I had just graduated High School in 2013 when I knew I had met the love of my life. He was everything I could have ever asked for. I’ve always had a crash on this man since I first saw him when I was in the 8th grade and he was a senior, but I knew I’d never have a chance. I was wrong, the summer of 2013 I saw him in the mall and introduced myself and we exchanged numbers, from then on things only got better. I got tested on September of 2013 after my 19th birthday, everything came back negative, so I asked the guy I was with, did he know his status, he said yes, and that he was negative, and I believed him… then a few months later, he says he loves me… I believed that too, eventually we stopped using condoms, but it was fine because we were both negative, or so I was told. By March we were broken up, do to many different things, and in April I decided to get tested, just because. My results came back, and the Dr. Walked in and said, “I’m sorry, but you have HIV,” I felt so alone and lost. I’m only 19, I didn’t know what to do or think, mind you, I’m 3 hours away from home at school… so I got in my car and went home, on the way, I called my ex and told him. Come to find out, he hadn’t been tested in over 4 years, and yes he found out he had it too. I finally made it home, just to look my mother in the face to tell her I have HIV, the look on her face broke my heart, and I just fell to the ground weeping… I’m doing better now, God has given me the strength to carry on… and I hope to one day become an advocate for those with HIV… and to help those going through it as I did.
My name is Prizila Vidal and I am a LGBTQIA, Foster Care, and HIV/AIDS Activist and Advocate. I am a former foster youth and because of that I am a passionate advocate for foster youth and young adults in transition between the ages of 18-24. My work involves linking young adults to resources that include housing, education, and employment. I love to support youth who are seeking to define their sexuality and are in the process of coming out. I would like to share with you the highlights of my journey that inspired me to passionately do this work.
I was a foster child/youth from the ages of 12-18, and as such I lived in approximately 12 group homes. At the age of 12 I was raped and I became infected with HIV. Prior to this diagnosis I did not understand methods of transmission of this disease and how I could keep myself safe. My journey with HIV brought me to the Mother, Child and Adolescent Program (MCAP) at UCSD. There I learned about HIV/AIDS and how to take care of myself. Most of all I learned there is life after my diagnosis. At the age of 24, I aged out of MCAP.
At the library, I am part of the “Check Out a Living Book” series, and will be telling my story to audiences around the county. If that wasn’t enough, my story was the inspiration for playwright Olivia Espinosa’s “Diva Piece Theatre,” a project to highlight the stories of foster youth presented at Diversionary Theatre in 2012.
Prizila is defined by her experiences, but chooses what that definition will be. Finding her place as a role model, mentor and advocate has been a 27 and 11 Months- journey that will continue. I have received my Associate of Arts (AA) degree and am working toward a degree in Social Work so I can seek more opportunities to change lives.
I will also be starting a Talk Show called, Let your True Colors Shine with Prizila Vidal. The intention is to promote wellness, determination and quality of life will outreach to the diverse community that is the LGBTQ community. This community has an underlying intersection of race, ethnicity, culture and spirituality on top of sexual orientation and gender identity. The issues are complex and multi-dimensional. We plan on integrating our knowledge along with the collaborative knowledge of the community.
In addition, we will be including stigma reduction and Trauma-Informed Initiatives as this is especially impactful in the lives of LGBTQ youth and young adults. We will also include determination and strength based approaches such as Mental Health First Aid which emphasizes resiliency and self-care in youth in order to prevent mental problems. We will intentionally stay away from the disease focused approaches and take a holistic approach to wellness.
In my words, “Follow your dreams and don’t let anyone stop you. I have no regrets and I am happily living my truth.”
Many know my struggles. Many know about MY HIV. Many know the positive life I try to live. Many know my journeys. Many know my bad days. Many know my good times. Many share my experience. Many know my dreams. Many know my goals. Many know I’m no man to live in secrecy! It is December 30th 2011… I’ve had many ups and downs with my HIV experience. Including my T-cells. They say under 200, is considered AIDS. Since there is room for so many ‘opportunistic’ infections… In 2005, I had double pneumonia PCP, with only 14 T-cells. Many say ‘I almost died’. I say I didn’t for a reason. Well now that my T-cells are at 145, which they decreased drastically within just a few months, however, I’ve always been quite determined and motivated. However, I will share this with you – I’M TIRED. I can see it in my eyes. I don’t know where the future is taking me, but I know I’m tired. I know it’s okay to be tired. I’m sharing this because I’ve shared my experience, and I’m not stopping, until I stop breathing. This doesn’t mean I’m giving in to anything – It means I’m speaking my truth, as I always do. This is , my face of AIDS. I will continue to share my pictures and experience along this journey of mine. 1 day at a time.
UPDATE: It’s almost my 37th birthday (may 29th) and I’m still doing my twice weekly eye injections, as it’s been months… I’M still trying to stay above ground and maintain my health, my sanity, and LIVE life as any human should – It’s a long ROAD, and I can walk a million miles ♥
UPDATE: June 4th, 2012. It’s going on 1/2 a year of dealing with this ‘eye virus’ retinal necrosis, and the journey seems endless… I’m thankful for strength and light during this journey. Since the virus is not healing the way it should by now, I am most likely having surgery next Tuesday to try and clear out the virus behind the retina as much as possible. I try to have no fear, I believe in GOD, and I don’t live a world of ‘what-ifs’ ♥ So I KNOW, all shall go well! To be continued :)
UPDATE: June 8th, 2012. My first surgery. I finally was approved for a ganciclovir implant. The implant is supposed to be a slow release of the medication (ganciclovir) over the next couple years. This will hopefully allow me to stop the twice weekly injections, even though I’ve grown used to them ♥ LOL… Now healing from the eye surgery, and hopefully as well, the implant will help kill the virus in my eye :)
UPDATE: June 15th, 2012. Had a laser treatment to try and move the implant in my eye in a better area of my eye, but didn’t work. Also had an injection just after – and HOPEFULLY, Monday should be the last of the injections! Finally! ♥ After that, it’s all about healing and resting and getting better and in the long run – Getting my vision back! I’m hoping and praying – this is coming on the end of this ‘seem to be endless’ eye virus treatment!
