By Mark McNease
I recently read a series of profiles in the San Francisco Chronicle based on their Last Men Standing Project, focusing on the lives of long term HIV survivors. Among those profiled in the piece and in the documentary is the extraordinary Jesús Guillén. Not only is he a long term survivor, but he also helps countless others on a dedicated Facebook page, through his art, music, shamanism, and in his indomitable spirit. I was delighted to have the chance to ask him ‘6 Questions.’ – Mark McNease/Editor
Note: This interview was edited with Jesús Guillén’s permission.
MM: How did you come to be involved with the ‘Last Men Standing’ project, and what was the process like for that as a written feature and a documentary?
JG: Ah, my point of view, my story, hopefully represented well. In the end all I can do is be myself and tell you how and what I’m going through or how I happen to be part of the LAST MEN STANDING project.
I heard about a reporter trying to do something for HIV LONG TERM SURVIVORS. For me it has been a journey in the last portion of my life, trying to find ways to express our voices. My story is one of many. I knew it had value because I represent immigrants, the Latino community and the gay community.
I got in touch with Erin Allday, the force behind this amazing project, and I say amazing, because it had already created an international wave of actions and reactions.
After getting in touch with her, everything started to get in motion. I didn’t know then that it was some kind of audition, because she was interviewing many people. Somehow, she heard something in my story, or words, or emotions, value, or who knows. I can only speak for myself.
She started interviewing me. We talked once, twice, and then…..she told me other people would be coming to take pictures. I thought it was only something for the newspaper, I never thought that it would this multi-media project that would be so important. Internet, newspaper and now the film opening April 8th. I have to say that the experience initially was awkward, being natural while you have cameras in front of you, or following you around the city. Then, I guess, there is a moment that you don’t care anymore.
In a project like this, everything counts, and the team was amazing. Erin Allday, Erin Brethauer and Tim Hussin were angels, they treated me so nicely, respectfully and lovingly and I consider them friends. I know their next special will have different people, but we have to be close to show our real selves, our deep thoughts, our REALITY. All that I can addat this point, is that I’m honored and proud, but once again, I feel that HUGE responsibility for my community. This project is creating waves and I’m incredibly thankful. This is the first documentary for the Chronicle newspaper. This is the most-watched internet project in the history of the Chronicle, and we’re hopeful it will results in changes for HIV LONG TERM SURVIVORS, not only in San Francisco, but I really believe, around the nation. The simple fact of it being see around the world, we are for many other HIV people a fairy tale, hope, LIFE after death. I have heard this through the group of HIV LONG TERM SURVIVORS I founded on Facebook, and it makes me so happy, so excited, and maybe just optimistic. It simply gives me simply for a better life, not just longer, and I feel I’m leaving in this earth a little grain of sand.
MM: We’re the same age and we both lived in Los Angeles at the same time. What were your experiences when this wave first came towering over us?
JG: Ah, Mark, yes, the same age, in Los Angeles, I would love to hear your story. I know every story is unique. I was 24 years old when I arrived in Los Angeles. I had no papers, hardly spoke any English, late 1985….”You’re positive.” I can think only about a contrast of words, COLDNESS and BURNING…… not having anyone to tell that I might be dying, all my family in Mexico, trying to start a new life here, no support, no one to tell…I’m scared, I don’t know what to do, so many of those moments. To tell you the truth, I don’t even know how I did it, I know for real, I AM A SURVIVOR. I was (I like to think I still am ) a good guy, not wild, just LOL, fresh meat in this country. I was an actor, doing a tour with a theatre group, a very lucky guy, sharing the room with another actor who I really was very attracted to, the rest is history. One night of passion changed my life completely in such drastic ways. He died one year later, so I knew exactly who passed HIV to me. Like many of us, always asking, how is that he died, and I’m here 30 years later.
