Features

The Truth About the 7000

Why are there still so many AIDS-related deaths?

Mark S King

A friend of mine, Antron-Reshaud Olukayode, died of an AIDS-related illness a few months ago. He was an Atlanta-based writer and HIV advocate. The news was quite a shock for me because an empowered person living with HIV isn’t supposed to die at age 33. Or so I believed.

During Antron’s last hospital stay, his friend Nina Martinez brought him food and comfort. “Antron was having trouble getting on his feet. Something was hurting,” she tells me during a conversation in which she doubted her choice to be open about the details, to tell the truth of it. “And then Antron pulled down his sock and showed me a black lesion on the bottom of his foot.”

Nina immediately recognized the spot as Kaposi’s sarcoma, known as KS, an often deadly AIDS-defining cancer. You can regularly see it on the faces and bodies of people with AIDS in old photos and documentaries. People think it doesn’t happen anymore. They’re wrong.

Nina herself is HIV positive. She contracted the virus through a blood transfusion when she was a few weeks old. She knows all too well the cunning ways that HIV can damage a body. Because people on effective treatment don’t just end up with late-stage complications, she realized that Antron had not been taking his medications, probably for a long time. Looking at Antron’s foot, Nina asked him whether the spot was KS.

“Antron looked at me and said yes,” Nina recalls, with the exhaustion of fresh grief in her voice, “and then there was this release, like a pressure cooker, and he started to cry. Antron was afraid of being judged. I wasn’t going to judge him, but he knew his community would.”

Antron had been a visible HIV advocate and volunteer, even appearing in a national media campaign by the Centers for Disease Control and Prevention as someone living with HIV. But somewhere along his journey, things changed. He seemed depressed. Medications stopped. Very few of his friends understood what was happening, much less what to do about it. Antron was an AIDS death hiding in plain sight.

A few days after his conversation with Nina, Antron lost his ability to speak. His family took him home to die in the town he had once escaped. His obituary did not mention AIDS.

"I  wasn’t going to judge him.                         
               But he knew his community would."  

Antron became one of the nearly 7,000 HIV-positive people who die of causes directly attributable to the virus every year in the United States. It’s a stunning number to reconcile in this day and age, and its effects multiply many times over when you include the grieving families and confused friends and frustrated clinicians. Each one of those 7,000 people represents a life that wasn’t supposed to end, at least not to incredulous onlookers who don’t understand how or why anyone with HIV could die anymore.

It’s a fair question, the why of it. Why would anyone never get an HIV test, ignore symptoms, stop their medications or hide their illness? Who exactly are these 7,000 people? What the hell happened?


In search of answers, I talked to workers on the front lines, in clinics and hospitals and community agencies. I talked to patients and activists and people in waiting rooms. Most of them were eager to share what they have seen. Very few wanted to be identified. The truth can be uncomfortable.
What I discovered is that when you ask why, there are so many, so terribly many, answers to the question.


In the first decades of AIDS, testing HIV positive meant joining a community in which you were embraced by an enormous support network. We had no choice but to be open about our HIV status because our very lives were at stake. Long-term survivors and community elders passed along shared history and survival skills.


Not anymore. People who test positive for the virus today often face the health care labyrinth alone. Some prefer it that way because they have a good doctor and pharmacy benefits and their status is none of your business. They are entitled, yes, indeed, to their privacy and to their limited interaction with what passes for an HIV community these days by showing up once a year for a walkathon that has stripped AIDS from its name and replaced the disfigured gay men in wheelchairs with baby strollers and French bulldogs and chicken on a stick.


There is meager social support within the Black community for people living with HIV, Kairo believes. Many young Black men are trying to deal with their own feelings of brokenness, with their search for a crowd that will welcome them, even if for some it means never returning for treatment after testing positive because the price of transparency in their circle of friends is much too high. As in every other community, women are often left to fend almost entirely for themselves.