UPDATE: June 18th, 2012. Had my last eye injection! I thought the day would never come! But with patience, hope and trust in GOD to heal, the day has arrived ♥ Hopefully, it stays that way and the implant does the job! This eye treatment has been a journey! :)
UPDATE: June 25, 2012. Surgery again on Friday… They are going to try and get rid of extra scar tissue in the eye, laser around the retina to hopefully help keep it from detaching, and pull out any excess fluids.
UPDATE: July 3, 2012. 4th day of healing after second surgery in my right eye. Slowly healing and can’t see anything from my right eye, but I can see a little bit of bright light! Some is better than none! :) Hopefully the pain is behind me , and nothing but healing from here!
UPDATE: JULY 5, 2012. Tcells now at 325. Higher than they’ve been in over 3 years! So blessed and excited of the news. Vial load undetectable! WooHoo! Definitely my Tcells know they have a fight ahead of them with this retinal necrosis in my eye, but thankfully they put their hard hats on and went to work! ♥ :) I was surprised they would be so high, after dealing with so much pain and infection in my eye this past year!
UPDATE: JULY 14, 2012. Very excited to say that I can actually see bright light, bright colors and movement from my right eye! Especially with being told I would most likely never see anything from my right eye ever again. GOD blesses me daily and miracles continue to happen ♥
UPDATE: JULY 27, 2012. My doctor was pleased and shocked that I’m still able to see anything at all from my right eye. Even though, It isn’t clear in the least, and seems to be just a small opening of ‘vision’ , something is better than nothing! So thankful, I shall continue to heal and keep on moving forward in this journey.
UPDATE: SEPT 11, 2012. As my eye continues the healing process from months of crazyness, and as I’m not able to ‘see’ from my right eye – I try my best to still find the LIGHT that guides me daily. Everything is a work in progress ♥
UPDATE: SEPT 24, 2012. Proud to say that my eye looks good ( at least according to the retina specialist ♥ ) I know it still seems ‘red’ and irritated at times, but behind the scenes is what really matters… and so far so good – even though it’s not likely to get ‘better’, it’s good that praise GOD, it shouldn’t get worse… The storm is behind ME!
UPDATE: January 7, 2013. A year later, I feel amazing. I’ve adjusted to living with vision in one eye. I can still smile and feel at ease, despite the obstacles. I look back at the pictures of all the eye injections, eye surgeries, and say wow. . that looks like some crazy shit! It was! I’m thankful its part of the past :)
Now , the next obstacle begins as I start the 10 day treatment on Friday in Phoenix to kill the syphilis in my brain after a spinal tap test was given to me my last day in Phoenix December 28th. It was very unexpected, as I haven’t been ‘overly-sexual’ or ‘slutty’ as that comes to mind when the word ‘syphilis’ is brought up… I don’t remember having symptoms, as the majority of 2011 was spent with a towel over my head because of the eye infection, retinal necrosis. Now, come to find out, my previous Doctor never ran tests on me, which should be a norm for HIV positive individuals. My eye infection/loss of vision, may have been preventable. However, the flip side is – IF I didn’t go thru the pain and misery I went thru, I would have not shared the story of my experience that I’ve shared over the past couple years. In doing so, I’ve helped and inspired others with HIV, to see light through the darkness, as I did – literally…
UPDATE: May 1, 2013. It’s been a long time since the heartache of the shit I went through last year with my eye virus. Even though I live now with vision in one eye, I’ve become used to it even though I dislike it. Of course, I wish I had vision in my right eye, but I’m thankful for my left! I wish I didn’t see so much in 2-D now, but I see much more! I have moments of being pissed off because I really wish I could have my vision back, and I do believe in miracles – so you never know! I’m continuously blessed in this journey of LIFE… I know this happened, because it was part of my story. Live and Learn!! ♥
UPDATE: June 14, 2013. I feel great! My T-cell count as of most current blood-work 2 weeks ago is 391. That is the highest my T-cells have been in the past 10 years of dealing/living with HIV. In 2003, when I found out I was HIV Positive, my T-cells were at 304.
In 2005, after letting my HIV go untreated, I had 14 T-cells.
Once the immune system is severely damaged as mine was, it’s not always easy to ‘get back up… but somehow, I did! My viral load is now undetectable and has been for the past few years, which means the actual particles of HIV, is below 40. Definitely thankful for medication, definitely thankful for GOD, definitely thankful for LIFE! ♥
Even with no vision in my right eye, I’ve adjusted to how it is. Who knows what the future holds, but I do know – I have the power to make things a ‘POSITIVE’ experience, no matter how negative or unfortunate it may seem.
UPDATE: November 2, 2013. Seems so long ago, and it was. Oh how I wish I didn’t have to deal with my ‘eye’ issue… Oh how I wish I could see from my right eye, but as my Doctor said last year, I would most likely never see again from the right eye… Unless there is a miracle… (I do believe in miracles by the way!)
Anyway, I do get irritated that my eyes are so sensitive now to bright light, eve though I can’t see from the right eye, its super sensitive to light… It takes a few hours for me to ‘adjust’ every day after waking up… the left eye still over compensates, as the right eye is still in ‘dilation’ mode… as it will be or years, according to doctors… after such an intense year of surgeries and injections, the eye will take a long time to heal!
As always, I have a ‘however’ in my words!! Even though I can’t see from my right eye, I can see from my left! It sucks, but at least I still have my eyeS !!! I’m thankfully thankful… I’m extremely blessed. LIFE goes on, my story is my memory. Even if I can’t see clearly with 2 eyes, I can see clearer than before… at least in my mind.
