A Reporter’s Journey: Living With HIV
As a nurse drew my blood last Friday, the significance of what was happening and the date was lost on me. My biggest concern was trying to remember the words in Spanish to explain the procedure. As the blood was being taken from my left arm, I held my camera up with my right hand to explain to my Facebook friends in Guadalajara, Mexico, what was happening. I hate needles, so making the video was a good distraction.
The blood test was the second-to-last hurdle before the main event one day next month when I will undergo light chemotherapy. Then, three days later, I will get an infusion of genetically altered T-cells that were manufactured in a laboratory to be resistant to HIV. The cells were taken from me in October and treated with something called zinc finger nucleases, which severs the CCR-5 receptor, a door that HIV uses to enter the cells. The procedure effectively makes those cells impermeable to HIV. It is part of a study aimed at curing HIV, a concept that seemed out of reach just a few years ago.
That Friday date was significant because exactly two years earlier, on April 12, 2011, while I was living in Guadalajara and attending a Spanish immersion school, a doctor from Kaiser called to tell me that my blood test showed that I was HIV-negative but that I had been "exposed to HIV." He added that I should be careful because I could infect someone else. At the time, I didn't know what that meant. I didn't know there was a test to show the presence of HIV before the antibodies had time to show up.
The conversation over my cellphone in the bustling lobby of my school in downtown Guadalajara lasted less than two minutes. There were no words of reassurance. I am 53 and have known many people who died of AIDS. Intellectually, I knew HIV is a manageable disease now but emotionally it is hard to separate HIV from death and dying. Another Kaiser doctor had ordered a blood test a month-and-a-half earlier after I got what I thought was the flu. I figured I should have it checked out before I left for a two-month trip to another country.
I assumed test results were a mistake. My only risk factor was oral sex and well before the point of ejaculation. I didn't think it was possible that I had HIV. Based on everything I heard and read, I thought the risk was insignificant. While it may be extremely rare to get the virus that way, according to most experts, it is possible with a partner with a high viral load, likely someone who is unaware of their status and consequently not getting treatment.
I slept a grand total of six hours over the next three days after getting that call two years ago. I asked my doctor by email for more information about the other tests that were done on me and asked if I could speak to a counselor about his diagnosis. He said he would see what he could do, but he never got back to me. I tried calling the San Francisco AIDS Foundation a few times over Skype but couldn't break through its voicemail system. I called someone on the Centers for Disease Control and Prevention HIV Hotline. The man who answered knew less about HIV than I did. I talked to a friend over Skype but couldn't bring myself to tell him what was going on.
It was 6 p.m. on April 15, the eve of the Palm Sunday weekend just before the start of Holy Week, the most important holiday week in Mexico. I knew I had to have an HIV test to prove to myself what I knew to be true, that I was HIV-negative. I knew it was all a mistake. The flu must have caused a false positive. After the HIV-negative test, I told myself, I could finally stop worrying and get some sleep. I searched on the Internet for the Spanish words for HIV test and found a listing for Colega, Guadalajara's LGBT center. To my surprise, a real person answered the phone told me to hold on. I heard him say "gringo" in the background. Then someone came to the phone who spoke perfect English and told me that I could get a test anytime before 7 p.m. I got lost on my way to the center and was late but they gave me the test anyway. When they gave me the results, I only remember the first syllable, the same in English as Spanish, "pos."
The people at the center couldn't have been nicer. The man who gave me the test asked what I wanted to do after hearing the diagnosis. I said I haven't been able to sleep much over the past few days and that I would probably go home to sleep. He said that is something that depressed people do and that I should be with other people. He found that a group of HIV-positive people, Checcos, was meeting at a hospital across town and that the meeting was starting in about 15 minutes.
A volunteer at the center, Cesar Uribe Diaz, escorted me on the bus to the meeting. Less than an hour after being told I was HIV-positive, I sat in front of a group of about 35 people and said in broken Spanish that I was HIV-positive like they were. I said the words but still held out hope that it wasn't true. After I got the test results, the people at the center explained that it could be a false positive and that I would need a couple of confirmatory tests. They said that HIV treatment is free in Mexico, but later added that it was not free for foreigners. It wasn't until about a month later, after I returned to the U.S., and got the results from the confirmatory tests that I finally believed and accepted the truth.
What I remember most from that time in Guadalajara is the kindness of strangers. I still get a little choked up when I think about how nice the people were. I met for coffee and drinks a few times with Diaz, his boyfriend, his friends, and his mother. I asked his mother in passing if she liked cooking, she said she did and asked if I would come over for lunch. A couple of days later, she had a friend who owned a car drive over and pick me up and take me to her house. She made lunch for me and her friend and we took a ride out to Chapala, Mexico's largest lake, about an hour outside of Guadalajara, where we spent the rest of the day.
The Need to Talk It Out
I remember craving to be around other people. I accidentally left my backpack at Checcos after joining with the HIV-positive group on the night of my diagnosis. When I went back the next day to retrieve it, I sat around and talked with people there for a couple of hours. I met with the facilitator of the group, Raul Macias, a couple of times later to talk.
A few days after getting the test, I visited a friend who lives in a small town a two- or three-hour bus ride outside Guadalajara. The friend is HIV-positive but I remember that every time I started to tell him, I felt so physically sick, that I couldn't say the words. I wished that I had.
The first year after the diagnosis was extremely difficult but it was a great help being part of the UCSF Alliance Health Project's newly diagnosed group and with the support of Shanti and the Stop AIDS Project. My negative first experience with Kaiser quickly turned around. Kaiser nurse Ed Chitty was one most compassionate medical professionals I had ever met. The other Kaiser doctors with whom I worked were excellent.
I remember my hair falling out and I almost became bald from the stress after the diagnosis. I remember getting butterflies in my stomach every time I got another email from my doctor about more tests or procedures I had to undergo. I went to bed feeling scared and woke up feeling scared. When I didn't think of it for a few seconds at a time, then thought about it again, it was like the sensation of waking up from a bad dream. But instead of being able to reassure myself that it was just a bad dream, I had to accept all over again that it was real. A few times I remember thinking that I wished it was the bad old days and that I would just quickly get sick and die. I remember thinking that if I could adequately explain to people how bad I felt, they would not only practice 100 percent safe sex all the time but that most would be scared into celibacy.
I remember my hand shaking as I took HIV drugs for the first time in July 2011. I was terrified that I would have horrible side effects and worried that I had selected the wrong medication for me. I picked the Isentress and Truvada combination. It meant two pills in the morning and one at night. I felt awful for about 10 days and then had off and on headaches for about two months but now I feel fine and have no side effects.
Next: Guilt, anger, disclosure