MY STORY : Coming Out and What Inspired Me to Write this Book.
This was a very difficult book to write. Even finding a title to get you to open the front cover was a subject of controversy among my friends. Having engaged in risky behaviors with apparent impunity for over a decade, it was a real shock to me when, during routine testing, I found I was HIV+.
I came out at 51. This was quite an adventure. I joined the DC gay swim team — competed in local and international meets for the first time in almost 40 years, swam the Chesapeake Bay Swim (4.4 miles, twice) as well as the Provincetown Swim for Life. Within six months of coming out, my
waistline went from 38” to 33” — I shed weight, leaned down, learned I was an attractive man, and was ready for “the scene.”’ I felt pressure to be physically attractive and to address my own self-esteem issues. I also became an avid cyclist and worked out regularly — some would say to the extreme.
I embraced my newfound sexual freedom with a vengeance. At first, I was scared-to-death of contracting an STD, much less HIV. I remember my first HIV test after having visited a gay resort and having protected anal and some oral sex. My doctor ran about 20 tests on every possible STD and disease to assuage my fears. After a few years of anxiety over HIV tests, I relaxed and just accepted that the tests would come back negative — which they consistently did. Later on, I had a few relationships where we dispensed with condoms. Gradually, I stopped using condoms at all.
I now had a feeling that I was at-risk, but after literally years of being tested every three months and remaining negative, I felt somewhat invincible and immune from HIV. Even so, a part of me knew I might be getting into trouble. Thus, in 1998, when I lived in Boston, I volunteered for the first, and so far only, HIV Vaccine to make it to Phase III Trials (VaxGen Vaccine). My primary reason for volunteering was to have a support group when (not if) I became HIV+. In Boston, I was in the bathhouses two to three nights a week. Every three months, as a part of the study, we had to give a detailed sexual history as to number of encounters oral, anal, top/bottom, safe, bareback, etc. We’d have six vials of blood drawn for testing, and then, two weeks later, returned for another injection. I remember once telling the clinical worker before he gave me an injection, that, upon reflection, I had underestimated my sexual contacts by a factor of three in the detailed questionnaire I had filled out two weeks before.
This vaccine study was a double blind study so that some individuals got the vaccine and others got a placebo. It turned out that the vaccine was less than 15% effective — but even so I believed that it had worked for me. As it turned out, five years later when we were unblinded, I learned that I had received only the placebo. Since I was still HIV-negative and had unprotected sex with literally thousands of men, I felt I was one of those rare individuals immune to the HIV virus. I was one of those who took the ”safe sex” packets to get the free lube. I recalled ten years ago, in a DC clinic being asked what I would do if the test result came back positive. My response: “I would kill myself!” “Then we cannot give you the test.” I replied, “Maybe I need more education,” received the test, and I again tested negative.
I routinely got tested every three months and the test results were always the same ... until December of 2009, when during a routine test, I was told the result indicated I was HIV+. I was in total shock and disbelief.
The lack of any counseling and referral at this testing site made it even more difficult. It was left up to me to call my doctor and get the confirmatory testing. The fact that I was left on my own to follow-up caused additional stress. It took me three days of calling and hanging up the phone to finally contact my doctor and make an appointment. This was a nightmare period of virtually no sleep.
Thank God, my doctor was compassionate and well versed in HIV treatment and medications.
This turned out to be just the beginning of my new journey. And the beginning of endless blood work. After my genotyping came back, we reviewed my options. The last thing I wanted was the possible hallucinogenic dreams common to Atripla, I chose Truvada, later combined with Viramune. I should note that Gilead packages the first introductory two-week supply of Truvada in a blue travel kit. I found this free gift and packaging a bit unnecessary and a waste of money. A vial of pills would have sufficed. Although in retrospect, Gilead’s gift to me meant a virtual lifetime of being on their pharmaceuticals.
My anxiety was still not over. I lost sleep for over a week revisiting when and with whom and why as to the source of my HIV infection. Working with an incredible therapist, I cleared up the uselessness of this exercise, and I began again to live in the present.
