#tim barrus and hiv

[timbarrus]

Take notes. I was a teacher to adolescents with HIV. All of them arrived with a long list of medications. Every school district creates rules like a nurse has to administer all meds, and if students are caught taking their own meds, they were expelled. No drugs. Was a fundamental paradigm mainly because we have no idea what to do with sexually active adolescents, some addicted to opiates, and this was not where anything ends. It's the beginning. Methadone. The idea that people can use antiretrovirals and nothing else is a fantasy. It's going to be a cocktail. These are not the fun drugs. It's a soup of chemicals. All of them toxic. Suicide ideation connected these kids. There are reasons why some kids cannot handle medications at home. Abuse would be one. Your mother's boyfriend said you have to be punished by god. If you were gay, you were already being punished by god. It is now a life of punishment. Selective Serotonin Reuptake Inhibitors were drugs the entire classroom was on, and these were kids, too, who just needed to talk. So talk we did. I Am Going To Kill Myself came up as a topic. Meds were next. After that, there was a lot of rage over the image that HIV clinics project of themselves versus armed cops walking hallways. When these kids see a cop, they leave. Some kids had twenty different medications. The mom's boyfriend throws all the meds down the toilet. They came to school drained. SRIs took too long. Sometimes suicide ideation became just suicide.

[timbarrus]

Take notes. Many of the Boomers with HIV are now elderly. HIV/AIDS affects many of the body's organ systems, including the brain and nervous system. HIV infection actually makes its way to the brain early in the disease process. HIV encephalopathy is an infection spread throughout the brain. The greater the spread of infection in the brain, the worse the dementia symptoms become. Placate. There are a thousand ways. Anecdotally, I frequently see Nursing Staff as impatient, demanding, authoritarian, and out of touch with reality. They are pressed for time, such and such has to happen at a particular time. Assistants are especially in need of retraining. The retraining has to be about more than a bag of tricks to fool the old people. Minimum wage. They have the worst jobs. The jobs no one else will do. Turnover is high. Often, the people who do this kind of work, have no health care themselves. Once you get plugged into the system, you do not get out. "Don't let them put you in a place like this," is what I am told by "the demented." I once worked in a hospital where we had adolescents with organic brain syndrome. When one of them went off -- complete meltdown -- you could hear it on the moon. The elderly have no corner on dementia. Doctors go for the pills. Calm them down. Zombies are more animated. Pills. Pills. Pills. Dementia and abuse are sisters. Someday, we will have more effective weapons to deal with a condition that cannot be approached by the facsimile of war.

[timbarrus]

Take notes. Grief, too, comes for everyone. I worked with adolescent boys who had HIV. Those were the days when nothing and no one was safe. Two thirds of them had lost one parent. Many had concomitant issues (various cancers). When someone from the group died, the boys insisted they would go to the funeral. I had vowed to never go to another funeral. Whenever I go to a funeral, it rains. Every time. It used to be annoying, but rain is now my friend. We were always the last to leave. No one could tell if you were crying or just soaked.

Or both.

Some of them fell completely apart. Some plunged back into addiction. Some were frozen and needed help. Some were in the trenches fighting for their lives. AIDS is not over. It's changed. Some went over the edge and returned to sex work. They swore they had never bonded with anyone. It hurt too much. I know this: They had bonded to one another. There was such a thing as suicide watch.

Grief was rock and roll.

PTS is grief as well. The only way I can handle it is to literally shut up. I listen. My focus is the kid, not the grief. The boys wanted to fight. To punch someone (anyone) in the face. Then, there were young men who wanted you to punch them in the face. Punch and punch back. But it was the wrestling on the floor and the intensity of that conflict a reciprocity where the entire room was weeping their guts out. I brought a tissue box to every funeral. The tissues were a rained sloppy mess. We laughed at that one.

