Doug FergusonDecember 1996
Editor's note: Following are the installments from a three-part series which culminated November 30, 1996, one day before World AIDS Day.
I was 23 the day my world came crashing down around me. Like many young people I knew, I had begun to think that my world would be just fine without letting anyone else inside -- even my parents. It's not that I didn't care about other people, or even love them. I just didn't want to rely on them. Needing people was a sign of weakness to me. It was a weakness I thought I had overcome -- until that day.
The middle-aged nurse sat across from me in an overcrowded office. Inspirational posters littered the walls behind her with cute pictures and encouraging phrases. "Hang in there!" one of the posters yelled at me. A small kitten struggled to keep its balance above the words, one paw wrapped around a fence rail.
The nurse rifled through a thick notebook and made small talk. Every once and a while, I would grunt in response, but my attention was focused on the book. Long numbers crowded the pages from top to bottom. Each was followed by a single word. Over and over again, I watched the word "negative" flash by.
Finally, she arrived at the page. Running her finger down the list of numbers, she stopped about halfway through. She looked at the small card I had given her, and she looked at the page again. Her finger blocked the word I was waiting to see. But from the look on her face, I knew what it said.
"It's positive," she said.
Eventually, I would learn to joke about that word "positive." Even on my worst days, now, I can say that I have a "positive outlook." When someone asks me if I'm sure of something, I can answer that "I'm positive," and they still won't know the answer. But on that day in the summer of 1994, the word "positive" stopped me in my tracks. For the first time I could remember, Doug Ferguson didn't know what to say.
"Wow," I said. Profound, huh?
Watching me closely, the nurse began reciting a litany of information intended to convince me that all was not lost. She spoke of new medications and the need for prompt treatment. She encouraged me to get tested again in case a mistake had been made. She gave me the phone numbers of local support groups and said that it would help to talk things through. I really didn't hear much of what she said.
I gave the nurse a weak smile as I stood to leave. Still wearing my suit from work, I got on my bike and pedaled the short distance to my apartment. I must have been quite a sight as I wove through the streets of Provincetown -- an oversized guy talking to himself and fighting back tears. It was on that ride to my apartment that I realized how alone I was in that town. My parents were more than 1,000 miles away.
Before I received my test results, I had been fighting off what I thought was the flu. The lymph nodes in my neck had swollen to the size of golf balls, and my fever reached 102. But my illness took on a whole new meaning after I learned I was HIV positive. I convinced myself that -- despite the nurse's assurances to the contrary -- I already was suffering from the onset of AIDS. And although my roommate did his best to comfort me, he had trouble penetrating the wall I had built around myself. It was a wall that would come tumbling down over the next several months.
Even though the physical manifestations of HIV I was experiencing soon went away, the emotional side effects were only beginning to take hold, and it became difficult for me to deny my need for other people. Although I have met some folks who are able to bear the burden of HIV without leaning on their friends and family for support, I wasn't to be one of those folks. Whether you call it a weakness or human nature, I always have felt the need to lessen my burden by sharing it with others. And as the summer of 1994 drew to a close, I began to dismantle the protections I had taken years to construct.
Before that summer was over, I began to open up in ways I had refused to in the past. I'm sure I told some of my friends much more than they ever wanted to hear, but I always felt better for the telling. My "weakness" definitely was returning, but for some strange reason, I felt much stronger with it back. Was it possible that needing other people wasn't such a bad thing after all?
Perhaps. But even as I tore at the walls that surrounded me, I tried not to recognize the one need that remained unfulfilled. Although I thought of my parents countless times that summer . . . although I picked up the phone more than once, needing the reassurance and comfort that only a mother could give . . . I fought the urge to share my burden with the people I loved the most. That, my friend, would come another day.
If there was a good place to find out about my HIV status, Provincetown, Massachusetts was it. Although the tourism office likes to tout Provincetown as a Portuguese fishing village and as the first landing site of the Pilgrims (that's right . . . it wasn't Plymouth Rock), the town is now a haven for artists and other creative types. And -- as is so often the case -- where the artists go, the gay folk soon follow. Or am I being redundant?