But not before I filled my first month’s prescription and was presented with a co-pay charge of over $600. At that point I called my doctor and said that I could not afford to live. I was referred to a Medicare group that fully covers all my medications, laboratory work, and doctor’s visits. But presently, I am restricted to living in two counties in FL or two in CA to receive this benefit.
Then, I tried numerous HIV+ support groups. From my perspective, they made me feel like a victim rather than someone with a manageable disease with a desire to be an active and productive person. I began to read extensively and, from on-line conversations, realized that I was not the only one having challenges of being HIV+, evaluating what it meant to me, and learning what options were available to me so I could be responsible, yet remain sexually active.
I was also determined not to let this disease get me down. I increased my workouts, set a goal of cycling 2,000 miles a year, and working on dealing with bouts of depression and some binge drinking —(never any drugs).
I informed my elderly parents, a few friends, and my two sons of my HIV status — I had to get quickly educated to assuage their fears and concerns.
This book is also the result of that journey. I also experienced and continue to experience misunderstandings, insults, and even loss of long friendships when I choose to reveal my HIV status. (I am still in somewhat of a shock from the reaction of my best gay friend, John, from 4th grade, who I had known for over 50 years. John showed no compassion, but instead wrote me a scathing email blasting me for getting infected!)
It is my fervent hope that we will begin to become more educated and act more responsibly as gay men. We also have to build bridges between the HIV- community, the survivors of the AIDS epidemic (both HIV- and HIV+), and the 50,000 individuals each year that test HIV+. And we must work together to reduce the level of new infections.
I am keenly aware of the how the current stigma associated with being HIV+ creates the “fear of knowing” and makes it very difficult for individuals to go and get regularly tested.
This is a tragedy. It results in men who last tested negative, but unknowingly have highly infectious viral loads, spreading HIV and infecting others — including possibly their friends (one condom-use study showed men less likely to use condoms with those they knew than with strangers!)
Individuals who test late have fewer treatment options, may not respond as fast to the drugs and may even have such high viral loads and low T-cell counts that they develop AIDS. This is why it is so critical to test regularly, be detected early, not to spread the virus, and get the most effective treatment early.
This book is the result of my struggle to understand HIV and what it meant to me. I found there was no single source of updated information that was presented in an easily understandable way. Every 3 months, I drill my Doctors with questions. I am bombarded with questions from strangers on- line who did not have access to the same quality of health care or perhaps the ability to digest the thousands of pages of articles, I read and synthesized. I found that many of their Doctors were far less knowledgeable about the medical issues associated with HIV than I am.
Having just viewed: “Surviving the Plague” about the AIDS Epidemic, I find it interesting that in order for ACTUP to get the FDA and other government agencies to act, they had to educate themselves. I suggest there are only a small minority of HIV+ individuals who have any understanding of HIV and how their meds are working and how essential a healthy life style and being med-compliant is for their well being.
I also learned from many therapists and former activists that they had no idea of how the programs they helped set up have been gutted and discarded.
The idea to write this book came to me while cycling in the wilderness of Pennsylvania. For whatever reason, I felt compelled to step in and provide information in one book to guide gay men through the challenges we all face. I have a PhD in Biology; however, this book is written from the point of view of someone in the trenches, who is living every day with the challenges of being a sexual being. And now being discriminated against by being HIV+.
I feel that with the HIV Epidemic we are almost in the same place we were at the beginning of the AIDS Epidemic: a fragmented, ineffective approach to ending HIV. As I point out in my book, this epidemic is silent. Comparatively few are dying, however 50,000 new infections per year continue to add an economic health burden to the US economy of at least $1 billion per year. These drugs are not cheap and they are not universally available. Meanwhile, 1 in 5 individuals (>250,000) with HIV do not know they are infected; they provide the reserve that continues the HIV infection year after year.
In the absence of a national effort to reduce infections, I feel it is largely left up to the individual to get educated and be responsible for his own actions.
Read the book, ask questions, and work with your doctor or HIV clinic to develop an effective risk reduction plan for you — dependent on your HIV status (+ or -).
And remember, this is an evolving field; new information is literally available daily. I feel strongly that it is our joint responsibility to be informed and understand how to stay HIV-, and if you are HIV+, learn how to be responsible sexually and to take care of your health.
