CVIndependent

Mon02192018

Last updateWed, 27 Sep 2017 1pm

HIV is no longer a death sentence: Today, most people with the virus—as long as they receive proper medical care—will live long and productive lives.

However, the amazing medical advances that have allowed for this have led to a new challenge: an increasingly large number of older people who are living with the virus.

The Desert AIDS Project was the first HIV/AIDS organization of its kind in the nation when it was founded by community volunteers in 1984. Today, it’s a federally qualified health center that serves anyone in need, regardless of HIV status—and a lot of DAP’s clients are older people who were diagnosed with the virus in the 1980s and 1990s.

“We’ve learned a lot since 1984,” said Jack Bunting, the public relations specialist for the Desert AIDS Project. “… We all know with the advances in pharmacology that people aren’t dying of this anymore. Now, we have an aging HIV population—people who are in their 20s all the way through their 80s. It’s no longer a death sentence. What we’re trying to do is invigorate people’s lives so they can live with it and still live long, healthy and productive lives.”

Bunting said DAP’s clients today have needs that would have been unthinkable during the AIDS crisis.

“Job training and vocational training—there’s a whole gamut of services that people need to live with this disease,” Bunting said. “We’re not doing triage for dying people anymore; these people are going to be here for a long time. They’re able to be of good use, good value and live productive lives. … There’s a hierarchy of needs. You can give them all the HIV medication you want, but if they don’t have anywhere to live, they’re depressed and isolated. If they don’t have food, and if they’re lonely, they aren’t going to take their medication.”

The fact that more than half of all Americans infected with HIV today are 50 or older led a group of local medical experts, patients and activists to start the HIV + Aging Research Project-Palm Springs, or HARP-PS. The nonprofit will be holding a day-long “Reunion Project 2.0” conference on Saturday, March 31. Visit www.harp-ps.org for more information.

Due to an increasing demand for services, the Desert AIDS Project recently announced a huge expansion project. The agency, located in Palm Springs at Sunrise Way and Vista Chino, has acquired the building south of the existing campus, and is expanding beyond those existing buildings as well. Once the $20 million expansion is completed in 2020, DAP will be serving an estimated 8,000 patients in its medical clinics—up from 3,900 last year.

A lot of the new DAP space will be dedicated to services that were not needed in the days when HIV was basically a death sentence. DAP’s dental clinics will serve 1,700 patients in 2020, up from 814 in 2017. DAP-owned housing—for which there’s currently a years-long waiting list—will almost double, from 80 apartments now to 141 in 2020.

Wade Cook is a client at and volunteer with the Desert AIDS Project. Now 60, Cook was diagnosed as being positive in 1991 while living in Texas, and he said the Desert AIDS Project saved his life.

“I’ve received treatment in a few other areas of the country, and the Desert AIDS Project is really unique and pretty special,” Cook said. “I’m at the Desert AIDS Project every day, given I volunteer there, and I go to all the groups and receive my medical care, and my mental health (care). As far as medical care goes, I’ve never received such thorough care, and my health has improved so much that I’m considering going back to work again.”

Cook said living with HIV takes a toll on one’s body.

“It speeds up the aging process in a lot of ways,” Cook said. “You develop diabetes (a side effect of some medications), heart conditions, high cholesterol and other different things that might develop with older age—but you develop them a lot sooner with HIV. For me, I developed severe arthritis, which is why I went on disability, because I was in a wheelchair for four years. The fact that my body is working so hard to fight this infection—it can only do so much. I’ve had a lot of issues with my liver just because of the medications that I take.

“HIV and aging is a new field for a lot of people to begin to look at—and to evaluate people like me.”

Long-term survivors have to deal with more than the virus and the side effects of the medication; Cook said people with HIV are often overcome with anguish.

“There’s isolation, which is a huge issue for people who are long-time survivors,” he said. “Depression is another issue that people struggle with. There are a lot of us who have lived with this for a very long time who have developed PTSD symptoms, because we’ve gone through a series of very traumatic events in the process—including the loss of lots of people early on in the epidemic. As time has gone by, lots of us have gone through severe health issues.”

This is one reason behavioral health care is also a big part of DAP’s expansion: In 2020, an estimated 1,200 patients will receive such care, up from 583 last year.

Cook talked about being first diagnosed with the virus back in 1991.

“I was a school teacher in rural Texas, and I was terrified that the parents of my students would find out—that the school district would find out, and I didn’t know what the response would be,” he said. “I didn’t go to the doctor using my insurance, because I didn’t want anything to show up anywhere.”

In Las Vegas, Cook said, he received care at a medical center that stigmatized people with HIV.