Last week my Sister and I went to get tattoos on Fremont St at Rockstar Tattoo, while on vacation in Las Vegas. Mind you this is my third tattoo since I was diagnosed HIV Positive. Anyways, as always I like to make the tattoo artist aware of my status because, well, I know not many people do and I want them to be aware that anyone who walks in that door could very well be HIV Positive and simply not tell them. Plus, I just wouldn’t feel right not disclosing my status to someone who is going to be exposed to my blood so intimately. Well this time was a little different from my previous two experiences…
The tattoo artist had me fill out a short health questionnaire and one of the questions was “Are you HIV Positive?” Of course I answered the question honestly and handed him the form after I had completed it. He then asked me if I was nervous and I replied yes and informed him that I was Positive and asked if that was going to be a problem? His response literally broke my heart. He shouted across the shop to another tattoo artist, “Hey, whats our policy on tattooing people with HIV? And what’s the set up for that?” Well this shocked me and quite frankly embarrassed the hell out of me! Tears just started streaming down my cheeks, you see I cry when I get angry, sometimes I wish I didn’t because it prohibits me from saying the things I would really like to say. I looked over at my sister to see if she was hearing this and yes, yes she was. I guess I wanted her to march over there and kick his ass for me but I think she was just as shocked as I was. She asked him if he was joking because I mean he had to be joking right? Um no, he was not joking, not at all. He then proceeded to tell me that he was not comfortable tattooing someone who is HIV Positive. This comment was like salt on the wound and only made the tears come faster! Eventually I was able to compose myself enough to ask him if he really thought I was the first HIV Positive person to walk into this shop and get a tattoo? His response left me speechless, he said YES I was the first person. All I could think is how stupid could you be? I’m just the first person to tell you! You flipping idiot!! He then proceeded to tell me that he has tattooed thousands of people and I was the first HIV Positive person to ever walk through the door. I think what pissed me off the most was that I found myself trying to explain to this imbecile that I take medicine everyday and I’m undetectable, it was like I was trying to make excuses for myself. It was horrible. Absolutely horrible.
Thankfully another tattoo artist came to the rescue and said he had no qualms with doing my tattoo. Had he waited another 30 seconds we would have walked out and taken our business elsewhere. The Artist named Ray who did my tattoo for me really did a great job and I am thankful for him.
The Journey ….. From The Farm, To The Front Page
“You Gain Strength, Courage And Confidence By Every Experience In Which You Stop To Really Look Fear In The Face. You Are Able To Say To Yourself, “I Lived Through This Horror”. I Can Take The Next Thing That Comes Along…. You Must Do The Thing You Think You Cannot Do….. ELEANOR ROOSEVELT
THIS ARTICLE HAS BEEN IN THE EVOLVING STAGES FOR THE PAST SEVERAL WEEKS NOW, AS I HAVE WRITTEN, ADDED, RE-WRITTEN, AND PROOF READ, IN AN EFFORT TO TELL MY STORY AS I WANT IT TO TO BE TOLD. THERE MAY BE SOME WHO READ IT, AND, WHO MAY HAVE “BEEN THERE” IN THE EARLY DAYS OF THIS STORY, AND MAY REMEMBER THINGS I HAVE LEFT OUT. RELYING ON MEMORY, AND JOURNAL NOTES FROM 20 YEARS AGO, I HOPE AS YOU READ MY STORY, YOU COME AWAY WITH A SENSE OF WHAT I HAVE EXPERIENCED ALONG THE WAY, AS I HAVE FORGED AHEAD WITH MY LIFE, AND TRYING TO MAKE THE BEST OF A SOMETIMES TOUGH SITUATION, FOR A LACK OF A BETTER DESCRIPTION. I ASK THAT YOU TRY TO NOT BE TOO JUDGMENTAL AS YOU READ THROUGHOUT THIS ARTICLE. I DO, HOWEVER UNDERSTAND HOW WE AS HUMANS ARE QUICK TO PASS JUDGEMENT. THE JOURNEY BEGINS…………………………………………………………………………….
