Time for serenity after courageous AIDS fight

By Richard Fabrizio, Portsmouth Herald Staff Writer

"People who say 'that's it' because of an AIDS diagnosis, what a waste."

It's a Friday earlier this month and the onset of winter is making its first appearance. Kevin Murphy and I are at Breaking New Grounds in Portsmouth. We're sitting at one of the tables in the windows overlooking Market Street watching the street scene. Gray skies move slowly over the square, making it look like snow is on the way.

The coffee shop has become our meeting spot, and our hours of conversation there give the fullest look at the emotional side of his physical fight with AIDS. Those talks became the roots of friendship.

Kevin, 43, of Dover, is gay. He grew up in an Irish-American family in a small peninsula community called Hough's Neck in Quincy, Mass. He moved to the New Hampshire Seacoast in 1988 and was infected with HIV shortly after. He tested positive for HIV in 1990 at age 33, and AIDS developed three years later.

I first met Kevin last Dec. 1 when he volunteered to be interviewed for World AIDS Day 1999. We met at AIDS Response Seacoast in Portsmouth City Hall atop Hospital Hill. We talked for more than hour that day in a dark office overlooking the city. One of his most important messages was that he was infected here on the Seacoast, that AIDS is a global disease affecting everyone.

Kevin was very ill at the end of 1999 and nearly lost his life. He walked with a cane and wore heavy winter gloves to protect his hands from a painful condition known as peripheral neuropathy, which makes the nerves extremely sensitive. He also suffered Wasting Syndrome that left him thin and frail. Doctors had given him three to six months to live.

Herald photographer Deb Cram approached me after reading the article from our first meeting. She suggested a long-term project on Kevin's life with AIDS. Kevin fully supported the idea, even though his immediate future was very much in doubt. His energy, spirit and hope prevailed and inspired a project that will publish five days shy of a year after we first met, and six months longer than he was supposed to live. Kevin Murphy is still alive and living with AIDS. This Friday, Dec. 1, is World AIDS Day 2000. Its theme is Men Make a Difference.

"The thing about this disease is you can't plan for your future. It takes away your dreams."

Every single day, living with AIDS (Acquired Immunodeficiency Syndrome) is a physical and emotional challenge. In addition to peripheral neuropathy and Wasting Syndrome, Kevin also has Kaposi's sarcoma, an AIDS-related cancer that causes tumors and legions. His legs are covered with 96 tumors. The cancer spread by 33 percent this summer, though a recent round of extremely painful topical chemotherapy has slowed its progression.

Various medications caused the peripheral neuropathy, and while doctors adjusted his medication to reduce the condition, it could take up to five years for the nerves to fully recover. At its worst, Kevin slept with thin gloves on his hands to reduce the pain. The fact medication caused the condition is one of the challenges of fighting AIDS.

"I have taken medication to save my life that has almost killed me," he says.

Kevin's various ailments often leave him feeling generally sick and almost always exhausted. He lives in constant fear that a new infection or disease will attack his body and put him back near death. But Kevin has never given in to the disease. In fact, after AIDS developed in 1993, he continued working to re-create his life in which he has made amends for drug and alcohol addiction.

His cousin, Shawn McGunagle, of Laguna Beach, Calif., has known Kevin since they were 2 or 3 years old. McGunagle saw the plight of his addiction, his recovery, diagnosis and his life after it.

"Frankly," McGunagle said during a phone interview, "it's been wonderful for my family to witness Kevin's growth."

Kevin has worked in a chemical-dependency recovery program, with AIDS Response Seacoast, has lobbied congressional groups on behalf of AIDS research, and has talked to several thousand students through educational programs.

He lives in an apartment with his dog, Sebastian, and cats, Duchess and Alix. He calls them his children. He lives independently on money from disability insurance. His family has also been very generous when needed.

"I have a good life," Kevin often says. "The only thing I could ask for is more of it."