Welcome to the public face of HIV in 2018. It is a parade, and it is warranted because there is so much to celebrate, after all. The parade has billboards at busy intersections and posts on Instagram. It has the pretty faces of empowered HIV-negative people taking pre-exposure prophylaxis, or PrEP, and people living with HIV taking pride in their undetectable viral load.
There are T-shirts and ball caps and posters. There are online memes and funny web videos and signs you hold up when you smile for the camera and blogs with names like—God, help me—My Fabulous Disease.


It is a parade we have all helped to create. It is a privileged affair, with few people talking about the homelessness and poverty and drug addiction that percolate upward from the forlorn and the forgotten. Meanwhile, HIV stigma keeps spreading over the spectacle like a rolling fog.


The 7,000 people who will die this year can’t hear the happy jamboree from the lonely confines of their apartment or hospital bed or shelter or prison cell. If they could, they might think we have all lost our f**king minds.

Campaigns that seek to normalize people living with HIV are missing an important truth, according to long-term survivor and activist Matt Ebert. “U=U feels like a lie,” he tells me, referring to the award-winning “Undetectable Equals Untransmittable” campaign heralding the fact that people with an undetectable viral load cannot transmit HIV. Matt believes the science of it, but the word standing in the middle of the catchphrase makes him cringe.
“I am not equal to someone who is negative,” Matt contends, “not in the way I am treated and not in the way I feel. These campaigns try to promote our sameness, but testing HIV positive is the same shot to the heart it has always been.”

“If I got HIV today, I would be devastated,” Matt explains. “It’s a very big deal. HIV affects every decision I make. People say I should be grateful to be alive. Well, it doesn’t work that way. No wonder people stop taking their meds.”
“And,” Matt adds pointedly, he feels this way despite being “white and privileged.”


Activist Kairo Brown, who founded the organization Meet for a Cause to help impoverished LGBTQ youth in Baltimore, doesn’t have time for endless discussions of privilege or racism, as bad as it may be, because he is consumed by the daily struggle for survival among those he serves. “I hear us blame white people,” Kairo says, “but what about what we as Black people are doing to other Black people? We must unite as a community.”

Community workers across the spectrum told me about impoverished clients who fill out clinic surveys in exchange for financial incentives, checking any box at all, signing anything handed to them, because they need a free bus pass a lot more than they care about the data making sense. They know people who allow themselves to become sick, treating HIV symptoms with an Advil from the gas station, because they believe illness will get them more services.


Case managers told me about clients who tested positive and then scoured the internet, searching for another answer that might explain things away, falling victim to fake potions and frauds, because a bullshit answer is better than the one that says HIV.


HIV providers talk of clients who store their medications under bushes because the shelter doesn’t have lockers. They watch the treatment regimens of their patients start and stop at roughly the same rate as their monthly hospitalizations, when drugs are dripped from IV bags in a mad scramble to repair the damage. They draw blood from people addicted to opioids using the arm that hasn’t been amputated because of an infected abscess.


And all the people living with HIV in the margins of our society, advocates and sex workers and mothers and addicts and case managers alike, know they are one disconnected cell phone, one bout of depression, one missed bus, one part-time paycheck away from total devastation.


There are even revelers in the grand parade who are privately troubled, who grit their teeth when they smile, who haven’t admitted that it has been months since they took their meds because the co-pay got too expensive or the fatigue of it all has become too much to bear, who have chosen to delay treatment until things get bad or until they find a cheaper apartment or until some unseen solution comes along. It might. It might not.

*  *  *


These AIDS-related complications are real, and they exist in a world far away from happy Facebook status updates. Traveling the distance between them might as well be crossing the galaxy.


And yet, mercifully, even in the midst of all these challenges, success stories and moments of grace exist.


