Featured Profile:  Terry Frick

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.
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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 cautioned me with doing everything we could to prevent exchanging bodily fluids.  That included kissing, sharing spoons, separate bath soaps, toothpaste, mouthwash, we shared nothing that could possibly be contaminated.
     
After careful consideration, my next decision would 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 our 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.  We were lucky to find that 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 weeks 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.  It was perfect.  I feel at 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 State 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.

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