HAVE YOU EVER HAD ONE OF THOSE DEFINING MOMENTS IN YOUR LIFE WHEN YOU KNOW WHERE YOU WERE? A CERTAIN TIME OF DAY, AN EVENT, A SONG, OR PLACE, THAT TAKES YOU RIGHT BACK TO THAT TIME, AND IT SETS INTO MOTION THE FEELINGS YOU HAD AT THAT POINT IN TIME. WHEN YOU MAY NOT KNOW IT AT THE TIME, BUT TO LOOK BACK ON IT, IT WAS A CHANGING POINT? MOST ALL OF US HAVE HAD TIMES WITHIN OUR LIVES THAT “STUCK” WITH US., NOT ALL OF THEM ARE TIMES THAT ARE PUBLICIZED, OR THAT BECOMES THE SUBJECT OF THE “RUMOR MILL”. MY MOMENT , OR AS I CALL IT, “THE JOURNEY”, BECAME THAT, AND IN ORDER TO SET THE RECORD STRAIGHT, A HARD DECISION WAS MADE BY ME TO TELL THE STORY, MY STORY, SO, THAT IF PEOPLE WERE GOING TO TALK ABOUT IT, THEY WOULD HAVE THE FACTS, AND IT WOULD NOT BE JUST GOSSIP. EVEN WITH THAT, THERE ARE STILL THOSE WHO, NO MATTER WHAT, WILL ALWAYS USE IT TO TRY AND HURT, EITHER WITH WORDS OR ACTIONS, BOTH, OR IN SOME CASES, THE LACK OF EITHER, THINKING IT CAN HURT YOU MORE. SOMETIMES IT DOES, AND ITS SOMETIMES EASY TO LET THAT HURT AFFECT YOU IN A WAY WHERE ITS HARD TO MOVE PAST IT AND FORGIVE. TO THOSE WHO HAVE CAUSED ME HURT, MY FAMILY HURT, OR SOMETIMES QUESTION MY WORTH, I FORGIVE. AND, IF I AM THE ONE WHO CAUSED THE HURT,ESPECIALLY TO MY FAMILY, FOR THAT I APOLOGIZE. IT WAS AND STILL IS WITH NO INTENTION TO CAUSE OTHERS HARM OR TO HURT THEM IN ANY WAY. I DO NOT APOLOGIZE FOR THE DECISION(S) I MADE REGARDING MYSELF, AND THE STEP I TOOK TO MAKE MY ILLNESS KNOWN, AND, I KNEW IT WOULD BRING ABOUT QUESTIONS AND COMMENTS FROM THOSE WHO HAPPEN TO HAVE A DIFFERENT BELIEF, OR IDEA AS TO HOW SOMEONE SHOULD HANDLE CERTAIN ASPECTS OF THEIR LIVES. SOMETIMES WE DO WHAT WE FEEL IS BEST AT THE TIME, AND HOPE IT WILL ALL TURN OUT ON A POSITIVE NOTE, AND THE DECISION TO EXPOSE MYSELF AND LIVE OPENLY AS I HAVE, IS STILL THE BEST DECISION FOR ME, AND I KNOW WITH ALL THIS SAID, I HAVE STILL BEEN THE SUBJECT OF GOSSIP. I HAVE BEEN ME ALL MY LIFE, HOWEVER, OVER THE YEARS I HAVE ALLOWED OTHERS TO KNOW ME AS I AM, AND NOT JUST AS THE ME THEY THOUGHT I WAS, SHOULD BE, OR, WANTED ME TO BE. IT IS EASY FOR US TO LOOK AT OTHERS, AND SAY IF WE WERE THEM, WE WOULD OR WOULD NOT DO WHAT THAT PERSON HAS DONE OR DOES. HOWEVER, AS ONE OF THOSE PEOPLE WHO HAS BEEN LOOKED AT BY OTHERS AND SAID THEY WOULD NOT HAVE DONE WHAT I DID, OR TO BE SO OPEN WITH MY ILLNESS AND SUCH, LET ME SAY, UNTIL YOU ARE IN MY PLACE, YOU WILL NEVER KNOW HOW YOU’LL HANDLE SOMETHING UNTIL IT IS YOU. IT IS WITH GREAT APPRECIATION I GIVE TO THOSE WHO WERE A CLOSE PART OF MY LIFE IN THE EARLIEST TIMES OF MY DIAGNOSIS, WHO DID NOT WALK AWAY, EVEN THOUGH IT COULD HAVE BEEN EASY FOR THEM TO. IF I NEVER THANKED THEM, I HOPE THEY KNEW WHAT IT MEANT TO ME TO BE THERE WITH AND FOR ME. WE ALL GO THROUGH TIMES THAT ARE HARD FOR US EMOTIONALLY AND SOMETIMES PHYSICALLY, AND, WHEN I TALK ABOUT MY EXPERIENCES, IT IS NOT MEANT TO APPEAR THAT WHAT I HAVE GONE THROUGH IS OF GREATER SIGNIFICANCE THAN WHAT OTHERS HAVE EXPERIENCED. IT WAS, AND STILL IS A WAY TO PROCESS THE DAY TO DAY JOURNEY, AS I KNOW IT. AND WHILE THERE MAY BE THOSE WHO HAVE GONE THROUGH WHAT I HAVE, WE CAN ONLY KNOW OUR OWN THOUGHTS AND OUR WAY OF MAKING IT THROUGH WHATEVER COMES OUR WAY. THAT IS NOT TO SAY HOWEVER, THAT YOUR EXPERIENCE OF LIFE’S UPS AND DOWNS IS OF LESS IMPORTANCE. I JUST HAPPEN TO BE ONE OF THOSE PEOPLE WHO PUT IT OUT THERE FOR OTHERS TO SEE, AND TRY TO HELP THEM HAVE A GLIMPSE INTO MY LIFE OVER THE PAST TWO DECADES. SPEAKING ONLY FOR MYSELF, AND SPECULATING ABOUT OTHERS WHO ARE DIAGNOSED WITH A CHRONIC, INCURABLE DISEASE, IT IS A GRIEVING PROCESS TO GO THROUGH, AND THEN TO TRY AND ACCEPT WHAT WE ARE FACED WITH. IN MY CASE, IT IS SOMETHING THAT MANY STILL DO NOT WANT TO DEAL WITH, IN THAT IT CAUSES UNCOMFORTABLE SITUATIONS AND AWKWARD ATTEMPTS AT CONVERSATION SO AS NOT TO “UPSET” THOSE LIKE MYSELF, WHO, DEAL WITH THE REALITY OF HIV/AIDS, AND OUR IMPENDING MORTALITY, AND, OF THE REAL POSSIBILITY OF A LIFE ENDED TOO SOON. WITH THAT BEING SAID, THERE ARE THOSE WHO FEEL PEOPLE LIKE ME DESERVE EXACTLY WHAT WE GET, AND THAT AIDS IS THE BEST THING THAT CAN HAPPEN TO ME. I AM WELL AWARE OF HOW MANY FEEL EVEN TODAY, AS THEY DID 20 YEARS AGO WHEN I REVEALED MYSELF AND THE ILLNESS I HAVE. THE STIGMA AND HATRED I EXPERIENCE(D) CAUSED ME TO RETHINK SOME OF MY OWN THOUGHTS ABOUT OTHERS, AND IT ALLOWED ME TO SEE MANY AT THEIR VERY WORST, WHILE THEY ARE HIDING BEHIND THE DISGUISE OF GOODNESS, WHILE ON THE OTHER HAND, SHARING MY EXPERIENCE, LET ME SEE THE VERY BEST IN OTHERS.
