Thursday, December 20, 2007

A Life Positive: What we can all learn from Luis Montanez


(Cover story in the Fairfield Weekly. Dec 20, 2007 )

There was a time in human history when it was common for people to die from a simple cold, and they were even expected to. It only took one step outside without a jacket or one cold night's sleep.

A person living with HIV or AIDS was once equally as fragile. Maybe you'd live for a year, or 10 years, but there was always an expiration date. Since 1981, AIDS has been responsible for the death of over 25 million people around the world. In 2005, the disease took the lives of over 570,000 children. In the U.S., 60 percent of all AIDS cases are minorities (black, Hispanic or Asian)—and in CT that number is 63 percent. The fact that it only takes one slip-up—one pass at sex without a condom or one foggy night's drug-induced error—only enhances the fear that surrounds this still-misunderstood disease.

"Am I going to have this? I repeatedly told myself, 'I don't have it. I don't have it. Am I going to die?'" The question once haunted Luis Montanez, a 24-year old resident of downtown Bridgeport who living with HIV. He tested positive for the virus at 18 after finding out that his boyfriend at the time, with whom he'd recently had unprotected sex, was a carrier of the HIV virus.

We sat in the very doctor's office where Montanez was first tested six years ago, at the Ryan White CARE wing of Optimus Health Care in Bridgeport. "I didn't fear getting tested," he said. "I had to know. I made that decision to have unprotected sex. I made that decision to sleep with him. I thought I loved him. It ate me up inside."

Today, in the U.S., HIV and AIDS have become largely manageable. Because of medical and pharmaceutical advances, thousands of people who contracted HIV like Montanez, have now been deemed "undetectable," meaning their HIV viral loads are so low that they test negative for HIV. They still have the virus, of course, but the medication is able to keep it at bay. Thousands are happily living their lives with HIV.

With the medical advances, however, has come something of a sense of complacency; a reliable treatment is available, but there are many young people who were not around to see the devastation caused by AIDS when it first appeared, and have become somewhat complacent about it.

It's still a scary and life-changing diagnosis. But at some level, the fear lingers because a larger ignorance about the disease lingers.

So powerful is this almost willful ignorance that even some of our leaders remain in the dark ages about it. We live in a country that is taking a long, serious look at a man running for president who has said he wants to quarantine Montanez and anyone else with HIV.

And Iowa loves this man. Arkansas governor Mike Huckabee suggested in 1992 that we "isolate the carriers of this plague," saying that now is "the first time in the history of civilization in which the carriers of a genuine plague have not been isolated from the general public." It's been 15 years and Huckabee has still not publicly changed his stance. In fact, he stated on Dec. 8 that he will not "recant" his remarks.

Huckabee is obviously not helping to de-stigmatize HIV-AIDS. And it's to the detriment of young people in the U.S., many of whom are so afraid to get tested that it has literally become impossible to tell how many teens in U.S. may be carriers of the virus, which makes them the most important AIDS-prone demographic. The reported number of people in the U.S. with HIV or AIDS under-20 for 2005 was just over 2,000, but it is widely recognized that the actual number is much higher than that.

Perhaps not enough is being done to accurately educate young people of the seriousness of HIV and AIDS. Perhaps young people are so afraid to die that they don't want to know that they already have a life-threatening disease, even if it means they can save themselves. Is their sense of invincibility to blame, or is it their ignorance? Or is it something concrete like cowardly health classes in high school?

Montanez doesn't blame anyone. "Learn about it," he says. But he does believe HIV and AIDS patients have the responsibility to open up and inform the public. "We are giving this disease a bad name," Montanez says. "If you look at people with HIV and AIDS, not all people are open about it. Not everyone is coming out with it. If you're open with it and you explain how your life is with it, then people will come to an understanding that this is an illness. It's not a death sentence. If we don't have a loud voice and get out there with our stories, then people are going to be ignorant. They're going to look at it like, 'Well if you're so afraid to talk about it, then why should I be so calm?'"

Montanez is also a diabetic. He can't walk or stand for long periods of time like he could before and he's been unemployed for two years because of it. "I have more fear for my diabetes than I do for my HIV," he said. "The HIV virus I know is under control."