His medication options to combat the HIV (Human Immunodeficiency Virus) are extinguished and his immune system is destroyed. Even the slightest cold is a severe threat, and his fight is now limited to slowing the spread of Kaposi's sarcoma and other AIDS-related diseases. Otherwise, he fights the physical and emotional anguish associated with AIDS. He wears two opiate-based pain-killing patches, one on each arm because his stomach can no longer handle the intensity of oral pain medication. He needs to replace them every 72 hours to combat the pain.

The extent of AIDS is often measured by what is known as "T-cell counts." The term is the popular name for a cell in the immune system medically known as "CD4+ T-lymphocytes." HIV attacks CD4 cells as the structure of the cells makes them the easiest target. HIV invades the cells and uses them as breeding grounds for new virus particles, eventually killing the cell. As CD4 cells in the immune system decrease, the susceptibility to disease and infection increases. HIV becomes classified as AIDS when CD4 cells drop below a count of 200. Kevin's CD4 count was at 56 earlier this month.

"Years ago, anything under 200 was not good," Kevin says. "And 56 was critical."

The advancement of medicine to control the associated diseases has allowed people like Kevin to continue living actively, and Kevin stayed fully active as long as he could after the onslaught of AIDS. His health forced him to resign from his full-time work at the chemical-dependency recovery center late last year. He describes the past year as "semi-retirement," during which he continued speaking to students in schools throughout the region. His other focus this past year was to find a sense of peace and serenity in his life.

"I'm still alive and staying alive is my main focus now," he says.

To stay healthy, Kevin's life revolves around fighting his disease. He visits specialists in Portsmouth and Boston who work to control his cancer. Other therapies include acupuncture, massage therapy, chiropractory, yoga and psychotherapy. He recently began studying Buddhism to help him relax and deal with his pain and struggles. Psychotherapy helps him hold everything together.

"I have a lot of fear of pain," he says. "A lot of times when you think of catastrophic illness, you think physical pain, not the emotional effect. I'm so afraid I'm going to turn the wrong way and screw everything up."

Last year's fight with death weighed heavily on him. While he picks his moments where he relaxes, such as going to see his cousin in California in July and visiting Provincetown in June, he can never take a vacation from his work because his work is keeping himself healthy.

"No matter where I go," Kevin says, "I have to bring all my medication with me. I have to stay on my routine. I'm afraid to let go … to have as much passion as I did, because it was hard to go through the pain and being near death, and I will have to go through that again.

"But I would like to live without thinking the other shoe's gonna fall. I'm not afraid of dying. I'm afraid of getting sick again and the pain. I've never felt pain like that before."

The peripheral neuropathy was among the worst. He described washing his hands in cold water as feeling like a series of knives cutting through his skin.

The first half of 2000 was spent just trying to get his body back to a healthy level. It included weekly injections of testosterone and steroids to rebuild his ravaged body. He began feeling better in the late spring, but the treatments continue because his Wasting Syndrome has returned.

"I decided long ago, I can't leave my life in one person's hands."

Kevin takes a very active role in his health care, sounding at times like a doctor to his own patient. His involvement is not in disrespect to his doctors, but is his need to be informed and involved. He needs to be his own daily physician to stick to the strict medication schedule. He needs to constantly educate himself about his illness and the medication he takes for a sense of peace and comfort. But mostly, he learns more about the disease because he believes it is to his advantage.

He is almost intrigued by the disease slowly destroying him.

"If it wasn't so deadly and in my own body, I would be fascinated by it," he says. "It's a horrendous thing because it fights back. I sometimes talk like it has its own brain, but it feels like it does. It gets around anything you throw at it."

And HIV attacks like a monster bent on destroying.

"It goes after what keeps humans alive," Kevin says. "It gets in through the reproductive system and destroys the immune system."

Dr. Bruce Dezube is Kevin's cancer specialist at Beth Israel Deaconess Hospital in Boston. Dr. Dezube has worked with Kevin for the past five years.

"I have patients who question everything I do," Dr. Dezube said. "And I have others who never question me. Kevin questions everything."

