Home (not less) More

I suppose I should remember what kind of car it was … it was my home for a couple of months. The car belonged to a woman I met in a homeless shelter in Laguna Beach. Mary had been a display designer for a big department store in Southern California. She was working on a Christmas display when she fell two stories off a ladder. The store fought her disability claim for more than two years. Buried in mounds of red tape, Mary lost almost everything but her car and the few precious belongings she could fit in the trunk. Somehow she retained her sense of humor, sense of right and wrong, and an extraordinary amount of compassion for a woman in her circumstances. She was estranged from her family back in the Midwest, homeless, and in pain almost constantly, yet she went out of her way to help people in any way that she could. She helped me.

I was in my very early twenties and had ended up at the shelter after taking a wrong turn from the last house on the block. What is the opposite of proverbial? I made some wrong decisions for sure. I was twenty. It would have been unheard of for me not to. I’d moved to Southern California to live with my brother and his wife. That hadn’t worked out for long. I was crashing with various people when my brother and sister-in-law moved to Florida. I was determined not to reach out to my family back in Minnesota. They’d been bailing me out my whole life. This, I was going to do on my own. Sure I relied upon that old kindness of strangers bit. I crashed with friends for a while longer. I even had a sort-of-boyfriend for a blink-and-you-might-miss-it period of time. There was some fairly severe depression going on.

It was 1989 and I had been exposed to HIV. I was basically just waiting to test positive. My options were depression or obliviousness. I’ve never been terribly adept at the latter. Therefore the former and I became well-acquainted throughout my twenties. I did end up testing positive a couple of months after my twenty-second birthday, but that’s a different story entirely.

I had an agreement with a friend that I could crash with him indefinitely as long as I didn’t try to harm myself. That was, it turned out, a fool’s errand. I’d stayed there for less than a week when I overdosed on some prescription medication. It just being a huge cry for help, I called 9-1-1 before I lost consciousness. That was my only experience having my stomach pumped. To this day the sight of charcoal makes me queasy. The episode is what I referred to earlier as the “last house on the block.” I literally had nowhere else to go in California, nowhere anyway that didn’t involve some kind of exchange of sexual favors for a roof over my head. To the shelter I went!

I was there a couple of weeks before I broke some rule. Another lapse in memory precludes me from telling you what the rule was. I remember it seeming rather benign to me then. As a result, Mary and I took to her car: the year, make and model of which I couldn’t relay if my life depended on it. I’m actually not what you a call a car person, so that’s pretty in-character for me. There was a day or two (or ten) when Mary had to be elsewhere in her car, so I slept on the beach. Once a week, on Tuesdays, we’d rent a $20 hotel room right off the Pacific Coast Highway, so each of us could shower somewhere other than the YWCA and sleep in an actual bed. Anyone who knows me will not be at all surprised to learn the reason these very brief vacations from homelessness happened on Tuesdays.

That’s the night that Thirtysomething aired on ABC. For the few months all of this went on, I only missed one episode of the show. Mary watched Seinfeld. That came on right before Thirtysomething, usually while I was washing off a week’s worth of shame.

Many of those nights, Mary and I would sit on our single beds, facing each other, and talk. We talked about the Midwest mostly, her kids, my family, politics sometimes, my desire to write something other than poetry, her desire to be whole again. The facing each other part was novel at bedtime. The other nights we talked like a cab driver and her passenger.

There were food stamps back then. It was way before EBT. I panhandled a bit, but usually I was too shy to ask. I’d never do one of those signs. What if anyone actually knew I was in-need? A few times I shoplifted cigarettes from the Albertson’s in Laguna. I couldn’t even bum those properly. Every time I went back into the store when I had enough money and bought two packs of smokes and left one in the bagging area at the end of the checkout. I’d have to hightail it out of the store before the cashier realized I’d forgotten one of my purchases.

I think of those days quite often still. It’s been almost five years since I bought my condo. I became a homeowner pretty late in life. I was already in my forties when I decided to stop waiting around for a significant other to broach that one of life’s milestones with. Even with that, my dear friend Tonna worked tirelessly with me, for going on two years, to repair my credit enough to qualify for a first-time homeowner’s loan. I closed on the condo in what turned out to be twenty-one years to the month of when I stopped being homeless.

