July #103 : Our Infectors, Ourselves - by Mark Leydorf

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Table of Contents

Lost In Paradise

Kiss & Tell

Our Infectors, Ourselves

Velvet Gloves

A Pathway to Peace

His Diff'rent World

Earthwatch

Fear Factor

African Idols

Tribute: Keith Cylar

Burning Rubber

War of the Worlds

Oprah on the DL

C No Evil?

When Nature Calls

Briefs

Liver It Up

Inner Guinea Pig

Cancer Rising

Quick Study: Dementia

Senior Class

Women('s) Count(s)

Fit to Print

The Acting Bug

Editor's Letter

Mailbox

The Art of Healing



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


email print

July 2004

Our Infectors, Ourselves

by Mark Leydorf

Eighteen years after the death of her lover, Annette Lizzul remembers the man who left her a lasting impression. Plus, Mark Leydorf asks other HIVers: Who infected you-and can you forgive them?

MAD ABOUT THE BOY

They were young and crazy in love. He had AIDS. Did he want to share it with her?

I can still remember the moment I first saw Larry, at a Jersey Shore party the summer of 1984. I was a 22-year-old rebel girl from an Italian-Catholic Jersey City family. I can still see his face, smile and transfixing eyes.

“That’s Larry B—,” my girlfriend said. “He’s a great guy. A trader on Wall Street.”

It was instant chemistry. We were kissing within 10 minutes!

So began a few months of heaven. He treated me like a princess, talking of marriage and how he wanted to have children. How lucky could I be?

Then the bad behavior started. Driving home from a friend’s wedding, he threw me out of the car, infuriated that I’d danced with another man. Once, he gave me a black eye. But he was back the next day with roses, begging me to forgive him. I did. I was in love.

I knew he ran with a rough crowd that shot heroin. But he wore a suit and tie! Still, he would nod off at the dinner table or steering wheel. Finally, I confronted him. He said he’d shot up in the past, but not anymore. When he slept, I’d examine his arms for track marks but never found them. Where did he shoot? Between his toes? In his groin?

He started getting thin and frail. One day, he couldn’t breathe and was hospitalized with “atypical pneumonia.” Soon, he was on a respirator. I couldn’t leave his side.

One of his doctors pulled me aside and whispered, “Please, always use condoms.”

“Why?” I laughed. “I’m on the Pill.” At this time, I had only heard of AIDS on the news—something gay men in New York City were getting.

After Larry left the hospital, he insisted we use condoms. Then, he said he didn’t like them, so we stopped.

In August 1985, I was hospitalized for extreme fatigue, weight loss and swollen glands. They released me without a diagnosis, but my cousin sent me to an infectious-disease doctor, who shook his head when I told him of Larry’s illness and symptoms. He gave me an HIV test. It came back negative—but he told me I’d have to retake it.

“Do you have AIDS?” I confronted Larry. He said his doctor had said he might have “a slight case of AIDS.” My doctor said, “That’s like being a little bit pregnant.”

I dragged Larry to his doctor, threatening to leave him. His doctor was blunt: Larry had AIDS. There was no cure. We should never have unprotected sex. “I told you all this already,” he told Larry.

“Why didn’t you tell me?” I screamed. He broke down, begging me not to leave him. I couldn’t. I loved him too much.

My second test came back positive. Larry and I were engaged that December. I knew we would never be married: He looked like a skeleton. He died in March 1986—without saying “I’m sorry.”

I wasn’t angry—I simply missed him. I threw myself into my job. I barely dated. I blocked him out.

Then, in 1999, I got really sick. For the first time, I cursed him to hell.

Thankfully, I was “salvaged” on a mega-HAART regimen. Since then, I’ve vented some of my rage by fighting AIDS discrimination. I do a lot of speaking about and lobbying for AIDS. I work for an AIDS agency in New Jersey. I’ll admit it: I still need psychotherapy, but I like myself today.