Kevin also works with Dr. David Itkin, an infectious disease specialist based at Portsmouth Regional Hospital. Dr. Itkin offers a very similar assessment of his patient.

"Kevin is very strong willed," Dr. Itkin said. "A little bit hot-tempered. He gets his Irish up. But I think those qualities have served him well."

Both doctors said patients like Kevin are inspirational.

"There's no question seeing patients survive with this illness is inspirational," Dr. Itkin said. "Fifteen years ago, we wouldn't be talking about Kevin. Kevin has beaten the odds, has done things on his terms, has continued to do the things he wants to do."

While medical advancements have extended Kevin's life, last December's illness caused him to fine-tune his expectations. Life itself is no longer his most important goal. He balances it with the requirement of quality of life and that more than anything fuels his need to know about his disease and question his doctors.

"Dr. Dezube is a great doctor," Kevin says. "But he's the type of doctor who wants to keep you alive at all costs. I don't necessarily believe in that. Not if there isn't a quality of life to go along with living longer. It tears your heart out when you're up and down. It's a rollercoaster."

Kevin receives topical chemotherapy treatments in addition to traditional chemotherapy at Dr. Dezube's office at Beth Israel. The topical procedure is among the most painful treatment he receives. Liquid chemotherapy is injected directly into the worst tumors on his legs. Kevin describes it as shooting acid into an open wound.

"I have to psyche myself up to deal with the pain," he says as we ride together down to the appointment earlier this month.

Dr. Dezube and Kevin talk for a few minutes before beginning the injections. Kevin had recently confronted the doctor about what he feels is the doctor's tendency to give him false hope. The doctor speaks frankly.

"I'm not giving you false hope," Dr. Dezube says. "I'm giving you real hope. Remember, you're supposed to be already dead. How long ago were you supposed to die?"

"Six months ago," Kevin says.

The injections begin a few minutes later. Kevin winces in pain and tosses his head back with each injection.

"I think you're getting better," the doctor says between injections. "I really do. You look a lot better than you did six months ago."

Another series of injections causes Kevin to groan.

"They don't hurt that much," Kevin says. "I'm trying to pretend it's not happening. I'm trying to go somewhere else.

"Ohhh. ...I'm OK, I'm OK, I'm OK. No more, I can't handle anymore."

"My mother never gave me her approval."

Kevin's mother, Edith Murphy, passed away in 1979 when he was 22 years old. His father, William McGunagle, died the following year. He says his parents both knew he was gay before they died although they never confronted him about it.

"My father never asked," he says, "but I think he knew. My mother never gave me her approval."

But one of Kevin's most precious memories is a night he walked his mother to her car while he lived in Boston. A friend of Kevin's who was openly gay said hello to him as he walked past.

"I looked into her eyes and she didn't cry," he says. "It was a sort of complete understanding. She saw and she understood and she accepted. I was treated like a person and that wasn't the way it was at home. I think my mother was proud because I always had the courage to be myself."

She died a few weeks after that night. At her wake, Kevin and his father shared as much of an acknowledgment of his homosexuality as they ever would.

"At the wake," he says, "my mom had bought me this coat I loved. It was a long full-length black coat with a fur collar. When my father saw it he asked, 'Where did you get the Rockefeller coat?' I told him ma got it for me for Christmas and he just kind of smiled."

Kevin always knew he was gay. A favorite story he shared involves a cherished bicycle his mother bought him when he was 10 years old. The bike was pink, or as he quickly corrects while laughing, "It was raspberry." He rode the bike until he was 14. While the story is fun, it is also begins the painful tales of his youth.

His childhood memories, especially his junior high years in the early 1970s, are filled with pain and unfair social abuse. He was teased, ridiculed and beaten because he was different. He was not openly gay.

"If I was too open, of course, I would have been crucified," he says. "I just wanted to be gay and left alone. Not to be spit on and pushed into lockers."

