Ithaca, New York
Positive since 1992
I was born in 1992, when HIV was still pretty fresh and scary. My mom had contracted the disease sometime between 1981 and 1988 (between the birth and conception of my two older sisters) through one of two unsafe practices: sharing needles (she was a heavy heroin user until 1988 or ’89) or having unprotected sex. I contracted it from her in infancy.
I grew up pretty poor, and I don’t remember ever not being on welfare, food stamps, or section 8 as a child. Looking back now, I recognize that my mom was severely depressed and emotionally detached, and wasn’t ever really able to pull herself out of that. But she did do one thing perfectly: She loved her kids with everything that she had. She was affectionate, kind, cheerful, involved, and she treated us like intellectual equals. It is for these reasons that I have nothing but fond memories of my early childhood.
My mom died of progressive multifocal leukoencephalopathy (PML) due to AIDS on January 23, 2004, at 41 years old.
That was when I first wanted to die. I was 11.
After my mother’s death, I fell under the guardianship of an abusive, neglectful woman for almost five years. That was when I was first taught that I wasn’t good enough. It was also when I first learned to hate myself.
At about 13, I began spending quite a bit of time with a family I’d known for most of my life, and eventually opened up to them about the abuse that was taking place at “home.” They very quickly began the process of fighting for custody. It took a few very messy, confusing, and terrifying years, but when I was about 16, they finally won. They became my family.
I felt safe and loved for a while, but I soon started to realize that I was a black sheep. I wasn’t raised in conservative Christianity, and they were. I was very obviously gay, and that wasn’t OK with them. I was intelligent, curious, and creative, and they just weren’t. I started feeling like an outsider. I had gone through intensive therapy to overcome the trauma and abuse I’d endured, but it was as if I had traded that pain for a new kind of pain. I became depressed and detached, and gradually fell into a spiral of self-loathing and escapism. I began self-medicating: drinking, smoking weed, taking Oxycontin. (My dad had sustained a severe back injury and was on high doses of it, so I’d take his and cut them into smaller doses). I was high most of the time.
I think now is probably a good time to mention Camp Dreamcatcher. Dreamcatcher has been a huge part of my life for a long time. It is a nonprofit organization dedicated to providing free year-round educational and therapeutic programs for kids, teens, and young adults living with or affected by HIV and AIDS. I started as a camper when I was 5 or 6. I helped to found the Speakers’ Bureau at about 14 (I do a lot of public speaking, mainly involving education and my story), and have been a counselor since 2008. My camp family is one of my strongest support systems, and I honestly don’t know where I’d be without such beautiful, compassionate, supportive people in my life. And now, having the opportunity to be that support for other campers brings me so much joy and fulfillment.
One night when I was about 19, I was lying in bed, sober. I hadn’t been completely sober in a while, and I didn’t want to be. I realized that I felt like I couldn’t take it, and I knew I needed to reach out for help.
I was always the good kid. I was always the strong, astonishingly resilient kid who was known for not engaging in that sort of behavior. To ask for help meant that I had to admit I wasn’t perfect, and that was hard.
I reached out to a good friend I’d known for quite a while through camp, a therapist who knows a good deal about addiction counseling. I told her what was going on and she stayed up talking with me well into the night, helping me to reach some conclusions and make some important decisions.
I decided to stop self-medicating, but I didn’t actually start dealing with my issues. So I went from one form of escapism to another: shutting down emotionally. I just stopped feeling.
Three summers ago, I couldn’t cry.
We have a tradition at camp called the Wish Log Ceremony. Everyone goes in search of a log. Once found, you can decorate it (or not) and make a wish to go along with it. On Thursday night, everyone gathers around a bonfire. The idea is that when you make your wish and throw your log into the fire, your wish will be sent up to the spirits and granted. It’s a profoundly intense and emotional night for everyone involved. Every year, I end up bawling my guts out. Three years ago, I couldn’t.
After the ceremony, some of my closest friends sat me down in a stairwell and made me the special guest of an emotional intervention. They told me how worried they were, and didn’t let me leave until I took off my armor and talked about how I was feeling. And so I did.
