Saturday, January 28, 2012

The AIDS Alphabet: M is for Mepron, Molluscum Contagiosum Virus and Motivation

The AIDS Alphabet: M is for Mepron, Molluscum Contagiosum Virus and Motivation

While covering HIV/AIDS for years now, I got the opportunity to talk to many survivors. What has always amazed me about these AIDS warriors was their motivation, their bravery. How does one stay motivated, day in and day out, when faced with something like AIDS, or cancer or any other devastating situations, reminders of our mortality? Here's one source for Kurt Weston's motivation. Weston is an AIDS warrior and long-term survivor, who, becoming legally blind because of CMV retinitis, became an award-winning photographer. Here's an excerpt from his story I told in Journeys Through Darkness--A Biography of AIDS.

As always, thanks for visiting,
Alina Oswald
Author of Journeys Through Darkness--A Biography of AIDS

Journeys Through Darkness. Cover Design by Alina Oswald
Excerpt from Journeys Through Darkness. All Text and Visual Art are Copyright by Alina Oswald. All Rights Reserved. 
Mepron (Atovaquone): Mepron comes in tablets or oral suspension. It is used to treat mild to moderately severe PCP in patients who are allergic to Bactrim (which is the standard therapy for PCP). Side effects include skin rash and fever. Most common ones are insomnia, diarrhea, cough, headache, and nausea or vomiting, also lack of energy, and fatigue.

Molluscum contagiosum is a skin disease caused by molluscum contagiosum virus, or MCV, which can be transmitted from person to person. MCV is also autoinoculable, meaning that the infected individual can transmit (or spread) it to himself. The MCV infection is generally characterized by small bumps that appear on the face, upper body, or extremities. MCV infects mostly children and adults with impaired immune systems, the latter experiencing the viral infection manifested as tiny, pearl-like papules on their face. When the T cell count falls below two hundred, as it happens in AIDS patients, the lesions start to spread.
Kurt Weston experienced MCV and the KS lesions at the same time on his face. Molluscum contagiosum virus felt like pebbles stuck under his skin that he spread on himself every day, when shaving. So his entire face became covered with warts. He had them around his eyes, on his nose, his cheeks and down his neck. And it looked unimaginably horrible. “I would walk out and people would look at me like ‘oh my God, what’s wrong with this man?’” the photographer recalls. “It was horrifying. I looked like a circus freak and it was very devastating to me.”

In its early days, the psychological and physical burdens the epidemic brought to patients yielded to destructive, negative behaviors in some individuals. Faced with an imminent death sentence, some of those infected developed a “screw it all” attitude, and went on maxing out their credit cards and living totally irresponsible lives because they knew they were going to die soon anyway and didn’t mind leaving somebody else to clean up their mess at the end. 

Other AIDS patients did just the opposite. They became more responsible for their own lives and for the lives of those around them. 
Kurt Weston met these kinds of people when he started attending AIDS-related workshops at some of Chicago’s AIDS service organizations. Test Positive Aware was the first ASO he visited. TPA provided a helpful resource and a link to professionals who could help Kurt with his health insurance and medications, and also provide informative AIDS education. The organization also became a means of communication between the artist and others who were also infected.
At the time, the photographer was still recovering from his first bout of PCP and was very much aware that he should have been dead. And while he was still alive, he was uncertain as to how much longer he had to live… or how.
Being advised by his doctor to keep his disease a secret, there weren’t many people he could talk to, openly, about his situation. But as he started frequenting, and later participating in TPA workshops and meetings, Kurt discovered that he was not alone. He discovered that other TPA members were going through situations similar to his, struggling to survive their opportunistic infections and fight their disease. They were HIV positive or had AIDS, in the early or advanced stages of the disease and, while around them, Kurt didn’t have to hide his disease anymore. He also didn’t have to explain how he had gotten infected, or why, or to come up with some excuse for his having AIDS. 
While at Test Positive Aware, the photographer found one particular person went out of his way to try to comfort him for the simple reason that, at the time, this individual was himself going through the same process Kurt was, trying to recover from PCP, and, therefore, could truly understand what the photographer was going through. One year later this person became the executive director of Test Positive Aware. Within yet another year he died of cytomegalovirus, or CMV, in his gastrointestinal track.
It was also at the same AIDS organization that the photographer met other supportive people who had survived the tragedy of AIDS. They took the time to talk to him and to assure him that AIDS didn’t have to be a death sentence but rather it could become a manageable disease. They were the AIDS survivors, living proof that what they were saying was the truth. And while he wasn’t ready to give up on his life, Kurt became interested in finding out more about how these individuals could survive something as tragic and as deadly as AIDS. He became interested in discovering what kept them alive and what was the source of their hope, of the energy that was helping them maintain a positive perspective in life.
So, Kurt joined their group and listened to what they had to share. And their AIDS success stories touched his life in the most positive way, fueling his own desire to survive the disease. In time, the photographer got to know these early-AIDS survivors better and discovered that they were the ones willing to go the extra mile doing whatever it was necessary to fight the virus that was destroying them.
To this day, Kurt Weston considers these kindred souls his guardian angels, his first contact with the early AIDS warriors he later met in his life. They helped him take his first steps toward surviving the disease, while injecting in him a belief system that he, too, could turn his fate—his AIDS—around and transform it into something more manageable, into something that did not necessarily have to be a death sentence.
But learning how to stay alive required the photographer to take on some responsibilities of his own, including devotion and commitment to his life, and also a lot of time, money, and effort. These were the bases of living in a “surviving mode,” which meant focusing solely on living one day at a time, while slowing down his life to bare necessities in order to stay alive.
A situation as extreme as a terminal illness forces individuals to stop and take time to relearn how to stay alive. Such an extreme situation starts by depleting individuals’ existence one layer at a time until reducing their lives to basic surviving needs.
AIDS, for example, isolates and stigmatizes its victims, while taking away their social life, their connection with their families, friends, and peers. But it doesn’t stop at that. AIDS continues by peeling off layer after layer of one’s life, until there’s nothing left. While the network of familiar faces (friends and family) may vanish first, the financial layer comes next. Patients are left jobless. With their bank accounts depleted, some are forced to live on disability. AIDS also attacks the most private layer of human existence, that related to the self-images individuals reflect on themselves and on others. The disease mutilates the physical appearance of its victims to such extent that it can permanently fracture this aspect of patients’ lives. The intimate connections, the physical touches people need especially when during tough times, disappear shortly afterwards. And so do the personal and sexual lives of AIDS patients, because nobody desires them and nobody wants to be with someone whose body is deformed or who’s sick and dying.
The actual physical death happens only after a slow and painful process during which patients are forced to experience the death of several dimensions of their existence. Those who manage to survive are sometimes left with virtually no means to do so; they are forced, therefore, to come up with their own ways of staying alive. Some do that by developing their own survival skills, like learning how to live in the moment or informing themselves about AIDS and researching various ways to stay alive even if only for a while longer. After all, they have nothing to lose.
Through it all, staying alive becomes an art in itself. Learning this complex process is not easy and not everyone has the kind of strength or inspiration required to attempt it.
More than fifteen years after his AIDS diagnosis, Kurt Weston considers himself lucky to have connected with people who could help him quickly learn how to fight the disease, and who gave him the hope and strength necessary to keep focused on his surviving. The photographer believes that being around survivors at that stage in his life and his AIDS was a vital part of his winning the battle with his disease. 

All Text and Images are Copyright by Alina Oswald. All Rights Reserved.

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