The roots of Kevin's alcohol and drug addiction stretch back to junior high. Drinking allowed him to escape from the constant challenge of not fitting in and not being accepted.

"It began in junior high on weekends," he says. "I realized it relaxed me. I was afraid to go to school. Monday to Friday was just hell for me. When someone grows up hated, when every single message I got is you're hated and less than everyone else, where do you take it? I took it to alcohol and drugs."

Kevin struggled throughout his teen-age years. One of the biggest challenges was the lack of any role model. It left him to turn to pop culture for a role model and David Bowie was it.

"He called himself an androgynous bisexual from outer space," Kevin says. "That was the only thing I had to look at."

It didn't take Kevin long to flee his small community for the freedom of the big city. He went to his first gay disco in Boston when he was 17. He found a sense of belonging there because he wasn't persecuted for being different. People in the gay community were friends and from that moment on it was his "family of choice." He moved to Boston shortly after graduating high school, never considering college because he feared it would be too much of the same as he suffered in high school.

"I knew there was a gay community out there and I wanted to be part of it," he says. "I didn't go into the city to join the gay community. I was always gay. And I didn't go into the gay community to be invisible. I was very visible."

In Boston, Kevin began chasing his dreams, working as a hair stylist and an instructor. He also began a fast-living lifestyle that would destroy the person he wanted to be, although it would also create who Kevin is today.

"Eventually, I got lost in addiction."

Gay nightclubs and discos were one of few ways for young gay men to connect with one another, Kevin says. But it fueled a destructive lifestyle that moved past alcohol abuse to include cocaine addiction. It was the death of his parents and particularly his mother, though that sent him spiraling furiously into full addiction.

"When I was growing up," he says, "I never thought that my father loved me, but I knew my mother loved me. That's why I was so broken up when she died. I thought she was the only one who loved me."

Kevin spoke about his addiction in a classroom discussion at Oyster River High School in Durham last spring. He held spellbound a class of about 25 seniors in a sociology class. His honesty drew intent stares from students who sat in a circle of desks around him.

"I was on a collision course long before HIV became a problem," Kevin began. "My collision course started when I was in junior high and started drinking."

He told the class how he and friends started drinking beer, but quickly moved to hard alcohol. He knew how to mix cocktails at age 13. The list of illegal substances he abused, mostly during his years in Boston, included marijuana, crystal meth and cocaine. He drank nearly every day during his 20s.

"My goal was to go to New York and work in fashion," he says. "I was on my way, too, but cocaine and alcohol forced me to give it up. I didn't know the power of addiction, and I got lost in it for a long time. That is my biggest regret."

In the early 1980s, talk of a "gay cancer" started to hit the streets. Kevin says he first heard about it at parties, but didn't really pay attention to it.

"I thought it would go away," he says. "I thought the government would take care of this with all my heart."

But within a couple years, AIDS, first known as Gay-Related Immune Deficiency (GRID), began to quickly spread through the gay urban community.

"I was very social," he says. "I knew hundreds of people in Boston in both the gay and straight community. And people started disappearing. You knew you couldn't ask why, but you knew why. I drank more to deal with it, then cocaine. It blended to help me keep my head in the sand."

Kevin estimates 90 percent of the people he knew in Boston have died, including some of his closest friends.

"They just disappeared."

It's kind of ironic."

Addiction robbed Kevin of nearly all his desires and goals by 1987. It also put him at risk of losing his relationship with his brother, Walter Finch. During one phone interview, Walter said he had very little respect for his brother while he was abusing drugs and alcohol.

"It really bothered me because I really loved him," Walter said. "But I couldn't respect him."

Walter was one of the first people Kevin spoke to after he decided to try to break his addiction.

"He called me and told me he was going to work to try to be sober," Walter said. "I had talked to him about that a number of times and was praying for that. I know it was our mother on the other side that reached him, reached into his heart and mind, and convinced him to go to someone for help. He was dying of alcoholism."

