Saturday, August 28, 2010

On the Duality of AIDS

On the Duality of AIDS: An Excerpt from Journeys Through Darkness--A Biography of AIDS



With the latest news about steps--maybe baby steps for now--toward finding an AIDS cure, I was thinking about the duality of HIV/AIDS as part of the duality of our life, in general. I remember Kurt Weston's words, when I interviewed him for A&U Magazine and, later on, while I was writing his biography, Journeys Through Darkness. Kurt is an amazing person, one I've met while covering the pandemic. A fashion photographer, he was left legally blind--he cannot see anything with his left eye and has only some peripheral vision, with floaters, in his right eye--due to misdiagnosed CMV retinitis. The experience has forced him to learn how to photograph again. As a result, he has become an award-winning photographer with works showcased in art shows around the country.

Here is an excerpt from the last chapter of Journeys Through Darkness, a chapter I called "Arrival of the Angel," after one of Kurt's images that resembles a scene from one my my favorite movies, Angels in America (those who've seen the movie will recognize the scene). The excerpt deals with the duality of AIDS and the very fine line activists, patients and medical professionals need to walk, in order to continue fighting the pandemic in this day and age.

Hope you'll enjoy the read. As always, thanks for stopping by,

Alina Oswald
Writer/Photographer/Author
Journeys Through Darkness: A Biography of AIDS



Journeys Through Darkness
An Excerpt from Chapter Nine: Arrival of the Angel


"As it happens with everything in life, there are always two sides to a story. It’s part of the duality that governs our entire existence. The same stands true in the world of AIDS, forcing individuals to walk a very fine line in order to keep focused on what’s really important.
front cover of Journeys Through Darkness a biography by Alina Oswald with photographs by Kurt Weston
Journeys Through Darkness a biography by Alina Oswald with photographs by Kurt Weston
One aspect of the duality of AIDS may be explained by the very life-saving medications introduced in the mid-nineties. The HAART regimens had a so-called “Lazarus effect,” the coming back to life from the brink of death effect on HIV/AIDS patients. Before the advent of the new antiretroviral medications, AIDS was a feared disease that sentenced its victims to an agonizing and silent dying process. Back then, too many of Weston’s friends got sick and died horrible deaths. Back then, infected people had to deal with the reality that they were HIV positive and there was nothing that they could do to help themselves. The photographer can still recall the emotional and psychological stress his friends had to bear dealing with their disease, its discrimination, and stigma.

In the mid-nineties, as a direct result of HAART regimens, people living with HIV/AIDS started to get back some of the normality of their lives. Because of the new medications, it didn’t take them long to start feeling well enough to resume their work. They were not “damaged goods” anymore. Rather, they could once again consider themselves successful members of society. For them, AIDS did not equal DEATH anymore. They were not dying of the disease anymore and they refused to be treated as if they were; therefore, they wanted to end the stigma and the “AIDS is a death sentence” mind-set.

But the mind-set didn’t quite go away so fast. Companies were not hiring people who, they believed, didn’t have much longer to live. And so, AIDS patients started to conceal their disease. They could do it because they were healthy enough and had enough energy again. Unfortunately, not long into their new treatments, patients also started experiencing new side effects and, with them, the new face of AIDS, which soon could be easily identified. And so, the AIDS-related stigma and prejudice couldn’t quite go away either.

“People [would ask] me ‘why are you trying to get your MFA or working so hard on your career, why don’t you enjoy the time you have left?’” Weston says, remembering the remarks from when he was working on his MFA in photography. “I don’t see myself as a person who’s gonna die anytime soon and I want to do something with my life… You know how horrific it would be for someone to tell me that ‘I’m not gonna give you a grant to go back to school because you’re basically a dead person’?”
When the HAART regimens were made available, and then, in time, started saving and extending lives, the new treatments slowly began to transform AIDS from a terminal illness to a manageable one. With the occasional exceptions, in Western countries AIDS does not equal SILENCE anymore, nor does it equal DEATH, unless people let it. Therefore, nowadays, some relate living with HIV/AIDS to endurance; to the responsibility of keeping up with daily life-long treatments and dealing with their side effects; to the ability of juggling a variety of issues of a wide range of intensities on a daily basis, while still being able to sustain a high level of normality in life; or to learning the art of living fully, while being infected with a still-deadly virus.