This was a very difficult book to write. Even finding a title to get you to open the front cover was a subject of controversy among my friends. Having engaged in risky behaviors with apparent impunity for over a decade, it was a real shock to me when, during routine testing, I found I was HIV+.
I came out at 51. This was quite an adventure. I joined the DC gay swim team — competed in local and international meets for the first time in almost 40 years, swam the Chesapeake Bay Swim (4.4 miles, twice) as well as the Provincetown Swim for Life. Within six months of coming out, my
waistline went from 38” to 33” — I shed weight, leaned down, learned I was an attractive man, and was ready for “the scene.”’ I felt pressure to be physically attractive and to address my own self-esteem issues. I also became an avid cyclist and worked out regularly — some would say to the extreme.
I embraced my newfound sexual freedom with a vengeance. At first, I was scared-to-death of contracting an STD, much less HIV. I remember my first HIV test after having visited a gay resort and having protected anal and some oral sex. My doctor ran about 20 tests on every possible STD and disease to assuage my fears. After a few years of anxiety over HIV tests, I relaxed and just accepted that the tests would come back negative — which they consistently did. Later on, I had a few relationships where we dispensed with condoms. Gradually, I stopped using condoms at all.
I now had a feeling that I was at-risk, but after literally years of being tested every three months and remaining negative, I felt somewhat invincible and immune from HIV. Even so, a part of me knew I might be getting into trouble. Thus, in 1998, when I lived in Boston, I volunteered for the first, and so far only, HIV Vaccine to make it to Phase III Trials (VaxGen Vaccine). My primary reason for volunteering was to have a support group when (not if) I became HIV+. In Boston, I was in the bathhouses two to three nights a week. Every three months, as a part of the study, we had to give a detailed sexual history as to number of encounters oral, anal, top/bottom, safe, bareback, etc. We’d have six vials of blood drawn for testing, and then, two weeks later, returned for another injection. I remember once telling the clinical worker before he gave me an injection, that, upon reflection, I had underestimated my sexual contacts by a factor of three in the detailed questionnaire I had filled out two weeks before.
This vaccine study was a double blind study so that some individuals got the vaccine and others got a placebo. It turned out that the vaccine was less than 15% effective — but even so I believed that it had worked for me. As it turned out, five years later when we were unblinded, I learned that I had received only the placebo. Since I was still HIV-negative and had unprotected sex with literally thousands of men, I felt I was one of those rare individuals immune to the HIV virus. I was one of those who took the ”safe sex” packets to get the free lube. I recalled ten years ago, in a DC clinic being asked what I would do if the test result came back positive. My response: “I would kill myself!” “Then we cannot give you the test.” I replied, “Maybe I need more education,” received the test, and I again tested negative.
I routinely got tested every three months and the test results were always the same ... until December of 2009, when during a routine test, I was told the result indicated I was HIV+. I was in total shock and disbelief.
The lack of any counseling and referral at this testing site made it even more difficult. It was left up to me to call my doctor and get the confirmatory testing. The fact that I was left on my own to follow-up caused additional stress. It took me three days of calling and hanging up the phone to finally contact my doctor and make an appointment. This was a nightmare period of virtually no sleep.
Thank God, my doctor was compassionate and well versed in HIV treatment and medications.
This turned out to be just the beginning of my new journey. And the beginning of endless blood work. After my genotyping came back, we reviewed my options. The last thing I wanted was the possible hallucinogenic dreams common to Atripla, I chose Truvada, later combined with Viramune. I should note that Gilead packages the first introductory two-week supply of Truvada in a blue travel kit. I found this free gift and packaging a bit unnecessary and a waste of money. A vial of pills would have sufficed. Although in retrospect, Gilead’s gift to me meant a virtual lifetime of being on their pharmaceuticals.
My anxiety was still not over. I lost sleep for over a week revisiting when and with whom and why as to the source of my HIV infection. Working with an incredible therapist, I cleared up the uselessness of this exercise, and I began again to live in the present.