Kevin decided to move from the city to begin drying out. His brother suggested Portsmouth because it would be a quieter place. The change of scenery didn't work at first.

"I thought it was the country, not a lot of alcohol and no cocaine," Kevin says. "And AIDS wasn't an issue. Within a week, I knew where to buy coke and knew where to drink."

Kevin entered a drug and alcohol treatment facility a year later convinced it was his last chance to get sober. But fate played its cruelest trick on him in the meantime. After he tested positive for HIV, doctors performed a medical history review and traced proof of the infection to an allergic rash related to HIV in December 1988, just weeks after he moved to the Seacoast.

"I traveled on vacation to San Francisco, New York, Los Angeles," he says. "I partied in those cities like a mad man and I didn't get infected. Then, when I move here, I'm infected within weeks. But AIDS is my destiny. I would have been fighting it no matter what."

During his time in recovery, Kevin fought his thoughts that he could have been infected during his drinking and drugging. Safe sex was not high on the addict's list of concerns, he says. But he knew it was something he had to face. He knew it was the most important thing in his recovery.

It took about a year into his sobriety before Kevin committed to being tested. He prepared himself for an HIV-positive result because of the number of years he practiced unsafe sex. The HIV test usually takes no more than two weeks to come back. Kevin says it took three weeks for his, and he further prepared for what he believed was inevitable.

"When I called the clinic in Dover," he says, "there was a woman on the phone; she had a tone in her voice, a tone of sadness. She didn't mean to, but I've always been good at feeling how people are."

After receiving the official results, Kevin says it still didn't sink in or feel completely real to him. His close childhood friend, Richard, accompanied him to a clinic in Portland, Maine, to begin a medical assessment. Reality hit Kevin hard on the steps of the clinic building.

"As soon as I saw the sign on the door," he says, "everything, everything hit me like a sledgehammer that this really was happening."

"I'm proud of who I've become."

Kevin is 11 years into his sobriety, something he holds very dear. The decision to stay clean and sober is not because he has AIDS.

"My health wouldn't keep me from drinking," he says. "Being clean and sober is the most important thing in my life. My life as an addict was miserable and I don't ever want to go back to that misery."

His addictive background offered another challenge to staying healthy. He must take pain medication to survive and points out the irony of a former drug addict taking around-the-clock pain relief drugs.

"Pain medication is a narcotic," he says. "I swore years ago I'd never take another drug. But when you live in great pain, it changes your point of view. I talk to my friends in AA about it. I'm using what I'm supposed to use and how I'm supposed to use it."

His Gay 12-Step group is one of his primary foundations today. He calls the group his family of choice and looks forward to each meeting. He celebrated his 11th year of sobriety at a meeting on a Friday night at the end of September. In a candlelit room at Hospital Hill, he and about 30 other gay and lesbian recovering alcoholics and drug addicts shared their stories and thoughts. Kevin led his anniversary meeting.

"When I tested positive," Kevin says, "I asked God if I could have 10 years to make up for the years I messed up and I have had 10 years. I had friends who fought for gay rights and better HIV medication, and I did nothing except drink and snort cocaine up my nose."

Kevin's cousin, Shawn McGunagle, said Kevin has not stopped amazing him since he recovered from addiction.

"He's not a survivor, he's a fighter," McGunagle said. "He's not a victim, he's a winner. I knew he would win out as long as possible. It's just something he has about himself."

Lynda Schwartz of Kensington, Kevin's sponsor and friend, joined him at his anniversary meeting. Schwartz has been Kevin's sponsor for 10 years. She often jokes she is only his temporary sponsor because that is how their relationship began.

"We met at various meetings," Schwartz said. "One day, he asked me if I would mind being his temporary sponsor. I told him I would until he got someone. And I was his temporary sponsor for seven years."

Schwartz became his sponsor shortly after Kevin tested positive for HIV.

"I walked up to him and asked him if he had gotten the results," she said. "He kind of got this broken smile, and he said, 'It's positive, but it's not going to get me.' I knew he would need someone to talk to."

