Please Note – This is a personal story with frank discussions about HIV/AIDS. Personal stories are opportunities to experience first-hand accounts of real-life situations. It is a gift and many times we see ourselves in these accounts.
Bruce E. Smail & Biko
“I Have Some Good News and Some Bad News”
It’s February 10, 2003, and I am sitting in my doctor’s office waiting for results from a recent blood test to determine if the status of my bilirubin had improved. My doctor said “I have some good news and some bad news.” She informed me that my bilirubin was better but I had some borderline cholesterol and glucose issues. I felt relieved on one hand yet concerned about the two “bad” factors from the blood test. She then said “oh by the way, your HIV test came back reactive.” I asked her, “What HIV test?” She also seemed quite surprised because she did not request a HIV test.
After returning from my Grandma’s funeral in St. Croix in early January 2003, I saw my doctor for an annual physical. I also requested testing for STIs (sexually transmitted infections). She asked if I wanted to take a HIV test but I informed her that I took one in December 2002 and it was negative. So we agreed to take another HIV test in a couple of months. My doctor inserted the HIV test form in my folder as a reminder to herself to give the HIV test on my next visit. When I was sent for my blood work, the Lab Technician gave me a form to sign. He never indicated what the form was, nor did I ask or read it — just signed it. I actually assumed that my health insurance just had another form that needed to be filled out. What I did not realize (at that time) was the form that I signed was the consent/release form for a HIV test. The mystery of this “unknown” HIV test was now solved.
As my doctor tried to console me, she indicated that a reactive test could be a false positive test. She went on to suggest that it could be an error. I indicated that I wanted her to expedite the confirmatory tests. I also knew that my life was about to change at this point. Why would my test come back reactive if I was not positive? Well, the only thing I could do was wait for the confirmatory results. A few days later, my doctor called to inform me that the confirmatory tests came back “indeterminate.” I told her that I wanted my blood drawn again and retested that day.
So for a 15 day period, I was living on the edge waiting for the final confirmation of my HIV status. The second blood draw came back reactive as well. At that point, I knew where this result was going. My doctor ordered confirmatory tests for the second blood draw.
On, February 25, 2003, in the midst of the Annual Diversity Summit at the University of Colorado at Boulder, my silenced cell phone showed my doctor’s caller ID. I left the conference room, walked outside to hear the voice mail in which my doctor asked me to call her. I did call her and she tells me that the confirmatory test confirms that I am positive. She checked in to see how I was doing and told me that she wanted to refer me to the Infectious Disease Clinic in Denver for treatment. It is a leading research arm of the University of Colorado. She indicated that she would set up the referral and I had an appointment within two days.
I immediately pulled my boss and a close colleague out of the Diversity Summit. I shared the diagnosis with my boss and close colleague. I told my boss I needed a few days to pull things together and my colleague offered to substitute my role as panel member in the afternoon session of the conference.
With both factors taken care of, I immediately left for home to regroup.
The Internet — A Great Security Blanket
During the 15 day period and beyond, I relied heavily on the internet as a key resource in understanding the realities of HIV/AIDS. I thought I knew a lot already, but there is nothing like the quest for knowledge when a medical crisis is at your doorstep. The Centers for Disease Control and Prevention (http://www.cdc.gov/hiv/), The Body (http://www.thebody.com/) and The University of California, San Francisco’s HIV Insite (http://hivinsite.ucsf.edu) became my security blankets. I was able to research my situations and knew what was going on for an engaged discussion with my medical professionals. I knew more about my early journey because of the helpful information on these websites. I researched everything I could find on HIV. It was at this point that found that an indeterminate result mostly likely meant that my body was producing anti-bodies but not enough to confirm HIV. My body was transitioning at that stage. Considering I just tested negative in December 2002, my body was reacting to a relatively new infection. When the second blood test came back reactive, I knew what I faced with the confirmatory tests.