Brent Bible took an HIV test when he was 17 years old as a requirement to enter a teen drug rehab program. “They called me and said to come back in and bring my mom,” Brent tells me. “When they said I was positive, my mom broke down. But I was like, Everything is OK. I’m not going to cry about it.”
Sometimes, youthful resilience is nothing of the kind. The next day, Brent tried to kill himself.

“It didn’t work,” Brent says. “So, I just said, F**k it, I’ll party.” He escaped his troubles—the absent dad and the addicted mother and the challenges of being a gay Black man—by defiantly choosing hard drugs over HIV medications. He remembers that time with tears in his eyes. “It was hard, for so many years,” Brent tells me. He’s 29 years old now, but some things still haunt him.


Brent eventually pulled himself from the brink, but getting HIV care required a stability he hadn’t yet achieved. “I didn’t have a place to stay,” he tells me, “and I needed proof of where I lived, proof of this and proof of that. And I wasn’t working and didn’t have transportation. Some places were no help at all.” Today, Brent makes his doctor appointments and takes his meds, and his viral load is undetectable. He knows he is lucky. He knows people who were broken by the pressure of life with HIV.


“Being around them, they seemed happy,” Brent recalls, remembering several friends in their 20s who are now lost to AIDS, “but behind closed doors, they might just be done with it all. You just don’t know. You never really know.”

We have a collective responsibility to Brent, to help him rise above the stigma, to continue his treatment in the months and years ahead, to ask him uncomfortable questions when he says he is just fine, to teach him survival skills and to assure him that everyone living with HIV doesn’t always feel as happy as they look on the posters.


Because the statistic that 7,000 people will die simply waits, year after year, to be satisfied. Because depression and fatigue can undermine the will to live. Because people deserve the truth about life with HIV and the support to face it. Because we don’t want to be shocked all over again and left wondering why.


Because you never really know. 


Mark S. King was diagnosed with HIV in 1985. His blog, My Fabulous Disease, has been nominated for a 2018 GLAAD Media Award.

Reprinted from POZ Magazine.
The Life and Times of HIV
Janet Iwasa, a professor at the University of Utah, has helped to create a website where people
can learn about HIV. As part of the project, the Science of HIV website has released this
​fascinating video that gives a great overview of the process and how it interacts with the body’s immune system.  The video is just over 6 minutes long and I (the webguy) highly recommend viewing.  The website the Science of HIV features several artistic views of HIV in it's evolution
and disruption.  There is a facinating animation on why it is so difficult to cure HIV or complications in AIDS.


This is courtesy of Medgadget.com and Professor Janet Iwasa.

The Life Cycle of HIV
Local Profile
It’s early morning and I’m waiting for yesterday’s coffee to heat up.  Sitting in front of the remains of last night’s fire is somehow comforting and I just don’t want to leave.  But now I've got farm animals to feed and sleep is too much a luxury for the country life.  So I plod along and feed the animals so I can get back in my favorite chair in front of my nice warm fire with a warm cup of coffee. 

Of course, I’m happier now.  Life with my boyfriend, now my husband, of 41 years and all the animals on a remote NC farm wasn’t bad at all.  The horses were the remains of his gay rodeo days before hip surgery.  The Koi fish from our backyard pond in Manhattan emigrated with us to the country and still give us joy.  The various dogs and cats we have are a staple on a farm.  So, despite living on SSI and a small pension from my NY City job, we are comfortable and happy.

I remember when I found out I was HIV+.   The Early ‘80s started with some great music, Donna Summer was wailing about ‘Hot Love’, the cha-cha palaces were thumping with loud disco music, filled to overflowing with hot, sweaty, dancing bodies.  There was also this thing going around like the flu, but a good bit more serious.  People were dying from something that was being called the “gay plague.”   Within a year, I had several friends who had suddenly died from it, and several others who were sick and struggling to stay alive. 


