There is life with HIV

Long Term Survivors Unite

For us long-term survivors, embracing resilience means being united

Image Sergei Tokmakov Terms.Law by Pixabay

In the 80s/90s, the hospital environment resembled a war

From the hedonistic gay bars and clubs of Manhattan in the 70s to the AIDS hospital wards and spiritual supportive environments of the 80s and 90s, as well as the post-protease meth houses and rehabs of the 2000s through rallies, protests and conferences. HIV activists of the 2010s, Barron's life story arc is familiar to many long-term survivors.

He found himself connecting to a wider world of long-term survivors, all of them coming together to fight not just for their own lives, but also for others in poor health and poverty.

COVID-19 and people with HIV. What to do - WHO and CDC Guidelines

The move to Barron, who lives in New Jersey about an hour outside of Manhattan, began around 2010 when, long plagued by AIDS, hepatitis C, cancer and addiction, he held a men's retreat called Body Electric.

Definitely learn to Draw Your Own Characters or your Favorite Characters, even if you've never drawn before. 42 Lessons that will show you that Drawing is NOT a “Gift” but a Skill that we can help you Develop.

“At the climax,” he recalls, “I'm blindfolded and curled up naked in a fetal position, wrapped in a blanket, thinking about being abused as a child, crying. So I start to warm up, I start laughing and I think, 'I'm a strong son of a bitch!' — if you forgive me my french. 'I survived!' ”

Shortly after that cathartic experience, Barron saw United in Anger, the 2012 documentary about the early days of the activist collective. AIDS ACT UP

"While I'm still around, I'll have a purpose."


The COVID-19 Pandemic Has Prevented Large Meetings

For us long-term survivors, the key to embracing resilience is staying together.

Now 64, Ed. Barron tested HIV positive in the mid-1980s. Taking a shortcut, he tells POZ the story of his life in a rough tough-guy voice that usually speeds up and gets emotional. It is a remarkable and breathtaking story of how someone who was completely lost found himself.

 

He later attended his first meeting of the current ACT UP New York group, whose small cadre still met, until recently, weekly. (So ​​far, the new disease, coronavirus known as COVID-19, had prevented large gatherings.) “I thought about how self-centered I was, using drugs all those years that people struggled to stay alive,” says Barron.

With this realization, he launched into activism, becoming a true midlife warrior. In addition to attending local ACT UP meetings, he traveled to AIDS Watch, the annual lobbying summit for people with HIV/AIDS in Washington, DC, and joined the New Jersey HIV Planning Council and the largest HIV/AIDS agency. State AIDS, Hyacinth.

Definitely learn to Draw Your Own Characters or your Favorite Characters, even if you've never drawn before. 42 Lessons that will show you that Drawing is NOT a “Gift” but a Skill that we can help you Develop.

On June 5, Barron will participate in New Jersey's inaugural celebration of Long-Term HIV Survivors Awareness Day, telling her story of HIV, addiction and recovery on a panel with other survivors, including cisgender and transgender women.

He also works part-time at a garden center, despite being partially confined to a wheelchair. “My boss tells me, 'I don't know how you get here so happy every day with everything you've been through,'” says Barron. “And I say, 'I could stay home and feel sorry for myself, but I'm alive, and a lot of my friends aren't.'”

***


Who qualifies as a long-term survivor is in the viewer's eyes.

However, the term is most commonly used to describe a core group of individuals who have lived with HIV since before 1996, the year effective treatment was made available. That said, it can also apply to more recently diagnosed or HIV-negative people who also lived through the darkest times, breastfeeding and losing friends and lovers.

Definitions aside, how can we understand what separates the Ed Barrons from the world, who find a reason to live despite the crushing losses of people like Dave Mills?

Earlier this year, Mills, a longtime survivor who lives in Florida, sent a suicide letter to other longtime survivor Tez Anderson of San Francisco.

Along with a few others like Sean McKenna of New York, Jeff Berry of Chicago and Berkeley, Matt Sharp of California, Anderson took on the challenge of connecting the estimated 50.000 Americans living with HIV since the pre-protease days. He is also the founder of HIV Long-Term Survivors Awareness Day, celebrated every June 5th.

Definitely learn to Draw Your Own Characters or your Favorite Characters, even if you've never drawn before. 42 Lessons that will show you that Drawing is NOT a “Gift” but a Skill that we can help you Develop.