I began the actual process of recovery. A friend had me binge-watch Battlestar Galactica, which kind of jolted me into feeling intensely with surprising speed and force. And I made the decision to face my pain, to really feel my feelings and make the effort to learn and grow. I began regular therapy, started writing, crying and facing my emotions instead of running.
That was when I began learning to love myself.
This past summer, I wept at Wish Log. I wept so hard I felt like I had a hangover the next day. And it felt good.
It’s a constant, conscious decision to remain in emotional recovery, and I’m often faced with new hurdles.
Several months ago, I moved to Ithaca, New York, to be in a relationship with a girl who turned out to be emotionally, sexually, physically and economically manipulative and abusive. It took me four months to be able to remove myself from that situation and to remove her from my life. Shortly after spending all my money to move into my own apartment, I lost my job. It took two months of stress, worry, trying, crying, depression, sadness, fighting, asking for help, and miracle after blessing after miracle, and lots of learning how to be a fully functional adult, before I finally found a job that I’m actually super excited about. (It also pays well, so that’s a plus.)
My girlfriend has also been a huge blessing throughout all of this. I honestly don’t think I would have come out of it as well as I have without her love and support. Words cannot describe how much she’s taught me, how thankful I am for her, and how much she means to me. When she recently began taking Truvada (the first antiretroviral treatment approved for PrEP), I cried; if that’s not love, I don’t know what is.
If my mom hadn’t contracted HIV, if I hadn’t contracted HIV from her, and if she hadn’t died, I wouldn’t have had such opportunities to grow and to touch lives. I wouldn’t have my amazing support system. I wouldn’t have the drive to go back to school for immunology and infectious disease to research HIV. In short, I wouldn’t be who I am. So I am thankful. I’m thankful for all of my many blessings, but I’m truly thankful for every single experience. I guess, in a sense, I am thankful for HIV. And I am going to keep learning and growing and reaching out and speaking my truth and making a difference in the world until the day I die.
What three adjectives best describe you?
Tender (I have a big, sensitive heart, and love and compassion are incredibly important to me). Childlike (not to be confused with childish or naive). Resilient (something that I am deeply thankful for).
What is your greatest achievement?
My personal growth. When I look back at my life and see how far I’ve come and how much I’ve learned and grown. I’m really proud of myself. I’m often told I’m “not 22 on the inside,” and it’s true.
What is your greatest regret?
I try to live without regrets. I’ve learned that facing those things and forgiving myself brings me into a much better place than being regretful does.
What keeps you up at night?
Anger at injustice in the world. If there’s one thing (other than love) that burns inside me with a fiery passion, it’s hatred for injustice. Other times, it’s just excitement for the next day’s events.
If you could change one thing about living with HIV, what would it be?
Nothing. I’m on a new regimen (Epzicom and Tivicay) that took my viral load from over 500 to undetectable in a month, and that’s enough of an improvement to keep me satisfied for now.
What is the best advice you ever received?
Work hard. Trust your gut. Don’t let pride get in the way of growth. Ask for help. Love unconditionally. Be generous. Be honest. Feel your feelings. Dress to impress, but don’t live to. Always do you.
What person in the HIV/AIDS community do you most admire?
Everyone involved with Camp Dreamcatcher.
What drives you to do what you do?
Love and passion. Passion to thrive, grow, and create change. I’m driven by love for life and all that it encompasses.
What is your motto?
Watch Battlestar Galactica (the reboot).
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My handy-dandy book bag and its varied contents. My dad taught me a valuable life lesson: Always be prepared. I keep practical things that I may need in it, something that has served me well for years.
If you could be any animal, what would you be? And why?
The lion represents personal strength, power, courage, wisdom, nobility, self-confidence, focus, emotional mastery, animal passion, and anger. That sounds a lot like me.
Editor’s Note: Erin Secker was a 2015 POZ 100 honoree: http://www.poz.com/articles/poz_100_s_t_2991_28028.shtml