Diagnosed With HIV and a Rare Brain Disease Twelve Years Ago, He Was Given Thirty Days to Live. Now, Terrence Gore is Defying Limitations & Healing Himself and Others Through the Power of Art
by Chip Alfred
Photographed Exclusively for A&U by Holly Clark
As a writer for this magazine, I’ve been sharing stories about people overcoming obstacles for nearly a decade. I’ve had the opportunity to interview dozens of advocates from all over the world—each of them with an uplifting story of triumph in the wake of trying times. Then, on the thirty-sixth anniversary of the documented start of the AIDS epidemic, I learned about a man who has inspired me like no other. As it turns out, I didn’t have to go very far to find him. Terrence Gore has been living two miles away from me all this time, just across the Schuylkill River in Philadelphia.
Actor/author Ben Stein once said, “The human spirit is never finished when it is defeated…it is finished when it surrenders.” Terrence Gore’s unflappable spirit has empowered him to never accept defeat and never ever surrender. This man has crashed through one stumbling block after another and turned them into stepping stones toward an unexpected, remarkable new path.
This journey begins at the PHILADANCO dance company in 2005. Gore, a professional dancer, was taking a class when he started to become disoriented. “I noticed this numbness in my toe that was really affecting me on one leg because I couldn’t really balance at that point,” Gore recalls. Soon he developed foot drop, the inability to lift the front part of his foot. He made an appointment with a neurologist, who ran a series of tests. At the bottom of the list was the HIV test, which came back positive. When the doctor gave him the news, he just thought, “Oh God, how am I going to tell my partner? How am I going to tell my family I’m positive?”
Gore kept his HIV status private for several months, until the numbness had ravaged his right arm. At the time, he was running a catering and special events company, and working as a hairstylist for entertainers. He knew he would have to tell his clients sooner rather than later. “After I finished my last client that month, I told her I was going to have to stop working for a minute because my right hand was out.” Gore says his clients knew him as a healthy, holistic guy who often shared his herbal remedies to heal their ailments. They all expected him to bounce right back, but that isn’t exactly how the next chapter of his life would play out.
A few days later, Gore remembers waking up in the middle of the night in a pool of sweat. “I was having an episode. I was losing my breath and I felt like I was getting ready to check out.” He managed to scream out for his partner, who rushed him to the hospital. The next thing Gore would remember was nine days later, when he woke up from a coma. After that, he underwent a brain biopsy, which confirmed he had Progressive Multifocal Leukoencephalopathy. PML, a rare and often deadly brain disease, occurs almost exclusively in patients with compromised immune systems, mostly people living with HIV. Symptoms of PML can include progressive weakness on one side of the body, difficulties with coordination, vision or speech problems, and seizures. According to the PML Consortium, an international research and development initiative, there is no cure for PML. If left unmanaged, the mortality rate is thirty to fifty percent within the first three months of diagnosis. When Gore was given his diagnosis, the doctors told him he had about a month to live. At this point, he had lost sight in one eye and was unable to speak, but he was perfectly capable of understanding everything that was happening. “I was hearing what the doctors were saying, but I was thinking, ‘That’s not going to be my story.’ He wasn’t going to accept a life expectancy based on other patients’ experiences. “I knew I was going to beat this.”
Gore didn’t get out of the hospital or that hospital bed for a year. “They were making me ‘comfortable.’ They’re thinking that I was going to probably die based on how PML has affected people,” he says. Then, his sight came back, and so did his speech. “I’m getting better,” he thought. “I don’t feel like I’m dying. I was bedridden because I couldn’t walk, but I’m going to get out of this bed too!” There was a recreational therapist who would visit him every day in the hospital, trying to spur his creativity, but he kept sending her away. One day, the therapist got an idea and brought some artist tools to help him decorate his room. Gore finally gave in and started sketching what he could see outside his window—Franklin Field, University of Pennsylvania’s iconic sports stadium. He would engage each of his visitors in the process, who would cut out a piece of a magazine and add it to Gore’s collage of Franklin Field. This turned out to be the first piece of artwork he sold, and the motivation he needed to get out of bed. At first, he needed a walker, then a cane to help him get around. With physical therapy, strength training, and a whole lot of determination, he is now able to walk without assistance, with just a brace on his lower leg to hold up his foot.