black and white image of a man looking up, his palms behind his back; Arrival of the Angel, photo by Kurt Weston, featured in Journeys Through Darkness a biography by Alina Oswald
Arrival of the Angel, by Kurt Weston, photo published with photographer's permission. Arrival of the Angel was included in Journeys Through Darkness: A Biography, by Alina Oswald, with photographs by award winning photographer Kurt Weston


Yet, sometimes, the very idea of people “living” with HIV/AIDS and not “dying” of it anymore translates into the illusion that AIDS is somehow not a problem anymore. As a result, complacency starts settling in because AIDS is not considered an immediate life-threatening disease anymore.
The non-imminent deadly danger associated with the disease also means less funds being allocated to AIDS support groups. Therefore, non-profits in need of these funds have to find new ways of keeping people interested in the disease and its cause. As a result, there are a lot of mixed messages going out regarding HIV/AIDS, affecting mostly the young generation that has never lived in a time when AIDS was a sure death sentence, and, therefore, cannot understand the magnitude of such a disease.
Most of those who are not infected do not have a clue what it means and what it takes to live with the virus. Several years ago, Kurt and Terry traveled to Sacramento with a group of Very Special Arts [VSA Arts] California members to lobby for the HIV/AIDS budget. One of their constituents went to the office of the Congress and explained why continued funding was necessary. The people of the Congress were totally surprised because they’d been thinking all along that HIV/AIDS patients could take a pill and be done with the disease.

The truth is that HIV still infects and kills a lot of people, even in countries like the U.S.—confirmed by CDC, over fifty thousand Americans are newly diagnosed with HIV every year. The disease remains a killer. While Kurt Weston deals with the fear of dying from AIDS by confronting it, others deal with their fear by surrendering to it, or by choosing to “veg out and live as if they were retired,” as the photographer puts it. It would be easy for him to do the same, to just give up on his fight; to receive his disability check and live off his life. But that kind of surrender has never been part of his genes, not even at times when he has found himself on the brink of depression.

In that sense, Kurt Weston has always been a warrior, yet never considered himself to be one. Rather, the photographer has always thought of himself as more of a passive person and, in many ways, an introvert. The positive energy necessary for his becoming a warrior has come in stages, through his diagnosis and during his “battle” with AIDS. He believes that people are not born warriors, but rather they choose to learn how to become warriors in order to battle whatever obstacles life throws in their paths. “I think that [when] you’re affected by certain life situations, you have to endure, and then you have to react appropriately,” Kurt Weston explains his warrior attitude towards life and AIDS."

Learning through Art

Learning through Art: AIDS Book Reviews


Writing is a form of art. Writing, as an art form, takes shape through short pieces of creative work, creative writing, and also through longer works, such as books. When it comes to books, there are many out there, but not that many that deal with HIV/AIDS. Yes, some of us know the 'classics' And the Band Played On being the first that comes to mind. But there are other books that touch on HIV/AIDS from various perspective. They are works of fiction, nonfiction, poetry or collections that enable us to better understand the complexity of the epidemic and to put ourselves in the shoes of those living with the virus.

Over the years I've read and reviewed books, and also interviewed quite a few authors creating in this realm. Although some of the books were published a few years ago, their message remains timeless. Here are a few of my favorites, most of them originally published in AIDS-related publications such as A&U--America's AIDS Magazine.

As always, thanks for reading,
Alina Oswald
Writer/Photographer/Author
Journeys Through Darkness: A Biography of AIDS


Above the Thunder
By Renee Manfredi
Reviewed by Alina Oswald
Originally published in A&U Magazine

Reincarnation, the Afterlife, loss and the power of love and hope... they are all topics that traverse Renee Manfredi's debut novel, Above the Thunder.  The author interweaves the apparently settled lives of Anna Brinkman-a 50ish Bostonian widow and medical technologist in charge of an AIDS support group-Jack, a hostile HIV-positive patient in Anna's support group who's cheating on his longtime partner, Stuart-and Flynn, Anna's twelve-year-old granddaughter, whose love mends together all their lives in the most unexpected ways.  In the process, Anna, Jack and Stuart become her new family while, in the same time, she becomes their reason to hope, love, and live again.  