In Los Angeles in those days there was Circus Club, dancing all night, excitement about trying to find a new life here in the USA. Then the amnesty program happened in early 1987, something like that. Those were the days of false positives and false negatives. I remember taking the test 3, 4, 5 times, hoping it would be negative, but no, it WAS POSITIVE, over and over. HIV positive people were not allowed to be in this country, to immigrate, so I lied. I had to come out to a friend about my HIV status, and then, with my heart hurting so much, to ask him if he would take the test for me. (In those days it was just an anonymous number.) So he took the test for me, and I’m forever thankful for what he did. Now I’m a citizen of this country, so I can talk about this secret life I had, these acts of survival, of trying to simply BE, EXIST, telling myself, I AM A GOOD GUY, and I’m worth it.
MM: You are a survivor. You’re a singer, photographer, and a shaman. What inspires your art, and how has your creative spirit flourished over the years?
JG: Art through all my existence has been a very powerful engine, I guess, not having someone to tell my dark secrets to, music, theatre and art have been always a way to express all that pain, but also the happiness that keeps me going. I’m always thankful to the universe, that I’m not the kind of guy who feels depressed very easily. I have many other issues, but not much depression. It’s not that I don’t cry, believe, me I’m a LATINO….LOL, I’m very expressive about life, but I can be down for a couple of days and then I go on. So, yes, I’m thankful that this is one of my good strong skills. I have a lot of empathy. I for sure feel I can express other peoples’ lives and stories through my song writing, or poetry, visual arts. You tell me a story, and I can have a song tomorrow, ready for you. I’m a story teller. How has it has changed through time? I guess there were times in my life when I would create with the hope of becoming famous, of being known. It’s not that I don’t have an ego anymore, it’s just that I know I have to be MYSELF even more than before. I worked for the commercial industry in Los Angeles, radio, TV, etc, even making commercials as a singer/composer or model/actor, but now I feel I’m an advocate and activist who happens to be creative. Also, for me, there is always a very important role for advocacy through art. Even for this project……or intertwined, I composed a song for HIV LONG TERM SURVIVORS, and I’m very proud of it. I sang it for groups and people seemed to receive it very well. I just finished the arrangement and adding my voice. Here there are the lyrics…..hopefully soon, you’ll hear the music.
No excuses, nobody’s fault,
but it felt like the end of the world,
it was a moment that changed my life,
soft as a rose, sharp as a knife;
and time flew by,
and time flew by.
“YOU’RE GOING TO DIE”
I was told,
but the light of the sun
comes and goes,
so many times,
day after day,
month after month,
year after year,
spring, summer, autumn, winter again.
And here I am,
it seems like rowing against the wind,
somehow I keep thriving,
when I feel a gentle breeze,
but in moments I feel like an island,
lost in the gigantic sea.
I feel I’ve been in a boat,
under the burning sun,
storm, after storm,
storm, after storm,
not a survivor,
oh, oh, surviving still,
oh, oh, surviving still.
AND HERE I AM SURVIVING
THROUGH MY PAIN, SMILING,
AND I FEEL LIKE FLYING,
OH YES, I WANT TO LIVE,
BUT NOT JUST TO LIVE,
I WANT TO ENJOY MY LIFE,
TO NOURISH MY SOUL,
TO WALK UP AND DOWN THE STREET,
BUYING MY BREAD AND MY MILK,
THE EVERY DAY SIMPLE THINGS,
WALKING MY DOG,
SINGING A SONG,
SINGING A SONG.
That was then and this is now,
once upon a time,
a new story began,
when something entered my body
under some strange plan;
but today I want to have
many “ONCE UPON A TIMES”
and here I AM,
not a survivor, SURVIVING STILL. Jesus Guillen-
MM: You’re also a shaman: can you explain for readers what this means, both for you and for those who know you?