The letter read: “Tez, unfortunately, if you are reading this, it was sent when I got to the point where suicide was the only option left to me… 

I got very tired of fighting to preserve my dignity and quality of life, to fight more just for the sake of survival.”

https://soropositivo.org/mulheres-com-mais-de-50-anos-vivendo-com-hiv-sao-negligenciadas/


When Anderson Received the Letter, Mills Had Already Committed Suicide 🙁

When Anderson received the letter, Mills had actually committed suicide.

Anderson posted the news on his Facebook page, Let's Kick ASS — AIDS Survivor Syndrome, which has thousands of followers. “He was 65 years old,” Anderson wrote. "He mentions AIDS Survivor Syndrome, PTSD [post-traumatic stress disorder], poverty and lack of services as factors in his decision to end his life... It was a crisis of belonging and despair."

On Anderson's page, the reaction to the news of Mills' suicide was intense. One person wrote:

"It's so sad that we live in a world of indifference, where poverty, alienation and HIV phobia still surround long-term survivors." 

And another wrote: 

"I'm a paycheck for having nowhere to live, and I know the struggles he went through."

Definitely learn to Draw Your Own Characters or your Favorite Characters, even if you've never drawn before. 42 Lessons that will show you that Drawing is NOT a “Gift” but a Skill that we can help you Develop.

Anderson says long-term survivors feel left behind by AIDS service organizations, which have increasingly focused their efforts on HIV prevention.

This includes pre-exposure prophylaxis (PrEP.) and the message Undetectable equals non-communicable (I = I), which promotes the fact that people with HIV who maintain an undetectable viral load cannot transmit the virus through sex. , even without condoms.

 

Together, PrEP and I = I are the golden keys to campaigns to end the epidemic, the current focus of health agencies across the country from the Centers for Disease Control and Prevention onwards.

“I saw a draft of California's new Ending the Epidemic plan,” he said. "It didn't have much to do with aging." Anderson, who has been living with HIV since the 1980s, insists that long-term survivors have a role to play. 


And we have, I say, Claudio

“We are the oldest and we know a lot about life and death. We need to be included – not left to live in isolation. ”

The many physical deficits that come from living with HIV for decades have been well documented – the chronic inflammation that accelerates the aging of bones, brain and other organs, and the cascade of drug side effects, including neuropathy, lipodystrophy and more. However, it seems that at the heart of the AIDS Survivor Syndrome is the deep depression and isolation that come not only from surviving the loss of so many loved ones, but also from living, almost like a ghost, in a world that has advanced.

Definitely learn to Draw Your Own Characters or your Favorite Characters, even if you've never drawn before. 42 Lessons that will show you that Drawing is NOT a “Gift” but a Skill that we can help you Develop.

For Anderson, whose Let's Kick ASS page has generated support groups in cities across the country, this kind of isolation has only one palliative, if not a cure: “It's finding other people who understand them and putting them together,” he says.

 


Well, there in Brazil (here)

Fortunately, groups across the country are helping long-time survivors find comfort with each other.

In Baltimore, Older Women Embracing Life (OWEL) has been meeting for 17 years. “About 15 to 20 of us women show up once a month,” says 74-year-old founding partner Stephanie Brooks-Wiggins. 

“We have an annual conference that attracts hundreds of women from across the east coast. We share information, we have guest speakers, we have lunch and we share our feelings, what we are going through.

 Women still hide their diagnoses from family and friends, so we give them an outlet to share that with women in the same boat. ”

Melanie Reese, 68, who became OWEL's executive director when her beloved former executive director Carolyn Massey died two years ago, says: “The first time I went to the group in 2005, my jaw dropped when I saw other women who joined the group. they looked like me, going through the same ups and downs of living with HIV. It was okay to just listen, hug someone without fear of rejecting them, share our good and not-so-good experiences, pray. I felt so supported and so loved. ”

In Chicago, the aforementioned Berry and Sharp started The Meeting Project five years ago. They hosted a number of city halls, not just in Chicago but in other cities, including Philadelphia and Atlanta, for long-term survivors – both positive and negative – to gather.

Attendees at a 2018 event hosted by The Reunion Project, courtesy of The Reunion Project

Not Much Different from Holocaust or the Vietnam War

“All these issues of PTSD, trauma and isolation were coming up, and just like the Holocaust or the Vietnam War, it took people several years to be able to revisit what happened,” says Berry. "We tell people that it's not about how long or they've been living with HIV, but they personally identify themselves as survivors, which includes allies such as relatives, friends and nurses."

