Our dear friend and an amazing community activist, Alexis Rivera, died yesterday at age 34 of complications related to HIV. Many of us were with her around-the-clock during her final week in the hospital, as well as during her 6 days at hospice.
We owe a huge thanks to Sanctuary Hospice, who provided 24/7 staff, as well as all of the medical equipment and medications to Alexis for free during her hospice stay as well.
The community owes a gigantic debt of gratitude to Kathy Watt, ED of the Van Ness House, because she brought Alexis home. Van Ness is where Alexis transitioned into womanhood, and where she transitioned out of our world as well. Kathy and her staff provided room and board free of charge, and support to us caregivers , so that Alexis, who was without any kind of medical insurance, could live with dignity in a space in which she would be respected and honored for the woman she was, for as long as Alexis needed it.
Personally, I want to thank Kathy Watt, whose perfect words on the hospital phone to Alexis when we were trying to get her to agree to hospice even as she refused to believe that she was not going to go home to resume her normal life, because she made the transition from hospital to hospice possible.
And I want to thank Farina Dary, who provided the family – and Alexis – with the missing key… the piece that let Alexis finally let go. It was a profound experience, and one which I will never forget.
Here is Alexis’ bio, for those who don’t know her:
Alexis Rivera, a proud queer transgender woman, was born and raised in Los Angeles. Alexis was involved in the Transgender community for the past 15 years, beginning her activism as a teenager doing street outreach to LGBT youth in Hollywood. She eventually became a case manager and later the first program director for Children’s Hospital Los Angeles’s iconic Tranny Rockstar program, helping provide vital support services to hundreds of transgender youth in Los Angeles. She participated as a Commissioner for the Los Angeles County Commission on HIV/AIDS; was on the founding board of the Female-to-Male Alliance of Los Angeles; and, for six years chaired the Transgender Service Provider Network. Alexis was a founding member of the League of Trans Unified Sisters (LOTUS), a sisterhood for transgender women. Alexis later rose to even greater prominence on a statewide level as Policy Advocate for the Transgender Law Center, playing an instrumental role in advocating for statewide legislative change and training hundreds of transgender community members to speak to elected officials. During this time, Alexis was also a leader of the Transgender Law Center’s Health Care Access Project and helped secure affordable transgender healthcare services in several counties across the state of California.For the many life-changing contributions Alexis made over her lifetime, she received several awards including: the Trans-Unity Trailblazer Award; the Latino Caucus on HIV Prevention Leadership Award; the Trans-Unity Spirit Award; and she was named the first winner of the QUEST Advocacy Pagaent for transgender woman in 2002. Alexis described her many years of ongoing activism as a labor of love.
All of this is true. Alexis was an amazing community activist. She was also a mother. She also became a grandmother a month before she died. She was also a sister, a daughter, a grand-daughter and and an aunt. She was a mentor to so many, and a friend to many, many more. She was family to me and to Talia; and it was our little family, who cared for her during the last year especially, when she was hospitalized so much. Diviana Ingravallo, Christina Quinonez, Isabella Rodriguez, and Luc Jauregui, Sabel Samone – our family – especially during those few weeks when she was out of the hospital – tried so hard to change the situation until we realized that it was just too late.
But speaking personally, I want to say that all of this is true, and still it is a more complicated picture.
Why does a 34 year old woman die of advanced HIV disease? In Los Angeles? With access to every benefit, and surrounded by family… and friends – most of whom work in the field of HIV social services? Especially when she herself worked in HIV services for many years.
Shame does so much more than we can see on the front end, Secrecy. Denial. Things she never talked about. The relationship with the person who eventually infected her with HIV. The complications of silicone, and how that impacted her ability to fight her HIV effectively. Her virtual refusal to be adherent to her HIV meds, and her refusal to talk about it.
The trans community is one which holds up their leaders on pedestals. W love our community leaders – leadership is one of the most overused words in L.A. trans community planning. I know Alexis loved her role as a community leader. But I think that given who she was, it troubled her ability to be honest about what was going on. She didn’t want to ask for help – not only because she would rather deny that she was living with HIV – but also because she knew about the ripple effect, and she was concerned for the effect that it would have on the larger trans community – especially the youth. Instead she chose to hold most of it inside, and to deaden the pain in other ways.
Alexis died of so much more than HIV. I hope that those of us who love her, who admire her, who were influenced by her, and who are the bearers of her legacy and her memory can help others to see that this didn’t have to happen. Not at this time, and not in this painful, painful way. I believe adding this part of the story to the story so many already are aware of will actually strengthen her legacy, and allow her to continue fighting for social justice for & with her trans sisters and brothers even into death.
I woke up this morning for the first time in 2 days – none of us got any sleep the night she died. I woke up with a light heart. My sister Alexis is no longer in pain. Not physical pain. Not emotional pain. She was never left alone by her chosen family, or her mother Annette, during her hospice stay, and when she breathed her last breath, her face became peaceful. I can’t hear her raspy, gurgley breathing, and I don’t have to try to assess whether morphine or antivan would make her feel better right now. I can look out of my window and know that yes, we have a lot to do still, but something we tried so hard to do has been done. Alexis let go of her pain, and we helped her to do that. This is good.
~ Susan Forrest