Gore says what happened in the hospital took him back to his childhood, when his mother first recognized his talent for drawing and painting. Although he loved these forms of creative expression, he chose not to pursue this path. He couldn’t see himself sitting alone in a studio working on the same canvas all day long. As a young man he lived life in the fast lane, traveling all over the world, planning upscale events, and hanging out with his celebrity clients. When he was confined to a hospital bed, he rediscovered that creative passion and found a new purpose. “I identified as an artist again.” He began working on the next piece, and the next. The work soon became a form of therapy, and the collection was growing quickly. “Every time I would start dwelling on what I lost physically, I would work on something new,” he says. “When I would succeed and execute the project, I was no longer sad.” As he was finding his voice as an artist, Gore heard about a special exhibition of African-American artists at the Philadelphia Museum of Art. The exhibit included works by Horace Pippin, a Philadelphia native who was shot during World War I and lost the use of his right arm. When Pippin came home from the war, he taught himself how to paint using his left hand. Terence was thinking, “Wait a minute, that’s my story.” Naturally right-handed, Gore trained himself to use his left hand for all his artwork, which now includes a tribute piece to Pippin.
Terrence Gore, now fifty-three, has been living in his West Philadelphia apartment/art studio for the past ten years. His home, which feels more like a mini-museum, is filled with much of his own work (and works in progress), along with objects of art he’s collected from all over the world. He prepares heathy meals, works out at a gym regularly, and takes dance classes. But for the past few years, he has been dealing with frequent seizures and recurring hospital stays. With the help of a PML specialist and a new medication regimen, Gore says the seizures seem to be under control.
Dr. Pablo Tebas, Gore’s HIV specialist at Hospitals of the University of Pennsylvania since 2006, recalls Gore’s first visit. “Terrence was not able to do the job that he loved to do, which was dancing.” Dr. Tebas tells A&U his patient was very worried and depressed, but he was able to reinvent himself as an artist. “He’s also a mentor, not only for patients with HIV, but for people with other chronic diseases—showing how art can have healing powers for them.” After a series of media interviews including an article in the The Philadelphia Inquirer, Gore set out to combine his story and his art in a unique way to heal others. In 2012, he began presenting a series of workshops called “The Art of Healing.” The workshops not only attract people dealing with physical challenges, but also emotional struggles. “There are healthy people who come to these workshops who have issues in their relationship or their marriage,” Gore remarks. “The whole creative activity can take them to a place where they can express themselves through the art and find a breakthrough.”
Gore’s breakthrough moment as an artist came earlier this year when a collage he created was selected to be included in “The Woodmere Annual: 76th Juried Exhibition,” which showcases outstanding artists in the Philadelphia area. The work, entitled Creating Beyond Limitations is a mixed media installation on wood, featuring imagery of Gore’s muse, Horace Pippin. Gore’s piece won the top prize at the exhibition in the mixed media category. When he received the notice that he won, he thought, “What am I going to do with this in terms of moving this forward with telling a story? How can I move beyond this and enlighten people, inspire people, and not just people with HIV/AIDS, but people who can’t get out of their funk, or even out of bed?” He decided that this was his ticket to the next level. This would take him closer to realizing his dream of having his own interdisciplinary healing center. “It would be interactive; you participate through sight, touch, sound, taste, and movement,” he explains.
“Healing is beyond just the physical or taking a pill. It’s beyond your mere thoughts. It’s about understanding there’s a spirit there before your brain can even think something,” Gore asserts. Dr. Tebas adds, “Terrence has this idea that a lot of health issues can be cured with art, and I think he’s right. The mind plays an important role in the healing process and he has found a way to channel all that energy into his art. For me, that defines him. His inner light is expressed through his art.” For now, Terrence Gore just wants to continue sharing his story, and the healing powers of creativity. “The story is about how I created the art. What inspired the art. What I was feeling when I executed the art. Then look what the art is now. That’s the story. I want to teach others to know that they have that within themselves.”
When I asked this visionary artist what else he sees in his future, the answer was simple. “I don’t see limits anymore,” he says with conviction. “I only see possibilities.”
For more information about photographer Holly Clark, log on to: www.hollyclarkphotography.com.
For more information about Terrence Gore: https://vimeo.com/31682255; www.fox29.com/good-day/259456287-video. For more information about The Woodmere Annual: 76th Juried Exhibition: visit: woodmereartmuseum.org/experience/exhibitions/the-woodmere-annual-76th-juried-exhibition. For more information about PML, visit http://pmlconsortium.org.
Chip Alfred, an A&U Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.