Chapter Fifteen

I had the pleasure of meeting some of the most colorful and varied people who were all linked by just one golden thread:  They all knew Jeb from one of his four phases in life.  He was similar in so many ways, the same person just evolved.  But in other ways he was distinctly four different characters.  With each section there was a molting, a letting go, a ‘starting fresh’ (if you will).  He was complex, but at his core there was a systematic simplicity.  Eventually I got it, I can be slow sometimes.  Yes, it took a mass of people from various corners of the earth, but I finally saw him, the other part of my friend I didn’t know.  I knew who Scot Free was.

I don’t know how to explain that epiphany, but it was a very cool moment when I got it.  Through everyone I met I was able to put little wooden blocks down in a row, one as a teenager, one as a sailor, one as an Austinite as I knew him… and upon placing a beam atop of blocks I could create a trajectory that perfectly defined Scot and who he was as an artist, an entertainer, and as a man.  Before, I would get so annoyed when people at the bar would introduce me as “Scot’s friend,” giving a side glare of “No, I’m Jeb’s friend.”  That soon dissipated as person after person would come up with random stories about he at the lake or something funny he did as a practical joke.  Scot’s impact on the Oil Can Harry’s was tremendous.  They no longer played “Go West” by the Pet Shop boys where people at the bar in on the joke, eventually the entire bar, would throw the bar’s napkins in the air during the chorus.  All the bar’s napkins.  There were certain songs that faded from the playlist, certain songs people refused to sing at karaoke.  The DJs had stories, the bartenders had stories, people visiting from out of town had stories… it was overwhelming.

Make no mistake, he had an impact on the city of Austin as a whole as well.  Girls would tell me he was spinning the night of whoever’s birthday party (he played their favorite song twice!)  He mentored another DJ who ended up taking the world by storm.  Everyone seemed compelled, in some ways obligated, to tell me stories simply because I went on this journey, this odyssey next to him for just a few months.  No one asked if I could emotionally handle it or if I even cared (I will frankly admit there were a few times when I didn’t) – some didn’t even ask me my name.  They just needed a person to talk to, and I was next best thing.  I was yanked from the shadow of celebrity to celebrity substitute and I was not comfortable with that level of attention.  But with each person I did exactly what Jeb would have done and talked to them like they were the only person in the world that mattered at that moment.  You know what?  They were.  Unlike those thrusting needless sympathy on you people in appreciation can be so awesome sometimes, they can revive your love in humanity, give you smiles for the most random reasons, and make feel glad to be alive, living.  I trekked about listening people talk about him, watching their eyes light up, pulling joy from the deepest pain set in their stomach.  It was amazing, energizing.  Once I freed myself of the hangups of his accomplishments… it was healing.  The world’s void of Scot Free was grander and reached farther than my void of Jeb Mobley.  How much of a void?  For the next two years I was hearing stories about him when I went out.  That is an impression I dare anyone reading this to match.

I would encourage everyone to go and take a free HIV test at their local clinic.  I mean everyone.  It takes 15 minutes to get the answer.  Whether you are gay or straight, male or female, married or single, it is a nerve-racking lesson in humiliation.  After Jeb passed away I had a friend bounce to my front door to take me to a free HIV testing site at the STD clinic not even a mile from my apartment.  As you read, I hadn’t had sex in well over two years but I went anyway and still sat in the uncomfortable metal chair with nervous quiver talking awkwardly about sex and sexual habits while waiting the 15 minutes for the results.  I called it a “pregnancy test” because they extract blood and put it on a tester and wait for a little line to show up or not.  Two people in the room who have never met before sit around for 15 minutes talking about the gross intimacies of your sex life while waiting around to see if you have HIV.  It’s extremely uncomfortable.

If it’s negative, you find yourself laughing… and you don’t know why.  Part of it is relief from the tension and part of it is that there is a complete stranger who now knows you’re a freak in bed (but negative, so not that much of a freak… hahaha…).  You just want to get the hell out of there and pray you never cross paths with that volunteer in a grocery store for fear they may silently judge you on your incidental purchases (Olive oil?  Really?  I know what you’re gonna use that for…).  I know I’m not the only one who thinks this.  And if I am, well now all of you are going to think it once you go get tested.  You’re welcome.

