Photo: © Karen Joy Photography
Hi, my name is Rob. I’m a long-term survivor living and thriving with HIV/AIDS, openly since World AIDS Day 2010. My twenty-two-year journey has evolved from being an unheard voice to a voice for the unheard. I believe that through storytelling and by putting a face to HIV/AIDS, we can lessen stigma and make sure silent voices are heard.
The mission of OpenlyPOZ.com is to empower and support my peers living positive, as well as others affected by HIV/AIDS, through sharing my personal stories and experiences of clearing HIV/AIDS and life’s hurdles R⁴ Style—sometimes struggling, sometimes succeeding.
Please join me on my journey of living openly with HIV/AIDS, and get firsthand insight into how I cope, survive, and thrive. I share the hurdles I’ve encountered and cleared. Some of these hurdles include coming out twice (first as gay, and years later as HIV-positive), the loss of my father, encountering HIV/AIDS, depression, addiction, a suicide attempt, my 4 R’s (rock bottom, recovery, resilience, and reinventing myself), healthy aging with HIV, and much more.
My story is much more than the daily challenges of living with HIV/AIDS. It is a story of fostering hope and resilience in myself and others. It was the positive outcome of that first experience of hitting rock bottom that my 4 R’s have since become my mantra, my guiding force in clearing even the highest hurdle I encounter as I move forward on my journey, and celebrating life each and every day.
R⁴ is based on multiplying the four instances of R together. So: R⁴ = rock bottom x recovery x resilience x reinvention. In order for me to move forward in the process, I have to clear the previous hurdle, or R, which in turn strengthens my confidence and determination to ultimately clear the highest hurdles.” (Read my full guest post “Clearing HIV/AIDS & Life’s Hurdles R⁴ Style” on Josh Robbins’ I’m Still Josh)
2015 marks my 29th year in the child life profession. Child life professionals empower children and families to master challenging events related to health care. In 1993, after being diagnosed HIV-positive (after having tested negative six months earlier), I crossed over into a parallel universe, living as the children, youth, and adolescents with whom I worked did. I was suddenly faced with coping, surviving, and then thriving with my own health care challenges while continuing to provide child life care. On a personal level, I was not as much concerned with living positive, but more concerned with dying.
Then, in 1999, it happened: my worst fear. I was no longer living with HIV—I had been diagnosed with AIDS. I was diagnosed with Kaposi’s sarcoma and in need of an extended medical absence from my career due to failing health. My physical deterioration, coupled with a loss of professional identity and other personal issues, led me down a dark and lonely spiral lasting eight years. I was struggling with AIDS, depression, and addiction, subsequently attempted suicide, and ultimately hit my rock bottom.
In 2006, my primary health care provider referred me to registered dietitian Nancy Dell, MS, RD, LDN, CDE for nutritional counseling as I had gained 70-plus pounds—mainly the result of excessive alcohol consumption, a sedentary lifestyle, and my loss of will to live. In early February 2007, during one of my appointments with Nancy she mentioned to me that I needed “accountability.” I knew at that exact moment that she not only meant in terms of my nutrition, but accountability in my life!
That was my turning point: the beginning of my recovery (after having previously relapsed once), the discovery of my resiliency, and a reinvention of me. Reflecting back on this time in my life, as tough as it was, I never once missed a dose of my Highly Active Antiretroviral Therapy (HAART) HIV regimen, and realized I must have had a will to live deep down inside all along.
I am proud to say that I have been clean and sober since February 14, 2007! My continued success and personal growth is a direct result of my readiness, trusted support network (led by my mother Patricia Quinn), health care team, and OCD attitude. No, that’s not Obsessive Compulsive Disorder, but rather my Optimistic, Confident, and Determined attitude. My journey back continues to be truly a gift. Countless opportunities have come my way without searching. I have reinvented myself and applied my child life skills and personal challenges and triumphs in other settings, fostering hope and resilience in myself and others. In my speaking engagements, I frequently share with others that as difficult as it may be to stay on track during life’s hurdles, it’s a lot harder to fall off and try to get back on. I truly believe that we can all overcome and grow from obstacles when we learn to see them differently.
As of September 2, 2015 I was appointed to the 2015-2017 Ryan White Part A —Boston EMA HIV Services Planning Council. In addition, since September 1, 2013 I have been serving on the Statewide Consumer Advisory Board (SWCAB) of the Massachusetts Department of Public Health, Office of HIV/AIDS. I am honored to have been named one of the TOP HIV Voices 2014 by TrainReach.com. Prior to that, I served on the Board of Trustees at the AIDS Foundation of Western Massachusetts (AFWM). I first became involved with AFWM in 2008 as a recipient of their emergency financial assistance program (EmFAR). I have since received AFWM’s Community Activist Recognition Award, and in 2011 founded Living Positive, Western Massachusetts’ only peer-led support for men living with HIV/AIDS.
I am excited for the new platform on the Ryan White Part A—Boston EMA HIV Services Planning Council . As a passionate openly gay, HIV-positive activist and educator, and through local and statewide activism, education, outreach and social media, I am increasing HIV/AIDS awareness and reducing HIV-related stigma. I am continually seeking additional opportunities to further my work advocating for increased awareness, ending HIV-related stigma, and the chance eventually for an AIDS-free generation.
Whether or not you have been directly impacted, we are all affected by HIV/AIDS.