The experience of the hospital AIDS support group offers Anna, Jack and Stuart the necessary tools to deal with the crises in their own lives.  Each of the characters in the book experiences loss-be it loss of life, health, or love.  But despite the grief, each character eventually learns to cope with the unsettled present and to hope in the future-be that physical (future generations), or spiritual (the Afterlife).  Through this entire experience, Flynn is the one who mends hearts and lives, and brings her loved ones together, helping them enrich their physical, as much as spiritual existence.  As a result, Anna learns to appreciate the safety of her new, unusual family; Jack finally understands the meaning of true love and starts to enjoy the simple things in life, while Stuart gathers the strength to give trust, love and Jack another try.    

Above the Thunder is a thought-provoking story.  Its characters, as unforgettable as the story itself, are also as real as the real-life obstacles they have to surpass.  Above the Thunder enlightens, while offering us a chance to reflect on our lives... And if we do it long enough, we'll learn how to "get out of [the storms]" of our existence and go "up to where it's warm and calm.  High up, above the thunder."

Thursday, August 12, 2010

Time: An Interview with Ntare Mwine on His Play, Biro, and More

Time: An Interview with Ntare Mwine on His Play, Biro, and More


“'Time can change stuff, don’t just count on the present,' says Ntare Mwine as the main character in his one-man show, Biro." That's how my article Beware of Time started, as the cover story of A&U's June 2004. The story of Biro, told by playwright, actor and photographer Ntare Mwine, brought me a step closer to understanding the pandemic as it happened outside the U.S., on the African continent. Biro's story gave AIDS a new dimension, bringing an international perspective to the AIDS pandemic.


Also, I'd like to add a short note: recently, I have interviewed Mwine again for A&U: America's AIDS Magazine, and talked about his new play, A Missionary Position, and his special role as an activist in the fight for equal LGBT rights in Uganda.


Here is the cover story I wrote, years ago, about Ntare Guma Mbaho Mwine and his play, Biro:

Beware of Time: An Interview with Actor, Photographer and Playwright Ntare Guma Mbaho Mwine, about the AIDS Play, Biro, which He Produced and Performed on the New York Stage




"Time can change stuff, don't just count on the present," says Ntare Mwine as the main character in his one-man show, Biro. The play, directed by Peter Dubois and written and produced by Mwine, is "a survival story. Within that is the sentiment of 'beware of time,'" Mwine explains as we sit at one of the round tables in the spacious lobby of New York City's Public Theater where the play is enjoying a New York City run. The story is drawn from real life, as is its character, Biro-short for "Mwerindebiro," which means, "beware of time because it has the answers." In terms of the play, it means: Have hope even if now you may be in a bad situation because in time things will get better.
As we talk, I recall Ntare's exceptional performance-he conveys Biro's courageous story with great majesty, identifying as much with Biro as with all the other people mentioned in his character's travels.

The story begins in a Texas immigration prison, from where Biro tells his story: Alone in his cell, dressed in a bright orange uniform, he makes a plea to the audience for help. He takes them on his journey from an early-eighties Uganda to the present-day United States. We first meet Biro as a young boy caught up in the Ugandan insurgency of 1979. As he helps liberate his country, he finds himself facing his own personal war against AIDS. Biro tells of his travels across Uganda, Cuba, and America, in search of treatment and freedom.




Ntare Mwine next to the Biro poster in New York City. Copyright 2004 by Alina Oswald.
Ntare Mwine next to the Biro poster in New York City. Copyright 2004 by Alina Oswald.
The show paints a realistic image of our First World society and its glamour, shadowed though it is by AIDS and immigration issues involving 9/11 events and related INS actions. Those living with HIV/AIDS, of course, cannot immigrate to the U.S. by federal law. The audience has a unique opportunity to see the American dream so many of us take for granted from a fresh perspective, through the eyes of an illegal immigrant and in the context of the contemporary AIDS crisis.