If even the slightest line appears, the person working the test would slyly apply blood to a second test with 15 more minutes of talking about sex (you freak).  Like other diseases there is a brief counseling session if the second test displays a line as well.  The blood work is then sent off to the state and and a week later a confirmation meeting were there is a paper with your name and address listed, and the specifics of your blood work is laid out in a diagnosis.  And there it is in black and white.  It’s the reality of dying in words you don’t recognize and numbers that hold no meaning.  Millions of pieces of your life come flying at you at 360 degrees straight from the horizon and hits you all at the same time.  Granted, the day he found out, Jeb bought a bottle of champagne, chilled it, and popped it when Brian got home from work, so everyone reacts differently.  But upon hearing that you are positive so much happens to your brain, absolutely nothing happens to your body.

HIV isn’t a “dying” disease anymore.  People with HIV live as long and in some cases longer than the average human on the planet.  “AIDS babies” (infants born to mothers who are HIV+) are almost a non-existent occurrence.  In the sheer physics of procedures, there is less to do in maintenance than if you had diabetes.  It’s pretty much on the level of hypertension in many ways, but with a $1,800.00 to $2,200.00 a month price tag (yeah, don’t fool yourself – there’s money being made by The Man) it’s easy to see why there is such a need for HIV/AIDS medication funding.  If you are on health insurance, you probably have a pharmaceutical co-pay, and if it’s by percentage, it’s going to hit hard.  In Texas, getting assistance with HIV medication is laborious and tediously unnecessary.  Point is it’s easy to maintain a life with HIV physically speaking, but mentally going through the process is dehumanizing and can do far more damage than what the virus can do… far more damage then what Jeb went through.

HIV doesn’t change who you are, but it does seem to change everybody else.  Even your inner circle starts treating you different once they find out your new POZ status.  You read my reaction.  Fortunately I react a lot differently today.  Every recent person hearing of Jeb’s HIV status went to the worst place possible in their minds because they were all working backward from death to life.  That’s fucked up but it’s how it is because (in general) there isn’t a lot of honesty or opening up about the disease.  A person shouldn’t be made to feel bad for a disease they already feel bad about.  And if they don’t feel bad about it, they still have to feel bad on behalf of everyone else on the planet.  Nobody should be made to feel ashamed for something we’ve all done – have sex without a condom.  Sometimes it results in pregnancy, sometimes it’s HIV.  But it happens.

The space between when a person finds out they’re positive and when they decided to do something about it is wrought with maniacal psychological dementia.  There has to be balancing out, a ‘coming to grips’ with the situation.  It’s a necessary evil and it manifests itself in many ways.  Sometimes there is an act out.  Sometimes there is a lot of anger.  Usually it is depression that gets people.  This lasts anywhere from a few months to a few years.  This is all very normal.  This is where a schism happens.  There is still a surprisingly large number of people (not just gay men) who die of HIV/AIDS every year here in the United States.  Why?  The point of origin of this schism is not sitting in the uncomfortable metal chair in a room with a stranger talking about sex toys and lubricant.  In that little room, you can replace “HIV” with any other potentially fatal disease.  The disease isn’t the issue.  It’s overcoming the sociology of the disease.  As HIV is a socially contracted disease and it harbors the largest social response, as opposed to cancer which is not socially contracted.  People look at at cancer with impunity, thus no quiet judging.  HIV is different, people know exactly what you did or they think they know, and the more you talk, the more they add to their own fabricated picture.  The social stigma of HIV is far, far worse than the actual disease itself.

