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. 

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.

Tuesday, January 17, 2012

The Road Ahead--Unconventional January 2012 Updates: Journeys, Kindle, ebook, print and more

The Road Ahead--Unconventional January 2012 Updates: Journeys, Kindle, ebook, print and more 




"The Road Ahead: Sylt, Germany" by Alina Oswald.
This is one of the very informal posts to let you know what's happening in my Unconventional: Expressions of Reality existence. I've will be posting more entries on my AIDS Alphabet series soon, but I've been swamped with lots.

I have to report that:



Journeys Through Darkness, by Alina Oswald
Journeys Through Darkness: A Biography of AIDS, a book I've worked on since 2006, is now also available on Amazon Kindle, Smashwords and others. A new print edition is available. Stay tuned for more. Journeys tells the story of AIDS through the story of an AIDS warrior and long-term survivor, award-winning visual artist Kurt Weston.

Sketch People by T.J. Banks
In the upcoming months, I'll be adding more books by yours truly to my e-library, including The Awakening... and Vampire Fantasies.



January marks the beginning of a new year... and also of new projects. Among them, T.J. Banks' new book, Sketch People. I'm humbled to be a very small part of that book... more on my own Sketch People story soon.

As always, thanks for visiting. Also, many thanks to all my followers, supporters, and friends,
Alina Oswald
Author of Journeys Through Darkness
www.alina-arts.com

Friday, January 6, 2012

The AIDS Alphabet: K is for Kaposi's Sarcoma

The AIDS Alphabet: K is for Kaposi's Sarcoma


Backbone. Copyright Alina Oswald 2008.
Do you remember the movie Philadelphia, starring Tom Hanks? Do you remember the scene that brings the reality of KS to the forefront, through Hanks' character, AIDS-stricken Andrew Beckett, who is asked about the "birthmark" on his face, the "birthmark" that was, rather, a Kaposi's sarcoma lesion? Continuing the AIDS alphabet, we reach the letter K, for Kaposi's sarcoma--a skin cancer described for the first time in 1872 by Hungarian dermatologist Moritz Kaposi. Here's how Kurt Weston, an AIDS warrior, award-winning photographer and subject of Journeys Through Darkness--A Biography of AIDS, describes, only briefly, life with KS (Kaposi's sarcoma).

Kaposi’s Sarcoma: KS is a tumor of the blood vessel walls. During the early years of the epidemic, it used to be the most common cancer in people living with AIDS. KS usually appears as pink, red or purple lesions on the skin, in the mouth or internal organs. KS can be treated with radiation and/or chemotherapy. Usually, lesions disappear once the immune system starts to recover (T cell count increases over a certain number).       

Here's one excerpt from Journeys Through Darkness dealing with KS.

front, spine and back cover jpeg of Journeys Through Darkness a biography of AIDS by Alina Oswald with photographs by Kurt Weston
Journeys Through Darkness: A Biography of AIDS
The appearance of KS lesions on Kurt’s body was a sign of the advanced stage of his disease. Yet, Kurt was lucky. His lesions didn’t hurt. They were discolored and very unattractive, but because they were dry, doctors could treat them with radiation.
    Other patients were not that lucky. Their lesions were fluid-y inside and would burst out and hurt. For these patients, therapies like chemotherapy or radiation were not always possible and they had to walk around and go out in public wearing their lesions on their faces and their bodies, carrying with them the grim—purple, in the case of KS—flag of AIDS, exposing themselves to being pointed at and even further stigmatized and discriminated against. Therefore, many people with KS lesions refused to go out anymore and became prisoners in their own homes with their disease.
    In 1993, when Kurt and other people attending SWAN meetings were battling KS on and inside their bodies, Philadelphia had just been released and become quite a hit. So those who’d gone to see the movie thought they learned a lot about the differences between a birthmark and a Kaposi’s sarcoma lesion. To this day, the photographer cannot watch the movie past one of its early scenes, when AIDS-stricken Andrew Beckett (played by Tom Hanks) covers his KS lesion on his forehead when his boss asks him if that was a birthmark… So, especially after the release of Philadelphia, people with KS lesions on their faces could not show themselves in public without being identified as having AIDS.
    Weston was one of these people that the epidemic was threatening to confine to their homes and isolate from the rest of the society. And Weston would not accept that. There had to be a solution to this situation and the photographer felt compelled to do something about it, to regain his—and others’—freedom to go out and about their businesses and be able to show their faces in public without fear of stigma or judgment.
    While at Pivot Point, Weston had worked with many make-up artists, so he called up some of them and asked them if they could help. They showed up at his SWAN workshops and offered make-up sessions, showing participants what kind of make-up to use that worked best with their faces, how to use the make-up to look most natural and how to best cover their KS lesions.
    Soon, the word went out and traveled across Test Positive Aware and other similar local organizations, and more people started to show up at Kurt’s workshops. So many of them, in fact, that they needed to bring chairs from all over the building to accommodate everybody. After a while, Kurt even had to ask for a larger room that would fill, each session, with seventy or eighty individuals.