“You had to go through the back alley to get to the ward,” he said. “It had a very powerful effect on me when I first walked into that ward, because I had to walk through basically where the janitors kept all their buckets—that was what was set aside for people with HIV.

“I’ve referred to the experiences of living with HIV as living through a war.”

Despite the great care he’s received at DAP, Cook said he still deals with the mental and physical toll that HIV has taken.

“Those feelings don’t go away. I’ve lost a lot of people who I’ve known through the years, especially earlier on, when there was so little help,” he said. “One of the things the Desert AIDS Project does an incredible job with is mental health and programs for people to interact and communicate with each other. I’m at a point in my life where I’m considering going into a Ph.D. program. For years, I’d lived with this idea that (HIV) was the end of my life, and I was done.”

Another challenge aging LGBT individuals are facing, regardless of HIV status, is a lack of family members to help with care. Stonewall Gardens, an LGBT retirement community in Palm Springs, often deals with the fact that many residents have no family members.

“We deal far less with family members and more with friends and the individual themselves. Often times, most of our residents don’t have family members, or they’re estranged from them,” said Lauren Kabakoff, the marketing and sales director of Stonewall Gardens. “It’s not unusual that someone will come by themselves, or maybe their niece or nephew will come to look for them. That’s a challenge we have, because it’s so easy for kids to put Mom and Dad somewhere, and deal with selling the house and selling the car. But for us, our residents need to deal with all of this themselves. They need to change their address themselves, sell their home or deal with renting their home, and wrap up their affairs before they move in. There’s no family to say, ‘We’ll put Mom and Dad in there and deal with it later.’ It’s a bit of a different dynamic.”

Kabakoff said the Stonewall Gardens staff often winds up doing more than staff members at a traditional assisted-living facility.

“By default, we do become family for so many of our residents. We are the only people that they may have,” Kabakoff said. “We end up taking on a more personalized role.”

Kabakoff said it’s important for Stonewall Gardens staff members to understand what their clients’ special needs are—much like the staff members at DAP must do.

“They already have an inclination for what it takes to be here and work with our community,” she said “They have a connection to the community, have a passion for it, and they understand it in a way to want to help the residents on a deeper level.

“You also have to be creative in what you do, because this is uncharted territory.”

Jimmy Boegle contributed to this story. Below: Artists’ renderings of what portions of the DAP campus will look like when the $20 million expansion is completed in 2020.

Published in Features

Palm Springs is home to a higher-than-normal percentage of HIV-positive residents—and a new documentary tells the stories of some of these people living with HIV.

Desert Migration will be screened at 7:30 p.m., Thursday, Nov. 5 at the Camelot Theatres by the Palm Springs International Film Society.

During the 80 minutes of Desert Migration, the various subjects share their morning routines, along with bits and pieces of their stories. One of the more interesting subjects is Doc, a tattooed, pierced, muscular man who likes to do yoga in the nude, and who explains that he’s not a conventional gay man. Another subject, Will, is shown walking through his apartment and sitting in a chair reading a Bible. He explains that he’s overweight, that his penis size is inadequate, that he has poor posture, and that he is HIV positive—but it’s the sores on his back, a result of being HIV-positive, that keep him from having sexual encounters.

During a recent phone interview, director Daniel Cardone explained how the film came to be.

“I never really had a particular interest in documentaries,” Cardone said. “(I had) a general interest in film and different kinds of storytelling—so anything that would tell the story in the best way. It’s almost like the subject creates the form as to how the story is told. I thought my path was going to be in narrative filmmaking … .

“I worked with my producer, Marc Smolowitz, a couple of years prior doing a short documentary piece about living with HIV in San Francisco. I thought it might be possible to use that short piece in a longer-form feature, and that’s why I chose to do this film the way that I did it. There are no direct interviews where people talk directly into the camera, or any of those things you traditionally see in a documentary. That was me inspired by fictional narrative, but instead, I was inserting something as narrative while using a true subject. It was a hybrid between a narrative film and documentary. … I invented it as I went along, and that was the exciting part about it.”

Cardone said he’s seen the struggles that many of his friends endured due to being HIV-positive.

“Living in Palm Springs and in my own backyard, I realized that many of my friends were people who … lived through the plague years,” he said. “They lost all their friends, their whole social life, and their whole way of living was gone: They lost their jobs, houses and their health. Fortunately, everyone shown in the film managed to regain some ground to a certain degree. I was very much interested in the psychological ramifications of that.

“There have been a few films about HIV showing the terrible years and losing a lot of people in the Castro District, and How to Survive a Plague, which shows ACT UP trying to advocate to save people’s lives. I wanted to go beyond that and look at: Where are we now? And where are we now with the people who lived through all that? I wanted to dive into those aspects, especially the psychological aspect and the ongoing trauma, and how they live day after day after day, and what the medications they’re taking do their system. That was particularly important. No one really knows for sure what it’s doing to their systems.”