[timbarrus]

I was asked to testify before a senate committee dealing with HIV health issues and doctors. I took a walk. I do not trust homo sapiens sapiens one little bit. I'm autistic. There is nothing you can do to me that would bend me toward whatever it is you want. I will not comply. I walk among you, but I am not like you. I do not feel what you feel. I do not see what you see. I do not value what you value. My existence is not your existence. The first time I was raped in a hospital, I was a kid. I didn't know what they were doing. The second time I was raped in a hospital a few weeks ago. Any printed narrative related to rape does not discuss hospitals or the medical community because they are the people who help you. Not always. The reason disabled people are raped is because we appear as victims.

Shooting fish in a barrel. The helpers and the rapists work together. Just because you are wearing white is irrelevant. Things have changed for rape victims. There is no hiding place. Doctors raped me during the inevitable examination. I was raped multiple times. "Come look at this." Doctors will not believe you. I walked. Just like the gig with senate politicians. Do you really think they care. Apathy is us. I am now a cardiology patient. Pacemaker. Afib. Heart failure. Blood clots in both lungs. My heart is upside down. Thirty pills a day. I am a writer. I do not have health insurance. I am bankrupt and now live in a small cabin. Doctors are not the saviors they pretend to be.

[timbarrus]

No mention of alcohol and HIV. I was working with adolescent boys with HIV and alcoholism. I have read thousands of these well-written, cogent pieces. But even the mention in this article -- and all the others -- is missing a lot. AIDS means stigma. Alcohol does not block the pain. HIV can be racism on steroids. I don't know where you live, but in my little world, Appalachia, it matters what side of the tracks you live on. Mixing this stuff will kill you. Access is a fantasy. 12 teenage boys is a goodly portion of many tiny American towns that have their own issues. Acting Up was not an option. AIDS did not spare them. Oxycontin did not spare them

It took me a while to comprehend that the addiction to Oxy was causing their medications to become toxic. The problem is alcohol, but secrets come with a toxicity all by their own little selves. It's a demon fix. Let's get real. Their lives depend on our getting real. Now, on to fentanyl. More secrets. More Thunderbird. In a field situated near their school. No drug/alcohol treatment. Doctors are complicit, and have addiction issues themselves. At that time, everyone with HIV was using Sustiva which ran fluidly through Wonderland on a dizzy adventure tour involving the community writ large. Horror stories. All the same story. All the same secrets. A Sustiva trip is the equivalent of LSD. Alcohol, Oxy, HIV drugs, violence from dealers, poverty, alcohol, Fentanyl, school failure, suicide.They kill themselves.The end.

[timbarrus]

The boys I was dealing with sat on folding chairs in a circle. “Okay, who is going to play Richard Hatch, and who's going to be Amarosa.” The question was What Is Reality. What is reality on TV. Or. What does it really mean. The boys all had HIV. A few had gone into full blown AIDS. Schools hated them. No typical classrooms. It had nothing to do with health status. It had to do with rage. The machine did not mean them. They plotted. A lot. Usually, over stuff. Sneakers. Clothes. Bling. Phones. Cops. Teachers. Judges. Social workers. Boom: Antiretrovirals. You do not get better overnight. It was a long list of stuff they would not do (like being naked in front of nurses). Let the play begin. Craiger had had sex with every one of his comrades. Secrets. They child could throw shade at you that gleamed. The reason there are floors is because boys roll around laughing on them. And they could be violent. “Throw your chair at the wall, not me.” They played: Who Will Die First. Craiger got kicked off the island. It had been a rough week. In their world, people died from guns. Never let them see you cry. Everyone cried. Then, they were silent. Death drained us. Reality was nuanced. What am I doing here. They're all going to die. There is nothing I could do. Oh, but there was. Once, Craiger stood up and removed his clothes. Seeing that body shocked them. They just wanted to live. I taught them how to read. That meant diving into a book so you could be someone else. It was all I had.

[timbarrus]

HIV.gov is one of the voices with an actual platform. But these government platforms (especially the platforms where the new funding opportunities are announced) have no door to open for actual communication to take place. This means they’re preaching. Not listening. This is now so embedded in the operational paradigms of the institution that it would take a special act of congress to change the practice of speaking truth to power. HIV.gov does not speak truth to power. It is power. They are preaching down to us. The things we MUST do.