Terry Frick           Photo: GR Farley
Yes, it now had a name.  And there was a medicine, even if it was a little toxic.  It was a confusing time.  Whether it was complications, such as pneumonia or lesions (Kaposi sarcoma), it was a horrible way to get sick and die.  And this “gay plague”?  Where did it come from, how do you catch it and how do you fight it?  It would be some time before we would all know the answers to these questions.   It was then that I thought I’d better look into testing that was new and being made available thru the NY Blood Center.  They had started a program in the West Village testing men and women from the community, gay or otherwise, who were sexually active, whether just occasionally or simply promiscuous.  I went with some friends and we all had blood draws and waited the week or so for results.  I couldn’t meet up with them to go down, so I decided to go by myself.  I really hadn’t thought about the results or how I would feel about finding out.  That is, not until I walked into that waiting room and saw other guys sitting around.  Some were sitting around in shock, some sobbing with a friend and some just sitting, waiting.

After a bit, my number was called.  Initially, the Blood Center chose to use a numbering system to encourage more people to come in--no names.  I walked into a small, private office and sat down opposite a male attendant in a lab coat who was trying to be clinical and unaffected.  He said he would give me the result and answer any questions that I might have.  He said the counselor was out to lunch and would be right back if I needed someone to talk to.   He opened a book and confirmed my sample number.  “The result is positive for HIV,” he said.  He handed me paper with the results from the Lab.

Silence.  More silence.
  
Bravely, without emotion I said, “I figured it might be.”  And I never knew why I said it.  It was not rehearsed and I really hadn’t allowed myself to think that much about it.  If I had this "HIV", I already had the phone number of a doctor who had a clientele of gay men and may be able to help me.  So I thanked the tech, got up and walked out of the office.  The sun was bright and warm on my face that late summer day in 1984.  I mechanically walked to the bus stop and waited for the next ride to mid-town where I lived.  I don’t remember much of the ride.  I don’t remember getting off the bus at 47th street and walking the short block to the building where I lived.  What I do remember is walking into the apartment, sitting down and looking at the paper again.  My boyfriend of 6 years walked in and asked what was wrong.  I showed him the paper.  It was then that I started to cry.  It seemed like a long time that we sat, holding each other, sobbing.  What to do next?  My boyfriend would have to go get tested right away.. What to plan? How to plan?  Who to call?  What was my future . . . our future?  

Thankfully, my boyfriend tested negative for the HIV and we worked to keep it that way.  My Dr. Ron Grossman cautioned me with doing everything we could to prevent exchanging bodily fluids.  That included kissing, sharing spoons, separate bath soaps, toothbrushes, mouthwash, we shared nothing that could possibly be contaminated.
     
After careful consideration, my next decision would seem to be the refrain for the rest of my life.

I decided then that the only course of action was to plan for the worst.  Not knowing what would happen, or how fast it would happen, or what resources I would need to live, I decided to plan my young life into 5 year increments.  If I made it thru the first 5, then I would plan for the next 5.  What about savings?  How do I pay bills and pay for meds?  What savings I had wouldn’t last long unless I found steady work.  And my health had to remain good.  I would really had to work at that. 
  
So with stoic determination, I implemented my First 5 Year Plan.  I would save enough to get me through, and otherwise, live my life like nothing had happened.  I joined a discussion group of confused HIV positive men at the Gay and Lesbian Community Center to try to find out what was fact and what was rumor.  Returned to my doctor and had a sit-down with him. He ran some detailed tests and said I was positive but very healthy.  He explained what they had learned about this insidious disease, that it could re-infect an HIV+ person from multiple exposures and change the physical makeup of existing HIV cells.  This would create a new strain of HIV that antibodies would have to recognize, regroup and start fighting all over again.  That would mean current meds may no longer be effective against the new strain and, still, in the late '80's, there were limited meds to fall back on.  And I wasn't even on meds yet!  The damn disease was evolving??
  