A New Journey
At the University of Colorado, I was the Director of the Gay Lesbian Bisexual Transgender Resource Center. Advocating for a population that has also been impacted by HIV/AIDS, I found it critical to be open about my HIV status. Knowing the challenges of a closed sexual identity versus the benefits of living an open life, I refused to let HIV become stigmatized in my life. There was nothing I could do to change my status at that point — there was nothing to feel guilty about —- and I knew this was an opportunity to share yet another aspect of my life. Despite the challenges I knew I would face as a person living with HIV, I also knew that I still had to love myself, share my story, and help others put a face to HIV. My HIV status is just one of the many dimensions of my life.
Within the first few days, I took control of HIV rather than allowing it to take control of me. I immediately shared my status with close friends and family. I did not want to hide this disease until I could not hide it anymore. It is important to me to enjoy my friends, family, and colleagues while I am alive and doing well.
Wide Range of Reactions
In sharing my status with friends, family, and colleagues I realized the stigma associated with HIV/AIDS. Some reactions were empathetic, some were judgmental, some were guilt-ridden, some transferred their anger, and there were many other reactions. You just never know what to expect. But I have learned not to worry about the reaction — since it is truly that person’s issue to handle. I can only take care of my emotions and feelings in the process.
One of my siblings wept when I shared the news. We just returned from our grandma’s funeral a month prior and it was a similar sobbing on the phone. Unfortunately, I did not have enough time to talk him through his reaction. I was on my way to a diversity training, just four days after my diagnosis. So moments before the start of the training, I called two other siblings to call my brother and help him through his emotions. I think my brother thought I was going to die by end of the weekend. The reaction of immediate loss/grief was common. In some ways, I think it is attributable to the hidden nature of HIV/AIDS — the embarrassment, shame and guilt which renders many people living with HIV/AIDS (PLWHA) silent. The silence is sometimes never broken throughout the illness and an undercurrent of assumptions is present at funerals or there is a “final” announcement just days before someone dies. This may have created the “immediate loss” reaction when HIV status is disclosed. I also say this because I have reacted the same way a few months prior when I learned of a dear friend’s HIV status. My tears were more about losing that person that person. Well, it is now seven years and thank God I am doing well.
I also experienced people getting mad at me because of my actions and blaming me for becoming HIV poz. I struggled with this reaction but as I engaged my friends, it seemed that their reactions were rooted in their own guilt and discomfort of their risk behaviors. Some saw my reality as a reality check for their risky behavior. So being mad at me was an expression about their personal disappointment in their decisions and risky behaviors. The bottom line, all of us need to be accountable for our actions and decisions — whether they are positive or negative choices —we are all responsible.
Our society is quick to blame someone else. Many wanted to know who gave it to me. This is about blame rather than taking responsibility. If someone engages in unprotected sex and becomes HIV poz — who is responsible? Is it the person with HIV? Many may argue it is the person living with HIV. Under normal conditions, the decision to be intimate or have sex with someone is a mutual decision. The decisions during that time are the mutual responsibility of all parties.
I also found that women seem to be more willing to understand while men seem a bit more fearful and standoffish. It might be our upbringings, but it was interesting to see how colleagues at the University responded when I shared my status. I felt that many of my male colleagues were more standoffish than my female colleagues. But that was also at the early stages of sharing my status. With time, I think people grew to understand and accept.
Overall, I also feel that people are comfortable if I am comfortable with my status. From the start of my diagnosis, I have been upfront with my status. The openness created doors for many people to ask questions and seek advice.
Hmmm…. So How Did You Get HIV???
I cannot begin to tell you how many times I am asked this question. The funny thing about HIV is that it takes a while before you know that you have HIV. Because of the lag in time and our ever changing body conditions it is very difficult to pinpoint the mode of transmissions. I therefore think that this question is a ridiculous proposition to determine. Unless you are doing extensive testing of individuals to compare virus strains, there is no conclusive way of determining your source of HIV. This question seeks to blame a source and alleviate personal responsibility.
