The Scream of the Phoenix
to all kinds of survivors around the world
Most of us cry when we are born because the trauma of birth is not easy.
Most of the time, it is our first sound, a scream of life.
When I was told I was HIV positive, thirty-six years ago, by someone with words that had no feeling—or it seemed that way to me, just a cold straightforward “YOU ARE HIV-POSITIVE”—I remember I didn’t make a sound. Almost frozen on the exterior, but inside, it was the most horrendous scream I could imagine, loud as an explosion, and long as a huge, slow wave. Inside my limbs were almost coming back to a natal position with a scream that had no sound, but it did have a creaky-craky whisper of knowing I MIGHT DIE TOMORROW.
Outside, my mouth was closed, but, inside, my mouth was wide open, to the point of breaking apart—think on twice the size the mouth of the man in the painting The Scream—to express the certainty of death, because in those days, in our minds, that certainty was real. Indeed the guy who passed the HIV to me died one year after our sexual encounter. I was a new arrival to this country, my close family, parents, and brothers were in Mexico, and I had no friends yet, and no community. I hardly spoke English. I was living in a garage with an aunt and nobody even knew yet that I was gay. So, I didn’t have anyone to tell about my latest news and my pain and fears, I could not tell anyone about it, I was alone, so alone. Now I think that for me initially, denial was survival, so the screaming seemed to have stopped, or maybe it was just hidden and echoing constantly in the subconscious of this Latino guy who had so many dreams and so much energy.
While I kept going on with my life working during the days, and all-night disco dancing weekends, I remember taking the blood test about four times more, because of false positives (and false negatives). But…..I was still positive, HIV-POSITIVE. When you can not scream and yell when you need to, if the scream stays inside, it is still happening, just nobody can hear it. So, that scream made me lose my hair almost completely, “alopecia”, the doctor said, and neither the doctor nor the specialist could find a reason for it, but I knew the reason. Life kept going, and maybe it was a conscious decision, maybe a god, angels, spirits, or who knows what, but after a year or so, my hair came back to my head, and not even my doctors could believe it was mine; “Are you wearing a wig?” my doctor asked me, and proudly I said, “No, touch it, is mine.” Years later, I felt a couple of little bumps on my neck, curiously very close to my vocal cords, and somehow I felt something was not right. After seeing another specialist, exams and so on, I was told I had cancer, “lymphoma.” Once again, the scream was there, still inside, but this time I was able to speak about it, and talk about it, especially when for the first couple of weeks, the doctors were uncertain if it was stage two or stage four, the difference between living or dying. It was a different situation this time, because by now, many people knew I was HIV-positive, and I did have friends and a community; but it was also very different how people reacted to me when I told them I had cancer compared with how people reacted when I told them I had HIV; it was like people were more compassionate, and more open to hugging me; it was like it was OK for the phoenix to exist, to fly, to show the flames, or for the phoenix to scream.
For about a year, I was having chemo every couple of months; once again, I lost my hair, this time completely, including my eyelashes and my eyebrows. Due to a doctor’s mistake of forgetting to give me the Neulasta injection to keep my white T cells up, every time I was having chemo, I would get so, so weak and fragile, that I would be at the hospital, not allowed to have flowers or fruits inside my room, and people would only come in with masks in order to protect me from any infection. I remember one night in the hospital, unable to sleep, when it was close to Christmas, looking outside the window, in what can be called a “hospital silence,” maybe hearing just a whisper of the wings of a real or imaginary, who knows, phoenix.
After a year or so, yes, I got better, and by now, I’ve been nine years a cancer survivor, but chemo did affect me in other ways. I had neuropathy before I was diagnosed with cancer, just a light sensation, but after chemo, my neuropathy started to get worse and worse, and pain became a constant presence in my life. Now I feel, that the scream is almost permanent, and I hardy know what it is to not listen to it, not to be without it. Maybe—positive-thinking me—the flames have a reason to be in my own existence, and it is a very weird thing, but can you imagine a phoenix suffering from its own flames, but knowing it has to live with the flames, so, therefore, he/she even smiles while it is burning every second? At the present moment, I understand very well, that there is a phoenix in every survivor. At the present moment, I know that the feathers of the master phoenix are made of many survivors, and the flames are going on and off every day by the ones who are leaving us and the ones who somehow keep flying. At the present moment, I know and feel, that the scream changes every second because of the suffering of many of us, either physically or mentally, but the scream is strong, very strong. And at the present moment, even if the fire of the phoenix is also a powerful light many people don’t want to see it fly, or even worse, they don’t even want to see it, period. About four years ago, not to minimize my action, but, I press a few buttons on a computer, and the HIV LONG TERM SURVIVORS group was born, and by now we have about 5,000 members. Almost every time I write something, I include the phrase “WE ARE IN THIS TOGETHER”, and I believe that firmly. Every time I hear about having a good day from one of our brothers and sisters, I smile; every time I hear how sharing with the rest of us makes a difference in their lives, I smile…..but also, every time I hear about problems, about our crying, tears, acceptance, acknowledgment…..I get stronger to keep speaking up.
WE ARE THE PHOENIX, and we keep losing feathers, but our fire is strong and powerful.
We fly on the wind of HOPE, always, even if we have air currents of hate and ignorance against us even in our own HIV community.
According to some of the legends and stories, when the phoenix dies in flames, another one is born from the ashes. Maybe it is not that the phoenix dies and is reborn again, maybe he/she is permanently living with that fire, and sometimes you can see the flames, but in others, the flames are hidden, like many of us who survived the pandemic, living with HIV and still surviving the HIV. SURVIVING STILL, if you quiet your body and brain for a moment you can hear the SCREAM OF THE PHOENIX.
Jesús Guillén is a gay Latino immigrant, bilingual and bicultural advocate and activist who lives in San Francisco, but with work that expands all over the world. He has been living with HIV for thirty-six years and is the founder and one of the administrators of the largest HIV long-term survivors Facebook groups (www.facebook.com/HIVLONGTERMSURVIVORS/), “poster boy” of the Emmy-winning documentary Last Men Standing, as well as the founder of the HEALTHEVOICES Facebook page, which is a forum for members of the “best conference ever for survivors of all kinds “ Guillén wants others to know that “we’re in this together”!