Tuesday, January 3, 2012

Interview with Arthur Wooten, Author of Wise Bear William: A New Beginning, a book to help us keep the holiday magic alive throughout the year



 
Wise Bear William: A New Beginning
Wise Bear William: A New Beginning, a book by Arthur Wooten with illustrations by Bud Santora to help us keep the magic of holidays alive throughout the year

An Interview with NYC Author Arthur Wooten

I met Arthur Wooten at the 2007 BEA [Book Expo of America] in New York City. He offered me a copy of his then-new book On Picking Fruit and signed it “Pick wisely.” Since then I’ve become a fan and read (almost) all of his books, including Fruit Cocktail (the sequel to On Picking Fruit) and Birthday Pie. I find the read appealing, quirky, funny, and rich.

Arthur Wooten, Author
What makes Wooten’s work even more attractive is that it’s fiction that rings true as a slice of life, of the reality surrounding us. And that’s still true with Wooten’s latest work, Wise Bear William: A New Beginning.

The children’s book combines Arthur Wooten’s writing with Bud Santora’s illustrations to recreate the magic—the one reminding us of our childhood, of a time when we believed that magic could truly happen. I first read A New Beginning right before this past holiday season (2011). Therefore, with Christmas on my mind, the read and illustrations recreated the magical setting of “’Twas the Night Before Christmas.” Yet, looking deeper, the story of Wise Bear William: A New Beginning is not a Christmas story, although it can very well be one, and it’s not only a children’s story. The truth is that Wise Bear William: A New Beginning is a timeless story for children of all ages.

The book brought back childhood memories of my own, also a few tears and smiles. If this is only A New Beginning, readers may need lots of tissue boxes for the upcoming books. I talked to Arthur Wooten about his new book and upcoming projects. Here’s what he had to say:

Alina Oswald: How did you come up with the idea for Wise Bear William?
Arthur Wooten:
I was given a stuffed bear made out of my grandfather’s World War I army blanket, which I named Blanket Bear. I always wondered what memories were woven into this toy. Bud [Santora} and I debated whether to write a story about [the bear] or [make him] part of a larger cast. Eventually, Wise Bear William was created. Along his journey he meets Old Teddy Tartan who is actually Blanket Bear.

AO: Could you briefly share the story behind the making of the book?
AW:
Bud [Santora} and I collaborated on this project from the very beginning. We went back and forth, inspiring each other. As Bud [Santora] created illustrations for the text, the story would actually shift, evolve, and grow. Before the title went “live,” I truly meditated on every single word chosen in the story. A New Beginning is a large story written with very few words. And children hand onto every [written word, so I made sure] everything was perfect—good storytelling without preaching and never talking down to the children.

AO: Williams’ story is rich and deep, a true lesson in life, one that helps us maintain the “holiday spirit” throughout the year. Don’t you think?
AW:
Yes, it would be wonderful if we could maintain the holiday spirit throughout the year. The story doesn’t take place during the holiday season, but it certainly has that spirit and anticipation. Plus, for one character in particular, years of hard service are paid back big time. And what a present it is!

AO: Could you explain how you chose the illustration and the font?
AW:
Bud [Santora]’s work really is lush and full of depth. Every time you look at an illustration you find another little nuance. It may be a picture, a shadow, a mouse [or] a spider web. It’s truly magical.

