Wednesday, September 14, 2016

Today Is The First Day of USCA 2016 Pre-Conference: HIV 50+ Strong & Healthy Train Of Training



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The question posed by the organizers is “What does it mean to be HIV-positive strong and healthy?”

I’ve been HIV-positive since 1983, so that is the lens through which I answer this question and say, “It’s complicated.” It does not mean I’m an expert, just experienced.

Being healthy and strong means recognizing that those living longest with the virus, long-term survivors who acquired HIV before Highly Active Antiretroviral Therapy (HAART) in 1995/1996, have different health and social and mental health issues.

It also means that we are all aging together. Being healthy and strong means standing together with a unified voice. It means being visible to our communities.

“Empower. Engage. Unify. Elevate.” Those are our intentions at Let’s Kick ASS a movement of HIV Long-Term Survivors.

It means reexamining what self-empowerment looks like now as we age. It means stepping into the light and not feeling shame about having a virus. As from the earliest days, it means being partners in our health care and not just leave to providers who may not know what it means to be aging with HIV.

It means being visible and active in our community and the culture at large — not seen as victims or relics from a bygone era.

It means speaking our truth with compassion and refusing to remain invisible. The mainstream media have started telling the stories of the first generation of people living with HIV/AIDS and aging with HIV. But too often they only tell part of the story about how hard the struggle has been, not the stories of how we survived. Not our stories of resilience and strength. It means speaking our truth with compassion and refusing to remain invisible.

We are the majority of people living with HIV in the US. Approximately 53% of all individuals living with HIV are over 50, in the US. By 2020 we will be 70%. Worldwide Over 4.2 Million People With HIV are over age 50. Those of us gathered here for this workshop are the tip of a much larger iceberg.

Can you image our power if we agree on an agenda and demand change of a system that does not see us or think that we are ok simply because we have better HIV meds?



Many of us have ramifications of taking awful medications and recall a time when there were no treatments when it was an untreatable terminal illness, many of bare scars of the multiple losses from those times.

We also bare the strength of coming out the other side. Many of our scars are invisible, but we can wear our strength on our sleeves.

We need to recognize that people living with HIV for 20+ years (now as long as 36 or longer) have vastly different medical, psychosocial and social needs than those who became positive after HAART in about 1996. That in not to divide us but to explain the complexity of what being strong and healthy while being poz means.

Being healthy and strong means warriors in the fight against HIV-related stigma. We need to reject it and strengthen empowered networks of long-term survivors, with gatherings like this and dialog online, becoming our advocates and finding allies, so we are louder and stronger. It means being HIV positive is nothing to be ashamed of — it has never been. We can’t be ashamed if we do not take it on.

It means understanding that treatment as protection (TasP) is as important in stopping the spread of HIV as PrEP is, even though it doesn’t get nearly the attention as PrEP.

It means being there for a brother or sister when they need support or assistance and that we ask them how they are doing with empathy and an open heart.

It means embracing our roles as elders, leaders, and teachers of our communities and our collective community.





I never thought I’d live to be 30, much less 57. When the idea that I might be an old man with HIV finally sunk it took my life with it. I plunged into a period of depression, fear, anger, anxiety, and insomnia that wrecked me. To put it bluntly, it was a four-to-five-year-long mindfuck called AIDS Survivor Syndrome that left me feeling hopeless, obsessed with suicide and seeing no reason why I should stick around to see how bad it was going to get. Read about it here: http://bit.ly/AIDS2016poster

After spending over two decades planing to die, it hit me that I had not made plans to live, especially into old age. I was paralyzed by fear and scared out of my mind about what old age with HIV might be. I wish I could say that no long have many concerns, but I’m doing what’s in my power to change what I can change, and learn to live with what I can’t. I’m beyond the worst ramifications of the trauma of survival. It is time to live and to live as fully as possible.
Resilience is the key to strengthening us moving forward. To stave off frailty from accentuated aging we need to eat well, stay active and stay engaged. In other words, so what we can to become stronger so we have the best shot of making these next 20 and 30 years the best they can be.

Too many of us are living in poverty; it calls for a sea change in policies to rise above it and embrace our roles as elders, leaders, and teachers of our collective community.





It means making room for the faithful and the faithless. It means embracing one another as the community we are and not allowing our differences to bog us down. We need to support and accept each other just as we are.

I look forward to meeting each and everyone one of you and hope this another step in creating a strong community of Older Adults Living with (thriving with) HIV.

Peace and unity,
Tez

PS. I’ll update the week here. So please check back often.

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Read more from Let's Kick Ass, here.

Let’s Kick ASS

Grassroots movement to empower, engage, unify & elevate Long-Term Survivors





Tez Anderson

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