I ended up moving into a long-term shelter in June of 1989. From there, I found a roommate and a job managing a discount bookstore; and for a while stability and sanity seemed to coexist. That didn’t tend to last very long, ever, in my twenties. By March of 1990, I’d tested HIV positive and it was back to the crazy-races for me.

Now twenty-five years after that, my hold on sanity has been tight for some time, nearly two decades actually. Some may disagree with that personal assessment, but I promise none of those people “knew me when.” Barely a day goes by that I don’t look around my home and mouth the words thank you.

I was raised Catholic, but haven’t practiced any organized religion in years. Sometimes, though, I’m thanking God. Sometimes I’m thanking the Universe which I believe is a far more powerful force in my life. Sometimes I’m probably even mouthing the words to the dozens of people who have held me up in my life, from Mary, and before, all the way to Tonna who insisted I clean up my credit so that I could buy this condo. There have been so many beautiful friends before, during and after – far too many to count. My cup truly has run over in that department.   

It’s been amazing to have been able to help out a few people myself. Paying it forward should be as instinctive as breath if you ask me. As I sit here, life, at times, is still a struggle, nothing even in the same universe as what it was twenty-five and then some years ago. I don’t believe it’s designed to be easy. Where’s the fun in that? Still, I look around at the furniture that I own, the huge collection of movies and books, my two cats, both curled up sleeping. I look around and I am filled with gratitude. I can make anywhere home. There have been many, many places I have called that word. HOME. It really can be just a state of mind, a place you feel safe, if only for a moment. I stand at one end of this latest place I call “it,” or the other; and I remember Mary and the car with the burgundy fabric interior and I ponder.

It occurred to me that my parents created a home in which I lived for the first sixteen years of my life. That was home certainly. But it was not of my making. Sheer determination, and all evidence to the contrary, a strong will to live, better myself, and feather a nest lead me to create my very first home. That all was with a woman I lost contact with more than twenty years ago, in the backseat of a car I couldn’t point out in a line-up. That home was of my making. And so is this one. HOME – not less … MORE.

ALMOST HOME

I’m so excited to share a few things with you.  The first is that I have finished the first draft of my first novel.  A dear friend, in Australia, has just completed a beta read and the first basic edit, and I hope to have it to a professional editor by the second week of March.  My goal is to self-publish in May.  I want the release to coincide with another milestone, in my life, that I will tell you about in a moment. 

The novel, Almost Home is about Stephen Bennett, a thirty-two year old HIV positive man who has just lost his lover to the ravages of AIDS.  The couple have a fourteen year old son, Caden.  This all too common tragedy happens a mile above the Castro District, of San Francisco.  Convinced, as many were, in the 1990’s, that he would inevitably succumb to AIDS, Stephen must do something to ensure Caden is cared for.  Faced with his own mortality and confronted with a growing rift between himself and his teenage stepson, he decides to move them both, across the country, to Minnesota.  This is in an effort to reconnect with the family he’s been mostly estranged from, since he was just a half decade older than Caden.  Through relationships found or rediscovered, secrets are revealed.  Old resentments and new beginnings send Stephen and his extended family hurtling towards one shocking night, New Year’s Eve, 1993, when a heartbreaking act of violence threatens to shatter all of their worlds apart.

Anyone who knows me, knows that I have talked about writing, nearly, my entire life.  I started on a manual typewriter when I was twelve years old.  I didn’t know how to type, so I hunted and pecked away at the keys of that ancient machine.  To this day, I type with two fingers.  Teachers, in high school and college, attempted to break me of the habit, to absolutely to no avail.  For many years, I stopped with the typing altogether, handwriting poetry.  There were a couple of attempts at novels, but nothing like this.  I am so thrilled to have come this far. 

Now, about that second milestone, on March 8, 1989, I tested HIV positive.  In a couple of weeks, it will be twenty-five years.  The quarter of a century, now more than half of my life, that I have lived with HIV, has been challenging certainly, but mostly, it’s been rewarding.  I’ve been gifted with too many beautiful friendships to count.  I have been showered with support from family and friends.  Since 1990, I’ve participated in twenty AIDS Walks, in LA, San Francisco, Seattle, and now Minnesota.  This year, on Sunday, May 17^th, I challenge my friends and family to join me.  I’ve set a fundraising goal of $5000.  Personally, I hope to raise half of that.  Beyond that, if 20 friends each raise $100, we’re nearly all the way there. 