During the ninety-minute performance, Ntare uses slideshows of photographs to keep him company on the stage. The photos help make the audience more aware of Biro's world: an AIDS- and war-torn Uganda; Cuba, where "everything is Russian, except for [the] heat"; and the United States, "the land of honey and milk," as Biro describes these places. Sound effects emphasize the mood of each set of photos, which varies from serious to meditative to light and humorous. "Photos serve as memory, defining time and space," Ntare explains. A photo exhibit set up behind the lobby of the theater complements the show, and a documentary about Mwine's travels through Uganda, Cuba, and the U.S. as he researched and worked on his play is set to be shown at a later date.

The show ends full-circle with Biro's plea for help, and engages the audience to take an active role in his story even after the performance through an interactive Q&A session with the writer/actor.
"You can be passive or active [when responding to HIV/AIDS]," Ntare explains, talking with enthusiasm about his character. Biro chooses to be active in all aspects of his life, he tells me. He refuses to allow the HIV-positive diagnosis to alter his life. Sometimes he engages in unsafe sex "even after '88 when people started dying," as the character confesses. But Biro has a positive attitude and a strong will to win his battle with AIDS. He is determined not to let "the lion"-how one of his Ugandan friends calls the disease-eat him. Biro would do anything to survive, and so he travels all the way to the States and infiltrates, legally and illegally, the system in order to get treated.

"Biro is a story about coming out and the circumstances in which somebody comes out about an HIV/AIDS status," Mwine says. He sees the show as an educational tool for people living with HIV/AIDS and also a tool for thinking about democracy and immigration, issues made accessible through their incorporation into one person's story.

Talking with Ntare feels more like chatting with an old friend. There's no sign of any Hollywood glamour. He is soft-spoken and friendly, and seems comfortable in black silky pants and a blousy shirt with a bright, golden pattern. He wears tennis shoes. 

A first-generation Ugandan-American, Ntare Guma Mbaho Mwine is a thirty-six-year-old actor, photographer, and writer who "lives in L.A. and writes in New York City." He has an MFA in Acting from New York University and completed his studies at The Moscow Arts Theater in Russia and The Royal National Theater in London. As an actor, he has appeared in TV shows such as E.R., Law & Order, and C.S.I. in guest-starring roles. Among other awards for his theatrical work, he received an NAACP Image Award nomination for Best Actor for his work in the national tour of Six Degrees of Separation. His photographic works have been exhibited at the United Nations and The Fowler Museum of Cultural History, to name only a few.

Biro is the artist's first play and the first project that has incorporated all of his skills as an actor, photographer, and writer. Though Ntare's fusion of himself and the character is so profound that audiences sometimes confuse the two, he is not Biro. Ntare accomplished this illusion through lots of hard work. Biro's story started in February, 2002, when Ntare went to visit Biro. As they talked, the artist began to "piece everything together." In order to identify with his character, Ntare took notes during the interview. "He was really my source," the artist explains. But he also visited the places that Biro had been so that he could do more research. Ntare learned a lot from talking with HIV-positive Ugandans, whose belief that they were going to win the battle with AIDS has been like a religion for them.

Seventy percent of the 42 million people in the world living with HIV or AIDS live in sub-Saharan Africa. In the eighties, Uganda was one of the countries from this region hit hardest by the pandemic. Nowadays, Uganda has transformed itself from a country with the largest number of HIV-positive people to the first success story in the area. AIDS education programs and awareness messages broadcast on the radio and in schools and churches started to make a difference and helped get rid of the fear of AIDS and the isolation of those living with the disease. In the last decade, while rates of HIV transmission have soared in other African countries, Uganda's HIV/AIDS level has fallen from fourteen to eight percent. Although there's still work to be done, Uganda is an example of what a country with limited resources can accomplish in the fight against the pandemic. Faced with huge obstacles like accessing treatment and quality of life issues, Ugandans prepared for them "piece by piece," as Ntare expressed it.

And Ntare followed their one-step-at-a-time example when preparing for the role. But he also had to adjust his physical appearance for the stage. How? Ntare shows me his driver's license picture...same person, though the thirty-five fewer pounds difference is clearly visible. He went on what he calls a "Biro diet," consisting only of Indian food. He also gave up desserts, which was hard as he confesses that he has "a big sweet tooth." He lost the weight in four months and now the "Biro diet" is an integral part of his life.

