Lessons From the Real Me
June 7, 2023
This remembrance is excerpted from a forthcoming book by HIV awareness activist Willnette Cunningham.
It is being prepared in collaboration with Shruti Sathish, editor.
My life began in 1950 during a snowstorm. As Momma peered through the living room window in search of the taxi, she feared that she would give birth to me at home. It was nighttime and the dim yellow street lights illuminated the thick snowflakes falling from the sky.
“Will I be able to reach the hospital in time?” she thought to herself.
At the time, she and Daddy had been dating, and both lived with their parents in the Carver Neighborhood in Richmond, Virginia, an all-Black neighborhood known for its two-story homes and flats, which were brick housing complexes that resembled today’s townhomes. Highway 95 came through part of our neighborhood in the later part of the 50’s and the neighborhood was redeveloped shortly afterwards, so many of the flats no longer exist because they were torn down to make way for new housing developments.
Like many of their neighbors, my grandparents did not own a telephone or a car at the time. So, Hilliard Shelton, a family friend, had gone to the main street to flag a taxi. None of them had even considered calling an ambulance; they were, after all, living in Carver. The Carver Neighborhood frequently appeared on the nightly news that most people listened to on the radio, and it was labeled a “high crime” neighborhood due to the frequent shootings, robberies, and other violent activities that took place. Even though Black neighborhoods weren’t the only ones with crimes, the crimes were reported more in our neighborhoods than they were in others. We were just not getting the same treatment due to our race. As a direct effect of the discrimination, the ambulances never came to the Carver Neighborhood in a timely manner. The emergency personnel were probably also worried about their safety.
As Momma continued to look out the window for Hilliard, Daddy and my grandmother shuffled around our home in search of the items that they would need to take with them to the hospital. My parents thought I wouldn’t arrive for another couple of weeks, so they had not packed a hospital bag. But many things in life don’t go the way you expect, as I came to learn in later years. I was going to arrive shortly.
Suddenly, my Momma clutched her stomach and winced. Daddy rushed over to hold her hand and soothe her. Contractions were getting closer and labor pains were becoming more intense. Momma tried to convince herself that she would be delivering a baby at home; I was impatient.
Suddenly, the front door flew open and there stood Hilliard. “Come on ya’ll! I finally got a cab!” he yelled, and together, he and Daddy helped Momma down the front steps and into the yellow taxi that had just arrived at our home on Axtell Street.
We were soon on our way to St. Philip Hospital, the Medical College of Virginia’s segregated hospital for Richmond’s Black community, for my birth. Momma was getting closer and closer to delivering me, and Daddy had to sit on her legs during the taxi ride to keep me from coming out.
I, Willnette D. Jones, joined the world within minutes of them reaching the hospital that night. I had no patience, and that would prove to be the main source of my adversities in life.
A big turning point in my life was hearing Magic Johnson’s news conference on TV in 1991, where he announced to the world that he had tested positive for HIV. That made me think that I too needed to be tested.
In September of 1991, I started dating a man named Lee who would later become my fiancé. God spoke to me two more times, urging me to get tested, and I finally made up my mind in late November of 1991 to see a doctor because I did not want to unknowingly spread the disease to Lee.
When I went to get tested, Dr. Minor, who was a white man, said, “You are not a gay white man, and you do not do intravenous drugs. Why should you get tested?”
He did not want me to take the test because he was confident that I did not have the disease. But I was adamant about getting tested. I knew something was wrong, and I needed to know the results. I talked my doctor into it by using the example of Passover from the Bible.
I asked him, “When was the last time you heard a disease affect only a certain group of people? Wasn’t it during Passover? Wasn’t it God’s doing?”
He then said, “I had never thought about it that way. Okay, I will do your test.”
The days dragged on as we waited for the results. Dr. Minor called by the end of the week.
“Is there someone that you could bring with you to my office now?” he asked me on the phone. “Someone that you trust,” he added.