THE FOLLOWING IS NOT WRITTEN WITH INTENT TO SWAY THE READERS OPINION ABOUT THE SUBJECT IN ONE WAY OR ANOTHER. IT IS WRITTEN MERELY AS A LOOK BACK AT THE PAST 20 YEAR JOURNEY I HAVE BEEN ON , WITH A VERY PERSONAL SUBJECT THAT HAS IMPACTED MY LIFE. THERE ARE THOSE IN MY LIFE, WHO, HAVE MADE THE JOURNEY WITH ME, AND NOT ALL AGREE WITH SOME OF THE DECISIONS I HAVE MADE ALONG THE WAY. WITH THAT BEING SAID, IT IS HOPED THOSE OF YOU WHO ARE NOW JUST LEARNING ABOUT THINGS BEING WRITTEN HERE, WILL BE OPEN MINDED, AND TAKE IT AS A THOUGHT PROVOKING SUBJECT TO USE TO LOOK INTO YOUR OWN LIFE AS SOMETHING TO REALLY CONSIDER, AND TO THINK ABOUT WHAT IT WOULD BE LIKE IF IT WERE SOMETHING YOU WERE DEALING WITH ON A PERSONAL LEVEL. AS A HUMAN BEING, LIKE ALL OF YOU WHO READ THIS, IT WAS FELT, THE DECISION MADE TO SHARE THIS STORY WAS THE RIGHT THING TO DO. HOWEVER, THE FEELINGS OF THOSE CLOSEST TO ME, THE WRITER OF THIS STORY, AND OF HOW IT WOULD IMPACT THEIR LIVES WERE CONSIDERED AND MUCH THOUGHT WENT INTO THE DECISION TO BRING THIS STORY OUT INTO THE OPEN AND ALLOW OTHERS TO DEBATE WHY ANYONE WOULD MAKE SUCH A DECISION ABOUT THEMSELVES AND WHY ANYONE WOULD BE SO OPEN ABOUT SOMETHING MOST WOULD BE AFRAID, OR TOO ASHAMED TO ADMIT. THIS IS ABOUT A DISEASE, AND A PART OF A LIFE, THAT, IS SOMETHING MANY FELT SHOULD HAVE BEEN KEPT SILENT, AND DEALT WITH ON MY OWN, AND IT IS SOMETHING THAT SHOULD NOT BE TALKED ABOUT SO OPENLY. ON THE OTHER HAND, IF IT WERE CANCER, HEART DISEASE, STROKE, OR A NUMBER OF OTHER DISEASES, THEN IT WOULD NOT BE AS SHAMEFUL, AND OTHERS WOULD LOOK AT IT WITH MORE COMPASSION AND BETTER UNDERSTANDING, AND SAY IT WAS OKAY TO BRING IT OUT INTO THE OPEN. IT BRINGS ABOUT OTHER ISSUES THAT ARE OFTEN NOT SPOKEN ABOUT, OR IF THEY ARE, IT IS VERY LIKELY A CONVERSATION THAT BECOMES HEATED TO SAY THE LEAST. THERE HAVE BEEN TIMES WITHIN THIS JOURNEY OVER THE PAST 20 YEARS WHEN IT HAS SEEMED I AM LOOKING AT THE LIFE OF SOMEONE ELSE. WHEN IN FACT, I HAVE BEEN TALKING ABOUT MY OWN, AND SHARING A PART OF MYSELF, AS A WAY TO EDUCATE AND BRING ABOUT AWARENESS. IT IS NOT HOWEVER, WISHED A DISEASE LIKE HIV/AIDS ON ANYONE. SO, THE OLD SAYING…WALK IN SOMEONE ELSE’S SHOES…..WELL, TRUST ME WHEN ITS SAID…. A WALK IN ONES OWN SHOES, TO LIVE THE LIFE EVERY MINUTE, OF EVERY HOUR, OF EVERY DAY, THAT HAS NOW TURNED INTO OVER 20 YEARS. I KNOW FIRSTHAND WHAT ITS LIKE TO BE SHUNNED, AND HATED. I ALSO KNOW WHAT ITS LIKE TO FEEL TRUE LOVE AND COMPASSION.
ONWARD WITH THE JOURNEY……
IT WAS A THURSDAY. A DAY IN OCTOBER, LIKE MOST OTHER LATE OCTOBER DAYS. WARM, BUT WITH A COOL, CRISP MORNING. AS A YOUNG MAN OF 29, I WENT ABOUT THE DAY, GOING TO WORK IN A SMALL, RURAL TENNESSEE FACTORY. IT WAS A WEEK AWAY FROM HALLOWEEN, AND BEFORE THE DAY WAS FINISHED, ME, THE 29 YEAR OLD WOULD BE TAKEN BACK TO THE HALLOWEEN OF 2 YEARS BEFORE, RELIVING WHAT HAD HAPPENED THAT WOULD AFFECT MY LIFE UNLIKE IT HAD EVER BEEN BEFORE.
THE SUMMER LEADING UP TO THE DAY IN OCTOBER OF THAT YEAR HAD BEEN ONE THAT, WAS , FOR THE MOST PART A GOOD ONE FOR ME WHO, GREW UP SIMPLY ON A FARM. THE FARM HAD BEEN A SAFE PLACE, AND, WOULD LATER BE RECALLED AS A PLACE, EVEN THOUGH MUCH LOVED, AS A PLACE WHERE AS A YOUNG MAN REALIZED I HAD BEEN SHELTERED FROM THE REAL WORLD, ALLOWING MYSELF TO BE NAIVE, AND DUE TO BEING SHELTERED AND NAIVE FOR ALL THOSE YEARS, IT WOULD PROVE TO PLAY A HUGE PART IN MY DECISIONS IN DEALING WITH REAL LIFE SITUATIONS. NONETHELESS, THE SUMMER OF THAT YEAR BROUGHT ABOUT AN ISSUE FOR THE THEN YOUNG ME. AS THE SUMMER STARTED I NOTICED SOMETHING GOING ON WITH MY BODY. I STARTED TO NOTICE SMALL, IN FACT, TINY BRUISE – LIKE SPOTS APPEARING ON MY ARMS, THEN LEGS, THAT WOULD APPEAR, LAST A FEW DAYS, AND DISAPPEAR, ONLY TO REAPPEAR DAYS LATER TO RUN THE CYCLE AGAIN. THIS WAS IN THE EARLY DAYS OF THE INTERNET, AND WITH HAVING NO ACCESS TO A COMPUTER TO “GOOGLE” IT, I FOUND A MEDICAL ENCYCLOPEDIA, AND STARTED SEARCHING FOR THE CAUSE OF THIS STRANGE, NEW CONDITION. IN THE BACK OF MY MIND, I HAD A NAGGING THOUGHT OF THE HALLOWEEN OF 2 YEARS BEFORE, AND HOW, WHAT WAS HAPPENING NOW, MIGHT SOMEHOW HAVE A CONNECTION. AFTER MUCH SEARCHING THROUGH THE MEDICAL BOOK, I FINALLY CAME ACROSS SOME PICTURES OF WHAT LOOKED LIKE WHAT I WAS EXPERIENCING. WITH THE PICTURES WAS A DESCRIPTION OF WHAT THE CONDITION WAS CALLED, AND WHAT POSSIBLE CAUSES OF IT WERE. IT WAS CALLED IDIOPATHIC THROMBOCYCTOPENIA PURPURA, OR ITP, FOR SHORT. IT WAS A CONDITION WHERE THE PLATELET COUNT IN THE BODY WAS DIMINISHED TO A DANGEROUSLY LOW LEVEL, ALLOWING BLOOD TO “SEEP” FROM THE VEINS, AND RISE TO THE SURFACE OF THE SKIN, AS SMALL BLOOD BLISTER TYPE BRUISING. THE SPLEEN PLAYED INTO THE EQUATION, AND IT COULD POSSIBLY BE CAUSED BY LEUKEMIA, LUPUS, SOMETHING CALLED EVANS SYNDROME, OR HIV, TO NAME A FEW. WITH THIS NEW INFORMATION, MY MIND AGAIN RACED WITH A WAVE OF FEAR, EVEN THOUGH, I FELT IT COULD NOT POSSIBLY HAPPEN TO ME.