But I was healthy.  According to Dr. Ron, if I could maintain my health with exercise, proper sleep, good food and no recreational drugs, there was a chance that I could continue to fight this disease with good health practices.  So, that’s not so bad.  I’ll start running, join the health club and go regularly. So, my one goal was to stay healthy and find a job that that paid well and had medical.  And staying away from recreational drugs was no problem; I never trusted them, even pot.

I’d always enjoyed cooking and we frequently had people over for dinner.   We lived in a typical railroad building (long apartments, front to back, two per floor, side-by-side, four floors) in our “railroad flats,” the joke being that it appeared as though we were living inside a railroad car.  We also had a very small greenspace behind our building that we used as a patio with the perfunctory grill.  There were many joyous evenings there with good food, good drinks and great company.  Our little spot became the go-to place for great home cooking, as long as we could afford to share it.  It was an escape from the sadness that hung in the air like a fog.  All of us were affected in some way, either being HIV+ or knowing someone who was.  Conversation was always lively.

My living wage up to this point in NYC was from repairing or painting for anyone who called.  I'd produced a homemade business card with "Painting and Light Carpentry," the latter being how big and could I get it there.  I had a tablesaw in the building basement and could make end tables, door frames, book cases - things like that.  I had several dinner friends who would pass my card or phone # around during cocktail conversation which produced a considerable amount of work.  Most of it came from frustrated clients whose contractors had never quite finished a job.  I would come along and finish trim, spot paint, straighten a cabinet door, or repair/replace a door lock.  I grew up in a contractor family so I knew how to fix almost anything. 

One of my first steady jobs came from a new friend who came to dinner with an old friend.  He turned out to be the butler for a fine Park Avenue couple.  It seems the lady of the house had just fired their personal chef and Michael was expected to prepare light meals.  This didn't thrill him at all so he agreed to try to help her find someone for the moment to prepare meals for the couple.  So, enter Terry, into this 26 room duplex apartment to be interviewed and check out the culinary digs.  The kitchen was 500 square feet of pure heaven to a southern cook, with everything imaginable in a professional restaurant kitchen.   “What time,” I asked “would you like breakfast to be served?”

I met with Madam the next day for lunch and pleasantly agreed to two weeks or until she could find someone more “professional.”  Two weeks turned into a month, then two months.  At six months along, Michael turned to me “I think you got the job!”  Of course this type of work was not something I was looking for but it was good money and I was happy.  And a happy chef is going to be a healthy chef! 

So after dinners, dinner parties, executive luncheons, I stayed with the couple for more than two years.  I was happy and they were happy.  Then, circumstances changed and I got offered a job with NYC government.  With a new job, good salary and major medical, who could turn it down?!!
  
The Second Five Year Plan: 

I began the new job with the NYC Housing Preservation as an energy conservation inspector.  I was in my early thirties, healthy and did not need to share my secret with anyone.  Just work, keep my head down and live my life.  It was still difficult to hide the pain of hearing that friends were, one by one, coming down with this scourge of a disease.  The late eighties weren’t showing much hope with understanding the disease, how to fight it and how not to get it.  It seemed having sex with the wrong person was the overriding cause.  So, my discordant boyfriend (HIV-) and I settled into a more intense relationship and lived our lives quietly.  Quietly, that is, until Cha-Cha nights at the local Discos where the daily stress just washed away with the pulsating ‘Raining Men’.  Such a funny metaphor. 

The Eighties began to fade away without any good news.  New and often toxic meds were released here and there, but there was never any good news.  Too many of my friends were taking these drugs and were still wasting away.  One of my boyfriend’s very best friends was a talented Broadway singer and lived nearby.   Knowing that he enjoyed the very best of my culinary artistry, I would prepare some of my best and his favorite foods and take them over.  He would eat some of everything and then excuse himself to the the bathroom where he would vomit everything he’d just eaten.   He later told me that the enjoyment of the meal going down far surpassed the eventual loss of it coming back up.
  