Like a Key West of the North, Provincetown is now no more a Portuguese fishing village than is Las Vegas. It's a thriving gay resort, a small town where it is acceptable for gay couples to walk hand-in-hand down Commercial Street. Although most of you may take holding hands in public for granted, for us gay folk, it's the most liberating feeling in the world. That's what makes Provincetown unique -- it's more wide open than the Castro.
But like the inner cities, where gay folk form mini ghettoes to find strength and safety in numbers, Provincetown has been hit hard by the AIDS virus. Even before I found out about my HIV status, I had watched friends die in that little town. I also knew of several HIV positive folks living there, including my roommate. So, when I found out I was HIV positive, there was a natural support system already in place. That's why I dreaded going back to Chapel Hill.
For three months, I had lived in the gay version of Disney World. But once August rolled around, it was time for me to return to Helms country -- the gay version of Hell. Don't get me wrong, Chapel Hill isn't like the rest of state. There is a tight-knit gay community here, and I knew that once I returned, I wouldn't face my struggle alone. But Chapel Hill is no Provincetown, and I secretly wondered how I would hold up without the expansive support system I had grown accustomed to in that little gay resort.
Times were tough when I returned. I suffered in relative silence for several months, sharing the news about my HIV status with only one or two people. And even though they tried to be understanding, even my gay friends down here didn't know how to treat the information. Most folks who die from AIDS in the South do so quietly. Too often, they slip away in silent shame, so that even the gay community doesn't know where they've gone. Their obituaries share in the subterfuge: "He passed away after struggling with cancer . . . pneumonia . . . a long illness." For most of my friends, I was the first person they knew with HIV.
As my spirits fell, so did my grades. Law school is a very competitive environment, where any form of weakness can result in a quick decline. And as the semester drew to a close, it became more and more difficult for me to escape confronting the virus that consumed me. The first exam I took that December was in Trusts & Estates. The first question on the exam dealt with a gay man's inheritance difficulties after his life partner died from AIDS. I stared at the question for what must have been an hour before I struggled through it and the rest of the exam. It was the lowest grade I have ever received.
I went home for Christmas determined to keep a smile on my face. I had yet to tell my family about my status, and I wanted this to be our last holiday together without the pall of HIV hanging over our heads. But as we sat together, holding candles at a Christmas Eve service, I wasn't able to sing the words of "Silent Night" with the rest of the congregation. I knew that my trembling voice would have betrayed the fact that something was wrong. And the next day, as we tore open presents in the front of the fire, I made sure my parents got at least a few pictures of me. I didn't know how many more Christmases we would have together.
I had wanted to be strong for my parents when I told them. I knew they would need a shoulder to cry on, and I wanted mine to be steady. I also wanted them to know that I was doing all I could to fight the virus, seeing a doctor regularly and taking care of myself. So I had waited for six months before I felt the time was right. I knew that once I returned to Chapel Hill, I would be entering the hospital for two weeks to begin an experimental drug treatment program -- and I knew it would be too difficult to conceal this from my family. After spending two hours with my minister, struggling to determine the best way to tell my parents that they might very well outlive me, I laid the groundwork for the next day.
When my parents left for choir practice the next day, I built a fire in the den and bought a bottle of wine. Sitting there with a friend, I agonized over what was about to occur. At my church -- half-way across town -- my parents were sitting in a room with my minister, learning that their son had HIV. I had decided with my minister that, although I couldn't deliver the punch, I could be there to pick up the pieces. I couldn't watch their faces as they first learned about my condition, but I could be there to hug them after they got home.
I sent my friend away and waited downstairs for the first sounds of my parents arrival. The front door opened and closed, and soft footsteps fell upon the stairs. At the first sight of them, the strength I thought I had quickly left me, and I rushed for the embrace of my mother's arms. We had a lot of healing to do.
The drive back from Charlotte following Christmas break was a grueling one. After spending a long night with my parents -- talking and crying together -- I felt drained and empty as the interstate signs flashed by outside.
Once again, I was headed toward Chapel Hill and an uncertain future. But instead of attending the first few days of classes with my friends, I was scheduled to check into a private clinic for two weeks. Once there, I would become a guinea pig -- one of around 20 participants in a trial designed to test an experimental drug.
