Friday, January 20, 2012

The AIDS Alphabet: L is for Lymphoma...

 The AIDS Alphabet: L is for Lymphoma also, in Kurt Weston's case, for Losing the Light...

Here's an excerpt from Journeys Through Darkness--A Biography of AIDS, which describes what followed after Kurt Weston, fashion photographer, lost most of his eye-sight to CMV retinitis (AIDS related retinitis): following his partner's, Va, advice and attending classes at the Braille Institute, Va's AIDS-related lymphoma, and the beginning of Kurt's journey through the deepest blackness...

Thanks for visiting and hope you'll like the read.
Alina Oswald
Author of Journeys Through Darkness--A Biography of AIDS


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 connect to anybody or 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 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 Institute 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.
The photographer also realized that he needed to get away in order to break away from the memory of Va’s death. He needed to go to Los Angeles and learn to negotiate his life again, to find his way around and to function in his new and still unfamiliar world.  
Because Va was not there anymore, Kurt had to learn how to get around on his own.  While there was no way he could get around the town on foot, he had to renegotiate his transportation and he had to do it fast, because he couldn’t afford to miss his doctor’s appointments if he wanted to continue living and staying ahead of his disease.
The photographer found out about a local transportation company called ACCESS, which was serving disabled people. The price was reasonable and the service reliable. So Kurt arranged for ACCESS buses to pick him up from his home, drop him where he needed to go, and then take him back home. He also ended up using ACCESS to commute between home in Orange County and school in Los Angeles. 
Despite the hard work and difficult schedule, Kurt enjoyed his studies. He had great instructors and learned how to work with adaptive technology in order to make use of computers. He also learned various other helpful things that could help him get started in his new life. Learning to read Braille was one of these helpful things, but nowadays Kurt is the first to confess that he’s never been good at it because he’s never been able to really feel the Braille dots due to the AIDS-related neuropathy (numbness) in his fingertips.
While at school in L.A., Kurt also learned how to use specialized programs that allowed him to magnify the letters and words on the computer screen as much as necessary for him to read his emails and documents. Zoomtext is such a software program that has a “Document Reader” function that reads the text back to Kurt in a woman’s (or male’s) voice, depending which one he chooses.
The photographer impressed all his instructors by excelling in all his courses and graduating from Institute for Junior Blind in only half of the time usually required to complete the course. Only three months after his enrollment, Kurt Weston received the certification to prove that he was ready for the road ahead.

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