Schwartz credits Kevin for renewing her desire to be a social activist. She was an activist in the 1960s, having protested America's involvement in Vietnam and for civil rights, but time went on and her activist spirit did, too.

Kevin began working at AIDS Response Seacoast and set his sights on his sponsor to lend a hand. She eventually joined him on the ARS board of trustees.

"I took out my checkbook," Schwartz says, "and he said, 'No, no, you have to be a real volunteer and not a greenback volunteer.' He got me back, got me interested in volunteering again. I've always said he's made me better, he's made me better."

"If I never did another program, I'd know I've done all that I could, but I'm not saying I'd never do another program."

Soon after Kevin completed his recovery treatment program, he began work to help other members of the gay community and others struggling with the vise of addiction. His work as a counselor at the substance-abuse recovery center ranks among his proudest accomplishments. In a way, he relived his own recovery in the process.

"You can see the life come back in their eyes," he says of the patients with whom he has worked. "They come in with these dead eyes and you see the life come back – I miss that."

His educational programming work with area teen-agers is another aspect of his activism that helped re-create himself with a strong sense of pride. He has talked to several thousand students in the past eight to nine years. Each and every time is special, he says.

One particular student presentation last December offered the best glimpse into the work's fulfillment for him. A student came up to him after the presentation and hugged and thanked him. It was the best Christmas present he received last year.

"He was having difficulty fitting in and he was drinking to cover it up," Kevin says of the student. "I'm doing this for the kid in the back of the class. I've probably talked to a thousand kids in the back of the class."

Kevin recovered significantly by summer from his serious complications of last winter and poured himself into a heavy schedule of discussions at schools throughout the area. October included several trips each week to schools in Massachusetts, in addition to his appearances at Seacoast schools. He admits the schedule wore him down, but the chance to reach out to students is not something he would ever sacrifice. Giving students who may share the challenges he faced as a teen-ager a role model other than David Bowie is something he takes very seriously.

His discussions with students are honest and from the heart.

"I tell them abstinence is the best way and I tell them about practicing safe sex," he says. "If I had kids of my own, I'd want them to be abstinent, but I know in my heart, 99 percent of those kids are not going to be abstinent.

"I knew how to protect myself, but I was abusing drugs and alcohol. I made an irresponsible choice and it's going to cost me my life, eventually. Eventually."

As October drew to a close, the effects of his busy schedule of appearances was showing. He looked weary and was fighting a cold as we met during the first half of this month. He talked about the need to cut back and how he felt he had made amends at this point for his past. He also talked about the need for someone to follow his work with work of his or her own.

"I'm not as well as I was and I can't be out there all the time," he says. "I have to believe there are other people who have the passion and more stamina to take on the fight. I know if I don't slow down, I'm headed for disaster. A lot of the stuff I create. I say yes to everything because I'm afraid people will forget me."

"I wish I could go back."

Kevin and I meet once again at the front table in Breaking New Grounds. Late fall seems to bring a sense of melancholy. Falls seems like a new beginning, he tells me. Our conversations are usually free flowing, but this one goes steadily backward in time. Back to his days in Boston to a time much simpler than today. Back to where he was comfortable in his own skin, as he says.

"There's a part of me," Kevin says, "I look around at these young people and going into Boston and remembering my past, and I wish I could go back."

But the look back comes with a dose of the present. Kevin isn't blindly ready to trade where he is today for another day or month or year in his past. He, like so many people, fantasizes about what it would be like to relive yesterday with the knowledge of today.

"I don't know if I'd do anything different without the knowledge," he says. "But if I could take back what I've learned the hard way, my life would be perfect. But I'll keep what I have if I can't have the knowledge."

Kevin says his life in the city was beautiful for a time because he didn't have a focus. And if he did, it was to be young and free and unconcerned with problems and challenges. But Kevin says his time in the city wasn't wasted time because he eventually learned life's lessons from it. It took much of his 20s, though, to unlearn things he learned as a teen-ager.