The novel is a reimagining of some parts of my journey.  I look back on the 1990’s, when I, too, felt there was no chance I’d survive the decade.  Almost constant battles with drug changes and the nagging side effects that accompany each change have certainly challenged me and those I love and work for, and with.  I’m very happy to be able to tell the story of a man and his extended family facing similar struggles, apart and, hopefully, together.  It seems apropos to combine the publication of my first novel, with the 25^th anniversary of my testing positive, and the AIDS Walk, immediately following that milestone.  The book is called Almost Home, so I’ve started a team for the Walk, by the same name.  You can register to walk at www.mnaidswalk.org  Choose to join a team and find Almost Home.  You can pledge me, personally, or the team, by going here: http://mnaidswalk.org/kev1229#.VNz8huk5CUk

It has been the biggest pleasure to take this journey with all of you.  Expect the launch of a personal website within the next month, where you can follow the progress of both projects.  Again, I hope to have the book, in at least Kindle and paperback form, available for purchase on Amazon, in May.

THANK YOU ALL SO MUCH! 

Not a Morning Person

A typical morning, for me, betrays the fairly intimate relationship I have with the snooze button on my iPhone.  I am not a morning person, not by any means.  I snooze a minimum of three times every work day.  Truthfully, though, I need to set my alarm for at least forty-five minutes before I have to get up, so the option is there for five times.  As soon as the alarm starts to go off, I am fair game for my two cats.  My roommate is up before me, although my alarm starts going off before his.  He typically feeds the cats, as he is the first human on their feet.  By fair game, I mean I become part jungle gym, part cat toy, part barrier.  The cats, Tim Riggins and Luna, are happy they’ve just eaten.  Post meal happiness usually brings with it a burst of energy.  Did I mention I am not a morning person?

Last Thursday, true to form, Tim Riggins decided he wanted to share my pillow with me, so wriggled in between my head and the wall, not very effectively, I might add.  I did have half of him on my head, but at least, he decided upon being cuddly, instead of playful.  Luna, meanwhile, not wanting to be left out, lay over my feet.  Every time the alarm went off and I moved to tap the snooze button on my phone, the two of them had to get up and move around, finally settling back to where they’d begun about four and a half minutes into my nine minute snooze.  Rinse and repeat.  It probably makes no sense, whatsoever, that I go through this over and over again every morning.  I should just set the alarm for the time I have to be up and cut out this snoozing business altogether, but where’s the fun in that?

I actually do get out of bed eventually.  After this happens, I have allotted roughly an hour to take my pills, eat breakfast, have a cigarette, brush my teeth, shower, shave (sometimes), moisturize (always), get dressed, do my hair, spray cologne, clean the litter box, and walk –or run—2 ½ blocks to the bus.  It’s a well-oiled machine, my morning routine, as long as I avoid my phone like the plague from the moment I turn the alarm off until the moment I put it in my pocket, five seconds before I head out the door.  I get easily distracted and it wouldn’t be unheard of for me to spend twenty minutes checking Twitter or playing Words with Friends, then discovering, my bus is leaving from the bus stop in five minutes and my hair’s a mess and, oh yeah, I’m not even dressed yet.

Last Thursday, I was up and on my feet by 5:55AM.  It was pay day and I needed to reload my bus pass and pay my electric bill.  I actually like paying bills.  It’s something about having a list --even of bills to pay-- and crossing things off of it.  Pay days, then, start off happy and then quickly devolve into thoughts of despair and dreams of winning the lottery.  I fixed myself a bowl of Sugar Corn Pops (No judgment and at least I eat it with Skim Milk!) and took it, a small glass of orange juice, and a large glass of water to the computer, but first I swallowed my first thing in the morning fistful of pills.  I scarfed down the small bowl of cereal while adding value to my bus pass and paying Xcel Energy.  Checked email quick.  Checked time.  No time to Paypal a couple of friends the money I owed them for group gifts.  I could do that later.  In fact, I had dallied at the computer too long for me to even have a cigarette.

Cereal bowl and juice glass in the dishwasher, litter box tended to, teeth brushed.  Oh crap!  There was a load of laundry in the dryer from the night before.  Clean towels.  Naked run to the dryer.  Thank goodness roommate is already gone.  Trip over a cat on way back to the bathroom.  Fuck!  6:25AM.  How does time go by faster in the morning than any other time of the day?  Have you ever wondered that? 