The one thing I would ask Larry today: “Did you want to give this to me?” He was so possessive—I think he wanted to take me with him. But if that’s true, then it makes me even more determined to stay alive.

I don’t wish him to hell anymore, though. I feel like I got sick because I had so much venom in me—at him, at the world. I pray to God to help me forgive him. I want to.

I’m working on it.


ROAD RAGE

LORRAINE MITCHELL, 49
Charlotte, NC
Diagnosed 1993
Infector: Husband (deceased)

MY STORY
I was in my second marriage. I kept getting chicken pox. Finally, I ended up in the ER and got a positive HIV test. My husband never admitted that he had the disease. Made me take a second test and still denied it. But I found out that before we got married, he had been diagnosed with AIDS. Later, he confessed to using drugs. I stayed with him for my children’s sake, but I wanted to hurt him as much as he had hurt me. Once, I was in my car in the driveway and he stepped in front of it, so I hit him. And it felt good. He died of AIDS in 1997.

FORGIVE? FORGET?
Everybody preaches that I should forgive him, but I can’t. It would have taken him three little words to let me know he had HIV, and I could have protected myself, but he did what he wanted with my body. Since I can’t “let go,” I spend all my time on AIDS work. I travel to high schools to tell my story, urging them to take care of themselves.

IF HE WERE STILL HERE…
Oh, I’d still be trying to run him down with that car.

Victim no more

CATHY ROBINSON PICKETT, 38
Lakeland, FL
Diagnosed 1991
Infector: Rapist

MY STORY
In 1984, while I was a college freshman, I was raped by three men. No one thought I might have gotten AIDS—there wasn’t a test yet. Seven years later, I was six months’ pregnant with my second child when my husband and I discovered we were positive during a life-insurance screening. The law then banned disclosing which attacker had infected me, though a lot of detective work uncovered his name and that he had died of AIDS in prison.

FORGIVE? FORGET?
When we found out we were positive, all my outrage from the rape came back. I dealt with it by plunging into AIDS advocacy. But my husband never came to terms with what happened. We separated, and I married another man. Sometimes I wish my ex-husband could blame me—he might begin to heal. Because of the work I now do in schools—telling my story and answering questions about HIV—I have touched thousands of young people. I’d have to say my life is awesome.

I’D LIKE TO TELL MY INFECTOR…
What happened in your life to make you do this?

NO LOVE LOST

JUSTIN LIGRECI, 21
Staten Island, NY
Diagnosed 1994
Infectors: Biological parents

MY STORY
I was adopted at three weeks. Growing up, I was sick all the time, but nobody could figure out why. When I was 11, I had an HIV test, and it came back positive. We figured I had to have gotten it perinatally, from my biological mother. You couldn’t unseal adoption records before you reached 21, but we [eventually] found out my parents had been IV-drug users and my mother a prostitute. When I first found out I was positive, I got depressed. Later, with my [adopted] mom’s help, I started speaking publicly about my HIV and came out of it.

FORGIVE? FORGET?
I have no desire to meet my biological parents. But I probably would never have become a public speaker trying to save lives if I hadn’t become infected.

IF MY BIOLOGICAL PARENTS CALLED ME…
I’d hang up. I have nothing to say to them.

BAD BLOOD

JOEY DIPAOLO, 24
Staten Island, NY
Diagnosed 1988
Infector: Blood transfusion

MY STORY
In 1984, when I was four, I had a transfusion with HIV-contaminated blood during heart surgery. We found out I had AIDS in 1988. They didn’t start screening blood for HIV until a few months after my surgery, but we sued the New York Blood Center anyway for not minimizing the risk to their blood supply. They knew by then that AIDS posed a threat. We also sued my cardiologist for not giving my parents the option of putting off my surgery, which wasn’t an emergency, until the blood could be screened.

FORGIVE? FORGET?
Well, we settled with my cardiologist and won our suit against the New York Blood Center. And I founded the Joey DiPaolo AIDS Foundation, and I speak all over the place. Everything happens for a reason.