When first starting out, "I produced [the show] with two projectors," Ntare says, smiling at the memory. "It was my biggest challenge." But it also gave him the courage to go on. He has a strong supporter in his wonderful Cuban wife, Ena, whom I had the pleasure to meet.

Biro world-premiered at the National Theater in Uganda, in January, 2003. The script impressed a British producer before he even saw a performance. The result? Biro premiered in London in the fall of that same year. A few months later, the show found its way across the Atlantic and premiered in the U.S. at the Public Theater in New York City in April of this year.

Mwine's dream is to tour the entire African continent and, also, the States with the play. He talks about bringing the play to Canada, where the real Biro is living now, and inviting him on stage.
As I listen to Ntare I become more curious about the real Biro, the anonymous person behind the character.

"Oh, it's okay now," Ntare answers the question I hesitate to ask. "[Biro] is my uncle." The artist has known him since childhood. Biro is family and Ntare takes that very much to heart. He bailed his uncle out of jail and helped him settle, legally, in Canada, where Biro now lives and receives free HIV/AIDS medication. Also, not having to fear his illegal immigrant status anymore, Biro is ready to come out about his HIV-positive status. I wonder about his health but Ntare waves my worries away with his hand, assuring me that his uncle is all right now.

"Sometimes, when you struggle, you don't see how people look at you," Ntare says. His uncle saw it firsthand during the play's presentation at the Annual Uganda-North American Convention, in Las Vegas, in September, 2002.

Ntare's face beams with enthusiasm as he talks about producing the play, an experience with a profound impact on the artist's life.

What was the response to the play in Uganda? Ntare tells me Ugandan audiences were "very receptive to the piece from the very beginning." He says: "There was a time when AIDS overwhelmed everything." During trying times people need a hero's story, he says, because it "gives them hope." And Ntare gave them a hero-he gave them Biro. From a Ugandan perspective, the story is unique because, although a soldier's story, it's not told from a military perspective but from a personal one, symbolizing the people of Uganda. Biro is their reflection and that's why Ugandans connect so strongly with the character, says Ntare.

Ntare decided to produce the play as a one-man show because he believes it's "the most challenging way to tell the story," and also because it is a Ugandan way of telling the story. "There is a moving feeling about the play," Mwine explains. "It's not just drama, it's real life. It's so many people's stories."

Because Biro incorporates actual testimonials and old and new photos, some Ugandan audience members have recognized their own relatives lost to war or to AIDS and were grateful that their loved ones continue to live on through the play, he says. Ntare also shares impressive stories about "Slim"-another word for AIDS used in Africa because of the body wasting caused by the disease. He recalls how AIDS stigma affects families. One story stands out: When an HIV-positive mother of four found out that three of her children were also positive, she refused to let doctors identify who they were, fearing that she, or other members of her family, would treat them differently.

"Ugandans see theater as a tool for development," Mwine explains. Artists create work, which, in turn, creates a change in a community. He hopes that his play will teach people how to cope with the stigma of having AIDS or being HIV-positive.

While overseas, Ntare joined other Ugandan artists in their AIDS advocacy work. He paired up with members of AIDS organizations and used his play as a dialogue-opening tool, something easy to facilitate because all Ugandan organizations have theater groups where people come and tell-and dramatize-their own stories. 

The artist took his play to schools around the country and involved students in exchanging their opinions about the story with one another. Students worked with masks, an African symbol but never used in Uganda until then, and paintings. In each school, students made their own masks using materials found in their local villages-inner tubes, straws, bark, cloth. Students chose different masks to represent different topics: HIV/AIDS, opportunistic infections, to name a few. One of the students in the workshop picked a mask and wore it in front of the class and the others had to ask the mask questions. 

Ntare's voice vibrates with excitement-"Let me show you..."-and he turns on his laptop. A few minutes later, we browse through several photos taken during his workshops in Ugandan schools. 

The masks are pure ingenuity! With vivid colors and fluffy brows and beards made from straw, some masks have a serious expression. Others have a smile as long as the inner tube used in place of the mouth. The paintings are just as impressive. 