HIV and Immunoness – Premature Aging is Fact

Definitely learn to Draw Your Own Characters or your Favorite Characters, even if you've never drawn before. 42 Lessons that will show you that Drawing is NOT a “Gift” but a Skill that we can help you Develop.

 

In Philadelphia City Hall, Berry says, he met a long-time survivor who lived isolated 45 minutes from the city. "She told me that she never publicly discussed having HIV and, on the way to city hall, she was so scared that she almost turned around and drove home, but she decided to stay and was so happy about it." He regularly hears from people who say they suffered years of alcohol and drug abuse before they entered recovery and only then prepares to discuss the plague years.

"It can get really deep," he says of city halls, "but we try to keep it going."

In Chicago, there is also a small group of Let's Kick ASS of positive and negative older men (although they are open to all sexes) that meet weekly. The group is led by Joe Knell, 60, who is HIV negative. He says he didn't even know AIDS Survivor Syndrome was “a thing” until he discovered Anderson's Let's Kick ASS page.

“I lost friends who were very important to me,” says Knell. “For years I've experienced depression, anxiety, always being on edge and angry, hypervigilant. When I read about these symptoms, I thought: 'I've had these'

So I thought there must be other people in Chicago who have experienced these symptoms.” So he started the group.

“Jim”, who lives with HIV, is a colleague. “I've had depression and anxiety issues for years and I realized that many of them started when the epidemic soared in the 1980s,” he says. “I didn't know what to expect when I arrived at the group, but the meetings made me realize that I wasn't the only one affected – and that feels good. I feel very close to the people here and look forward to talking to them every week. ”

In New Jersey, mother Xio Mora-Lopez, diagnosed with HIV in 1994, discussed how for years she had lived in near total secrecy about the virus. “I have never met other people living with HIV or engaged in a support group,” she says.


aging is a privilege

Isolation and Insulation

"It had severely isolated me." 

Then, in 2016, at a critical point, she attended a World AIDS Day open mic event for long-term HIV survivors at New York City's Judson Church and told her story publicly for the first time. “I felt empowered and free after that”, she says, “supported by a community”.

She now regularly attends the Group GMHC 50 and Beyond for seniors with HIV. “It absolutely changed my life for the better,” she says – despite living with the long-term side effects of HIV and its treatment, such as gastrointestinal problems and severe neuropathy in her hands. “I needed to find people I had something in common with from then on,” she says.

***

 Clarity

To be clear, joining a group of long-term survivors is definitely not a silver bullet. Brooks-Wiggins, who acknowledges receiving great support and joy from OWEL in Baltimore, says: “Look, I still get depressed. I was treated for depression and consulted a therapist and a couples counselor. ”

However, as many long-term survivors claim, having a support circle of any kind – which can also include non-HIV family and friends – can alleviate depression, anxiety and isolation. Hank Trout of San Francisco, 67, diagnosed with HIV in 1989, puts it very simply. He says that since he started attending the San Francisco AIDS Foundation's Elizabeth Taylor 50-Plus Network, “I don't feel so alone anymore. Before that, everyone I knew was dead, and it didn't occur to me that there were other survivors out there. ”

The article follows below:

Aging with HIV Why aging is possible!

 

Obviously, not everyone lives in large urban areas that lend themselves to being together. While it is much more difficult to find fellowship in rural areas, it can be done.

Edwin Brandon, 60, was diagnosed in 1983 with GRID (gay-related immunodeficiency), which came to be known as AIDS. Nine years ago, he left Memphis, where he had been well-connected in HIV circles, for rural Tennessee to care for his aging parents. However, he still goes to Jackson, Tennessee, once a month to join his region's Ryan White Planning Council; the rest of the time, he stays connected online through groups like Let's Kick ASS. For people like him who are physically isolated, “you need to go ahead and invest some time to find an online group that meets your needs,” he says.

Recently, Brandon adds, he participated in an online smoking cessation group for people with HIV. This helped him kick the habit after 40 years, but when he left the group, he said, “I felt like I was losing friends. You can start caring about people, even virtually. ”

Mora-Lopez agrees: "Real-life contact with people is a deeper connection, but this online element can be a lifesaver." This is especially true now during the COVID-19 crisis.

Everyone differs, of course. In your suicide letter, Mills complained about the lack of support from her local HIV agency, but he actually struggled with depression long before his HIV diagnosis, and it's possible that all the support in the world couldn't save him. 

We will never know.

For long-time survivors struggling to survive today, “I would encourage them to keep trying to find a place – physical or online – where they feel safe enough to talk,” says Brooks-Wiggins of Baltimore. "You won't open up until you find this."

