the term "handicapped" did prior to our use of disabled. Now how exactly does that change my lot in life, or my perception of myself? Not one bit and supposedly I'm the one they are trying to protect. If I don't mind the use of the term disabled, in relation to myself, why should you? How dare you decide to trample my perceptions, just to make yourself feel better? Maybe if you weren't so intolerant, you would find most of the world to be rather enjoyable, along with her citizens. How do you ever see the beauty around you, when you are so busy looking for the ugliness? And who made you the arbitrator of what is acceptable in polite society?

One of my greatest fears is the alarming increase in the use of religion to mask utter intolerance for non-believers. Granted, it's a centuries old problem, but today, when it is connected with being politically correct, we seem to loose the ability to be objective. Many religious leaders are trying to deflect criticism, against their hateful teachings, by claiming intolerance for their beliefs. While I am far from a religious scholar, I have enough basic understanding of many of the major religions, and few hold the tenets that are being espoused by some of the religious leaders of today. There are too many societies that bastardize religious doctrine to teach their citizens, utter intolerance and in some cases, absolute hatred, for others who do no share their beliefs. This trend continues at an alarming rate and is beginning to be felt in many, previously religious-neutral countries. Over the last few years, I have gained a great appreciation for our separation of religion and state, regarding our federal government, because religious government rarely includes representative government, but rather oppressive government. I also fear that this separation of powers will continue to diminish, because our current administration thinks their god knows better than any of the others and if you don't agree, then you are lacking in morals; their morals. That scares me more than even HIV.

Just some random thoughts.