Or else what.

[timbarrus]

Tim Barrus

Incendiary Comments is a book that examines my relationship with the New York Times. It’s been a long one. I am publishing my stuff there in terms of following patterns. Themes: Politics. Resistance. Medical. Autism, Neurodivergence (I’m Aspergers).  Economics. Democracy. Homelessness. Work-At-Home. Education. Tech. Suits. Parenting. HIV/AIDS. The whole nine yards. I am reporting. The work belongs to me. No one else there can say that in terms of the diversity that gives my voice a drive. I am driven. Reporting on what I said. What I see even if it’s not the same stance of the New York Times that has many moderates but no radical thinking, the focus is on my work. Not their stuff. I have picked my own graphics. I am also a professional photographer. I do not use NYT graphics. I do not intend to publish graphics. Just the text. Below is an example of the writing. I have published nine books. PEN awards. Columbia Journalism Review. Esquire Magazine, Booksellers Awards. Best books of the year awards. Most Notable Book NYT. I have sold over 200,000 books. Including film rights on all my books. Publishing has branded me as provocative and controversial. My books are all controversial. If you or your company cannot handle controversy, let’s avoid wasting one another’s time. My work is not like the work of anyone you know. I call suits suits. My work is an attempt to make the New York Times human. I am a radical. I have been publishing a long time. This one has taken years because I only make one submission a day. You do not know me. Even if you know my name (and you probably don’t) that is different from knowing or reading my work. I will include just a few samples. The New York Times knows I am publishing this book. In fact, I have mentioned it on their pages many times. If such a collection interests you, there is more content on my website. Thank you. — Tim Barrus

Take notes. I am living in a car. I am working in this car. I have published nine books. And I am living and working in a car. I am not alone. Hurricane survivors and these other mountain folks who all worked somewhere else. None of the people here have any experience at being homeless. Now, all of that is over. Big families are in tents. I can work anywhere. It's winter and people are cold. Some people have disappeared. Because they had a chance to get off the grid. Work means chopping firewood. I have worked on picnic tables in parks. I have worked in bus stations toilets. I have worked in schools where when it rained, there would be a deluge from a very bad roof. I have worked in coffee shops where it was warm. So, when you say the word -- work -- no one I have ever met would consider writing a job. At work. Nobody writes about how what's really going on is a sea of sadomasochism perpetuated by Mr. Boss Man, a suit, who gets off on abusing other people who put up with it because. I have no idea why. When suits tell you to jump. You comply. Last year, I wrote books in a treehouse. I am the boss. You suits just shrug indifferently. Everyone is supposed to be like you. Suits watching screens. Robots. The suits call the shots. For you. Not for me. I am not a part of your rotting culture. If I was rich, why would I be working in a car in a parking lot. I have always know that work at home paradigms were expendable because no suit could abuse you beyond the piling on of work. https://tim-barrus.format.com/   TimotheeBarrus@Gmail.com

[timbarrus]

Take Notes. "But, like Mr. Manchin, we should all be rooting for them to succeed." I'm shocked. I find this statement to be vicsious. It defends the RAPIST. What this fool of a homo sapiens who wrote this sickening piece of pornography wants is called compliance. I wrote a book called THE RAPIST. "But, like Mr. Manchin, we should all be rooting for them to succeed." Vomit. Fat chance, baby. I want the RAPIST to fail hard. I do not root for this group of republican Bitches to succeed. I will defend my daughter from the RAPIST. It rapes women. I remove the RAPIST's humanity out of my brain. The It is not human. It's an It. A RAPIST. His stated 2025 plans to end HIV meds will get pushed back all the way to Act Up. Corpses on steps. The strategies worked. 