I TOOK THIS INFORMATION AND KEPT IT TO MYSELF FOR AWHILE, ACTUALLY FOR MOST OF THE SUMMER, BEFORE I DECIDED TO GO GET CHECKED OUT ONE DAY AFTER WORK, AFTER THE CONDITION SEEMED TO BE GETTING WORSE, AND NOT BETTER. I DROVE INTO THE ADJOINING COUNTY TO A WALK-IN CLINIC LATE IN THE DAY. AS SOON AS I WALKED IN TO WHERE THE ATTENDING DOCTOR WAS, THE DOCTOR TOOK ONE LOOK AT ME AND IMMEDIATELY SAID, HE SUSPECTED IT WAS LEUKEMIA, AND THAT HE WANTED ME TO GO INTO NASHVILLE TO SEE AN ONCOLOGIST FOR FURTHER TESTING TO CONFIRM HIS SUSPICION OF LEUKEMIA. MY HEART SANK WITH THE NEWS OF POSSIBLY HAVING LEUKEMIA, AND, WAS THINKING OF HOW IT WOULD IMPACT MY YOUNG LIFE, AND THE POSSIBILITY OF IT BEING CUT SHORT. LITTLE, DID I KNOW THAT FURTHER TESTING WOULD BRING ABOUT MORE BAD NEWS, AND ALTER THE REST OF MY LIFE, AND ALL THE WHILE, SETTING ME ON A PATH OF SELF ACCEPTANCE AND SELF LOVE, ALONG WITH THRUSTING ME INTO THE SPOTLIGHT OF A DISEASE THAT WAS, AND WOULD BECOME HEADLINE GRABBING NEWS.
THE FOLLOWING DAY, ALONE, I MADE THE DRIVE INTO THE BIG CITY OF NASHVILLE TO SEE THE ONCOLOGIST, A CANCER SPECIALIST, AND TRYING TO PREPARE MYSELF FOR A DIAGNOSIS OF LEUKEMIA. ON THE DRIVE DOWN TO NASHVILLE, I WAS ALSO THINKING ABOUT THE IRONY OF HAVING TO GO BACK INTO THE CITY OF NASHVILLE, HAVING MADE THE DRIVE BACK AND FORTH SOME 2 YEARS PRIOR, WHILE DATING SOMEONE THERE FROM HALLOWEEN 1989 THROUGH MID JANUARY 1990. UPON ARRIVING AT THE CANCER CLINIC IN NASHVILLE, AND WALKING IN, I SAW PEOPLE IN ROOMS, HOOKED UP TO MACHINES, GETTING, WHAT WAS BELIEVED TO BE CHEMOTHERAPY TREATMENTS, AND ALLOWED MYSELF TO THINK OF IT AS ME AS ONE OF THOSE PEOPLE IN A VERY SHORT TIME. TRY NOT TO GO THERE JUST YET, I TRIED TO QUIETLY TELL MYSELF. AFTER ALL, IT HAD NOT BEEN CONFIRMED AS BEING LEUKEMIA…YET.
THE DOCTOR, A FAIRLY YOUNG FELLA HIMSELF, SEEMED SMART ENOUGH, AND RIGHT AWAY, GOT DOWN TO FIGURING OUT WHAT WAS GOING ON, AND ONE OF THE THINGS FIRST DONE WAS THE DRAWING OF BLOOD, FOR TESTING. WITH AWHILE TO WAIT FOR THE RESULTS. THE VISIT ALTOGETHER LASTED FOR ABOUT 2 HOURS. IT WAS DETERMINED THE I DID IN FACT HAVE ITP, BUT, IT DID NOT APPEAR THAT LEUKEMIA WAS THE CAUSE. WHAT A RELIEF!! NO LEUKEMIA, SO, MAYBE IT WAS NOT AS BAD AS IT HAD ORIGINALLY APPEARED. IT WAS THOUGHT THE CONDITION COULD BE TREATED WITH STEROIDS, TO GET THINGS BACK ON TRACK. WORSE CASE SCENARIO, THE SPLEEN MIGHT HAVE TO BE REMOVED AT SOME POINT, WHICH HAD PROVEN SUCCESSFUL IN OTHERS WITH THE SAME CONDITION, BUT, THE FIRST TREATMENT WOULD BE MEDICINE. THE DOCTOR, HOWEVER, SEEMED TO HAVE MORE QUESTIONS FOR ME. QUESTIONS THAT INCLUDED MY SEXUAL HISTORY, AND/OR RISKY BEHAVIOR THAT I MAY HAVE PARTICIPATED IN AT SOME POINT IN THE PAST. I HAD NEVER DISCUSSED MY SEX LIFE WITH A DOCTOR, BUT, OFFERED ANSWERS TO THE QUESTIONS WITH EASE AND HONESTY. ONE QUESTION WAS….HAVE YOU EVER BEEN TESTED FOR HIV? ASKED THE DOCTOR, I RESPONDED WITH…YES, I HAD BEEN TESTED IN EARLY 1988, FOR AN INSURANCE POLICY I HAD APPLIED FOR, AND THAT THE TEST RESULTS WERE NEGATIVE. AND, I OFFERED THE INFORMATION THAT I HAD PARTICIPATED IN RISKY, UNPROTECTED, SEX WITH THE PERSON I HAD DATED FOR 3 MONTHS, FROM HALLOWEEN 1989 UNTIL MID JANUARY, 1990. BUT, I ADDED, THAT I HAD ASKED THE PERSON I HAD SEX WITH IF THEY HAD BEEN TESTED FOR HIV, AND WAS TOLD THEY HAD, IT WAS A NEGATIVE TEST, AND EVERYTHING WAS FINE. IT WAS WITH THIS ANSWER, THAT I BEGAN TO REALIZE HOW SHELTERED MY LIFE HAD BEEN, AND AS TO HOW NAIVE I HAD BEEN, IN TRUSTING THE ANSWER THAT HAD BEEN GIVEN ME FROM THE OTHER PERSON, AS I NOW KNEW IT; I HAD BEEN LIED TO. IT WAS ALSO A POINT WHERE I HAD EVER REALLY OPENED MYSELF UP TO ANYONE ABOUT MYSELF AND MY PRIVATE LIFE. IT WAS DECIDED AN HIV TEST WAS NEEDED JUST TO RULE IT OUT. IT WOULD PROBABLY AGAIN, BE A NEGATIVE RESULT, BECAUSE, AFTER ALL IT HAD BEEN 2 YEARS SINCE THAT INCIDENT, AND, I HAD NOT EVER HAD ANY SYMPTOMS OF THE HIV DISEASE. BUT, THEN I THOUGHT TO MYSELF, THERE WAS THE ONE TIME IN FEBRUARY 1990, I HAD ENDED UP IN THE HOSPITAL, WITH AN EXTREME EARACHE, AND FLU LIKE SYMPTOMS, THAT DID NOT LAST VERY LONG HOWEVER. BUT, IN HIND SIGHT IT WAS MY BODY REACTING TO THE NEW VIRUS THAT WAS OVERTAKING MY IMMUNE SYSTEM, AS IT WOULD BE DISCOVERED VERY SOON. IT WAS AGREED THAT THE HIV TEST SHOULD BE DONE, JUST TO RULE IT OUT, SO AS TO CONCENTRATE ON THE ITP, AND GETTING IT UNDER CONTROL. IT WOULD BE A FEW DAYS HOWEVER, BEFORE THE HIV TEST RESULTS WOULD BE KNOWN. I LEFT NASHVILLE FOR MY SMALL HOMETOWN AFTER GETTING FINISHED WITH THE TESTS, AND A PRESCRIPTION FOR STEROIDS TO TREAT THE ITP. ALONG WITH A FEELING THAT MY LIFE WOULD NEVER BE THE SAME.