I called my friend Denise and asked her to go with me. Once we got to the clinic, we were taken to Dr. Minor’s office.
“Please take a seat,” he said.
We sat down. My chest was tight, and I felt very anxious. I could sense that Dr. Minor was going to give me bad news.
“I had them run your test three times because I couldn’t believe it. You have tested positive for HIV,” he said.
My mind went numb. I thought I was mentally prepared for my doctor to tell me about the disease. However, the entire time Dr. Minor was talking, all that was going through my mind was, “I’m going to be dead in six months.”
I saw my life flash before my eyes, and a few tears escaped. Denise rubbed my back, trying to comfort me. I regretted waiting to get tested. People were dying, and it was entirely possible that I would too. On my way home, I didn’t even make it two blocks before I broke down crying. Even though I was shocked and scared, I never once thought, “Why me?” I simply accepted that this was the journey in place.
Denise also said to me, “I don’t believe that God is going to let you die.”
Dr. Minor told me that I would have to wait to get treatment. The Medical College of Virginia (MCV) was one of the only places in Richmond that was treating HIV patients, and getting into the treatment program was difficult because I was seeing a private doctor and was not already a patient at MCV. The reason for this was because of the long wait times at MCV; I could get fired if I missed a lot of work, so I chose to have a private physician as my gynecologist so I could be in and out of the office quickly. However, the woman in charge of entering people into the HIV program at MCV gave priority to those who also saw their primary care doctor at MCV, so I had to wait a while. Even though I had to wait, I felt some sense of hope that I may survive because Dr. Minor informed me that they had just changed the formula of the anti-HIV medication, called AZT. Previously, the AZT was too strong for many people’s bodies.
That same day, I told Lee my results. “I think we should go separate ways,” I said to him.
Even though I loved him, I did not want to become a burden to him. However, he surprised me and said, “I won’t break up with you just because you’ve tested positive. Let’s continue dating and see where our relationship goes.”
Two months later, I attended my first appointment with Robert Higginson Jr., a physician assistant, in January of 1991 at the Medical College of Virginia, which would later become Virginia Commonwealth University (VCU) Health. I remember feeling scared, uncertain, but mostly relieved to finally be receiving treatment.
At my first appointment, I remember telling Dr. Higginson, “I would like for you to talk to me in layman terms,” so I could understand everything he was telling me throughout my treatment. I didn’t have much medical knowledge.
I quickly became comfortable around Dr. Higginson, and I began calling him by his nickname, Bob, during my second or third appointment with him. I consider Bob Higginson my brother, not just my health care provider. We have been through a lot together these past thirty years, and I have called him in times when I’ve had questions about the disease. He has always given me the best advice.
In 2005, Dr. Bob Higginson asked me if I would speak about my experience living with HIV/AIDS at a program for the anniversary of a patient of his who had passed away from the disease and had attended Cedar Street Baptist Church. I agreed. I remember walking up to the mic and hearing some light chatter.
I gripped the microphone and began with the words, “I am the face of AIDS.”
I saw a little boy who looked about five years old sit straight up and put his toys away when I said the word AIDS. I looked across the aisle and saw a grown man who had been slouched in his chair straighten up too. Everyone got quiet. At first, it unnerved me. When I saw that, I thought to myself, “They know those words. And maybe, what I’m about to say will help them navigate through the world we are living in.”
Every time I have spoken at a church since then, I have gotten people’s attention; I have been told that I have a voice that demands attention. I’ve realized that you never know who is watching, listening, and what they will take away from what you say. While this was my first time giving a public speech, I knew that it wouldn’t be my last.
Soon, Bob Higginson started talking to me about HIV retreats. They were called “Transformation Retreats” and were founded by him and a group of other experts in the medical field. HIV retreats were four days long and often took place at Catholic retreat facilities. What I discovered was that there were many of us living with HIV/AIDS from all over the United States and of a variety of ethnic backgrounds. People came from as far north as New York, as far west as California, and as far south as Florida.
