'Each morning I open my eyes is a miracle. The blessing of opening them is temporary on any given day.' — From the poem Cordon Negro, by Essex Hemphill
Living long enough to make it to the age of 16 is a miracle for some people. Although turning 16 means you are still young, it is still a landmark birthday for most young men and women. My Sweet Sixteen has happened twice in my life. Both times, it has been a bittersweet occasion and milestones.
When I reached the age of 16, some 26 years ago, I was escorted from my home because my parents minded my admitting and wanting to live a 'homosexual lifestyle.' The second time I celebrated my sweet 16 was this past Aug. 16, 2005, when I marked 16 years of living with HIV. Every one of us was made to suffer, made to weep. With any journey, there will sometimes be pain, pleasure, sorrow, and successes. I do not regret either event because it has made me a stronger person.
Testing positive for HIV, the virus that causes AIDS, was the worst thing in the world that I thought could have happened to me. It was also the best thing in the world because it, in time, saved me from some very self-destructive ways. I was 24 when I got the news. At the time when my doctor called me on that evening, he expressed that he was sorry to be calling me so late but my results had come back positive for HIV. A cold, numbing feeling went from the receiver and traveled throughout my body. I took the test two more times to make sure. They both came back positive. I had to accept the truth; HIV was not just a gay white male disease.
The doctor advised me to get my affairs in order; that I should either get myself into a clinical trial or start taking a new drug called AZT to prolong my life. Years later I discovered that 1989 was the last year that white gay males topped the statistics for incidence of HIV cases in Chicago and that men of African decent took the title. The unwelcome news of testing positive for HIV, which I later called Mr. Death, increased my sipping of vodka and sniffing of coke, which became my sole pastimes, leading me away from my pain, my reality, and numbing me into my own slow suicide. It took some years to pull it together.
Outpatient therapy for HIV and substance issues helped me deal with some of my demons. I eventually decided to claim life after diagnosis and worked to make all my dreams become realities. I started college at the age of 28 and completed my undergraduate degree at 36 after attending school part-time, working full-time in the field of HIV/AIDS, and becoming a working actor and writer.
HIV has enhanced my life because it made me want to make the most out of life. I have become more of a miracle than I ever thought I would or could be. Being a man of African decent living over 30 with or without HIV is rare nowadays. It has taken awhile but I learned to accept my blessings. The experiences I have endured have enabled me to become 'old wine in a new bottle.' I have the honor of calling myself a 'long-term survivor,' in my own personal war with HIV, or Mr. Death.
I have been a contributing writer for Windy City Media Group for eight years now, my first column, Haunted by Mr. Death, was published August of 1997. Since the start of the 21st century I've been haunted by my own words in previous articles about the growing threat of multi-drug resistant HIV and the possible end of a race of people of African decent.
In 2000, I devoted two columns to shattering the denial about HIV/AIDS in the African American community, 'Searching for Clarity' and 'A Point of Clarity,' in the May and August issues of BLACKlines.
In those columns I stated that too many of our people were in darkness, slipping in and out of denial while some chose to bathe within it despite the facts they were presented.
I have shared my own experiences as a man of African decent that desired other men intimately and sexually while living with HIV. When I decided to start taking medicine and had to learn to take note of the importance of taking Highly Active Anti-retroviral Therapy ( HAART ) , I wrote that over the course of a year I researched anti-retroviral therapies and went power shopping for a holistic approach in preparation for what I felt was to come at that time. Overcoming the fear of taking the medication that would become a daily ritual was ultimately my greatest challenge. Popping pills was a constant daily reminder that I was living with HIV. When I did take them, the food I took with them made me feel full, but the medication made me feel empty.
I followed my rituals with my regimen, adhering to its twice-a-day dosing schedule, believing that I would have to do this until there was a cure for HIV. Every three to four months I became anxious and fixated over what I affectionately call 'T-Cell Lottery,' wondering what the magic numbers would be for my CD4 and viral load count. There were times I dreaded going to my medicine cabinet or packing my meds for the next day's dose.