The font... We kept trying every font we could find. We also designed the total interior and exterior of the book. For example, Bud [Santora] created the “wise owl” wallpaper print you see on the background of each page, as well as the frame for each illustration or page of text.
Bud Santora, Illustrator

AO: What came first, the words or the illustrations?
AW:
The words came first. But as the illustrations evolved, the storyline would shift. It truly was a collaboration. Often, a publisher pairs up a writer with an illustrator. And generally, the artist follows the path of the writer. But Bud and I were able to create side-by-side.

AO: How did you choose the names of the toys in the attic?
AW:
I’m not quite sure how the names of the toys evolved. [Choosing the name] for each toy was very simple, organic but also revealing.

AO: This book is A New Beginning. Any plans for future Wise Bear Williams books?
AW:
We do plan on publishing more Wise Bear William books. Actually, the first draft manuscripts are all done. Now Bud just has to catch up with me.


Author’s Note: Arthur Wooten’s next novel, Leftovers will be coming out in February, 2012 to tell “a romantic dramedy” taking place in 1955, about “a divorced and destitute suburban housewife who find self-esteem, financial security and true love selling Tupperware.”



Sunday, January 1, 2012

Kissing Under (and other alternative uses of) the Mistletoe

Under the Mistletoe. Photo by Alina Oswald
Happy New Year! 

Some of you may have kissed or been kissed under the mistletoe, but did you know that the mistletoe is famous all around the year, not only on January 1st? Some people use it as a complementary (alternative) therapy, together with more daring treatments... Here's how long-term AIDS survivor and award-winning, legally blind photographer and others in his SWAN (Surviving With AIDS Network) used it back when there was nothing else to use, other than AZT. 




As always, thanks for stopping by!

Alina Oswald
Author of Journeys Through Darkness
 

Excerpt from Chapter 4: Self-Reflections of Journeys Through Darkness, A Biography of AIDS

[...]

Journeys Through Darkness
While the conventional medicine didn’t have much to offer at the time and the only treatment available was making them extremely sick and weak, people living with the virus were desperate to try pretty much anything that could remotely improve their quality of life, and they would listen to anybody who could possibly offer them a chance to survive. AZT was a first positive step toward finding an AIDS treatment, but not all patients could manage staying on the drug.
    A lot of them felt so sick while taking the medication that they quit caring about living. If the drug, which was supposed to keep them alive, made them feel so awful, what was the point of being alive in the first place. Some would rather be dead and end the suffering altogether.
    Other patients believed in a conspiracy theory, that the Big Pharma (the large network of drug companies) was trying to make money off AIDS patients and that the chemicals in the AIDS drugs were poisonous and doing them more harm than good. So a lot of infected people refused to take the AZT or go through chemotherapy. They attempted a more natural approach to fighting their AIDS. 
    A lot of those attending SWAN workshops also became extremely interested in alternative treatments. Therefore, a lot of alternative medical practitioners showed up at SWAN meetings to inform the patients of other ways they could fight the virus.
    “There’s a lot of fakery in the world of alternative treatments,” Weston explains. “And some practitioners were preying on people with life threatening, terminal illnesses. [But] if some [medical] doctor came to you and said that you were gonna die because you had this [disease] and there was nothing available to help you, and then somebody else came and said ‘I know something that they don’t know. I’ve got this thing that could help you.’ Wouldn’t you be tempted to try it?”
    During the SWAN meetings alternative medical practitioners showed patients how to keep themselves healthy using therapeutic nutrients, Chinese herbs, and acupuncture. They also discussed very extreme therapies like Ozone therapy, auto-urine therapy or the benefits of various plant extracts and enzymes. That way, patients could get a better understanding of the various possibilities available—other than just chemicals—to treat their HIV. That way, AIDS patients could become more proactive fighting their disease.
    Alternative treatments were very expensive and patients who wanted to try them couldn’t afford to try every one of these treatments. Most of the patients were on disability and didn’t have much money to spend on experimentation, even on those who could potentially extend their lives. In addition, it would have been very time-consuming, plainly not smart and simply not possible for each individual in the SWAN group to experiment with every one of the available alternative treatments.