Fortunately, Barron from New Jersey did. “I was disconnected for many years,” he says. “The person I am today is not the same person as I was ten years ago. Perc

When Anderson received the letter, Mills had actually committed suicide.

Anderson posted the news on his Facebook page, Let's Kick ASS — AIDS Survivor Syndrome, which has thousands of followers. “He was 65 years old,” Anderson wrote. "He mentions AIDS Survivor Syndrome, PTSD [post-traumatic stress disorder], poverty and lack of services as factors in his decision to end his life... It was a crisis of belonging and despair."

On Anderson's page, the reaction to the news of Mills' suicide was intense. One person wrote:

"It's so sad that we live in a world of indifference, where poverty, alienation and HIV phobia still surround long-term survivors." 

And another wrote: 

"I'm a paycheck for having nowhere to live, and I know the struggles he went through."

Anderson says long-term survivors feel left behind by AIDS service organizations, which have increasingly focused their efforts on HIV prevention.

This includes pre-exposure prophylaxis (PrEP.) and the message Undetectable equals non-communicable (I = I), which promotes the fact that people with HIV who maintain an undetectable viral load cannot transmit the virus through sex. , even without condoms.

 

Together, PrEP and I = I are the golden keys to campaigns to end the epidemic, the current focus of health agencies across the country from the Centers for Disease Control and Prevention onwards.

“I saw a draft of California's new Ending the Epidemic plan,” he said. "It didn't have much to do with aging." Anderson, who has been living with HIV since the 1980s, insists that long-term survivors have a role to play. 

And we have, I say, Claudio

“We are the oldest and we know a lot about life and death. We need to be included – not left to live in isolation. ”

The many physical deficits that come from living with HIV for decades have been well documented – the chronic inflammation that accelerates the aging of bones, brain and other organs, and the cascade of drug side effects, including neuropathy, lipodystrophy and more. However, it seems that at the heart of the AIDS Survivor Syndrome is the deep depression and isolation that come not only from surviving the loss of so many loved ones, but also from living, almost like a ghost, in a world that has advanced.

For Anderson, whose Let's Kick ASS page has generated support groups in cities across the country, this kind of isolation has only one palliative, if not a cure: “It's finding other people who understand them and putting them together,” he says.

 

There, then, in Brazil...

 

Fortunately, groups across the country are helping long-time survivors find comfort with each other.

In Baltimore, Older Women Embracing Life (OWEL) has been meeting for 17 years. “About 15 to 20 of us women show up once a month,” says 74-year-old founding partner Stephanie Brooks-Wiggins. 

“We have an annual conference that attracts hundreds of women from across the east coast. We share information, we have guest speakers, we have lunch and we share our feelings, what we are going through.

 Women still hide their diagnoses from family and friends, so we give them an outlet to share that with women in the same boat. ”

Definitely learn to Draw Your Own Characters or your Favorite Characters, even if you've never drawn before. 42 Lessons that will show you that Drawing is NOT a “Gift” but a Skill that we can help you Develop.

Melanie Reese, 68, who became OWEL's executive director when her beloved former executive director Carolyn Massey died two years ago, says: “The first time I went to the group in 2005, my jaw dropped when I saw other women who joined the group. they looked like me, going through the same ups and downs of living with HIV. It was okay to just listen, hug someone without fear of rejecting them, share our good and not-so-good experiences, pray. I felt so supported and so loved. ”

In Chicago, the aforementioned Berry and Sharp started The Meeting Project five years ago. They hosted a number of city halls, not just in Chicago but in other cities, including Philadelphia and Atlanta, for long-term survivors – both positive and negative – to gather.

Attendees at a 2018 event hosted by The Reunion Project, courtesy of The Reunion Project

Not Much Different from Holocaust or the Vietnam War

“All these issues of PTSD, trauma and isolation were coming up, and just like the Holocaust or the Vietnam War, it took people several years to be able to revisit what happened,” says Berry. "We tell people that it's not about how long or they've been living with HIV, but they personally identify themselves as survivors, which includes allies such as relatives, friends and nurses."

HIV and Immunoness – Premature Aging is Fact

 

In Philadelphia City Hall, Berry says, he met a long-time survivor who lived isolated 45 minutes from the city. "She told me that she never publicly discussed having HIV and, on the way to city hall, she was so scared that she almost turned around and drove home, but she decided to stay and was so happy about it." He regularly hears from people who say they suffered years of alcohol and drug abuse before they entered recovery and only then prepares to discuss the plague years.