The Nineties eased in with little fanfare and no miracle drugs.  Friends were still becoming sick and dying what seemed like way too often.  People started moving out of the city to get away from the epidemic, as if this were something you could run away from.  Seemed like the gay meccas- San Francesco, NYC, Atlanta, LA and Houston-were getting the worst of the damage.  Now, we hear that HIV was popping up in Middle America and far too few seasoned doctors to deal with the disease. 

With me still in relative good health, my Dr. Ron asked if I would do some clinical trials on potential new drugs to which I quickly agreed.  After all, my T-cells were considered high and effective, and my viral load (HIV cells) were low.  With both hovering around a thousand, it was a bit confusing but Dr. Ron said I was in great health.  So, I started with a six month study of weekly injections of an HIV infected, albeit benign, mouse gene.  Yes, mouse gene.  I did a couple of double blind studies, supervised by Dr. Ron, with no idea whether I was taking the placebo or a real new drug.  One summer I signed up for a special study which explored the exclusivew use of vitamins to strengthen the immune system.  Although my body did not reflect any changes in my immune system, tests on some of the other volunteers showed considerable improvement. 

I also did several studies with Hoffman LaRoch, the big pharmacutical in New Jersey, to determine how long a single dose of a particular new medication  would stay in the body before being passed out in urine.  The downside of these studies was that the only way to determine how much medicine was in the blood was to draw blood.  Draws began after taking the medication: 15 min, 30 min, 1 hour, 2 hours, 4 hours, etc up to 24 hours.  There was a total of 20 draws in 24 hours.  In addition to the blood draws, they also collected every bit of my urine for those 24 hours in their research facility.  It seemed extreme but it was very necessary and part of the trial.  Then two weeks later, I would come back into LaRoch for another trial of the same medication in a different dose with blood draws over a 24 hour period.  Then two weeks later, I would come back to LaRoch for another trial of a DIFFERENT medication with the same 20 draws in 24 hours.  There were code names like DDC, DDI, D4T and 3TC, some did in fact become part of the list of new drug regimen. 

This testing was all very important to me.  My friends were getting sick and dying.  I was not.  And my Dr. Ron didn’t know why.  If there was something going on in my body that prevented me from getting sick, he wanted to know.  I wanted to know.  So the trips to other medical facilities for poking and blood draws continued.  I was still working with NYC government housing program, but moving into the IT division and learning how to write computer programs to analyze construction productivity.  A brave new world was dawning on the fight against HIV related complications.  There was a huge new Quilt project being constructed.  Encouraging things were really beginning to happen.  And then we lost Rock Hudson to HIV related complications in Paris.  So very sad.

The Third Five Year Plan:

It was the mid-nineties and suddenly there was a breakthrough.  Several new families of drugs were breaking out and the term “drug cocktail” was on everyone’s lips.   The goal was now to boost T-cells and lower viral loads by combining several drugs to fight the virus in different ways.  It was truly exciting news.  I was already 12 years with HIV when Dr. Ron said it was finally time for me to get in the mix with my very own cocktail.  It was good because my T-cells were dropping slightly and viral load was increasing slightly.  And the clinical trials, while a good thing, left some problems in their wake.  It seems some of the high doses of drugs given by LaRoch caused tingling in my hands and feet that never seemed to go away.  Neuropathy was small price to pay for the good it ended up providing.  And besides, they had a good drug for that!!

My partner, now 20 years, had decided to quit his bartending job and run away to be a rodeo cowboy, or so he joked.  He got his horse stabled out in New Jersey and went out every weekend to train and compete.  He actually did very well in local and state competitions.  I joined him occasionally and we had a great time on the gay rodeo circuit.
 
My job with city government was going well.  I now had a staff and more responsibility.  I joined our agency runner’s club and competed in several Chase Corporate Challenges in Central Park.  I found a group in our agency experimenting with line-dancing and enjoyed after work practice sessions and nights out to compete with other groups.  And as if I couldn’t cram enough activities into my life, I took my photography skills to new directions.  At first, it was just a few of us as a group doing field trips, taking our own equipment and learning how to analyze a scene and take a better, if not for a more technical, photograph.  Suddenly we found ourselves a club with about 18 members. 