In one direction, some people are willing to go through the humiliation of going to one place in Austin, Texas to get all things HIV/AIDS – a small brown brick box of shame and self-imposed guilt standing in judgement of your life choices… directly off the highway.  It’s not exactly subtle, especially if you have a individualized vehicle.  You are going to be seen… you are going to be talked about… your business will be all over town despite the confidentiality agreement everyone has to sign stating you won’t talk about anyone you may see in the building.  Your information is in the “system,” and shared around different organizations.  All HIV/AIDS organizations (and there are many) want to lend a hand, help out, pay for stuff, throwing assistance at you especially as your health declines, but they all require your personal information:  doctor’s visits, list of medications, mental health reports, etc., etc. and even more etc.  This means more workers, more volunteers, more buildings to go to and be seen at, more of you being passed around in manila folders with tabs, phone calls, emails with PDF documentation, appointment follow-ups, and cheery people with big smiles who are all HIV negative.  For anyone who wants to live ‘off the grid,’ this not an option.  For anyone with a little pride, it is a lot to absorb.  For anyone meek and shy, it can be devastating.  There is so many pieces of you floating out there no longer in your control. And month after month you have to show up to the same brown brick building and perform a walk of shame to the random collection of people in the waiting room to get drugs that will keep you alive and prevent the virus from spreading to others… but only for 30 days at a time.  For the rest of your life.

(This is not typical everywhere.  HIV/AIDS services are inconsistent from state to state, and county to county within a state.  Some states have programs where medication can go through your local pharmacy or delivered to your home.)

Naturally, the other direction people go is more evasive maneuvering, avoidance.  Over half the people tested in the free clinic never show up to collect their confirmation paperwork the next week after initial testing.  It is guessed that the average positive person can go around ten years or so ignoring the disease if the virus stays quiet.  If it starts acting up, under 3 years at most.  This changes with how you treat yourself.  People like us treat our bodies pretty rough, we really want to get as much out of it as we can (“Quality of life – ya’ know?” Clink!).  We’re not the type of people to buy a hot rod and never go over the speed limit.  Of course, risk deduction is part of our DNA.  If you don’t feel ill, then there’s nothing to address – you’d be working on the engine of the hot rod for no reason.  Per our nature to overcomplicate things, the importance of checking up on that engine every once in a while fades into the background.  Plus, avoidance is somewhat thrust upon you because if you tell people, that’s all they want to talk about… and when they’re not talking about it, they seem like they’re talking about it.  It’s like having a huge zit on your face and as people talk to you, you can ‘feel’ their eyes looking at the bulbous heinousness with disgust and fear.  They could be talking to you straight in the eye and you will still ‘see’ them looking at your greasy unhygienic filth in fear it may burst at any moment.  That’s what it feels like all the time.  Finding out you’re positive isn’t the worst day of your life, but it does seem to be the worst day of everybody else’s life.

With this blood-stained albatross hung around the neck comes moral dilemmas, who do you tell verses who not tell, there comes justifications, new boundaries, personal reasonings, and individualized rules you set for yourself.  The more people you tell the more concern is shoveled into the fire.  But mostly it’s facing the mortality.  Not death… mortality.  People like myself, Jeb, many others are already very comfortable with death.  We are ready to die at any moment, just give us a cause from the heart and a stiff drink.  HIV isn’t going to enhance or diminish that.  What’s bothersome is being subjected to the dying process.  Mortality is frightening, even to the point of avoidance.  There is an appreciation for the quality of life, enjoying it, smelling each day as if it were your last… one day the air will smell of stale smoke and diminished hope, but today it smells good… so enjoy it.  You string a bunch of good days together and you find yourself with an incredibly interesting life.

It makes sense (I hope) why people want to, and do, run away from this disease – sometimes for a little bit, sometimes for years.  There’s just too much volume to contend with.  You want to go 24 hours without thinking about it.  You want to remember days before the disease, days filled with open honesty where there wasn’t this plexiglass salad buffet shield between you and your friends, you and your family, you and life.  You don’t want to make large decisions right away (to medicate or not to medicate).  If you’re someone who sincerely enjoyed drugs but successfully kept dependency at arm’s length, you then have to break habit and rewire the brain to accept the fact you will now be on (or “addicted” to) one drug for the rest of your life.  How do you handle that commitment?  You want to learn from the strong who have been living with this for years.  You want to learn how ‘other people handle this shit.’   But you don’t want to talk about it.  I know… it’s paradox.  You want to do research although every single professional will tell you:  NEVER Google “HIV/AIDS.”  NEVER.  There is just way too much out there and it’s in no particular order.