I am very happy to report that even though I started a HAART regimen Labor Day of 1997, because of good CD4 and viral load counts, my physicia nand I agreed to a structured treatment interruption. I have not had to take medication since Memorial Day 2001. Today I cringe when I hear that people think HIV/AIDS and the war on HIV is over or worse that it is a 'manageable disease.' The mis-education of our youth with an abstinence-only agenda until marriage, the exploitative anti-HIV drug ads that once flourished in some media, and an absence of accurate media coverage of HIV/AIDS reinforces this way of thinking.
Yes, HIV-positive people are living longer lives, and the progression to AIDS has slowed. However, the reality is that the rates of new infection are growing celestially, especially among people of African decent. And yes, people are still dying from AIDS. People of African decent are at greatest risk globally for HIV/AIDS and we have already lost more than was lost in the Middle Passage, or what some have come to call the Black Holocaust. There is still no place on earth that has reported a case of HIV that can claim that they have stopped the spread, only slowed its advance on humankind.
People are living longer lives because of biomedical and behavioral research of HIV/AIDS and anti-retroviral therapy that has advanced tremendously since the dark 1980s. What I have learned about the daily rituals with the regimen I took is that you need to be prepared and focused. You have to be a fighter in order to survive. You owe it to yourself to do some research and actively participate with your physician in your healthcare management. If there is a safe space where you can talk to other long-term survivors who practice daily rituals with regimens, treat yourself to their stories. Some of those warriors have many battle scars and helpful tales of war and survival. There is life after diagnosis if one chooses to claim it for themselves. It is a battle, but life in general is a battlefield for many people of color.
The war that haunts me even in the age we live in now is the one on HIV. This one is the bloodiest for me because it is constant and there is no foreseeable end. As a young adult, I was drafted and placed on the frontline 16 years ago when HIV invaded my body. I saw the true casualties of war as I lost one friend after another to HIV and attended tearless funerals that had fire and brimstone overtones that came from the pulpit. I have gone from youth to middle age with HIV inside of me. A daily battle that rages within that at times has me fighting for ground mentally and physically.
When you are at war, the last thing you would want to concern yourself with is being attacked by your allies or within your ranks. Under the Clinton administration, we were given tools that combated homophobia to a degree and at least some funds and acknowledgment that HIV/AIDS had become a critical issue. It took years after the discovery of the virus that we know as HIV to be acknowledged under the Reagan administration. It was not long after George W. Bush 'took' the office of President, that a statement was made that the Office of National AIDS Policy, which was created under the Clinton administration, would be closed. The announcement sent a message to the American people that AIDS was over and that was far from the truth, especially within communities of color.
Although a statement was released expressing that the office would continue under the Bush administration and that the statement was made in error, I never stopped wondering how much truth there was in the initiative to close the office in the first place. I also wondered what would have happened if activists hadn't gone on red alert and raised hell about the statement and implications behind such a move from a president with a Fundamentalist Christian Ideology.
This past June, the CDC released a statement that more than one million people are now living with HIV and this statistic was greater than ever before. Additionally, nearly half of those cases are people of African decent. The Ryan White CARE Act, the safety net for the poor living with HIV, is under attack by the Bush administration. Critical services could be cut. In the aftermath of Hurricane Katrina, the world knows how slow the Bush administration was in providing critical services, many of the people of New Orleans that are living with HIV are without the vital medicine that they need to allow them to continue to dance upon the earth. Thankfully, there have been pharmaceutical companies and other organizations providing the necessary medicine for them as they try to pick up the shattered pieces of their lives.
This year has been a bittersweet Sweet Sixteen. Some of my fellow people of African decent are still bathing in denial and this has to stop! We must become politically active and educate ourselves. We must go on red alert and raise hell! If we show that we don't care why should anyone else? We need to create a rippling effect of knowledge, love, and understanding for ourselves, our people, and especially for the generations that follow us all.