In twenty-five minutes, I managed to shower, wash my hair, shave, moisturize, get dressed, grab a can of soup for lunch and my coat and bag, and get out the door, down the stairs and out to the street and make it two blocks to the bus stop just in time to climb aboard.   If you’re a regular follower of this blog, you know that I have been HIV positive for almost twenty-five years and that I’ve had a couple of rough years where med changes and side effects are concerned.  Recently, I’ve missed some work due to throwing up.  With every new med change comes an adjustment period.  In fact, last Wednesday, I was up half the night “adjusting”.  I was relieved, THursday morning,  that seemed to have passed, at least for the time being. 

As the bus took off, however, I knew all was not well.  I was nauseated almost immediately.  For the next twenty minutes or so, the dread built, until finally, I got off the bus as quickly as possible, waited for the bus to leave (I take that same bus with many of those same people, five days a week!) and turned around to throw up on the side of the road.  Now, I laugh at most of what I face.  Let’s be clear, many people face worse and many people face the same, every day, living with HIV.  There is no better way to deal than to laugh at what you can, cry if you need to, and then get back up as quickly as possible and move forward.  It’s probably a great recipe for just about everything life throws at you. 

That said, I ask life, really?  Really?  Couldn’t I have puked prior to the snoozing, bill paying, cat box cleaning,  teeth brushing, showering, shaving, moisturizing, dressing, and running?  I mean really how rude!  I could have also really lived without the whole on the side of the road thing.  But I guess that’s just life’s little sense of humor.  I’m reminded of a meme I particularly loved from a few months back. 

"WHENEVER LIFE KNOCKS YOU DOWN, JUST CALMLY GET BACK UP, SMILE, AND SAY, ‘YOU HIT LIKE A LITTLE BITCH'."

Words to live by! 

Love, Lies & Social Media

We tend to toss the word love around on social media, so much so, at times, that maybe it’s lost its potency.  I rationalize my usage of it by telling myself that really I love everyone, so why not tell random people?  Still, it’s a bit odd, isn’t it?  I think one thing that contributes to this warm and fuzzy feeling is the amount of time I spend using social media every day.  I interact with the people I know there more than I do almost anyone else in my life.  Why wouldn’t I feel a closeness to them that can, at times, transcend whatever distance there is between us or whatever limitations actually having never met can add to a relationship?  Some of these connections become such that it all of a sudden feels odd if a day goes by without any communication.  Am I addicted?  Probably. 

Years ago, I met a group of men and women from all over the country on a message board on E! Online.  We bonded over our mutual TV addiction.  I have a number of what I consider harmless addictions.  I suppose I could be learning a foreign language or thoroughly cleaning my house or considering a solution to the current economic crisis, but I’d rather watch TV or Tweet.  Anyway, this group of nine women and three men became pretty close friends.  Eventually we took our communication off the message boards and began to email.  Some days there were a hundred emails.  Eventually some of us texted, messaged and began to speak on the phone.  We became friends on Facebook.  Our topics of conversation grew beyond television.  Almost nine years later, nearly all of us have met each other.  I have traveled to Los Angeles, Seattle, and New York City to stay with some of them and I have had visitors from Dallas, Austin, Los Angeles, other parts of California, Idaho and even Oregon come to visit me.  The friend from Idaho fell so in love with my friends in Minnesota that, after two visits, she decided to move here.  Stronger bonds have developed between some of us and our communications have broken off from the larger group.  We still also email as a group.  The experience of meeting these people online and then in person has been, for me, one of the most emotionally fulfilling and cherished of my life.   

It can and does happen and not everyone, in fact not many of the people you meet on the internet are as crazy as you’d maybe imagine.  Oh sure, some are certifiable.  Many are, let’s just say, enthusiastic.   I’ve rarely, though, had experiences with the mean folk who so often populate the social media verse.  Sure I’ve seen them, but I tend to steer clear.  I prefer my drama scripted, well written and acted, and confined to a TV or movie screen.  And I don’t tolerate bullying or cruelty.  It’s easy enough to just go elsewhere.  As I’ve said there are heaps of positive people.  They’re not hard to find and they outnumber the crazies and the meanies, a hundred to one, at least as far as I’ve seen.  A friend of mine recently called social media a buyer’s market.   That makes sense.  You can’t trust everyone online just like you can’t trust every single co-worker or every single person you meet in a bar or on the street.  Hell, I have people I’m connected to by blood that I trust less than a handful of the people I’ve come in contact with online.  I suppose you need to kick the tires, so to speak.