102491, AS I’VE CAME TO CALL IT, IS A DATE CODE, 10-24-91, WOULD BE THE DATE WHEN MY LIFE WOULD ALL CHANGE. I WENT ABOUT MY DAY, IT WAS NOW THURSDAY OCTOBER 24, 1991. IT HAD BEEN A WEEK SINCE THE HIV TEST, NO NEWS OF THE RESULT. IT HAD BEEN A VERY LONG WEEK. IT WAS ABOUT 11:06 A.M., WHEN I LOOKED UP TO SEE MY SUPERVISOR COMING TOWARD ME AS I DID MY JOB. WHEN THE SUPERVISOR APPROACHED ME, HE INFORMED ME THAT I HAD AN URGENT PHONE CALL, AND THAT I COULD TAKE IT INSIDE THE SUPERVISORS OFFICE. I WAS GIVEN PRIVACY TO TAKE THE CALL. AS I ANSWERED THE PHONE, A VOICE ON THE OTHER END IDENTIFIED HIMSELF AS THE DOCTOR FROM THE NASHVILLE ONCOLOGY CLINIC, AND THAT THE HIV TEST THAT HAD BEEN GIVEN A WEEK EARLIER WAS POSITIVE, AND TOLD ME THAT I HAD 5, MAYBE 7 YEARS TO LIVE, AND THAT HE (THE DOCTOR) SUGGESTED I FIND A DOCTOR WHO WOULD TREAT ME . THE DOCTOR HUNG UP AT THAT POINT. SILENCE……….
SITTING TOTALLY STUNNED, AND AS TEARS STARTED TO ROLL DOWN MY FACE, I FELT THE ROOM BEGIN TO SPIN, BUT, IN SLOW MOTION. I COULD NOT BELIEVE WHAT I HAD JUST BEEN TOLD. 5, MAYBE 7 YEARS TO LIVE? HIV? AIDS? HOW DID THIS HAPPEN TO ME, AND WHY???
I SOMEHOW FOUND MYSELF BACK OUT ON THE WORK-FLOOR, BARELY ABLE TO FUNCTION, WITHOUT BREAKING DOWN AND CRYING SOME MORE. I SPENT A LOT OF THE REST OF THAT DAY IN THE RESTROOM, CRYING AND TRYING TO PROCESS THE NEWS I HAD JUST BEEN GIVEN, AND WONDERING HOW I WOULD EVER DEAL WITH IT. THOUGHTS OF MY CHILDHOOD, AND MY FAMILY FILLED MY MIND. IT WAS AS IF MY LIFE WAS FLASHING BEFORE MY EYES, AND ALL I COULD THINK OF WAS MYSELF BEING VERY SICK AND DEAD BECAUSE OF AIDS, AND OF WHAT PEOPLE WOULD BE SAYING ABOUT ME IF THEY EVER FOUND OUT ABOUT ME. IMAGES I HAD SEEN ON TELEVISION OF AIDS PATIENTS IN HOSPITALS SICK AND DYING KEPT ME IN A WHIRLWIND OF EMOTIONS. SOMEHOW I GOT THROUGH THE WORKDAY, AND DECIDED ON MY WAY HOME, I WOULD JUST BREAK THE NEWS TO MY PARENTS AND FAMILY, BUT ONCE I SAW THEIR FACES, I COULD NOT BRING MYSELF TO TELL THEM, AND TO DISAPPOINT THEM, AND SHOWING MYSELF AS A FAILURE. I DECIDED TO KEEP THE SECRET TO MYSELF, AND MAYBE THE DISEASE WOULD TAKE ME. AND, THE SOONER, THE BETTER, I THOUGHT. LIFE WOULD NEVER BE THE SAME, IT WAS NOT WORTH LIVING. THE FEELING OF SADNESS AND DESPAIR WAS ALMOST UNBEARABLE, THAT FIRST DAY, AND MANY THAT FOLLOWED. THE TEARS WERE PLENTIFUL, THE DAYS LONG AND THE NIGHTS SLEEPLESS. DEPRESSION WAS TAKING OVER, AND THERE SEEMED TO BE NO WAY OUT OF THE DARKNESS. YET, SOMEHOW, I SURVIVED, AND SLOWLY BEGAN TO SEE LIGHT AT THE END OF A LONG, LONG TUNNEL.