It was becoming evident that we had some real talent in our group with terrific photography that needed to be seen.  ​With permission from the Housing Agency’s Commissioner, we received several areas to install multiple, permanent  exhibition spaces in our 9 story office building.  We featured photography from some of our field trips and the occasional single person exhibition, complete with an after work reception.

Then the horror of September 11 happened.  A small plot of land right up the street from our work building became the devastation of this generation.  I had been meeting with IT representatives from other city agencies frequently in the World Trade Center because it was a central location to many of our government offices.  The morning of September 11 was one of our meeting days and I was running late.  That I was late likely saved my life. 

Witnessing the devastation of the buildings and so many lives lost, I became withdrawn.  Sleep was a struggle without medication; getting up daily to prepare for work often seemed impossible.   The WTC site continued to burn and smoke for 6 months.  The daily dose of fumes from the smoltering mix of building materials and humanity burned in my throat and in my head every day I went to work.   It was a constant reminder that a senseless tragedy occurred killing nearly 3,000 souls and, but by the grace of God, I was spared, never knowing why.      

​I found it difficult to leave the apartment, for anything.  My physical health suffered and the neuropathy in my feet became worse.  I finally sought out counseling and was reassigned to analysis projects where I just ran reports.  I received permission to tele-compute, so that allowed me to remain at home and turn in reports back to my department.  But all this time I continued to take my meds and come into the doctor’s office for bloodwork.  The strange conundrum was that, here at the lowest point in my depression, my viral load was the lowest and my T-cell counts were the highest.  It was a strange irony that I was living, with my mental health at the most difficult point in my adult life and my physical health with a viral load and T-cells at the optimum. 

I was approaching two decades with HIV and had managed to stave off complications.  I was seeing a physical therapist regularly for the stress knotted up in my neck and shoulders for what seemed like every two weeks.  I was also investing in my mental health by seeing a psychiatrist and unloading the horrid dreams of a re-occurrance of September 11.  Despite my good bloodwork, I was beginning to feel like a broken-down old man at fifty. 

 The Fourth Five Year Plan:
  
I occasionally joined Chuck on his rodeo weekends to get out of the city and breathe some different air.  Despite my love for the city, I really enjoyed getting back to country living, the smell of woods and animals and campfires. 

In the summer of 2004, we had just arrived in Harrington, Delaware at a regional barrel racing competition.  We dropped the horses off at the fairgrounds and checked in to the hotel with our dogs in tow.  It was getting late and Chuck had to be up early to exercise the horses and be in attendance for the first wave of competition.  I was wide awake and took the dogs for a walk for a last pee of the evening.  Got back to the room, crawled into bed and started watching an old movie on TV to wind down.

I don’t really remember much of the movie.  I’d lay in bed watching, not moving for two hours and it suddenly felt like my face was asleep.  Weird.  Got up, went to the mirror at the lavatory and looked at myself.   Nothing appeared out of the ordinary but then, there it was.  I was not blinking in my left eye. 
Thinking I was witnessing a stroke coming on, I woke up the cowboy and we decided to get to the local emergency room quickly with dogs in tow.  It was one AM when we arrived and were ushered right in.  The doctor on call wasn’t sure what was going on, but after an hour of observation, was relatively sure it wasn’t a stroke.  The fact that I had HIV was curious to him and posited some type of aberration with the disease.  I wasn’t sure and reluctantly suggested he call my Dr. Ron at home, waking him up at three AM.  Both doctors decided I should stay until six to see if it all got any worse and go from there.