I WANT THE DOCTORS TO KNOW...
Thanks for fixing my heart. But all the rest? No thanks!

FIRST LOVE

SHANE THERIOT, 28
Columbus, TX
Diagnosed 1993
Infector: First boyfriend

MY STORY
I got HIV when I was 16 from the first man I’d ever had sex with, who was 24. We used a condom at first, but when I asked if he was positive, he showed me his last test results, which were negative, and I trusted him. We both liked unprotected sex better anyway. I got sick a month after we started dating. He tested positive after me, but we knew I must have gotten it from him. Strange as it may seem, my diagnosis didn’t mean that much to me. I was still in high school [and focused on] getting into college. And we continued having unprotected sex—we didn’t know about the risk of superinfection.

FORGIVE? FORGET?
I never felt any anger toward him. I was upset with myself for trusting someone I didn’t yet know well. If he hadn’t moved to Florida, we might still be together.

I WANT HIM TO KNOW…
I wish him the best of luck. I’m not sorry we were together. I honestly appreciate life so much more because of HIV.

THINGS HAPPEN

THOMAS CLODFELTER, 44
Greensboro, NC
Diagnosed 1990
Presumed infector: Girlfriend

MY STORY
In prison, I never had sex or got into drugs. Then, between getting out and my diagnosis, I was with three different ladies, two seriously, including my high school girlfriend, who I was seeing when I got the letter from the health department after donating blood. I cried and cried but told her right away because I didn’t want her getting any letter from the health department. She tested positive and blamed me, but I’m pretty sure she gave it to me, because an ex of hers had gotten sick with AIDS. I left so she could deal with it in her way. Three weeks later, we got together, and I told her I’d be there for her 100 percent.

FORGIVE? FORGET?
We didn’t stay together—it was just too complicated. But we’re still close friends. We’re both undetectable and doing the best we can. I have a wonderful life of service here as a spokesperson for the Triad Health Project.

I WANT HER TO KNOW…
I never blamed you. I had no right to do so. When you’re not using precautions, it can happen.

MOM’S FAVORITE

ANGELICA COLON, 19
Chicopee, MA
Diagnosed 1989
Infectors: Parents

MY STORY
My mother got HIV from my father, who was a heroin addict, so I was born with it. But I was the only one of us kids to get it, and I think that might have been why I was my mother’s favorite. When my mother got sick, my cousin told me my mother had a brain tumor, but I didn’t believe that. I remember I had been taking the same medicine [AZT] she was for as long as I could remember. So I just asked her on her deathbed, “Do I have the same thing you do?” And she told me yes. I was 4 years old.

FORGIVE? FORGET?
My father’s sister raised me, and my father still lives nearby. He’s been clean and sober now for two years, but he’s very sick with full-blown AIDS, hepatitis and Parkinson’s. I think he expects me to be daddy’s little girl, but I just can’t be. I’m definitely not glad that I have HIV—it’s especially not easy when you are first meeting people. There just comes this point where I think, Shit—I have to tell this person. On the other hand, being positive has made me much more political. I go to conferences, teen support groups. So I guess it’s made me a better person.

I WANT MY FATHER TO KNOW…
I don’t blame you, Dad. Shit happens, and you just make the best of it.

JUDGE NOT

CHARLON DAVISON, 54
Los Angeles, CA
Diagnosed 1986
Infector: Unknown

MY STORY
I must have gotten it from someone I was using drugs with. I turned tricks from time to time, to get money for drugs, but I just remember so many times we’d share needles, even when we saw the blood was still up in there.

FORGIVE? FORGET?
When I first found out, I said, “Fuck the world,” you know? I wanted to pass it on. But I didn’t. I got sober and worked through my anger, pain and fear. I learned who I was and to accept who I was—virus and all. I developed my own relationship with God. And I learned to live with the disease: If the drugs make your hair a little thinner, get a weave, you know what I mean? Looking back, I could have given it to someone myself and not even have known I did that, so who am I to blame anyone? First, I forgave myself; then, I forgave others. I believe you have to do that, or it will make you sick. Many of the people I used with I brought into Narcotics Anonymous and got sober with. I guess that’s how I sought forgiveness. Most of them are dead and gone now, sadly.