A few months ago I met a woman on Twitter and we quickly became close.  I trusted her enough to exchange phone numbers and we talked on the phone for what amounted to several hours over the course of a dozen or so calls.  I eventually came to read her tweets and absorb them in her voice.  That experience as a whole is one I highly recommend.  It’s pretty amazing to take in someone’s thoughts and hear their beautiful voice in your head as you read. 

The experience with this one person turned horrid.  It turned out she was not at all who she claimed to be.  I should have kicked those tires harder, apparently.  Her pictures were fake.  Her story was fake.  The woman was not the age she claimed to be.  She didn’t live where she said she did.   I was understandably stunned by the level of deceit.  Why?  What was the point?  I have no problem understanding the need for attention or even the desire to be someone else, but this woman took these things to whole new levels.  Immediately after being confronted by some of those she had deceived she took the stolen pictures down, at least from Twitter, and proceeded to reinvent herself on Facebook.  That alone sent me over the edge.  Those hours on the phone, promises made, secrets shared none of it appeared to have meant a thing.  So I was left to grieve the loss of a friend.  I have no culpability on her end.  I can only feel and mourn what was there on mine. 

I will not allow this person to ruin my experiences elsewhere or mar the camaraderie I’ve come to cherish on Twitter.  I think it’s important to step back every so often and check your surroundings.  Most of us have decent enough bullshit detectors.  WE just have to pay attention to them.  Because of some of the people I met on Twitter and their encouragement, I began writing this blog.  Because of the blog, I began writing a novel, fulfilling a lifelong dream.  It’s funny that I never started before or rather never continued after dozens of false starts.  The people on Twitter were so supportive and the time must have been right, in my life.  It has truly been and, I hope, continues to be a joy in my life.  I look forward to sharing much more of what I’ve been working on the past two months soon.  Even the woman who lied callously and repeatedly encouraged me.  I told her once that, one day, I’d likely write about her.  I try to keep my promises.  I never imagined though that this is how the story would go.                     

 

The Fullest I Can Manage

I was barely twenty-two years old when I tested HIV positive.  That was twenty-four years ago.  A few years back it occurred to me that I had been living with HIV for more than half my life.  This was never supposed to be.  I was never supposed to live this long.  In fact, several years ago, after the first time I’d been sick, I got better and fell into such a depression I wasn’t certain I’d ever dig myself out.  I had something called CMV or Cytomegalovirus.  Because at the time, my immune system was nonexistent and because I had at least one AIDS related infection, I was considered to have full blown AIDS.  It was 1994 and I was living in Seattle.  I was twenty-six years old and going blind.  Each day was like looking through a little bit smaller toilet paper tube.  Prior to that, I had not taken any of the HIV/AIDS related drugs I had seen completely obliterate the quality of life of so many friends.  I refused.  You may call it valiant, but really it was just cowardice.  I didn’t want to get that sick.  This new development, however, frightened me enough that I was against a wall and no longer had a choice.  There was an experimental treatment that’s first dose was to be administered intravenously, so off I went to the hospital, just a few weeks before Christmas, 1994.  After that, I had agreed to go on a regimen of medications.  I had been, at that time, HIV positive for almost six years.  I really believe that my gutless refusal to take any treatment prior to that is one of the reasons I’m alive today. 

                                                                                                                         

If you’ve recently seen the brilliant HBO movie the Normal Heart or maybe you were around then, you know that the first cases of a rare cancer in gay men were reported by the New York Times in the summer of 1981.  There weren’t terms like HIV or AIDS that early.  No one knew what the hell was happening, not even doctors.  For the next 10 – 15 years, testing positive for HIV was thought to be a death sentence.  That’s what I meant earlier when I said I was never supposed to live that long.  When I got better, in 1995, after starting treatment, I grew more and more depressed.  Now what?  I had spent the last half-decade preparing to die.  I certainly hadn’t done anything about living, no savings, no education, and no career.  I’d burnt bridges definitely.  What was the point of living any differently?  Well, I decided, I’d just go on another five years and surely die then. 

