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“An Unheard Voice—to a Voice for the Unheard”

Photo: © Karen Joy Photography

Welcome to OpenlyPOZ.com!

Hi, my name is Rob. I am a passionate openly gay, HIV-positive advocate and educator. During my 25-year career as a certified child life specialist and my my 22-year journey as a long-term survivor not only living with HIV/AIDS but also thriving, openly since World AIDS Day 2010, I have evolved from being an unheard voice to a voice for the unheard. I believe that by putting a face to HIV, 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 or at risk for HIV/AIDS, through sharing [my] personal stories and experiences of clearing HIV/AIDS’ and life’s hurdles R⁴ Style—sometimes struggling, sometimes succeeding.

My “R⁴ style” entails four stages that often accompany my encountering, overcoming and growing from HIV/AIDS and life’s hurdles: rock bottom, recovery, resilience, and reinvention. THV2014OpenlyPOZ.com was recognized amongst 2014’s TOP HIV Voices, which honors top online resources that do everything from providing patients with practical advice to connecting them with others who are traveling the same journey.

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 R⁴ style, healthy aging with HIV, and much more.

My story is about much more than the daily challenges of living with HIV/AIDS. It is a chronicle of fostering hope and resilience in myself and others. Since the positive outcome of that first experience of hitting rock bottom, my R⁴ style has become my mantra and guiding force in clearing even the highest hurdle I encounter as I move forward on my journey, celebrating life each and every day.

Blog2014R⁴ 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 R Style” on Josh Robbins’ I’m Still Josh)

2016 marks my 30th 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 more concerned about dying, than living with HIV.

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.

imageIn 2006, my primary health care provider referred me to registered dietitian Nancy Dell, MS, RD, LDN, CDE for nutritional counseling. I had gained 70-plus pounds—mainly the result of excessive alcohol consumption, a sedentary lifestyle, and my loss of a 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 accountability 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. 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 truly be 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.

Merging my two worlds— that of child life and my personal journey—I am  passionate about consumer engagement. In my opinion, it is our responsibility to participate in community engagement discussions and decision-making that so significantly impact the lives of those of us living with, affected by or at risk for HIV/AIDS. In 2014 and 2015, I was a key participant in the Massachusetts AIDSWatch Delegation in Washington, D.C., where I spoke before Congress about the important issues at stake for people living with HIV/AIDS in the U.S.

As of September 2, 2015 I was appointed to the 2015-2017 Boston EMA Ryan White 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. 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. 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.

As a passionate openly gay, HIV-positive advocate and educator, and through local and statewide activism, education, outreach and online platforms, I am optimistic, confident and determined that I will continue to improve the quality of life of those in the HIV/AIDS community, including my own, by raising 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 working towards a future free of HIV/AIDS.

Whether or not you have been directly impacted, we are all affected by HIV/AIDS.

 

Living Openly with HIV/AIDS