HIV meds eliminated. The RAPIST wants to kill us whether we like it or not. I hate everything the Rapist spits out of his fat asshole. America loves asshole. The asshole culture can run its tongue around a virtual psychotic. And here is this patently absurd article which is beneath contempt. The York Times bows on its knees before the fat asshole king. Feces emerge, spewed from his vile and evil eyes and he wants to kill us all, I will not shut up. It's a RAPIST. It RAPES women. Are we all commanded to sacrifice our daughters to be raped by a psychotic. We will be forced to watch at gunpoint. Why would the New York Times be OK with that. What this article is actually saying is you have no voice. Like me. To talk back. Normal. Good times. -- Tim Barrus

[timbarrus]

We seem to have forgotten that HIV is still with us. HIV is still with us. How many times do I have to write it. Now, repeat after me. HIV is still with us.

[timbarrus]

AT NIGHT, THEY PACE

you were sleeping and I would sculpt your naked body with the contours of my tongue/ you were that flawless carnal bleeding from your hole/ the inside of my mouth was eros drowned in blood/ in the cold hours of the night, you were awake and pacing as if you were listening to an echo no one else could hear/ in fact, you could wail and die and hear the wind/ i will show you all your wounds and knives/

I work with adolescent boys at-risk. Sleep is a pressing issue. One exhausted kid can mean an entire house of exhausted kids.

None of the experts talk about HIV because we really do think AIDS is over. There is no hope that we might remove our heads from the indifferent sand.

The “hard to reach” is HIV medical code for this is probably a teenage boy. The medical paradigm will push the pills. The rest of the kid can be a shipwreck. The medical paradigm offers little beyond the antiretrovirals. While the numbers have shown signs of hope for other segments of the at-risk population, the adolescent numbers are as stubborn as the boys themselves can be.

Anxiety is a killer. It has them by the balls.

Boys in crisis are young men who do not sleep. Past medications like Sustiva have printed information on the pill bottle or box that the drug can cause nightmares. This is disingenuous for many boys at-risk of full-blown AIDS. Substitute the term nightmare for the term, Roller Coaster Acid Trip Through Sleepville. There is not much sleep in Sleepvillle to be had. Monsters are around every corner.

Add into this already complicated issue, the various and demanding issues of sex and sexuality. It is quite impossible for most adults to hold their little adolescent hands through this one. Grounding him will not help. Adults have their own problems. Your kid is having sex with another kid down the block. They have sworn their undying love.

This is not the time to be an asshole parent.

School with HIV is not easy. It can be far, far more complex than just taking a pill every day.

Anxiety affects attention spans. Peers are not always other typical kids. Peers can be other boys with HIV.

Blood draws might need emotional support.

Physical after physical after physical might need emotional support.

Some adult’s gloved finger up your asshole time and time and time again begs the question: what is wrong with the medical paradigm. The kid says it’s sexual. The adults scream no. But the kid is right.

Just getting to the clinic might need emotional support.

What if their best friend is sick again. What if their lover has the flu. There are a lot of what ifs in adolescence. There are even more what ifs in HIV.

Every perceived skin condition (like acne) can be seen by an anxious teenager as the beginning of the end. And often calls for emotional support.

Being in sports requires emotional informational support. These are not snowflake kids. You can tell a kid his HIV is undetectable. But he has to believe it for it to mean anything.

For many at-risk boys, emotional support is nonexistent. A clinic might provide pills, but emotional support remains an idea.

How are we doing.

Not too well. And adulthood interrupted.

My floor is worn with pathways. At night, they pace.

https://www.nytimes.com/2019/10/28/well/family/teenagers-sleep-insomnia.html#commentsContainer&permid=103409106:103409106

[timbarrus]

I work with adolescent boys at-risk. Many have HIV. They are frequently referred to as -- the Hard to Reach. A term that carries stigma like a tsunami. I tweet like crazy. Usually about them and me. Relationships matter.

AIDS is not over. I want you to know that HIV still means a crushing hatred can be an indifference that reinforces keeping these kids in their assigned place. There are many struggles to stay alive. 

We only think we know this disease. But in the back of our minds, we think we've solved it. What about kids who live hundreds of miles from public health clinics, and getting the meds is next to impossible. What about the repeated and repeated and repeated full-on physicals that rob adolescents of their sacred privacy and are seen from such boys as continued sexual abuse this time perpetrated by the system that exploits not supports.

