Three Letters That Changed Everything

women and HIV 1990s
At last, the doctor cleared his throat and said, “Your HIV test came back positive.”
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With ten minutes to spare before my appointment at the student health clinic, I pushed up the sleeves of my gray wool sweater to feel the sun on my skin. It was the 26th of February, typically cold in Missouri, but that afternoon felt like spring. I sat on the wide stone steps near the Sociology building, and allowed my backpack, heavy with books, to slump off my shoulder. Other students were exiting the building behind me, bouncing down the stairs toward the parking lot. By now the campus felt like home. With graduation only a few months away, my Master’s degree in sight, I felt a pleasant mix of freedom and optimism.

Upon entering the student health clinic I spotted Edda, the clever woman with the short red hair and thick German accent, who had drawn my blood two weeks earlier. She had kept the long line of students, waiting for their blood draws, laughing with her irreverent humor, including me and my three friends. It had been a jovial atmosphere. My friends and I joked about what we would do if our test came back positive. My flippant answer was that I would backpack across Europe.

Today Edda seemed solemn as she led me to a conference room containing a large table surrounded by blue, cushioned office chairs. The room was dim with slats of bright light shining through the blinds giving it an odd twilight zone effect. The formally exuberant Edda wasn’t talking; the awkward silence brought out my shyness. I looked around the room.

 As if reading my mind, she said, “We’re waiting for the doctor.”

 She seemed tense, which made me impatient, ready to get back out to the sunny afternoon. This appointment was supposed to be a quick detour; get my test results, head back to my apartment, attend an evening class, and later have some friends over as my roommate and I often did. Edda and I waited in silence.

A few minutes later, a man with a round face, wearing a white jacket entered the room. He sat next to Edda, across the table from me. His face was kind, his demeanor quiet. I noticed that his large blue eyes started to tear up as he looked directly at me. Edda’s eyes were watery too. My curiosity piqued.

At last, the doctor cleared his throat and said, “Your HIV test came back positive.”

Time stopped. The doctor’s statement was like a surreal unintelligible sentence as if he had said “look at that cow walking through the room.” My mind was trying to process his words. “Positive”’ my test is positive. His mouth was still moving but he seemed far away now, my mind receding into a tunnel. I didn’t hear much else, other than some well meaning admonition about keeping this to myself, for my own safety. I sat perfectly still with a blank expression, no visible reaction, except that I noticed my hands would not stop shaking. Once the meaning of his words registered, I knew the test result must be a mistake. I felt bad for upsetting these nice people. Still, my hands would not stop shaking; I kept them hidden under the table.

Edda said my calmness worried her, that she would feel better if I threw a chair through the window. I had always kept my emotions in check in public. But this doctor and nurse did not know me. They saw a petite young woman, wearing blue jeans, with shoulder length blond hair looking back at them with quiet confusion.

I took in a breath, exhaled and stared down at the table, “No, the test is wrong. You have to do the test over?” I shook my head, “This can’t be right.”

“We will repeat the test but there is a 99% chance that it is correct.” 

My certainty that the test was wrong seemed to make the doctor almost doubt it too. “If the test is wrong, we’ll take you out and buy you a beer.”

He went on to tell me specifics about the tests, mentioning words I’d never heard before like “Western Blot” and “Eliza.” He told me to return in two days for the result.

Edda’s shaky voice asked, “What will you do when you leave here?”

An automatic response escaped my lips, “Drive.”

Edda drew my blood as she had done two weeks earlier. As I walked outside, the warm sunshine that I had enjoyed on the steps an hour ago, a lifetime ago, now seemed oddly misplaced for such an inauspicious day. Blood seeped out of the side of the band aid now covering the spot where the needle had entered my arm leaving a new red stain on the inside of my favorite sweater.

During the two days that I waited for the final test results, I drove for hours on two lane country roads thinking about how I would tell my mother, my grandparents, and my friends. When I got home, I did tell my roommate who was also my best friend. We cried and hugged. It was as if I was in a nightmare but it started to sink in that the test was probably right. I plotted my suicide. My plan was to drive west to Colorado and drive my car off the side of a mountain.  It seemed impossible that the rest of the world was going on as if nothing had changed, when everything had changed for me. Still, I held out the tiniest bit of hope that this was just a close call, a warning, a wake-up call to be more careful.

A couple of days later, I learned that the test was positive. The year was 1992, and I was given three years to live. I felt like I had been thrown off a ship in the middle of a stormy sea, flailing in the tall waves as I watched the rest of the world sail away. I told a few close friends and they were supportive, but there was a gulf between us. They were planning their futures and I was grappling with the idea that I no longer had one. I was paralyzed by fear; images of dying, skeletal men with purple lesions covering their bodies, struggling for every breath, haunted me. I had never felt so profoundly alone.

Facing the fear, shame, and stigma seemed impossible. This was a time when people feared being in the same room with a person with HIV. I made the decision to try to live with this unwelcome change. One of the first things I had to do was meet with a person from the government to discuss who I may have infected. In walked a very pregnant woman, who it seemed, belonged more in a PTA meeting than in a student health clinic talking to me about who I had had sex with in the past seven years. I was twenty-four so that pretty much covered my entire sexual history, which wasn’t vast or unusual in the context of my college aged friends but seemed shameful in the presence of the health department official.

The thought that I may have ruined someone’s life because they had been intimate with me was unbearable. It made me feel contaminated. Thankfully, I did not infect anyone. In time, I figured out that I had gotten HIV from a boyfriend when I was a freshman in college. He was the fourth person I had slept with. My anger at him soon faded as I thought of how I could have unintentionally infected someone just as he had done. I learned the power of forgiveness.

Though my prognosis seemed certain, I dared to hope. Stacks of books filled my room as I educated myself on my new disease. Since I had no insurance, I had to go to a community health clinic, an hour away, in a run-down part of the city. It was chaotic, confusing and crowded but I got started on AZT, the only medication available at the time. Four years later, the protease inhibitors that brought people back from their death beds would be on the market. Even when all seems hopeless, hope anyway. You never know what could be around the corner. I learned the power of hope.

Gradually, I became more open about my diagnosis. After five months, I finally told my mother and other family members. I wanted to be strong enough to be there for my mother before I told her, but she found her own strength. Years later, she would stand up to critics and institute an HIV education program at the rural school where she was a teacher. Eventually, I met other HIV positive women and became part of a community. Most of the women I met had gotten HIV from boyfriends or husbands, and many did not fit the negative stereotype that still exists today. Regardless of our differences, the common experience of having HIV and all that goes with it, bonded us deeply. I learned the power of connection, of the words, “me too.”

With those lessons and a strong spiritual faith, I learned to live again. The most meaningful work in my life has been to help other women with HIV. Helping others, helped me. Decades into the epidemic, there is still stigma, fear and ignorance around this disease. Ironically, the health problems I have had, are from a disease unrelated to HIV. One that receives little attention, few research dollars, and carries its own stigma, ME/CFS, (aka Chronic Fatigue Syndrome). In fact, if I could be cured of only one of these two diseases, I would choose to be cured of ME/CFS. As I approach my fiftieth birthday, I feel a sense of gratitude for the years that I wasn’t supposed to have. I reach for my husband’s hand and think of the sweet memories we have made together and the adventures we are planning for the future. I reflect on how most of us have had or will have experiences that unexpectedly turn our lives to rubble. If we are lucky, we emerge wiser, stronger, and more compassionate. I could have gotten here a different way, but this was my journey.

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