At the first-timers Transformation Retreat, we made quilt panels to recognize that we were a part of the HIV/AIDS community. This concept was modeled off of the tradition of AIDS quilts in Washington D.C. that began in 1984. Each survivor made their own panel, and there were church members who would sew the panels together to make the quilt. The quilts were hung at each HIV/AIDS retreat. It was an amazing feeling to see your panel amongst those of other people, many of whom have passed on since then. The panels represented our presence at the retreat, and when one of us passed, a white butterfly would be sewn onto the panel. There was also history sewn onto each of the quilts; they were marked with the date of the retreat.
At the retreats, we also learned about the statistics of the disease and heard others’ life experiences with the disease. On staff, there was a nurse, a few doctors, other HIV/AIDS professionals, and volunteers. The retreats were such an inviting place, and I discovered that there were many people going through the same experiences as me.
The Transformation Retreat program added a prison program called the Livin’ It Project a few years after I started attending retreats. I helped with the prison program, and we would work with people at the Chesterfield Diversion Center for Women, which was nearby in Chesterfield, Virginia. We led a 9-week educational class on Tuesday nights where we gave incarcerated women information about a variety of topics, such as STD’s, STI’s, HIV/AIDS, condoms, and what to look out for when having sexual relations with a partner. We also provided them with sex education reading material and tried our best to motivate and inspire them to lead better lives. At the end of the program, we had a graduation ceremony where we handed out certificates that the participants got to take with them.
During my involvement in the Livin’ It Project, I realized that there were many women serving time for men. Although they didn’t commit the crime, they agreed to go to jail in place of their supposed boyfriends or husbands because their sentences would be shorter. Being me, I couldn’t let that go without saying something. What I told them was that while they were losing time with their family – most of the women had children – the man was likely with some other woman, and that was true. I’m hoping that the education we gave them helped them one, change their lifestyles and two, want better for themselves and their children. We also gave the women information on how to find out about the provisions available to them, in terms of jobs, housing, and food, so that they could pick themselves up once their sentence ended.
While I was involved with Transformation Retreats and the Livin’ It Project, I also started attending the HIV/AIDS support group at Virginia Commonwealth University (VCU) Health. The women’s support group, which was officially called Tea Time for Women – we couldn’t officially use the word ‘support’ since there was not a therapist present – started at the VCU Infectious Disease Clinic in 2010 by two of VCU’s employees. We would meet once a month on a Tuesday afternoon for a couple of hours. There was a nurse present who helped start the group, and she would answer any medical questions that the women had and also provide resources for people who were seeking assistance with things like food and housing.
The group initially was small. There were only six of us when I joined, and we would meet in an old storage room at the clinic. The group started becoming larger once more women found out about the program; the nurses would often stop by during our meetings and introduce us to new patients who were interested in joining. We then started meeting in a conference room that held around twenty people.
The women’s group was much needed because it gave us all a space to talk about topics that we did not feel comfortable discussing in the presence of men. I became the natural leader of the group when the nurse was very busy with her duties in the clinic and could not be with us. Some of the women would call me ‘momma’, and they told me that I inspired them. I quickly realized that I had the important job of helping women feel comfortable enough to attend the meetings. As I had learned from talking to women at the retreats, not everyone who is diagnosed with the disease has a family that was as accepting as mine.
One of the women in the group actually struggled to attend our meetings because she thought that it would be best to isolate herself. When she was diagnosed, her family had ostracized her, causing her to withdraw from them and develop severe depression. Early on, I had to call her and beg her to attend our meetings. When she came, she realized that there were many women who were looking forward to seeing her. She finally felt valued.
She said, “I am so grateful you all asked me to come. Seeing everyone has brought me so much happiness today.” Even though these meetings have stopped in the past few years due to the pandemic, I am in touch with many of the women and we speak over the phone regularly. These are relationships that I know will last a lifetime.
Willnette Cunningham is the recipient of a 2023 VCU Publishing Research Award.