Montanez is one of the lucky ones to be taking only one pill per day. He pays for it every month by showing his Connecticut AIDS Drug Assistance Program (CADAP) card at the pharmacy, a card that's part of a pharmaceutical assistance program that pays for HIV/AIDS medications approved by the FDA. The Department of Social Services administers this program to people living in poverty with the disease. Not everyone is eligible for such a program, but according to published reports, it is currently saving the lives of over 1,339 people in Connecticut and 96,121 people in America as of 2006.

Montanez started on three pills and with the introduction of Atripla, he says it's like taking a vitamin every day. A decade ago, "pill cocktails" were the only way to go. Today there's the one-pill option for some. It has only light side effects and it's easy to swallow, reported Montanez. "I felt dizziness for about two weeks and then the body adjusts and it's a breeze, really," he said. He takes it before bed.

The cocktail is a prescription of a couple dozen pills the patient needs to take at specific times of day with food, no matter how sick they are. Each pill comes with harsh side effects like diarrhea, gas, nausea, heartburn and severe headaches, and there's always the possibility of becoming resistant to one or more of the pills. For some, the cocktail alone was enough to bring on serious depression.

The one-pill miracle has obviously made the treatment aspect of living with HIV and AIDS easier. Because of the stigma, every day is a fight. Physically, the disease is treatable. But mentally, its toll can be unbearable. Montanez talked about his ex-boyfriend's (the one who gave him HIV) ugly struggle with the disease.

"He was the type of person that knew he had this and he didn't care. It was malicious. He had the intention. He was angry at the world and he didn't want to live. I've heard from other people that he knew he had AIDS before he even got tested. But even after he found out for real, he gave it maliciously to other people. This disease is something that can really mess with your mind. Some people take it seriously and take care of themselves, but some people don't care and they hurt anyone they can on top of it. He wanted to bring everyone else down with him."

Montanez has learned from this part of his life that any time spent not being honest with yourself (or others) is time wasted. He's seen the drugs, he's seen the death, and he's still dealing with depression. (His CADAP card covers mental-health appointments and medication, too.) He hasn't turned to alcohol like so many of his friends, but he said his cigarette and marijuana habits have been known to jump considerably during hard times. His 2008 New Year's resolution is to cut them both out of his life.

"So many people turn to drugs when this happens," he said. "They really don't care. They just want to go. I have friends with HIV and AIDS who are on crack cocaine who had never done it before." Though its physical effects can be debilitating, Montanez has come to the realization that you must never ignore the deep, dark psychological side of HIV.

"I've been through the self-mutilation," he said. "People ask if it's because of HIV and I say 'no.' I'm sitting here looking at people who have relationships, people who are married. And I look at my life and I have to sit here and explain to every guy I meet, this is who I am. This is what I have. I'm HIV positive."

Being honest with yourself is one thing, but it's the daily tests. Montanez is young, he still wants to date and be social. "If you want to be trusted," he said, "you deal with it and you tell them, you say 'I feel deep within me that I need to tell you this. I'm not going to hide this from you, this is something serious." He said that not everyone responds in a kind way, and that he needs to be the bigger person. "I look at them and I say, 'Thank you for being honest with me, but please give me a chance.' But they're scared of me. They automatically zone you out sometimes."

He said, "You're going to get depressed, you're going to get miserable and you're going to feel like the world is over. You'll feel like you have nothing to live for, but you do."

Montanez goes out regularly to dance clubs—Gotham in New Haven, Cedar Brook Cafe in Westport—to socialize with friends and he's even had sex with a guy he dated for a few months who didn't have HIV. He says all this is a testament to being honest with himself and everyone around him. His dedication to mental health has brought him his physical health.

"I do everything that I used to do. This doesn't deprive you of anything. You deprive yourself. If you want to look miserable, if you want to be miserable with it, then that's all on you." He even went so far as to compare HIV to paying the bills. "What are you going to do? Depress yourself because your bills aren't paid? No, because then it gets worse. You're going to work at it. You're going to work until that's paid off and you're relaxed and comfortable. And then it's, 'OK, I have that done, what's next?'"

"I don't feel any different than I did before," Montanez said with a smile, "other than I do have it. It is in my system, I do have it. I'm living to fear the world instead. What we're going through now with war across the world is more fearful than this, but this is an epidemic. It's growing higher and higher, and more people need to get tested."

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