Unless I was involved with only one person, then it would be easy to narrow the possibilities. While my encounters were limited during that time period, I was involved with more than one person. We sometimes get caught up in judging risk factors based on the number of partners. While multiple partners may increase the risk, it is not the number of partners that put you at risk; it is the unsafe acts that put you at risk. Think for a moment, if you used a condom with five sexual encounters and did not use a condom with one sexual encounter — which act do you think you are at more risk? Even if we changed that around to being with a single partner and having unprotected sex because you are in a committed relationship — is that safer? What if your partner is having sex with someone else but is afraid of losing you if the outside relationship is acknowledged? Are you at risk? So monogamy and limited partners are not safer sex practices — because in both examples the partners engaged in unprotected sex. So do not be misled by “perceived protections.” Bottom line — if you are having sex there is a risk — period. Misunderstood by many — there are risks with oral sex.
When I have shared my story publicly, I talk about a man I dated in Colorado. I remember the Sunday night that we first became intimate; there were ads on MTV about condoms. It was weird that the ads appeared as we were lying in the bed. In the midst of our intimacy, we had unprotected sex. While there was no exchange of bodily fluid, we did have unprotected sex. During that first week, we were sexual a few times. The following Saturday night we hung out at the local gay club and at the end of the night he was crying in my car but I could not get him to talk about what was bothering him. The next day we went to the Garden of Gods in Colorado Springs and just had a wonderful afternoon — we enjoyed the beauty of the huge rock formations. Later that evening, in our phone call, he cried again — and I knew something was wrong. I wanted him to share what was wrong and he finally did — he told me that he was HIV positive.
A lot of emotions occurred that evening. While on one hand I cared (and still do) about this person, I knew that the decision to share his status in the midst of possibly losing our connection was painful. The fact that it was shared a week after having unprotected sex was unfair but I also realized at that time (and clearly realize it over the seven years) it is a difficult decision that POZ folks face over and over and over again. It is one of the most challenging decisions one has to make. Do you share your status and risk losing someone — or do you keep it quiet and deal with the reaction when someone finds out later? It was a personal decision and I realized that while his decision not to disclose until a week later was unfair, he was NOT RESPONSIBLE for my decisions that week. He, like I, both have personal responsibility in making the decision to protect or not protect ourselves. Our choice that evening does not place him in a more responsible role than I. I am in no position to blame after the fact.
It is usually at this point in my presentation that everyone interprets what I said and points to this person as the reason for me being HIV positive. The anger is shifted to this person. People have asked if I am angry at this person. Some have suggested bodily harm to this person. I always step back and say — if I have not blamed him — I am not angry at him — and I understand why; why is it that people feel they have the power to judge and blame? We need to really think about these reactions. While it is true that he did not disclose — is it fair to assume or blame him for my HIV transmission? Remember, I did say he was not the only person I was involved with during this time period. Do we know if any of my other intimate partners were HIV positive? Since I generally did not ask HIV status and most (about 99%) of my encounters I used condoms — how did I become HIV positive?
Like most sexually active men and women I know, we do not use a condom or dental dams for oral sex. The research on this is very sketchy. While most research indicate there are risks – it is hard to determine the degree of risk. Because people assume it is “low” risk, people mistakenly think it is safe. The HIV virus responds to modes of opportunity. If you have a cut, opening, or an avenue for HIV to enter you blood stream you are at risk. In many cases — we may not know when we have an avenue for transmission. So on those moments when the avenue is there and you are not protected, you are at the greatest risk for transmission. So could my other encounters that were oral impact my HIV status? That was a possible factor.
While our bodies react differently, we generally develop antibodies 1-3 months after contracting HIV. In some cases it can be up to 6 months. The person I had unprotected sex with was outside of this window. The last sexual encounter was several months beyond the six month window. Within the three months window I had a tattoo done on Venice Beach in California. There are risks with tattoos depending on how they sterilized the equipment and use new needles. Because it is inside the window, it was a possible factor as well.
With all said above, I hope it becomes clear that you really do not know the mode of transmission. You can make guesses, you can blame, but unless you can guarantee you are with one person and guarantee that your partner is only with you, it is hard to know how it was transmitted to you. And the bottom line question is — Does It Really Matter? If you become HIV positive, there is nothing you can do to change that reality. I prefer to accept the reality and live my life rather than spinning negative energy around the “how.” Life is too short and this disease may impact my time here on earth so I choose to live it to the fullest.