I have seen many of my gay brothers held up, by themselves, alone, emotionally distant, and physically deteriorating for no reason other than a treatable virus had put more burden on them from the outside the body than from inside the bloodstream.  That shouldn’t happen.  Not all of them have a James to pop up and make them forget all their woes, dance an Irish jig (it happened), and tuck them into bed.  Each one of these loners I’ve met I just want to hug and never let go because who knows when they are going to be hugged again.  Human contact, physical contact, it’s so necessary in life and once you get the big red “+” sign, it feels everyone in society starts their conversations from ten feet away.  That distance, whether real or perceived, is torture to someone who spent the best years of his life entertaining the masses while being a rather personable conversationalist privately.

Being socially aware will get you everything you’ve ever wanted in life and Jeb paid attention to the world with a keen eye.  Part of being a good DJ is paying attention to crowd dynamics and Jeb was a master at it.  And, as mentioned before, it’s really hard to ask someone to change their life to something healthy and regimented when their job is to entertain the wild public who are engaging in the least healthiest part of their week.  Socially, the crowd in the HIV+ world is very different then the crowd in the negative world.  We are starting to merge, but we still have a way to go.  There are so many little separation ticks that keep the – and the + apart.

On the internet, men portray “negative” as if it’s a badge of honor.  HIV takes about 6 weeks to show up (“detection”).  At the time you get tested, it’s not revealing your status at that moment, it’s revealing your status from 6 weeks ago.  And unless you’ve been celibate 6 weeks before taking the HIV test, and refrained from sex since taking the test, the “Negative” so proudly displayed means nothing… especially on the internet where one is trying to find “dates.”  It’s infuriating how we sometimes perpetuate our own paranoid division but all of us find ourselves doing this at times.  Crowd dynamics are simply our individual dynamics multiplied.

So much more has to be done to make this disease not mentally damaging and damning to those who have it, and less appalling to those who don’t.  People living with HIV are increasing in a good way, they are staying alive.  Deaths from AIDS took half as many people last year as it did in 2005 (1.4-1.9 million last year).  The majority of HIV contraction and AIDS related deaths are from the continent of Africa where homosexuality is often hated, attacked, and criminalized, therefore HIV/AIDS is not a gay disease.  Outside our community women of color are contracting this disease at an alarming rate.  Slightly alter the pronouns of this chapter and everything is equally applicable to them.  If you’re itching to Google “HIV/AIDS,” then add the word “volunteer” before hitting the search button.  Wherever we are men and women need our help and we can be more involved.  But it all starts with awkward indignity of sitting in an uncomfortable metal chair across from a stranger talking about your private parts like they’re not in the room.

Jeb wasn’t big on words (obviously this is where we differ).  He may not have said “thank you” a lot, but he certainly knew how to show “thank you.”  Stacy, this is my thank you to your family for creating, molding, and sharing this incredible man with me, with us, with the world.  Please tell your boys what a kick-ass uncle they had in Jeb, in cleaner language, presumably.  Regardless of the tales, stories, assumptions, or whatever, this is the only point that needs to be made:  he made more of an impact on this planet in 34 years then most of us will do in a lifetime.  He may have changed the world one set of eyes at a time, but there was nothing on this planet he loved more than playing with those boys.  Nothing.

Jeb, this is also my ‘thank you’ to you as well.  Thank you for entrusting me with this story.  I wish I would have been able to hang out with Scot a bit more, although in all likelihood the city of Austin is probably grateful that we didn’t.  Thank you for being you, thank you for giving me me, and thank you for your warped enabling of everything I did.  I hope I was able to return the favor appropriately.

(And for the rest of you, when you finish weeping, go get your ass tested.)

James P. Perez © 2014

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