"I didn't think I had much of a brain," he says. "I never thought I had great intellect so I always used the outside to get in."

He used what he says was a great smile to meet people and to succeed. But as time heals all wounds, it also reminds that physical beauty is only skin deep.

"I used my smile to get through life and you can't do that forever," he says. "As you get older, the smile isn't as bright and you get wrinkles."

His 30s and early 40s have been about discovering and using an intellect he never felt confidence in as a teen and young adult.

"In the last 10 years, I've realized it's the intellect that gets you through life, not the looks," he says. "In the last 10 years, I realized that I had both."

"Curing a disease should not be a competition."

Nothing gets Kevin's intellect or his Irish up more than fighting to get various medications. Dr. Dezube said patients like Kevin who fight for access to medication are very important in the ongoing battle to control and possibly cure AIDS.

"People who don't have AIDS or HIV don't know how hard the challenges are," Dr. Dezube said. "The obstacles before these people are enormous."

Many of the obstacles result from the federal process of approving experimental drugs and the reluctance of pharmaceutical companies to offer them to patients. Kevin recently fought to get an experimental cancer treatment. Initially, the company refused to allow him to begin the treatment because he was already using another treatment procedure.

"The company said no because it was not in its protocol," he says. "I went ballistic."

Kevin subsequently received written approval from the National Institute of Health to begin the experimental treatments and later received approval from the pharmaceutical company. But three weeks later, the company said it would not send the medication even after Kevin signed a waiver freeing the company from liability.

Dr. Dezube said he recommended Kevin contact the company personally.

"No one argues as much as the patient," the doctor said.

And Kevin was more than up to the task. He spent a week calling Washington state before he spoke to a company doctor. He pleaded with the doctor to allow him to take the medicine and the company eventually agreed.

"He agreed that some protocols are not written with the patients' rights in mind," Kevin says. "The HIV community has fought tooth and nail to get fast-track approval for these experimental drugs."

Patients like Kevin serve as watchdogs for the medical and science industry. AIDS and HIV patients have made it easier for other cancer patients to gain access more quickly to experimental drugs. They helped rewrite the rules for how you get experimental treatments, Dr. Dezube said.

"Kevin helped the drug company and taught them to be more sensitive to his needs," the doctor said. "It's important for the real people who have AIDS and HIV to make companies realize that they are real people. He did that."

Medicine should not be strictly a business, Kevin says. Too often in his experiences, the work to cure and control AIDS has become a competition between companies and even countries. Companies compete to sell their drugs and do not openly share information. That must change in the future, Kevin says.

"It should be a collaboration. But it's not. And it never has been."

"I didn't realize how lonely I am for romance until you brought it up."

It took nearly the entire year for us to reach a level of trust where we could talk about love and what he may have lost out on. It was something I knew would stir emotions and I felt badly asking him about it. I told Kevin at the end of one our meetings I would ask him about it during our next talk. The next talk was our car ride to Boston where he received the painful chemotherapy injections.

That day in the car as he drove down Interstate 95, he talked non-stop for nearly the entire ride. It's when he said, "I didn't realize how lonely I am for romance …" His last relationship was in 1992. It was the first relationship he had after getting clean and sober. But it ended not long after he tested positive for HIV. The man couldn't handle the reality.

"He is a nice person," Kevin says. "He never said he would leave me because I had tested positive, but he began to become emotionally distant. He was afraid to make memories with me. He thought I was going to die right away."

The lack of companionship takes a little away from Kevin's accomplishments. After the break-up of his last relationship, Kevin threw himself into his activism and work and time rather quickly passed by.

"I looked healthier in 1992," he says. "I'm not getting asked out as much as I used to. And I'm scared to ask someone out as strong as I make myself out to appear. I'm scared of rejection."

Not being able to share the life he built the last 11 years is difficult.