The issues with medications are addressed; many people don’t realize how damaging many HIV medications can be. Another topic: why some muscular HIV-positive men are maniacal about their upkeep.

“One thing about gay men is many of them are body-conscious. Another issue is when you’ve gone through HIV, and your body is wasting away,” Cordone said. “All these people you see in the film at the gym working out at some point were wasting away. They were alarmingly thin. There is one particular man in the film, Steve, who is mentioned going on steroid therapy, which promotes muscle mass and prevents his muscles from fading away. On top of that, it really does build up muscle tone—and that relates to a comment that was also made about HIV-positive men having the best bodies.”

Cardone said he wasn’t prepared for how the film changed his own perspective.

“On an intellectual level, I was sort of prepared for it, and I knew what was going to come up. You know what you’re going to find on an intellectual level,” he said. “But what surprises you is the emotional impact that it has on you. … Hearing their stories in emotional ways was really overwhelming at times. You’re sitting there re-living someone’s life with them, and they’re being completely honest and open. It’s made me a more open and emotional person and helped me put my own life into perspective—and to be grateful. Just getting into that emotional heart of the matter took me by surprise and was a really good thing about making the film.”

I wanted to hear more about some of these men’s stories—especially about a man named Ted, who mentioned he read And the Band Played On and remembered his encounter with “patient zero.” Cardone said it was hard to figure out what to use and what not to use.

“Everyone brought something to the table and was really unique in a way,” he said. “There’s a lot more to Ted … that unfortunately didn’t make it into the film. It’s where he’s been and the things he’s been through. The same with Will, the gentleman with the sores on his back, and how he feels as a result of having his skin break out like that. There’s so much there, and everyone had a complex story. The hard part was trying to fit it all into the film, because there were so many wonderful moments from everyone—joy and sadness, and everything in between. It was hard to find a balance to fit everything into the movie without shortchanging anyone, and I hope we were successful.”

The Desert AIDS Project is shown in the documentary providing health-care services to some of the subjects. Cardone said the DAP is truly unique, and no program like it exists anywhere else in the country.

“I think what they’re doing overall is extremely positive,” Cardone said. “There is nowhere else that offers what they do. No organization is perfect, but what they do for people, and how they have helped people to transform their lives, is truly magnificent. People couldn’t get access to that health care if they were living in other areas in America, and that’s sort of been the attraction for people to come to the desert. They do a lot of fundraising and raising awareness, and making sure that people with HIV who do live here don’t feel like pariahs and don’t feel like there’s no support. The dental, the checkups, the housing—there’s so many things they offer. The healthcare when you have HIV is a big deal.”

Desert Migration will be screened at 7:30 p.m., Thursday, Nov. 5, at the Camelot Theatres. 2300 E. Baristo Road, in Palm Springs. Tickets are $15; the proceeds will benefit the Palm Springs International Film Society and the Desert AIDS Project. For tickets or more information, call 760-325-6565, or visit www.psfilmfest.org. For more information on the film, visit www.facebook.com/DesertMigration.

Published in Previews and Features

Irene Soderberg is a larger-than-life figure within the LGBT community. She’s a comedienne, a singer and an actress.

She’s suffered from health problems in recent years, but she’s back and better than ever. She’s performing at the Stonewall Equality Concert, which will kick off Palm Springs Pride on Friday, Nov. 1, at the “Forever Marilyn” statue at Palm Canyon Drive and Tahquitz Canyon Way.

A child of Finnish immigrants, Soderberg grew up in New York state.

“Even as a kid, I was always singing. We worked from the time we were 8 years old … in the fields, hard labor—people would say it would be slave labor now, but that’s all we knew. We worked from February to November every year, picking all the fruits and berries. We also worked in a cannery.”

While Soderberg has varied talents, she’s especially passionate about singing.

“I knew that singing was always my life,” she said. “When I was in fifth-grade, I was a soloist in the chorus, and all the rest of the chorus girls were sixth-graders,” she said during a recent phone interview from her home in West Hollywood. “… It was so interesting that I had a big challenge in college, and I turned away from music and quit school. I was devastated by the music director. I started bartending, moved to Hawaii, and I started belting it out behind the bar—and that’s how I got started singing again. I got an Equity contract singing behind the bar at Hamburger Mary’s in Waikiki. I got back to it just like that.”

That singing led to her appearing in a production of Godspell at the San Jose (Calif.) Repertory Theatre, a gig that she said led to the unleashing of her “inner drag queen.”