I'll never forget the feeling I had as I pulled up in front of what looked like any other office building near the airport. Lugging two weeks of clothing in my bag, my heart raced as I entered the sterile environment of the clinic. I looked around at the other people who were gathered in a cluttered room that would serve as a makeshift lounge. Although most of the patients were older than me, their eyes betrayed the same feelings of nervousness and anticipation that I was experiencing. These people would become my neighbors -- and my family -- for the next 14 days.
After undergoing a series of blood tests and having my bags searched for drugs or alcohol that could distort the study's findings, I was ushered into the sleeping quarters of the clinic. Although I had expected to stay in a semi-private room, what I found were several sets of bunk beds that were stacked in cramped rows. I resisted the urge to turn around and leave that ugly place, which looked more like a prison facility than any hospital I had ever seen. What had I gotten myself into?
For the first time since I learned that I was HIV positive, I began to feel like I was truly sick. A blue tag around my wrist identified me as CDF #708. A nurse told me to get used to my number -- it would be used, instead of my name, to keep track of my vital statistics as the medical trial progressed.
I felt less and less like a human being as the days dragged by. We were awakened at strange hours of the night to be poked and prodded. Vial after vial was filled with our blood. Our wake-up call came long before the sun arose, and we competed for the first showers, which were the only ones that had hot water.
The worst part by far came at meal time. Breakfast and dinner were timed meals. We were called by number and told when to start and finish eating. Our plates were checked to make sure we had finished everything, since our medication was supposed to be taken with food -- if you could call it that. Our meals were followed by a dose of the worst tasting substance I had ever swallowed.
The medicine didn't have a name, but was called ABT-538. It was a golden liquid that was part of a line of promising new medications known as protease inhibitors. But despite the fact that the medicine might prolong my life, it was tough to keep swallowing the stuff that tasted like petroleum with cherry flavoring. Its side effects included fatigue and stomach problems which, in and of themselves, would have been enough reason for me to give up and go home. Perhaps the only thing that kept me going was the company of the other people in the study. We all were in this together.
It took me awhile to feel comfortable with the people who surrounded me. Most of them had been positive for several years, and many had stopped working to go on disability. I felt different from them. I was younger, and I had no intentions of letting the virus keep me from completing law school and achieving my goals. But at the same time, although we came from different backgrounds and had different ways of dealing with our illness, there was no escaping the fact that we all had the same virus. That -- and the fact that we were stuck together for two weeks -- slowly brought us all together.
Every time I take the medicine now -- almost one year after I left that clinic -- I remember the look on Tommy's face when he was forced to swallow the stuff. Tommy and his partner, Dale, were both from the country and spoke with heavy Southern drawls. Tommy became particularly animated when vials of that thick golden liquid were wheeled into the lounge.
There was also Gwen, an African-American teacher from Charlotte who had left behind several young children to grasp at the hope of this new medication. And Ron, who lived only a few weeks after our confinement period ended. The first signs of pneumonia were already surfacing on the day we all left. Ron had said that his main hope from the medication was that he would help other people down the road who might benefit from the information the study would reveal. God bless you, Ron.
And then there was Bobby -- a hippyish man from Wilmington who believed in the healing power of nature. He's the one who convinced us all to sit in a circle every day to share our hopes and our concerns. I guess Bobby is the one who really brought us all together.
It's amazing to me that so many different people -- gay and straight, black and white, men and women -- were able to find friendship under such stressful conditions. But it did happen. After the two weeks had passed, I discovered that I wasn't so different from these people, after all. Although I was often miserable in those two weeks, the experience is one that I will cherish for the rest of my life.
In writing this column, I have tried to talk about experiences and emotions that many of you may have had at least one point in your lives. You may not relate to everything I say, and you may question me or even blame for my illness, but if you have found one thing that has made you understand me and relate to me and others suffering with HIV or AIDS, then I feel I have begun to accomplish my goals in writing to you every week.
There is no denying our differences and the many walls that divide us. But there is also no denying that AIDS doesn't care who we are, what we look like, or who we love. It's an equal opportunity disease, and I hope that -- by sharing my experiences with HIV -- I have begun to open your eyes to this fact. Maybe if you see some of yourself in me, you also will understand that HIV threatens you and the people you love the most.
Remember . . . I used to think I was different, too. I used to think that, although I had seen friends die from AIDS, it was something I never would have to face. Now, I'm suffering the consequences. I'm not so different, after all. I'm not invulnerable. Are you?