Six AM came and went and nothing worse happened. The ER doctor explained that I needed to keep my left eye taped shut and sent me on my way.   I seemed to be in a fog while I worked as Chuck’s horse handler.  We fed, watered and saddled them up for competition.  The day seemed to be no different except I had my eye taped shut  (to keep it from drying out).  Things remained in limbo throughout the event and the trip home.   I set out for the doctor’s office as soon as I could for bloodwork and Dr Ron’s opinion of what was going on.

Bell’s Palsy, a paralysis that usually affects one side of the face, was not uncommon, but to connecting  it to complications to HIV was a stretch.  Nothing in my bloodwork was particularly noteworthy, so Dr. Ron said to try and go about my regular day.  He gave me some gel tears for my eye and tape to keep it closed.  We parted as he said he would keep looking into the cause for the palsy.  Six months went by before I found out I had Lyme Disease.  Somewhere, sometime I had been bitten by a deer tick.  It was my physical therapist who tested the nerve endings tracting to my face and found two inches missing.  This was the result of a Lyme disease infection.  I would have to live and manage life with the paralysis with the best of my ability.

The Fifth Five Year Plan

It was apparent that we had to be thinking about a place in the country.  I had taken an early retirement from the city, the monthly room and board for the horses amounted to a sizable house payment and we needed to get the search moving. 

We started in NJ where we found expensive farms and farmhouses, rules about the smell of horse manure and nothing that was worth the expense of a “country place.” Moving south into Delaware, Maryland, and Virginia we found much of the same.  Some beautifully finished farms and some fixer uppers.  We were trying to cut down on the commute back to the city, but searches wouldn’t pan out to anything that jumped out.
I really didn’t want to think about a 10 hour commute to North Carolina from New York, but we had to give it a shot. 

We found eastern NC more rural and more reasonable.  There was an equestrian center in Martin County that was very active yearlong. There was also a small technical college that featured a two year pre-med degree toward veterinary medicine in equine health. It wasn’t more than several months that we ran upon a small farm with stables and grass pastures just north of Greenville.  It was everything we needed for horses and a rambling little farm house with a stone floor and cast iron stove.  I am home.

The first thing I had to do was to find a good doctor who understood HIV and Greenville seemed to be the place.  With a great university that had a growing medical school, I looked for someone who understood HIV with the same degree of intelligence backed by science as my Dr. Ron.  I found all that at the ECU Infectious Disease and Travel Clinic.  I found a great doctor, became a patient and joined their monthly doctor/patient/advocate discussion group.  I am home
 
Suddenly, things were beginning to fall into place.   I was thirty-four years into an HIV diagnosis without complications or opportunistic infections.   I found a group of doctors, clients and advocates where I could join in sharing life experiences with HIV.  I found people who were not afraid to speak openly about their frustration with all things HIV, including the stigma of living a life.  This was a group, facilitated by a wonderfully empowered woman, who is sensitive to the needs of the community.   I am home

My Sixth and Final Five Year Plan

With all these years of good health and a reasonably healthy body at the age of seventy, I feel like I’ve found my calling.  I knew there had to be a reason I was spared the suffering and humiliation of wasting away with uncontrollable bowels.  It is payback time and I couldn’t be more thrilled. 
I’ve become an advocate and peer counselor and contributed to discussion in our group with my years of life experience.  I’ve become involved in our Health Department District and developed a voice to represent our eleven county community.  I understand that there are many who feel that they have no voice or didn’t know they needed one.  By working these many years in information technology, I’m able to write, edit and produce a website for our group.  With the contributions of stories from our group members, I am able to put forward our truth, our legacy and our experience with disease, stigma, and bigotry.  I am proud to be a voice for those we cannot reach.

I am so lucky to have found this organization of caring people.   I can’t imagine languishing alone in the countryside without knowing, without learning, without fighting for my needs, my rights and my health.  I'm sixty-nine years old and I don't think I need the Five Year Plans any longer.  I just need to live my life.

Do I sound like a advocate.  You bet, my friend!  I am home.