But that's not all. Some photos show a masked student standing by a tall chart displaying mask-appropriate syndromes. Others show a highly interactive session during which AIDS activists and students share their knowledge. 

This constitutes what Ntare calls the "loose structure of a play that could be performed in all schools." He is optimistic about the success of this kind of interactive program and believes something similar would also work in the U.S.

The nostalgic smile washes away and Ntare's face becomes serious as he talks about the AIDS epidemic in the States. "Most affected," he says, "are the youth and minorities." In the States, AIDS is still a problem, especially if patients don't have money for medications. Ntare strongly believes that people can fight AIDS and its still-existing stigma through dialogue. And perseverance. After all, Ntare says, "perseverance is what fighting AIDS is all about."



As always, thanks for stopping by!

Alina Oswald
Author of Journeys Through Darkness A Biography of AIDS
featuring images by award winning photographer Kurt Weston


Hope



Hope

"There is a very fine line between triumph and disaster. That line is hope." Joel Rothschild, author of Signals: A Story of Life After Life, and Hope: A Story of Triumph



I had the honor to meet bestselling author Joel Rothschild in 2003, when I interviewed him for A&U-America's AIDS Magazine. The experience has changed my life for the better: it helped me realize its complex, multiple layers, and also it helped me find my purpose in life. The article I wrote on Joel Rothschild and his book, Hope--A Story of Triumph, is called "Scratching the Surface of the Divine" and appeared in October 2003 issue of A&U.


Square in a triangle in a circle in another triangle in a rectangle, in the colors of the rainbow.
The Hope Principle, Bauhaus rendering by Alina Oswald. All Rights Reserved. The Hope (or rainbow) Principle is my first interpretation of Bauhaus photography. The image contains some of the colors of the rainbow (the natural and man-made rainbow, including the color black, for remembering AIDS). Rainbow symbolizes Hope... thus the title of this image.



I posted my interview with Joel Rothschild, below:

Scratching the Surface of the Divine: An Interview with Joel Rothschild About Long-Term Survival, Hope, and Letting Go of Self-Sabotage

Joel Rothschild is one of the longest AIDS survivors, who's also an activist and best-selling writer. In 2001, he received the Ribbon of Hope Award for philanthropic work related to AIDS. In 2000, his first book, Signals, reached the number one place on Amazon.com.

Diagnosed with full-blown AIDS on April 22, 1986, a time when little was known about this fatal disease, Joel Rothschild was faced with two choices: to close his eyes, let go and die, or to fight AIDS one day at a time and survive. He chose to live and, almost two decades later, he survived his doctor's prognosis, his friends and peers, and learned to live a positive life.

Hope, his second book, is his story of triumph over the devastating, terminal disease. It is Joel's personal lesson on positive living and cherishing life as a gift, a lesson he chooses to share with his readers. Hope is a powerful book, an inspiring and, most importantly, real story that covers Joel's struggle with the disease and his continuous fight to survive AIDS through belief and acceptance, gratitude, and forgiveness. Hope is an inspirational story, a model of positive living for everybody facing challenges in life, a read I'll remember for the rest of my life.

Still, I have to know where he found those "droplets of hope" to move on, the strength to change his life for the best and survive.

"I've been asked this question by doctors more than a hundred times," Joel explains. "On the 22nd of April, 1986, I had ten T cells, was given a life expectancy of six months. By then, life expectancy was less than a year." Joel's voice is warm and welcoming. "You ask me how I survived...." Wearing jeans and shirt, he relaxes into a comfortable armchair. "For many years I didn't know what the answer was. I survived my lover, my friends, and peers. When I read Victor Frankl's Man's Search for Meaning I recognized an internal optimism. I never see the glass half-empty, I always see it half-full."

I sit face to face with a person living with AIDS, who's been given the so-called death sentence some seventeen years ago. Yet, there is no sign of the disease. His passion for living is reflected in his warm eyes. The "internal optimism" he describes so clearly in his book vibrates into his voice.

"I learned very early on with AIDS to live in the moment." His face relaxes into a smile. "The magic is in two things...." As he explains, Joel comforts Billy, his terrier, in his arms.

First is the optimism he talks about in Hope, the living in the moment, learning forgiveness, and gratitude. The second is a balance between seeing the "ray of sunshine" at all times, and the medications.