Some Reflective Thoughts
- Window Periods – In a couple of occasions I referenced window periods. Remember, I was negative in December 2002 and became positive in February 2003. This means that my body was building the antibodies during that time period. Many people feel assured with a negative HIV test result. You must remember that a negative HIV test result does not mean you do not have HIV. It means that there were no antibodies or not enough antibodies to confirm a reactive test. The thought of having unprotected sex with someone that is negative is risky since that person could be in transition and you just do not know it. And if it is a new conversion (for example if I had unprotected sex with someone while I was “negative” – December 2002-February 2003), the viral load is at the highest levels and the risk of transmission is at the greatest. In talking to potential sexual partners, some are unwilling to be sexual because of your positive status. Yet, at the same time they will sleep with someone else and not know their HIV status and feel safer. At least with the HIV positive person you know their status and you can protect yourself. The unknown person — you might take risks because you assume the partner is negative — yet they may be converting and you have just placed yourself at a very great risk for HIV. While having sex with someone that is POZ is scary for some people, I am sure that many people have already encountered partners that are positive but just didn’t know it.
- Trusting Partners – So many people hide behind their marriages, committed relationships, and monogamy. None of these relationship statuses are safer sex measures. It is your trust in another person and your hope that he/she is being honest. Most of these relationships practice unsafe sex because of trust. You do not have to look far to realize that both men and women cheat in relationships. Engaging in unprotected sex is a choice in your relationship, but also be prepared for the responsibility of HIV if you are impacted at later date. And do not blame anyone. It’s not your partner’s fault (that is about blame); you are just as responsible in protecting yourself as a woman or as a man.
- Know Your Status – As you may have assumed, I tested regularly for HIV and STIs. With the regular testing, I was able to pinpoint the start of my HIV. While our bodies (on average) can combat HIV for the first 7-10 years without medication, there is a time when the virus may take control of your body. At that time, medication will help regain control of your body. Of course there are side effects to medicine, but it makes HIV/AIDS a manageable disease.
- Valuing the Poz Folks In Your Life – We are all at different stages of this disease. After 7 years, I feel fine and I am not on any medications. I know people living over 20 years without medication. I know people who were placed on medication immediately upon diagnosis. We are the same people before HIV — and it is important to value the Poz folks in your life. Do not assume that we are all “sick.” Yes we have a virus with a compromised immune system, but many of us are as healthy as everybody else. Yes, some of us may have many health challenges.
- Sometimes it is a Lonely Place – Stigma and judgment can render people into silence. It is important to create spaces that are not judgmental and stigma-free. Safe zones create opportunities for PLWHA to productive community members.
- Disclosure – This is a difficult decision for anyone living with HIV/AIDS. Personally, I believe in being open — which has the risk of rejection. I also understand those that choose not to disclose. It’s about safety and PLWHA feeling safe and free of discrimination. If we were a society that did not discriminate, I am sure more people would be open about their HIV Status, sexual/gender identity, and other areas that we tend to keep private.
- Enjoy Life – Even with the challenge of living with a life threatening illness, I have had some of the best experiences in the last seven years. I have been to Carnaval in Rio de Janeiro twice; visited Salvador de Bahia – Brasil twice; ran the largest HIV/AIDS organization in the Virgin Islands, launched my company – Social Justice Consultants, LLC; enjoyed/enjoy the love and support of many friends, family, and colleagues; and enjoyed/enjoy the love of four boxers — Maxwell, Biko, Miko & Mandela.
Every day is a new day and I live my life to the fullest. I have no regrets — just surrounding myself with lots of positive energies. While it takes strength to love yourself despite the wows of stigma, discrimination, and judgment — I live my life for Bruce and I hope that it inspires others to create healthier environments as we face the challenges of living with HIV.
Bruce E. Smail is the Chief Executive Officer of Social Justice Consultants. For more information on speaking opportunities for your organization, contact us:
Visit Our Website: http://socialjusticeconsultants.com
Email: Bruce.Smail@socialjusticeconsultants.com
Call Social Justice Consultants, LLC at: (202) 340-7776
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