It wasn’t as cool to be gay in the 1980s and 1990s as it is now.  You never heard girls or women wish they had a gay best friend.  As far as I can remember, there were only two gay characters on TV at the time, Soap and Dynasty.  No one famous was out of the closet.  Even gay bars and clubs were in basements back then, or their windows were blackened out or boarded up.  No one wanted to accidentally happen by a club, look in the window, and see two men kissing.  Even in a large city, you’d never see two women or especially two men holding hands on the street.  Many gay people were terrified of the idea of coming out to their families.  The fear of being abandoned by the people you count on most was, let’s just say, different than it is now.  PLEASE don’t think that I am, by any means, diminishing the fears of young gay men and women today.  The decision to come out is just as harrowing and so many are still disowned by those they love the most.  It’s horrible to think that the people closest to us can abandon us, either emotionally or financially, for finally accepting something about ourselves we have absolutely no control over.  I am just trying to demonstrate that it was a different time;

the climate was far less friendly.  Some came out with not one person on their side.  Being HIV positive or having AIDS only added to the struggle, doubling the hysteria. 

It was March 8^, 1990, when I tested positive.  I’d already known at the time that I’d been exposed.  When the doctor told me, I felt more than a modicum of relief.    I have to say, it wasn’t as much having suspected it was coming, as much as it was relief in knowing it was the ultimate punishment.  What more could they do to me for being gay, what other penance could I be asked to pay?  I could finally stop running from the shame.    

I’ve told the story already that I was friends, at the time, with several other young gay men all of them within a year or two of my age.  Within two years, eight of us had tested HIV positive.  Less than ten years later, I was living back home in Minnesota when I got the news that the second to the last of the eight had died, leaving me the only one left alive.  Nearly unable to breathe under the weight of that news, I sat on the floor of my apartment in Minneapolis, chairs being too far from the ground.  Naturally I got drunk.  It was nine o’clock in the morning when I cracked my first beer determined to pour over photo albums and reminisce.  As the morning drew on, I began to rip pictures out of the albums, suffocated by the faces of so many dead people staring back at me.  It wasn’t only the seven people I alluded to who had died It was the 1990s and I was gay, having just lived in Southern California, then San Francisco and finally Seattle.  In the preceding decade I had known 73 people who had died of AIDS.  73! 

The guilt that you feel having survived takes on a life of its own, so many people far more talented, far more beautiful with far more to offer than I did, all gone.  How could I not feel guilty?  I suppose there are still moments of guilt, more than another decade later, mostly when I’m shirking my potential and just getting by.  I owe those amazing people much more than that.  I suppose a piece of it is the telling of, not just mine, by OUR story.  I lived through an amazing time in our history, sad certainly; sometimes so much so that you felt you might literally drown in it, but also incomprehensibly life affirming.  You can’t really imagine what it’s like to face your mortality in such a way and at such an age and then come out the other side.  At some point, it became clear that I had very little say in my own destiny or whatever you want to call it.  I had done nearly everything I could to die and, yet, I was still here.  There was drug addiction, two suicide attempts, and such an abhorrent level of self destruction, I’m embarrassed to admit, I woke up one day and realized I had wasted nearly my entire adult life, determined to die.  It was then that I decided, and it was a very definite decision, like flipping a switch, to try and figure out how to live.  It was as simple as that.

I have taken HIV meds, now, for almost twenty years, the side effects ranging from fatigue, depression, painful neuropathy in my feet and legs, weight gain, weight loss, skin irritation, nausea and vomiting.  In the beginning, some of those were constant, but with the advent of newer, better regimens, the side effects seem only to persist in the beginning.  Sometimes you are on the same regimen for so long that the virus develops an immunity and the drugs lose their efficacy.  Then it’s time to start new drugs and with those, a whole new set of side effects as your body struggles to get used to the new poisons you’re willingly taking in on a daily basis.  And then there are drugs you take to alleviate the side effects of drugs you take to alleviate the side effects of the HIV meds.  And so and so on.    

In 2002, I had lost my medical assistance, tied up in red tape over a job that offered health insurance, leaving me ineligible for assistance, yet disqualifying any preexisting conditions, and I went off HIV meds for the first time since 1994.  I was off meds for six months and, by October of 2002, I had pneumonia in both lungs, I had lost forty pounds, weighing around 110 pounds, and I had no immune system.  Once again, I was facing full blown AIDS.  I spent ten days in the hospital, the neuropathy in my legs aggravated by the harrowing weight loss; I was on morphine for pain.  Visitors had to wear masks and hospital gowns and slippers, not for their protection, but for mine.  Anything they might be carrying could be the final nail in my coffin.  Once again, though, from somewhere, I rallied.  Back on meds, surrounded by loved ones, I began to gain weight and get better.  By New Year’s 2003, it was barely evident I’d even been sick, let alone having, again, almost died. 