But not before I filled my first month’s prescription and was presented with a co-pay charge of over $600. At that point I called my doctor and said that I could not afford to live. I was referred to a Medicare group that fully covers all my medications, laboratory work, and doctor’s visits. But presently, I am restricted to living in two counties in FL or two in CA to receive this benefit.
Then, I tried numerous HIV+ support groups. From my perspective, they made me feel like a victim rather than someone with a manageable disease with a desire to be an active and productive person. I began to read extensively and, from on-line conversations, realized that I was not the only one having challenges of being HIV+, evaluating what it meant to me, and learning what options were available to me so I could be responsible, yet remain sexually active.
I was also determined not to let this disease get me down. I increased my workouts, set a goal of cycling 2,000 miles a year, and working on dealing with bouts of depression and some binge drinking —(never any drugs).
I informed my elderly parents, a few friends, and my two sons of my HIV status — I had to get quickly educated to assuage their fears and concerns.
This book is also the result of that journey. I also experienced and continue to experience misunderstandings, insults, and even loss of long friendships when I choose to reveal my HIV status. (I am still in somewhat of a shock from the reaction of my best gay friend, John, from 4th grade, who I had known for over 50 years. John showed no compassion, but instead wrote me a scathing email blasting me for getting infected!)
It is my fervent hope that we will begin to become more educated and act more responsibly as gay men. We also have to build bridges between the HIV- community, the survivors of the AIDS epidemic (both HIV- and HIV+), and the 50,000 individuals each year that test HIV+. And we must work together to reduce the level of new infections.
I am keenly aware of the how the current stigma associated with being HIV+ creates the “fear of knowing” and makes it very difficult for individuals to go and get regularly tested.
This is a tragedy. It results in men who last tested negative, but unknowingly have highly infectious viral loads, spreading HIV and infecting others — including possibly their friends (one condom-use study showed men less likely to use condoms with those they knew than with strangers!)
Individuals who test late have fewer treatment options, may not respond as fast to the drugs and may even have such high viral loads and low T-cell counts that they develop AIDS. This is why it is so critical to test regularly, be detected early, not to spread the virus, and get the most effective treatment early.
This book is the result of my struggle to understand HIV and what it meant to me. I found there was no single source of updated information that was presented in an easily understandable way. Every 3 months, I drill my Doctors with questions. I am bombarded with questions from strangers on- line who did not have access to the same quality of health care or perhaps the ability to digest the thousands of pages of articles, I read and synthesized. I found that many of their Doctors were far less knowledgeable about the medical issues associated with HIV than I am.
Having just viewed: “Surviving the Plague” about the AIDS Epidemic, I find it interesting that in order for ACTUP to get the FDA and other government agencies to act, they had to educate themselves. I suggest there are only a small minority of HIV+ individuals who have any understanding of HIV and how their meds are working and how essential a healthy life style and being med-compliant is for their well being.
I also learned from many therapists and former activists that they had no idea of how the programs they helped set up have been gutted and discarded.
The idea to write this book came to me while cycling in the wilderness of Pennsylvania. For whatever reason, I felt compelled to step in and provide information in one book to guide gay men through the challenges we all face. I have a PhD in Biology; however, this book is written from the point of view of someone in the trenches, who is living every day with the challenges of being a sexual being. And now being discriminated against by being HIV+.
I feel that with the HIV Epidemic we are almost in the same place we were at the beginning of the AIDS Epidemic: a fragmented, ineffective approach to ending HIV. As I point out in my book, this epidemic is silent. Comparatively few are dying, however 50,000 new infections per year continue to add an economic health burden to the US economy of at least $1 billion per year. These drugs are not cheap and they are not universally available. Meanwhile, 1 in 5 individuals (>250,000) with HIV do not know they are infected; they provide the reserve that continues the HIV infection year after year.
In the absence of a national effort to reduce infections, I feel it is largely left up to the individual to get educated and be responsible for his own actions.
Read the book, ask questions, and work with your doctor or HIV clinic to develop an effective risk reduction plan for you — dependent on your HIV status (+ or -).
And remember, this is an evolving field; new information is literally available daily. I feel strongly that it is our joint responsibility to be informed and understand how to stay HIV-, and if you are HIV+, learn how to be responsible sexually and to take care of your health.