Tuesday, November 1, 2011

30 Years of AIDS: The AIDS Alphabet - F is for Foscarnet


In the AIDS alphabet, F is for Fuzeon and also Foscarnet, an antiviral medication that prevents CMV (cytomegalovirus) multiplication. Foscarnet can be administered intravenously in a health care facility or at home.

Foscarnet, Fuzeon and other medications give hope and keep patients not one, but several steps ahead of the disease, yet it takes a warrior to deal with all the complex aspects (medical and otherwise) of living with HIV/AIDS. Before the advent of HAART (Highly Active Anti-Retroviral Therapies) in the mid-nineties, CMV was the number one cause of visual loss in AIDS patients. Total or partial visual loss takes another meaning for those for those who make their living painting with light (photographing). They have to become warriors at war with their AIDS and related disabilities and start their Journeys Through Darkness to find their way and survive a world of darkness. Here's an example from Kurt Weston's (an AIDS warrior and award-winning, visually-impaired visual artist) Journey Through Darkness :

Confusion comes easy. So does self-destruction and self-doubt, especially in a situation like Kurt’s was. It is often easy to get entangled in the debilitating game of questioning oneself and of judging one’s actions. It is often difficult to stay clear of the multitude of “what ifs,” “only ifs” and second-guesses threatening to redefine one’s past. There were times when Kurt’s own AIDS, and later on his vision loss, had threatened to push him further into this labyrinth of confusion, at times almost to a point of no return. Therefore, his secret for surviving had always been to never allow failures from the past to govern his life, to alter his future and keep him from making the best of his situation. He wasn’t going to change that kind of guidance even in the face of his permanent vision loss. Therefore, the photographer pleaded with his doctors until he got the necessary paperwork to enroll in classes offered by the Lower Vision Department at the Braille Institute.
It was vital for him to start learning how to survive and how to “see” again in his new world, in order to move forward with his life and his dreams. Kurt had to start by learning how to use a cane, work with adaptive technology and read Braille. And he didn’t have to do it all alone, because he had the support of his new partner.
    Kurt had met Va Hong after moving to Orange County, while attending a Positive Friends meeting at one of the local AIDS support organizations. Va was a “wonderful Vietnamese man” whom Kurt found “very cute.” The two started talking and found out they had quite a few common interests. It didn’t take them long to start dating and afterwards to begin a serious relationship.
In time, as Kurt started losing his sight, Va became not only his partner but also his guide. Va ended up taking Kurt to his doctor’s appointments, which were spread all over the city, and everywhere else the photographer needed to go. Va also introduced Kurt to the Asian Pacific Crossroads group, a local organization serving Asian Americans living with HIV/AIDS. There, Kurt got to meet many people who knew Va and form meaningful relationships. Va was the one to tell Kurt about the Braille Institute and encourage him to attend classes. 
While the Braille Institute was providing useful information through hands on activities and courses, it also required students to live on the campus. And while Kurt didn’t mind doing that, he really didn’t enjoy his staying there either. To him, the Braille Institute looked more like a senior center. Most of the patients were in their seventies and eighties and most of them had lost their sight to age, to macular degeneration. To Kurt it seemed that they were only there to kill time, while he needed a fast and immediate immersion in studies that would allow him to continue his life despite his visual disability.
Besides, Kurt had different kinds of problems. He was the only one to have lost his sight to CMV. He was the only one who had AIDS. Yet, upon his acceptance, the Braille Institute officials instructed him not to mention his disease or the real cause of his blindness to anybody. “We just think it would be better if you don’t tell anybody about your situation, because, you know, people don’t understand,” they told him.
The advice reminded him of his doctor’s words years earlier, in Chicago, when he was working for Pivot Point and was recently diagnosed with AIDS. The officials at the Braille Institute listed Kurt’s reason for being there as cystoid macular edema, which is a swelling of the macula, and which Kurt had as a result of the side effects to his medication that had damaged his macula, thus his ability to see things in focus with his right eye.
During his short stay at the Braille Institute, Kurt couldn’t really make any friends, so he tried to stay focused on his studies and relearn, as fast as he could, how to get around in his new world. He attended all the classes that were required of him, studied hard and learned quickly.
One of these classes was a beginners typing course. The instructor suggested that it would be a good course for Kurt who, at the time, was not computer savvy. So the instructor set Kurt at the keyboard and started him on his typing. Moments later, the photographer found himself struggling to stay focused on what he needed to do. He tried his best to go through the course smoothly, but found it terribly boring. Yet, he kept typing the same letter over and over again before moving to the next letter and repeating the process. No matter how much he would try, Kurt was slowly getting bored out of his mind. So he started eavesdropping on conversations going on around him, which seemed to be much more interesting than typing letters ad nauseam.
That’s how he decided that one particular conversation was, indeed, worth his undivided attention. Kurt overheard one of the seniors in the class talking to the instructor about his Department of Rehabilitation counselor, how wonderful she was and what wonderful things he had learnt there. From what he heard, Kurt realized that what the rehab program had to offer was just the perfect kind of low vision classes he needed, and he memorized the counselor’s name and phone number, and made a quick mental note to contact her as soon as he could.
Later that day, right after he was done with his classes, Kurt made an appointment with the counselor. Not long afterwards she stopped by his place and explained everything to him about the program and all the benefits it had to offer. She also told Kurt about the Foundation for Junior Blind, describing it as offering similar courses as the Braille Institute, but at a more intensive pace.
To attend courses at the Foundation for Junior Blind, Kurt would also have to live on campus, in Los Angeles, during the week and then return home to Orange County for the weekend. And knowing that he eventually had to learn how to negotiate and live his life as a visually impaired person, Kurt accepted the challenge and started the long application process and the endless waiting period for an opening.
During the few months Kurt had to wait to actually start his studies at the Foundation for Junior the Blind, his partner, Va, started to get really sick. Va was hospitalized with AIDS-related lymphoma and, because the pain was becoming more than he could possibly handle, doctors had to put him on morphine. It took Va a couple of weeks to die. He passed away on January 8th, 1998. And throughout the entire ordeal, Kurt has remained by his bedside.
Literally two days after Va’s death, the photographer received a phone call from the Department of Rehabilitation. They had good news. There was indeed an opening available at the Foundation for Junior Blind and they were waiting for him in Los Angeles to start his courses immediately.
But no matter how promising the opportunity, at the time Kurt found it impossible to make himself attend school. He wasn’t ready just yet, not while he was still mourning the loss of his partner. Va’s death had been slow and horrible, and Kurt had had to witness his lover’s suffering and to live through all the pain and loss that came with Va’s passing. The experience had left Kurt numb and overwhelmed by a sorrow he didn’t know how to escape. So, while risking what could have very possibly been his only chance to relearn how to “see” again and get acquainted in his new world, Kurt politely declined the offer and was ready to give up his slot.
Fortunately, the Institute for Junior Blind rep on the phone with Kurt wasn’t as eager to let him give up. While there was no telling when the next opening was available, she recognized that Kurt’s situation was indeed special and offered to hold the slot for him for another two weeks, while making him promise he would think about it and call her back.
Reserving the spot was a difficult task in itself, especially when so many people were waiting in line to enroll in the classes and Kurt was very much aware of the favor she was doing him. So he did think about the journeys to come in his life. He wouldn’t have been able to learn about the Institute for Junior Blind if he hadn’t gone to the Braille Institute in the first place. And he had been able to do that because of Va’s encouraging him to move on with his life. So, two weeks later, Kurt called back the institute in Los Angeles and told them he was ready to start his studies.