"I guess I am lonely for companionship," he says. "But I feel it's too late, I guess. I hope I'm wrong. I'd like to go to a movie or go into the city or to a museum with someone. I can do that with a friend or myself, but it's not the same as a date."

He has been in love three times in his life. One of the truest loves lasted for 28 years, from high school to a few years ago. Kevin and a high school friend, Richard, were intimate in high school for a couple years. They later became just friends and were forever bound by the destruction of AIDS.

Richard supported Kevin when he tested positive for HIV and later developed AIDS. Richard himself was diagnosed with AIDS in 1993 and died in 1996.

"He was the biggest part of my life for 28 years," Kevin says. "He had helped me fight my addiction and bailed me out of the trouble I'd gotten myself into over the years."

But Richard was one of the many people who do not share Kevin's success. No medication helped him and he also became depressed and couldn't fight.

"I wanted to fight for him," Kevin says. "I wanted to fight for both of us, but he wouldn't let me. He was ready to die. I couldn't and still can't accept that decision. But he taught me about that."

After Richard died, Kevin and his cousin Shawn made a panel for the AIDS Quilt in Washington, D.C. Each panel on the quilt represents a person who has died from the disease. His love of his friend and his trip to Washington moved Kevin to become more politically outspoken in efforts to raise awareness and to increase research for a cure.

"If our government had spoken up sooner, there might not have been as many people who died," Kevin says.

"Why I get caught up in politics? I know what can happen. I know what has happened."

Kevin and I met on Election Day. He had spent most of the morning crying because he was so nervous about the vote.

"Everyone says the country won't change much no matter who gets elected," he says. "But I keep seeing the quilt and that colors my perspective."

Kevin watched the presidential campaign with intensity. He spoke out for Vice President Al Gore and spoke out against George W. Bush. He even wrote Ralph Nader to ask him to abandon his third-party candidacy because he feared it would cost Gore the election.

As the unsolved election drifted from days to weeks, Kevin found himself in fear of losing the advancements made by the gay and HIV community during the past eight years. He bitterly recalled the 1980s when the Reagan administration shied away from AIDS as an issue in the country.

It was 1997, after 71,716 AIDS cases were diagnosed, and 41,027 people died before President Ronald Reagan used the word "AIDS" in public for the first time. That same year, Vice President George Bush was chastised by members of the public when he made a call for mandatory HIV testing.

"In the last eight years," Kevin says, "there's been more advancements in the treatment of HIV and related infections than in the last 12 years. It's so important to keep the fight going."

Kevin fears a Republican presidential administration could lead to decreased funding of AIDS research.

"Everything I've worked for and the gay community has worked for could be lost," he says. "We're at the point where we can't afford that. We're just understanding how to slow AIDS down and how to treat it."

"I've seen the other side and I'm not afraid to die."

The difference between this year and last is tremendous. Kevin went from standing at death's door to a busy holiday season filled with great expectations. The holidays are his favorite time of year and his heart is filled with joy heading into them. Included in his schedule of events this month was his 25th high school reunion this past Friday night. It's something he has looked forward to for several months. In a way, it is his life coming around full circle.

"I've spent the last 10 years trying to make up for my mistakes," Kevin says. "I think I have made amends, but now I know I'm supposed to take some time to enjoy the life I've built.

His last great challenge is to find a serenity that has mostly eluded him his entire life. It's part of the reason he continues his yoga classes and is studying Buddhism. He attacks life with claws and while that helped him become who he is, he knows he is ready for full retirement, as he says. He has made out his will and made his final arrangements. It was a painful experience, but it is done and he has his whole life ahead of him.

"I was very lucky," he says. "Why am I alive now? I don't know. A year ago, the doctors were talking about me having three to six months to look at life."

His T-cell count of 56 is very low and leaves him at risk, but he's beaten the odds before.

"Sure, it's not good," he says, "but is it impending doom? I don't know, but I don't think so. I don't think I'm dying. I think I would feel that intuitively. But that could change in a heartbeat."

Enter supporting content here

Imagine New Hampshire equal and just for all!