I went on a new kind of regimen then, something called a protease inhibitor, in conjunction with other anti retrovirals.  A protease inhibitor was a new class of drug in the early 2000s that prevented viral replication.  For nine years, I did great, the virus essentially held at bay by one drug cocktail, but then, about two and a half years ago, that cocktail stopped working.  For the last two years, I underwent five med changes, some complete, others just tweaking one or two meds, or playing with dosages to diminish or eliminate side effects all together.  In some cases, the regimen never started to work.  In others, it worked, but not for long.  Each time a med change was ordered, there were side effects, mostly vomiting, so much so for nearly an entire year, that I damaged my esophagus.  I took steroids to repair some of the damage, but there will likely be some permanent damage, as well.  For the record, I seem to be back on a regimen that is working.  Surprisingly, we’ve decided to restart the original drug cocktail I began in 2002.  The hope was that, the virus had spent so much time in the previous two years fighting off new drugs that it’s immunity to the old, more effective ones had been forgotten.  So far, so good.  I’m doing better than expected and my test results have been amazing.

Many people have questions, I know.  Most people have no idea you can have full blown AIDS and then go back to being just HIV positive.  I should say now that I am not a doctor, nor am I medical professional of any kind, so I can not speak on any of this, except as someone who has lived with it for nearly a  quarter of a century.  I wanted to put it all in writing because so many people now are living this life I am, miraculously, brilliantly alive years, decades past what they expected.  It’s a challenge certainly.  You don’t wish to walk into a gay bar with a sign around your neck proclaiming your status.  I believe most people are less afraid of being exposed to the virus than they are of actually becoming involved with someone who will die.  Obviously that is changing, but not as fast as you might think.  I made a decision, several years ago, not to tell a potential boyfriend until it was clear we were going to have sex.  I guess the theory was that he’d be so taken with me by then; it wouldn’t be so easy to walk away.  We had gone out for a little less than a month and the expectation was that we would spend the night together after dinner and a few drinks with friends.  During dinner, I told him.  His reaction was

amazing.  He took my hands across the table and assured me nothing had changed.  After dinner, as I had said, we were meeting friends for drinks.  It had started to pour by the time we reached the bar, so this kind man dropped me at the door and went to find a parking spot.  I went in to meet our friends feeling on cloud nine.  The guy never came back that night.  I saw him once after and he acted like he owed me money he couldn’t pay back.  There have been other instances sure.  For a long time, I just stopped dating. 

At times, you have this feeling that no one can ever really understand.  Literally, all of the people in my life that could have, have died.  I suppose had this fact become unbearable, I could have found a support group.  In 2003, though, in a dark movie theater, next to my best friend Melissa, I sat dumbfounded as a movie presented the most brilliant metaphor, to me, for living with HIV,  in the most unexpected place, Lord of the Rings: Return of the King.  “Come, Mr. Frodo!' Sam cried. 'I can't carry it [the ring] for you, but I can carry you.”   All at once, the tears came.  It was an emotional moment anyway, but I didn’t cry for Sam or Frodo or anyone in Middle Earth.  I cried because I had ever held anyone at arm’s length because they couldn’t actually understand everything I had been through or was going through then.  For most of my life, I have been surrounded by wonderful, flawed, yet amazing people.  I have rarely lacked support and for that I am so grateful.  So many people, unable to carry the disease, have carried me instead.  Over and over again, I have feared I would be left alone, only to have someone pop up when and where you least expect them to. 