"I've always taken the medications," Joel says, "I'm on Fuzeon now and a firm believer in medical care."

The AIDS diagnosis marked the beginning of Joel's spiritual transformation. Recognizing "internal optimism" he reached an elevated spiritual level as he just started to "scratch the surface of the Divine," to connect to his "higher self" and to God.

The way Joel Rothschild survived AIDS is a valuable model of living a positive, peaceful life while suffering from a terminal disease. His example extends to each one of us, sick or healthy. He learned to let go of the self-sabotage while focusing on the positive. From very painful opportunistic infections, Joel realized the value of living in the moment and remaining at peace. He discovered that physical pain doesn't have to translate into emotional suffering?that all things in life have a meaning, a purpose, which doesn't always have to "feel" right.

"I have survived several deadly opportunistic infections," Joel explains, "internal Kaposi's sarcoma, meningitis."

Both Billy and Gerttie, his other enthusiastic terrier, now rest peacefully in their master's arms. A sense of serenity envelops the bright living room, filled by the round intonations of Joel's voice.

"I think you can't underestimate the value of living in the moment and letting go of the self-sabotage," he says. "Those things are as important as any medication. You will not survive unless you believe you'll survive."

Joel's words remind me about Dr. Peter Anton's forward to Hope. He talks about "psychoneuroimmunology," a new area of fighting AIDS, a new field investigating how attitudes, beliefs, and mindsets influence the body and health outcomes. I wonder if it can also be used to fight other fatal illnesses.

Joel absolutely agrees. "The way that I survived AIDS is advantageous to any terminal illness," he says, "and it's a better way to live your life, even if you are not sick. If you can't eliminate the stress and find peace, you can't survive."

During his seventeen years of surviving with AIDS, Joel tried different medications and volunteered for several experimental drugs. He survived them all. Since 1986, many advances have taken place in medicine because of HIV/AIDS research. What about a vaccine, a cure?

Joel believes in the possibility of a vaccine, "one day, for HIV-negative people." There's hope in his eyes. "It's well worth researching."

Throughout the interview and in his book, Joel talks about the importance of living in the moment. Yet, he has plans for the future. He continues to help others, work as an AIDS activist, and to write. Also, currently, he is working on a third book. How does he do it? How does he balance staying in the moment, with his dreams and goals?

"It's a good question." Joel offers me something to drink. He needs to take his medication. "You can stay in the moment and still have goals," he explains.

We agree that it is good to have goals, hope, and aspirations in life. But aspirations are different from expectations. If we don't meet all of our expectations in life, we become fearful and guilty, and depressed. Joel believes that the more we can stay in the present, the stronger we become. "Anxiety, fear, depression, guilt are deadly with AIDS, they are the direct result of not living in the moment," he explains, "more deadly than any disease."

There's never been a one hundred percent fatal disease. AIDS is. Joel is its one percent anomaly, its survivor. But every terminal disease has its own one percent survivor. Survivors. He's met some of them. Their secret to survival, like his, is optimism, hope, and acceptance.

By reaching "true optimism" and healing through forgiveness, Joel "scratched the surface of the Divine" and learned how to live a positive life. Can we do the same? How?

Many people believe that the only way to learn is to beat their heads against the wall. Some, though, learn from others? experiences. Joel favors learning by example.

"I've tried to capture seventeen years of death, disease, suffering, and loss in a short book. It's my dream that people would read it and learn from it without suffering." I can hear the passion in his voice and see the optimism in his eyes. "I certainly believe that people who've just become positive will read my book." He suggests other readings, by Victor Frankl or someone else who has experienced death and loss. Or go to a cancer ward. "You'll learn to value what you have," he concludes.

HIV/AIDS is a taboo issue most people prefer to ignore, thinking it can never happen to them. It can happen to anybody. People, in general, need to become more aware of this pandemic.

"Each time we share our truth, we change the world." Joel's face looks determined. "I have been open and honest about my HIV status from the first day. I think it is very important and healthy."

Hope you'll enjoy the read.
Thanks!

Alina Oswald
Author of Journeys Through Darkness: A Biography of AIDS