Scott McGlothlen: Bleed like me

Read the back–story series about how “Bleed Like Me” writer Scott McGlothlen first tested positive for HIV.

Part I: HIV testing at the bathhouse

Part II: Testing HIV positive with a rapid test

Learning to live as HIV positive: [HERE] Scott McGlothlen: Bleed Like Me

My first encounter with HIV/AIDS occurred when I was a boy. Every year I looked forward to sitting down and watching one of the most glamorous events in Hollywood – the Oscars. But there was one year that I noticed something different.

All the actors and actresses wore little red ribbons on their designer gowns and suits. I didn’t understand it.

I turned to my oldest sister to find out what these ribbons meant. She explained that they represented some new disease that was killing people. However, it was only killing gay people, therefore it wouldn’t have any impact on us. At the time, my family had particularly conservative viewpoints. I took a split second to think about these dying people, tossed them a moment of thought, and continued to look forward to the announcement for best actress.

Twenty years later, I found myself awaiting the results of an HIV rapid test.

It kind of worked like a pregnancy test but instead of using your urine, they use a drop of blood. By this time in my life, HIV/AIDS had, of course, impacted me more than just the boy who watched the Oscars. Even though a lot of people did not talk about it, HIV was living in our playground. But, I never worried when I got tested. I had good sex education in school.

When the clinician revealed the test, there was a line on the stick. He seemed concerned and I began to panic.

In order to calm me down, he made the case that the line was very faint and that these tests were ultra sensitive. He argued he already had four false positives in the past week alone. The clinician convinced me to give him more blood and promised a more certain confirmation in about two weeks.

But two weeks became 14 days too long to wait and find out if I had one of the world’s scariest diseases. I raced to my regular physician knowing that she could get me the results in four days. But even those days felt like years. Suddenly, my sex life began flashing before my eyes.

How could this have happened?

Where did I go wrong?

And who was it with?

Memories bounced back and forth in my head between guys, friends and dates.

The fourth day of waiting came faster than I wanted it to.

I should have known something was wrong when a nurse came out into the waiting room and handed me the co-pay that I had given to the receptionist. Doctor’s offices just don’t do that kind of thing.

In the patient’s room, my doctor walked in and even before the door closed behind her, she said the test came back positive.

Life – as I had known it – was obliterated.

I wailed out tears into the palms of my hands.

The second I stepped out of the building, life just didn’t feel real anymore. The air felt thick; I could push it around with my hands.

Until I could get in to see the specialist, my future seemed uncertain with HIV and my brain became cluttered with fantasies. I wondered what it would be like to die young. I imagined I would get to appear on public service announcements, or MTV, telling young people that HIV and AIDS was a much bigger risk than any of us thought.

The specialist was kind, smart and quirky. He shattered my HIV fantasies and called me “normal” and “healthy.” Even though this meant I probably would not be on TV pleading with today’s youth, I needed to hear that I was OK.

Physically, I did feel healthy.

In fact I felt so good that I would have never known I was positive. Yet, feeling normal was far beyond my grasp or comprehension.

The specialist told me that I would not die young from AIDS. He observed my slight Obsessive Compulsive Disorder tendencies as well as my healthy lifestyle as tools to help me live a full lifespan.

However, his words of comfort only lasted so long.

I quickly moved back to my bed where I put on my headphones, listened to depressing music and cried. These dark songs seemed different to me now … as if before I had merely enjoyed them aesthetically. This was the first excruciatingly painful event in my life.
Amanda Palmer of The Dresden Dolls sang, “If you had to live with this you’d rather lie than fall,” in the  song “Gravity.” That is probably true about HIV. Most people would rather hide the disease than risk any ensuing rejection.

Another artist, Poe, had an unreleased bootleg track that asked, “How long until I feel whole again?” This made me wonder if I would ever feel complete again.

Shirley Manson of the band Garbage chanted, “Try to comprehend that which you’ll never comprehend,” in the song “Bleed Like Me.”

It was like these musicians were speaking directly to me.

The song, “Bleed Like Me,” definitely got the most hits on my repeat button. The lyrics spoke beautifully of people experiencing unbearable pain: those who starve themselves, those who cut themselves and even those who cannot figure out what gender they are.

As I stared at the veins under my pale skin, I listened close to these three simple words over and over again.

I would never bleed the same again.

Not only was my blood tainted with this virus, but my persona was too. And from that point on, more than anything, I wanted people to empathize with what it felt like to bleed this way.

The specialist had convinced me that medical science regarding this disease had made strides. HIV was reclassified from “fatal” to “chronic.” I should have been relieved that I didn’t face a death sentence. He explained that the best comparison of modern HIV is that of diabetes. If you go about it wrong, you certainly can die. But if you go about it right, it almost definitely won’t kill you. This contrast felt almost too good to be true.

I got on medication and amazing things began to happen. Within two weeks, blood levels of the virus shot down to undetectable levels. And my immune system made a comeback.

Undeniably, this disease was similar to diabetes, and in a way, almost simpler to manage. I didn’t have to monitor myself so closely to where the tiniest choice could alter my health instantly. I didn’t have to do daily tests on my blood levels. A simple swallowing of a couple pills was all I needed to keep me healthy and to also make me less infectious to others. This was fantastic.

But something still felt wrong.

I appreciated the fact that I did not have something as serious as certain cancers. But what I did have somehow made me feel even dirtier than I would if I had cancer. Even with my health in check, I still suffered from fear.

I couldn’t talk openly about HIV. I worried that I might make someone feel uncomfortable, or even worse, HIV might make people run away from me.

By now, I had already lost dates with men who didn’t understand it. I even lost friends who didn’t want to acknowledge it. I realized that rejection was a major piece of this game.

And the name of this game, was stigma.

The stigma haunted me everywhere I went. It felt like a giant stamp of some scarlet letter had been planted on my forehead. When people asked how I was doing, I couldn’t be honest with any of them. I was no longer that kid watching starlets wear a red ribbon of on Oscar night. I was the ribbon. I felt shame that people hated what I represented.

I couldn’t deal with this haunting disgrace anymore. If I wanted people to accept me, then I had to actually expose myself … HIV and all. Even with my good health, my own silence meant the disease was winning. I wanted people to know what it was like to bleed like I do. Any backlash would be worth it if I could change that stamp upon my forehead from a scarlet letter to a symbol of pride.

With a few clicks on my computer mouse, I came out about my HIV status on Facebook. Now my family, co-workers and acquaintances would all know. Surprisingly, my inbox flooded with notifications of people celebrating my honesty rather than ridiculing my disease. I received more “likes” than any other posting I had ever made. Of course, I did get a couple nasty emails and was de-friended by a person or two, but for the first time in my life, I was bleeding in front of everybody and it felt like a success.

Today, I am not proud about having HIV. In fact I am often saddened that something so evil still lurks beneath my skin. I am reminded of it daily through small things: mosquito bites, paper cuts and taking my meds. The thought that it will never truly go away turns knots in my stomach. But I am proud to be open and honest about my status and help others to see this disease for what it really is.

I am proud that I changed the feeling of that stamp on my forehead from a scarlet letter to a symbol of pride. This will be the tool in my journey to becoming a proud long-term survivor. And I plan to bleed the whole way through.

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