Derek Canas: Advocate

Text & Photos by Sean Black @ http://aumag.org/2015/09/03/derek-canas/

Raised along the golden marshes of the Brunswick River, just north of the Florida/Georgia line, Derek Canas’s life today is manageable, even good by his own admission but over the years it hasn’t been easy. Derek is, in fact, lucky to be alive. Now thirty years-of-age, the deejay activist stands five feet tall and weighs give-or-take 100 lbs. “I’m probably the most extreme version of an AIDS patient you’ll see since the nineties.” Behind kind brown eyes, his blunt self-assessment isn’t without merit. His slight frame wears the physical ravages of years of compromised health stemming from a birth defect that urgently needed to be corrected in 1985, which also exposed the infant to tainted blood.

“I was three months-old,” Derek begins in a calming, country-drawl speaking of his congenital heart problem. “During surgery and recovery, I required blood transfusions from the blood bank. Fifteen years went by after the procedures. I was sick constantly and was always the smallest kid in school. My family was told that I would always be little due to my heart. I didn’t find out about the virus until freshman year of high school.”

His friends growing up were gentler than most. “I was never treated differently, but during those years I only knew of my heart problem. Derek acknowledges the bullying that he was spared—a bullet that many other ‘different’ children with telltale health ailments haven’t been able to dodge. “The only rough moments of childhood were when I got sick every year with pneumonia or bronchitis and I was [medically] treated then released from the hospital.”

Looking back, Derek can see in photographs that he was taller than his cousin Morgan who is three months his junior, but the virus stopped him from growing and also created a curve in his spine. “I would have been fairly tall and normal weight if the virus had only been discovered earlier.” Derek’s resilience allows him to move beyond these blows and take them in stride today. “All of that on top of a heart condition that left me needing pacemakers—I’m on my fourth one now.”

His survival over those sixteen, undiagnosed years with the subsequent touch-and-goes of advanced disease progression, he credits to the level of nurturing that he still receives today from family members including both sets of grandparents.

Jim, Derek’s maternal grandfather, whom he lovingly refers to as Popop is a retired Marine Corps Captain who served in both Korea and Vietnam. “He’s the guy that I get some of my ‘old-man’ habits from,” Derek jokes with pride. “We go to lunch all the time and he is the person I would call when I was ready to leave the hospital. When you want to get discharged from the hospital quickly call a Marine they will get the job done!” Jim’s wife Shirley, Derek’s “Nanny,” ran her own beauty shop for over twenty years and has been Derek’s nurse, personal chef and his barber. “She is always trying to feed me,” he attests. “I try to refuse but I still get a plate set in front of me because she knows that I’ll stop resisting and eat just so that she can sleep easier.”

His father’s parents, Manuel and Lynette, also take special care of Derek. “I look exactly like my Grandpa. I call him ‘Future Me’ because I know he is who I’ll look like down the road. He is the person who taught me how to fish and who is always reminding me that I should pray as he is very active in the church.” Although Derek was instilled with Catholic faith and remembers hearing stories of a loving God, he skeptically admits, “After I was diagnosed, I lost my belief and notions of a caring God.” Lynette, “Granny,” also “pushes the food,” he notes with a smile. She drove a school bus when he was growing up and after her long shifts would work as the secretary for her husband’s business. “How she has survived working for him for so long I’ll never know,” he playfully ribs.

Derek’s parents, Charlie and Lesa, were both very young when they had him. His mother had just turned twenty-one and his dad was nineteen. Describing his motorcycle-riding father as a “daredevil,” Derek admits, “My father was extremely upset when I was diagnosed. I think it was because it made him feel helpless and he had to put so much faith in my doctors.”

His mother Lesa is his consummate angel. “She spent all three months when I was in ICU on the floor next to my crib. She never left my side. I think she always knew that I had more than just a heart problem, but my doctors would always ease her instinctual fears away until another issue was discovered.”