IF I KNEW MY INFECTOR, I’D SAY…
There’s a better life out there for us. You don’t have to go on living with secrets and shame.

BETTER TODAY

BRUCE CARMEL, 44
New York, NY
Diagnosed 1995
Infector: Unknown

MY STORY
In the early ’90s, I started using drugs and that helped put me in a gray area when it came to safe sex. I have to say that I consider myself to be my infector. Nobody raped me, coerced me or lied to me.

FORGIVE? FORGET?
I felt guilty for a long time about having become infected in the ’90s. People have said things like “You should have known better.” Was that true? Had I been reckless and self-destructive? Did part of me hate myself? It took me a few years to answer: No. I was just misguidedly looking for excitement, acceptance, love, intimacy and meaning. Sex and drugs made the pain go away for a little while. My alternatives were there, but I couldn’t see them at the time. So if my “infector” was the person I was then, I feel understanding, forgiveness, compassion and some sadness. I wish I had known better—not about HIV but about life.

I WANT TO TELL MYSELF…
I’m really glad you’re here today—smarter, happier and sober.

FOR BETTER OR WORSE

CAROLE MISELMAN, 56
Cape Cod, MA
Diagnosed 1993
Infector: Husband

MY STORY

My husband had an affair—he wasn’t perfect. I knew something was going on, but I didn’t confront him because then I’d have to deal with it, you know? I was a little bit cowardly myself. I figured it would pass and things would go back to normal. And they did. But then I started to get sick. I went to multiple doctors before I got my HIV diagnosis. They told me I was imagining my diarrhea and gave me Xanax, which I got hooked on. Finally, a rheumatoid-arthritis specialist asked me if I could be at risk for HIV. The test results just blew my world apart. I had two grown kids, I’d been married for years—this was not supposed to happen to me. My husband and I went into counseling, separately and together. I began to get involved in AIDS activism and education. And we started to heal.

FORGIVE? FORGET?
I was angry, sure—I remember writing a poem about blowing the roof off the house. But I couldn’t stay angry forever. He didn’t mean to give me HIV; he just made a mistake. Life is loving, forgiving and moving on. Our kids still don’t understand how I could forgive him. I just didn’t want to re-create my life without my husband. People thought that was odd—but you marry someone for better or for worse. Do people understand that when they get married?

I WANT MY HUSBAND TO KNOW…
I love you.


A Pathway to Peace

Still Angry at your infector?  Experts say:

Accept it.
“Anger is an understandable and normal reaction,” says HIVer and NYC psychotherapist Michael Shernoff, MSW. “I don’t try to talk people out of it,” but get them to “sit with it and know that it will subside.” Only if it doesn’t, he says, can it cause harm.

Own your part.
In many cases, it may be an “externalization” of self-anger for “having participated in behavior” that put you at risk, Shernoff says. That includes folks who trusted sex partners. “It’s not PC to say, but there’s still an unconscious complicity” in not protecting yourself.

Look deeper.
“It’s easier to stay angry,” says Shernoff, than to admit that you feel “hurt, sad, vulnerable. That’s the work of professional counseling.” Seek it out one-on-one, at your local AIDS agency—or from a good friend “who can ask you difficult questions and not just give you emotional chicken soup,” says Shernoff.

Consider forgiving.
A year after he was infected, says Boston HIVer and AIDS counselor Ed Schreiber, “I saw my infector. He looked very sick. I felt anger but also compassion.” Write, but don’t send, your infector a letter—it’s cathartic. Read Fred Luskin’s Forgive for Good (HarperCollins, 2003), or visit his website, learningtoforgive.com. And remember: You don’t have to reconcile to forgive. Plus, new research suggests it’s good for your health.



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