JG: Ah, shaman…..Yes, I believe that whatever we call ourselves has meaning. I told you about my empathy, how I can feel things from people, and since I was very young I knew I had a very strong energy, and I’ve been told by energy healers many times through my life that I have that energy. What it is, how it came to be, aren’t questionsfor me. Shamans, through stories or narrations, are healers or warriors. I guess I have a little bit of both, but my personal definition, is that I’m a BRIDGE between this world and others, but many times, simply between other beings, or humans, and I love making connections between them. I do believe in energy, sending it and receiving it, even through these words, through the internet, through our actions. But I told myself finally, use this word, “shaman,” even in my e-mails. After many encounters with this, somemehow, by communication with other energy workers, healers, events in my life….one day, I was just arriving home, and out of blue this man passing by, he just spoke to me and told me, “Do you know you’re a shaman?” I know maybe he was a crazy man, or it was just a coincidence of life, just words on the air, but it touched me. The next day I talked to my acupuncturist, an energy worker also, and chatting with her, I told her about my finally owning this word, this concept, and she asked said, “You didn’t know that?” I think that sometimes we’re afraid to own power, whatever it is, to say I’m smart, or beautiful, or great; I feel you can be humble, but still own and be proud of whatever you feel you are. There are times in my life, I feel more connected to spiritualism (I’m not religious, but consider myself very spiritual), and other times when I feel more materialistic, but I always search for balance. Balance in anything we do is a very difficult thing. Learning where to lean to when necessary. Ah, (sight) LIFE. SHAMAN……connecting, and hopefully giving/bringing hope to someone else in this world. LOVE.
MM: You started a Facebook page for HIV long-term survivors (LINK HERE). What has the response been (I know it’s grown very quickly)? How do you think it has impacted both you and its members?
JG: THE HIV LONG TERM SURVIVORS group is an amazing group on Facebook, but now we’re also branching out to other activities out of social media. Social media has an incredible role in reaching the unreachable, because isolation and loneliness is the biggest problem for my community. A lot of members of my family of survivors many times don’t even leave home, so we need to reach out to them, we need support and services, to grow older with dignity, not just longer. There are many mental issues in correlation to being a survivor, like PTSD, anxiety, AIDS SURVIVAL SYNDROME, and much more. In only 6 months or so, we have over 1,800 members, and even if we had some problems (scammers, phony cures, spammers, etc) this group has grown to be a beautiful thing. There are so many elements of beauty here: expression, voices out loud, support, creativity, a simple welcome, a like can make a difference in someone’s life. For me, it is , personally, of course, a selfish thing, in the sense that it makes me feel good to help others. But, to know, that by now, many of the members look forward to being there, to chat, to talk, and when someone tell syou an anecdote, or asks for suggestions, or to know that we’re communicating to survivors around the world, and also, we get visitors who want to feel they have hope for their future. It is, I believe, healing……but now, we also have a project of making a QUILT for HIV LONG TERM SURVIVORS and in May, we’re having an event called FOOD FOR THE BODY AND SOUL, an agency is collaborating with us for the food, and we also will have art placed around the dinner, and performances, all by HIV LONG TERM SURVIVORS. Luckily I have volunteers that. Withouth them I would not be able to do what we’re doing. SO, BIG THANK YOU.
MM: You also told me about the quilt project for long-term survivors. (Link is here.) What can you tell us about it this and your plans for it?
JG: For the HIV LONG TERM SURVIVORS QUILT, here it is the information: 🙂 but you can also find it on Facebook.
HELLO FAMILY AND FRIENDS from around the world!! We want to make a quilt, this time not to honor our fellow members gone, but to honor our SURVIVING members, meaning you and me, US.
A quilt made of little pieces of an old garment ( clothing ) of every person- approx 6 by 6 inches- I really hope many of you want to be part of this creation, please send your pieces to:
300 Buchanan St. #209
SF, CA 94102
I really believe that this quilt can become a VERY POWERFUL statement, little pieces of our lives, our laughter and tears. Don’t forget to write your name behind the material square.
TELL YOUR FRIENDS who are survivors, pass the voice, let every agency and organization know about this beautiful project. You have time to send your square piece, this is a project that will take time, maybe 6 months or so. LOVE and THANKS always.
MM: Jesus, thank you so much for this interview. I’d like to give you the last words: what would you like to say to people reading this? About life, about love, about anything at all.
JG: Ah, a closing statement, hum! I guess, I can say, YOU’RE NOT ALONE……reach out, come visit us on Facebook, read about LAST MEN STANDING, contact me and give me your ideas, your thoughts. Yes, Isolation and loneliness are our biggest problems, but we have to speak up, tell your story, tell us YOUR STORY. I know it has been difficult. Most of us have been told more than once “You’re doing to die,” but we’re here. Not just survivors……the river keeps running….SURVIVING STILL. LOVE and THANKS always.