I tweet about all of this and more. I attempt, and usually fail, to communicate their humanity, their terrors, their vulnerability, their attributes, and the immense accumulation of struggles that define them. They are more than the sum of their diseases.

Few people read this stuff. We create a lot of art. Constructed to remind us we are still alive. We put it out there. The point is that we can use creativity to increase our self-awareness versus looking for the relief of a pill that comes with side effects and we already have those in abundance.

Most of all I tweet about death. We are not afraid.

https://www.nytimes.com/2019/11/22/opinion/social-media-kids.html#commentsContainer&permid=103793220:103793220

https://timbarrusart.tumblr.com

[timbarrus]

Extreme, deeply embedded poverty. No jobs. No hope. The land raped and poisoned. Opiate epidemic. School failure. Drop out rate. Suicide rate. HIV. Homelessness. Invisible to America.

The comfortable among you will tell you emphatically that there is always hope. I assume most people buy that dog and pony show. The reality is that hope is rare. Especially in Appalachia. We are not the land of hope. We are the land of the forgotten. We are the land of no running water. We are the land of no food, no food stamps, no heat. Don’t tell us there is always hope. Perhaps there is always hope for the people who can afford hope.

This is Appalachia.  

[timbarrus]

Stuff That Went Out To Stanford University

I live in Appalachia. My last job (SPED) was working with adolescent boys w/ HIV/AIDS. The disease did not go away. It did not disappear. It's hard to take your meds when you live in a homeless shelter. It's humiliating when the school nurse has to dish out the antiretrovirals and everyone knows what you have. All of them are disabled. We focused a lot on art, and photography. Because it's what I know. Check out Flaunt sometime. Real Stories Gallery Foundation gifted cameras to us so we could go out and call ourselves photographers. We did not call ourselves survivors. So yesterday. It was a Gamechanger. Learning how to edit video gives you experience with math. Hands on. All of this times ten.

Real Stories is the only nonprofit that understood the immediacy. Or you lose your students. Lie to them once, and you are done. The MOMENT the boys received the cameras, they were all over the place experimenting with the medium. None of them had ever owned a camera. We gave them the cameras, and they still have them. They did not have to wait, and wait, and wait for the cameras because the foundation was sensitive to the Time Problem. How many 14-year-old boys do you know who could wait months for a foundation (forget education, it's irrelevant) to follow its procedures, and these kids will wash their hands of you day 1. The foundation puts its money where its mouth is. Very rare. You guys employ a bigger picture, and that is fine. But it's a picture so removed from real kids, there's no there there. Not to the kid. They do not care intellectually about common challenges because they are challenges themselves.

I have failed them. You have failed them. Education has failed them. Afforable housing is now an abstraction. I wish there was some way to connect your bigger picture with their bigger picture. They are not the little people with the little answers. They are important people who have failed everything in their lives. The bigger picture is ephemeral because it is such a political animal. You have made that clear. I am here to tell you that smaller foundations have the ability to actually address the actual problems working with these kids, and working with them is easier than a foundation that is only there in the trenches with you, on a foundation's terms. A fantasy. Sorry, guys, but the boys have their own terms.

The gap between who you are and who they are is just one thing that doesn't work. This gap is about class and caste, and you know it. You are good guys, but you are imagining a world that no longer exists. I tell my students: College is not necessary. The people with the real money buying art photography, do not care where you went to college. What do you have in your portfolio today. Not yesterday. Not tomorrow. Right now. Immediacy is maddening. But it's a big part of building trust. I could care less about where some photographer went to school. I am telling them they don't have to go to school to learn what they now know. What they know can be built upon by them. THEM. Not me. Guess what. They're publishing. They don't really need you guys. They can stake out their own own direction. A road trip they will not forget.

[timbarrus]

It’s always a battle with these kids. But it’s one you have to lean into even as they stand back and rate you with their eyes.

[timbarrus]

Why are you here. To take my HIV pills. Why are you here. To get high. Why are you here. To suffer. I am here to suffer. Ending: It has to be about hope, and Yes, But. You are here to endure.