“I would get these clothes, take them, cut them up and turn them into a new outfit. We would watch Saturday movies, and I would put on a different outfit to go with every movie that would play on Saturday afternoon,” she said. “I just loved the costuming, and many people don’t know this, but I make my costumes. Drag queens approach me now and say, ‘Make my clothes!’ I say, ‘If you got the money, honey, it’s possible!’”

After moving to San Francisco, Soderberg won a Mae West look-alike contest.

“I was working on a show at the same time called Men Behind Bars, and I was playing a fairy godmother,” she remembered. “I made my entrance onto the stage from a wire 40 feet above the stage. While we were rehearsing, they said there was a Mae West look-alike contest, and ‘that you should enter.’ I made my own outfits and everything, so I said, ‘Sure, why not?’ People always said I could do Mae West better than anyone. Lily Tomlin was a judge.”

She said she managed to make the entire audience laugh with her comedy and acting talents; in fact, she said she managed to win the contest before she even sang her own parody of a song from the 1920s, “A Good Man Is Hard to Find.” 

After five surgeries in four years, she had to take a break and cut back on live appearances. She also deals with other health issues on a daily basis.

“I’m HIV-positive,” she said. “I got HIV from my ex-husband in San Francisco. I’ve been HIV-positive for about 24 years. Most people don’t know that I’m HIV-positive. I’m speaking out now, because it’s important people get inspiration and validation from whatever source they can, and who better than to give reassurance, comfort and inspiration than a fairy godmother?”

She is now returning to doing what she does best—entertaining people, making them laugh, and sharing her song parodies with audiences. She has started performing regularly at Azul/Alibi in downtown Palm Springs.

“I really respect the owner, George Kessinger,” she said. “He actually built that place. He is really kind of a man after my own heart, because my father built our house. I think the whole place is wonderful; the staff is very professional, and I can’t say enough kind, wonderful things about how great they are.”

She has recorded five albums and is currently working on a sixth.

“One has to work within one’s own budget, and the music business has changed dramatically over the years,” she said. “I recorded my first CD in 1999, and I actually was at Palm Springs Pride in 1999 selling CDs. It was so wonderful, because I sang, and people were lined up to buy my CD. My song parodies are the reason I’m booked all over the country. I can mix up beautiful songs with being funny, which makes it irresistible to people.”

While Soderberg has performed at gay-pride celebrations around the country—including much bigger celebrations—she said Palm Springs Pride is an especially wonderful event.

“First of all, it’s the last one of the year,” she said. “It also has this charm to it. I sang in San Francisco for a half-million people at gay pride; that’s a far cry from Palm Springs gay pride, but the energy of Palm Springs and the genuineness—you can’t find that anywhere else. It is just so intimate, and it’s a celebration, especially with marriage equality this year. It’s so exciting.”

The Stonewall Equality Concert takes place from 6 to 10 p.m., Friday, Nov. 1, at the "Forever Marilyn" statue, at the corner of Palm Canyon Drive and Tahquitz Canyon Way in Palm Springs. Other scheduled performers include the Palm Springs Gay Men’s Chorus, DJ Corey D spinning a retro ’80s mix, Doug Strahm and Arro Verse. Admission is free. Visit pspride.org/pride-2013/equality-concert for more information.

Published in Previews

I was certain that How to Survive a Plague was going to take home the big documentary Oscar prize this year. Alas, Searching for Sugar Man (a very good movie) took home the award.

There were other great documentaries last year, including West of Memphis, about the West Memphis Three, and Paul Williams Still Alive (the title says it all). However, this one packed the biggest wallop. It chronicles the struggles AIDS activists went through to get the condition into the public conversation, and push for medications to keep themselves alive.

Viewing this movie promotes a parade of emotions, from pure heartbreak, to anger, and ultimately to jubilation. It starts in the ’80s, with a band of activists including Peter Staley, Larry Kramer, Mark Harrington, Ray Navarro and Bob Rafsky. Rafsky famously challenged Bill Clinton during a campaign speech, resulting in Clinton’s “I feel your pain!” retort.

Bill … I seriously doubt you felt that man’s pain.

If you have never seen footage of Larry Kramer popping off at fellow ACT UP activists during a pivotal gathering with his “plague” speech, you will see something amazing when you watch this movie. You will also see things as horrid as Kramer’s speech is amazing—for example, when George Bush No. 1 complains that AIDS is a disease resulting from behavior during a televised debate, and every single time a word comes out of the mouth of Jesse Helms.

Many of the people you see in this movie did not survive—but a good group of them did. It’s a powerful thing to see men like Staley and Kramer sitting for modern-day interviews, celebrating their victories and mourning their losses.

You more than likely missed this one in theaters. Do yourself and your families a favor, and take the time to watch it at home.

Special Features: A director’s commentary featuring ACT UP activists and some deleted scenes.

Published in DVDs/Home Viewing