His little sister Amber, he says, “looks up to her big brother”—a title he takes very seriously. “My diagnosis really hurt her. I saw her change afterwards. Her taste in music veered toward very dark places and she always wore black. She’s moved beyond that and is now married and just awarded me a title of my own—‘uncle,’ which I’m so proud to have. No little girl should ever see her big brother constantly in hospitals.”

Grateful for his familial fortune, Derek currently deejays at Ziggy’s, a dance club on nearby St. Simons Island founded and run by Keenan “Ziggy” Carter, who sang and entertained in the early 1990s at the famed Rainbow Room in NYC’s Rockefeller Center. With the occasional out-of-town gig, Derek keeps the crowds hopping. His favorite style of music is dubstep and he likes faster, more upbeat styles of music same as his taste in cars. When we met Derek pulled up in a sleek white 2014 Camaro with black racing stripes. “Deejaying is a true escape for me,” he shares. “It allows me to be the character ‘D-REK’ who is popular and can just enjoy life. It’s truly a transformation when I go to work and become this other person. I’m no longer the AIDS patient—I’m the deejay and everyone wants to party with me.”

Derek just started an #EndTheStigma Campaign under his moniker D-REK because it is so recognizable now in his coastal Southern Georgia hometown. He hopes that his popularity will gain listeners and his efforts will expand into other surrounding areas desperate for outreach. In a report from the CDC, “At the end of 2010, the South accounted for largest percentage (45%) of the estimated 33,015 new AIDS diagnoses in the United States.

“The response to what I’m doing has been great. I have angels and warriors all over town.”

His mission echoes that of Treatment Action Group (TAG), the science-based think tank at the helm of policy and research initiatives. Jeremiah Johnson, TAG’s HIV Prevention Research & Policy Coordinator, recently came knocking on his door. “Treatment Action Group is thrilled to collaborate with Derek on our HIV Prevention Advocate Education Initiative in Georgia.” Johnson reports, “There is an urgent need for greater community involvement at the state and local levels to push for policy changes that improve access to the most advanced HIV testing technologies, PrEP, PEP, condoms, clean syringes, and all other essential tools that HIV negative individuals need to stay negative.”

He continues, “It is for this reason that TAG will begin convening state and city level workshops this fall to give HIV prevention advocates [like Derek] the information and networking they need to tear down barriers to comprehensive prevention services. Derek’s inspiring efforts to create change through his personal experiences represent the spirit of the project. We need passionate community members, both HIV-positive and HIV-negative, to translate their own experiences into policy change through advocacy.”

Derek feels his story is unique enough that he has the ability to “stop” people and get them to see how destructive the virus can be when not attended to. “I’ve accomplished one dream and that was to become a DJ. Now my dream is to be able to educate about HIV and promote testing. There is still so much bad information out there and once that is corrected then the numbers of new infections will hopefully drop. I would eventually like to have a one-man show where I can tell my story, on my terms and show my sense of humor and how laughter has gotten me through some very tough times.”
Derek shares one of these stories. “It was my first hospital stay after being diagnosed and I had this very young nurse who was training an even younger nurse. The trainee was going to start my IV. I have very easy veins and the poor girl slips and misses the vein and I proceed to bleed heavily. I grabbed gauze and tape as she took the needle back out. I soaked through two towels before I realized that I still had a tourniquet on. I grabbed it with my teeth to turn it off and stop the bleeding. That was my first night with the medical team that would help me get my health back on track.”

Derek can recall too many frightening times with clarity along with the isolation he felt. “Like, no one could really understand what I was going through. It was really difficult. I thankfully had a few friends who were there for me [along with family] who kept me moving forward and didn’t allow me to isolate. The meds were intimidating at the beginning. I was on twenty-two pills four times a day. I was fifty-five pounds when I was diagnosed. My body was shutting down—I had wasting syndrome. I was thankfully able to rebuild my immune system and I became undetectable in just under three years. I’ve died three times over the past thirty years—all during heart procedures but I always come back. I don’t know why but I do know that I am committed to leaving this place a little better.”