Many people find my attitude about all of this commendable.  I believe the sentiment most often bandied about is what a positive attitude I have after all I’ve been through.  Of course I don’t walk through life whining about my lot in it.  I’ve never understood the point in that, though sure, so many people do approach their life as if it’s a chore they can’t wait to complete and cross of their to do list.  I have been given a gift, really we all have.  Anyone who thinks I have a positive attitude, though, should be beside me on the morning’s when I grumble out of bed, almost disgusted at the prospect of another day, or when I swallow another handful of pills I know will make me sick, without an ounce of gratitude, or a single thought of any one of those 73 people I knew who had died.  I am often grateful there isn’t a loud speaker attached to my brain broadcasting my thoughts.  I’m grateful, too, that I manage, most days, to find some joy in the mundane, that I choose to surround myself with people who also choose to laugh at life’s endless barrage of inside jokes.  Getting up every day and putting one foot in front of the other, attempting to better yourself and trying to be kind to other people no matter what, isn’t, in my opinion, about having a positive attitude.  It’s about making a decision to live.  It is so much easier to be happy in life than to be miserable.  Look around.  I can almost guarantee you that you’ve crossed paths, recently, with someone who chose the other option.  I am never as good as I hope to be.  Being truly good, I think, is a thing rarer and rarer, but I hope that I have touched as many as have touched me.  If that is the case than I’m glad I’m still here.  I hope to honor those who have died of this, with which I live.  I hope, too, that I’ve shed just a little bit of light on what it is like to live with HIV, so much having been said about what it is like to die of AIDS. 

A Hand to Hold

To you I give my hand to hold
My trust to take
You give to me the security
Of the seat next to you
Words I can believe
Precious love.
To you I give a frightened heart
The self I am unsure of
A nervous laugh.
You give to me a shoulder to hold me up
A smile to change my sight
Permission to exist as I am
And precious love.

Some Poetry from a Hundred Years Ago

BROKEN & BLOODY

How you stole your way into my life
is a mystery, even to me.
I'd lost track of the barricades
I'd constructed over the years, shielding a heart still breaking
from a love and a half ago.
You leaned against nothing but the sky
as it reached the rest of what there was.
Laid back, you slid through life
like a blade on ice.
Something about you
a sculpted face
designed at the hands of infinity,
ravaged with character.
Was it magic or a game
one without rules.
Whatever it was, it is no longer.
For my heart lies nearby
broken and bloody
Too long under your knife.
Yet something about you lingers
probably always will.
You took it all back, Indian giver.
Yet nothing ventured, not a thing gained.
I just caught my breath
Though you've been gone
Forever.

Untitled

Stolen innocence is what I cannot get back.
It was taken from me, taken.
What can I do now, but listen
to the demons that live inside my head
and purge my heart of hatred.
But first wish him dead, because
his death might set me free. 

MY LOVE

Your smile, the one I feel in love with in another life
it betrays you, for in its lines and creases is proof
proof someone else occupies your thoughts
proof someone else is held in your glance
In your arms and in your smile, the one I fell in love with
in another life.
my love, where are you when we make love
Whose face do you see instead of mine
Whose name do you say in the solitude inside your head
Just now, I have noticed you hiding
behind your smile
the one I fell in love with in another life
the one I forgot, last night
the last time you held me.


 THE MIDDLE OF ME (prayer for a voice)

Fly away!  Get away from what stifles you, whatever is holding you back. Be wary of those who tell you who or what you are, or especially who or what you should be.  Take charge of your dreams and what images you see.  Take charge of your life.  My hopes for you, the child, the muse within, have only the ends of the interminable earth, the heights of a dreamy, cloudless blue sky as limits.So go!  Be you, whoever that is.  Know that happy endings exist, sometimes only for effect. Know that life is seldom fair. Know that sometimes, most times, it is difficult, but know that most things are possible, most times. Know that people are mean, and just as many are kind and openhearted.  And know that it is dreams, the process of imagination that life is about.  And the sky, the earth, the crashing waves of the ocean.

Take risks, my child.  Please don't let my fear stop you!  The fear I feel was forced upon me by poor judgement, misconceptions and lies.So I feel stuck.  Not you.  I'm counting on you to do the work.  You go push the limits, fall down again and again, but get back up for when you are on your feet, you can move forward.  Sitting in one place, it is so easy to just look back.  Take big huge steps.  Go and don't be afraid, although it is alright if you are.

I am stuck, but I am setting you free.  I'll try and follow.  Know that you are so loved.  Know that you are mine, yet I belong to you, as well.  You live inside of me, a breath.  A muse.  Inspiration.  I call you the Middle of Me for you are.  So go!  Write.  Speak. Do whatever it is and say whatever it is your voice tells you, for your voice can do and say in equal measure.  Go now.  I'll protect you.