"It can get really deep," he says of city halls, "but we try to keep it going."

In Chicago, there is also a small group of Let's Kick ASS of positive and negative older men (although they are open to all sexes) that meet weekly. The group is led by Joe Knell, 60, who is HIV negative. He says he didn't even know AIDS Survivor Syndrome was “a thing” until he discovered Anderson's Let's Kick ASS page.

“I lost friends who were very important to me,” says Knell. “For years I've experienced depression, anxiety, always being on edge and angry, hypervigilant. When I read about these symptoms, I thought: 'I've had these'

So I thought there must be other people in Chicago who have experienced these symptoms.” So he started the group.

“Jim”, who lives with HIV, is a colleague. “I've had depression and anxiety issues for years and I realized that many of them started when the epidemic soared in the 1980s,” he says. “I didn't know what to expect when I arrived at the group, but the meetings made me realize that I wasn't the only one affected – and that feels good. I feel very close to the people here and look forward to talking to them every week. ”

In New Jersey, mother Xio Mora-Lopez, diagnosed with HIV in 1994, discussed how for years she had lived in near total secrecy about the virus. “I have never met other people living with HIV or engaged in a support group,” she says.

Isolation and Insulation

"It had severely isolated me." 

Then, in 2016, at a critical point, she attended a World AIDS Day open mic event for long-term HIV survivors at New York City's Judson Church and told her story publicly for the first time. “I felt empowered and free after that”, she says, “supported by a community”.

She now regularly attends the Group GMHC 50 and Beyond for seniors with HIV. “It absolutely changed my life for the better,” she says – despite living with the long-term side effects of HIV and its treatment, such as gastrointestinal problems and severe neuropathy in her hands. “I needed to find people I had something in common with from then on,” she says.

***

 Clarity

To be clear, joining a group of long-term survivors is definitely not a silver bullet. Brooks-Wiggins, who acknowledges receiving great support and joy from OWEL in Baltimore, says: “Look, I still get depressed. I was treated for depression and consulted a therapist and a couples counselor. ”

However, as many long-term survivors claim, having a support circle of any kind – which can also include non-HIV family and friends – can alleviate depression, anxiety and isolation. Hank Trout of San Francisco, 67, diagnosed with HIV in 1989, puts it very simply. He says that since he started attending the San Francisco AIDS Foundation's Elizabeth Taylor 50-Plus Network, “I don't feel so alone anymore. Before that, everyone I knew was dead, and it didn't occur to me that there were other survivors out there. ”

The article follows below:

Aging with HIV Why aging is possible!

 

Obviously, not everyone lives in large urban areas that lend themselves to being together. While it is much more difficult to find fellowship in rural areas, it can be done.

Edwin Brandon, 60, was diagnosed in 1983 with GRID (gay-related immunodeficiency), which came to be known as AIDS. Nine years ago, he left Memphis, where he had been well-connected in HIV circles, for rural Tennessee to care for his aging parents. However, he still goes to Jackson, Tennessee, once a month to join his region's Ryan White Planning Council; the rest of the time, he stays connected online through groups like Let's Kick ASS. For people like him who are physically isolated, “you need to go ahead and invest some time to find an online group that meets your needs,” he says.

Recently, Brandon adds, he participated in an online smoking cessation group for people with HIV. This helped him kick the habit after 40 years, but when he left the group, he said, “I felt like I was losing friends. You can start caring about people, even virtually. ”

Mora-Lopez agrees: "Real-life contact with people is a deeper connection, but this online element can be a lifesaver." This is especially true now during the COVID-19 crisis.

Everyone differs, of course. In your suicide letter, Mills complained about the lack of support from her local HIV agency, but he actually struggled with depression long before his HIV diagnosis, and it's possible that all the support in the world couldn't save him. 

We will never know.

For long-time survivors struggling to survive today, “I would encourage them to keep trying to find a place – physical or online – where they feel safe enough to talk,” says Brooks-Wiggins of Baltimore. "You won't open up until you find this."

Fortunately, Barron from New Jersey did. “I was disconnected for many years,” he says. “The person I am today is not the same person as I was ten years ago. I realize I've changed. I didn't just get old. I became more selective, my friends are counted in different hands, they are honorable people.

 

Aging, which is a privilege, does these things, but aging with HIV brings them with an ever-increasing level of demand and, in fact, I, who had “500 friends” on dacebook, now have less than 220. And cutting…

Viral Load Is Critical Factor In HIV Infection

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