AS THE DAYS PASSED, I DID HAVE ENOUGH WITS ABOUT MYSELF TO REMEMBER THE NAME OF A WOMAN I HAD READ ABOUT IN A LOCAL NEWSPAPER, WHO, WORKED AT THE REGIONAL HEALTH DEPARTMENT IN COOKEVILLE, AND HELD SUPPORT GROUP MEETINGS FOR PERSONS WHO WERE LIVING WITH HIV AND AIDS. I GAVE HER A CALL, GOT AN APPOINTMENT TO MEET WITH HER, AND, WITH HER, I IMMEDIATELY KNEW THIS LADY HAD SAVED MY LIFE, AND MAYBE, JUST MAYBE, I WOULD HAVE AT LEAST 5 TO 7 GOOD YEARS TO LIVE OUT MY LIFE, MAYBE I WOULD LIVE TO SEE THE AGE OF 35, IF I WAS REALLY LUCKY. YET, I KNEW FROM WHAT INFORMATION I HAD GATHERED, THE DISEASE I HAD WAS KILLING PEOPLE AT AN ALARMING RATE, AND AFTER I BECAME INVOLVED IN THE CIRCLE OF FRIENDS HIV/AIDS SUPPORT GROUP, I SAW FIRSTHAND THE TOLL THE DISEASE WAS TAKING. IT WAS WITHIN THIS GROUP, I MET THE FIRST PEOPLE WHO WERE LIKE MYSELF…LIVING, AND SADLY DYING WITH AND FROM THIS HORRIBLE DISEASE. HERE, I FOUND HOPE, IN THE MIDST OF ALL THE LOSS. AND, IT WAS HERE I FELT THE SAFEST, AND WHERE MY SECRET WAS SAFE. I WOULD NOT EVER HAVE TO TELL ANYONE, NOT EVEN MY FAMILY. I FELT I COULD ENJOY THE DAYS I HAD LEFT, AND THEN JUST DIE. I HAD ITP AFTER ALL, AND PEOPLE WOULD THINK IT WAS THE ITP THAT KILLED ME. I WOULD NOT HAVE TO DEAL WITH THE SHAME OF PEOPLE KNOWING I HAD DIED FROM AIDS, AND, MY FAMILY WOULD BE SPARED THE SHAME AS WELL. I WAS PUT IN TOUCH WITH A VANDERBILT DOCTOR, THROUGH THE HIV LADY, AND BEGAN A TREATMENT PROGRAM IN NASHVILLE, MAKING THE 80 PLUS MILE TRIP ONE WAY, SEVERAL VISITS IN THE FIRST FEW WEEKS, AND BEGAN TAKING AZT, THE FIRST HIV/AIDS DRUG, ON CHRISTMAS EVE, 1991. IT WAS NOT AN EASY ROAD, BUT, I FELT I NEEDED TO AT LEAST TRY TO DO SOMETHING TO KEEP MYSELF ALIVE FOR A WHILE LONGER.
I CONTINUED MY JOB IN MY SMALL HOMETOWN, DOING MY BEST TO TRY AND KEEP FROM LETTING ANYTHING SLIP ABOUT WHAT I WAS LIVING WITH. I LET MY CO WORKERS BELIEVE MY TRIPS TO THE DOCTOR IN NASHVILLE SO OFTEN WAS RELATED TO THE ITP. I KEPT THIS STORY GOING FOR ABOUT 2 YEARS. FINALLY HAVING TO HAVE MY SPLEEN REMOVED ON DECEMBER 21, 1992. THE VARIOUS DATES SEEMED TO BE STICKING IN MY MIND AS MARKERS, AND HAVE LATER BEEN JUST THAT, TO REMIND ME OF WHERE I STARTED WITH THIS DISEASE, AND THE POINTS ALONG THE WAY, THAT SHOW THE PROGRESS I HAVE MADE. IT WAS DURING THE FIRST 2 YEARS THAT I, WHO, BY NOW HAD MADE IT TO AGE 30 , AND BEYOND, GOT THE NERVE TO TELL MY FAMILY ABOUT MY HIV POSITIVE STATUS, HOPING TO FIND SUPPORT FROM THEM, OF WHICH I DID. I WAS STILL DEALING WITH THE STRESS OF WORKING, AND GOING TO THE DOCTOR SOME 80 MILES OR SO AWAY, AND KEEPING MY SECRET FROM MY EMPLOYER AND CO WORKERS, FOR FEAR OF HOW THEY MIGHT REACT, EVEN BORROWING FROM MY 401K RETIREMENT ACCOUNT AT ONE POINT TO PAY FOR DOCTORS VISITS FOR MY HIV TREATMENT, RATHER THAN USE MY HEALTH INSURANCE FOR FEAR OF BEING FOUND OUT BY MY EMPLOYER AND FRIENDS AT WORK. THE STRESS WAS TAKING ITS TOLL. IT REMINDED ME OF A STORY I’D HEARD OF A DUCK THAT WAS SWIMMING ACROSS A LAKE, AND OF HOW EFFORTLESS IT SEEMED FOR THE LITTLE DUCK TO MOVE ALONG, BUT, IN ORDER TO MOVE SO SMOOTHLY ACROSS THE WATER THE DUCKS LITTLE LEGS WERE PADDLING LIKE CRAZY JUST BELOW THE SURFACE. THAT’S HOW I FELT. PRESENTING THE APPEARANCE OF EASE AND CALMNESS ON THE SURFACE, BUT PADDLING LIKE CRAZY, JUST TO STAY AFLOAT TO KEEP MOVING. SO, AFTER DISCUSSING THIS WITH MY DOCTOR, IT WAS SUGGESTED I DO SOMETHING ABOUT IT, AS STRESS AND AIDS DO NOT MIX WELL. I MADE THE DECISION TO LEAVE THE JOB I HAD HELD FOR SEVERAL YEARS . ON JULY 29, 1993, I MADE MY ROUNDS, AND SAYING MY GOODBYES TO THE CO WORKERS I HAD COME TO BE FRIENDS WITH AND CARED ABOUT, AND NOT GIVING A REAL REASON FOR QUITTING MY JOB. I DID, HOWEVER, IN MY EXIT INTERVIEW REVEAL, I WAS LEAVING BECAUSE I WAS HIV POSITIVE, AND NEEDED TO GET AWAY FROM ALL THE STRESS KEEPING MY SECRET WAS CAUSING. I CRIED, AND AGAIN, FELT LIKE A FAILURE, BUT, WALKED AWAY, AND INTO A CALMER, LESS STRESSFUL LIFE. BUT, MY JOB AS A HUMAN, WAS FAR FROM BEING OVER, I JUST DID NOT KNOW IT YET. THE DAYS AHEAD WOULD BRING ABOUT CHALLENGE AND CHANGE, AND, EVEN MORE COURAGE THAN I MYSELF EVER KNEW I HAD.
AFTER LEAVING THE STRESS BEHIND ME, AND SETTLING INTO A SLOWER PACED ENVIRONMENT, AS A 31 YEAR OLD, I WAS BECOMING MORE INVOLVED IN THE SUPPORT GROUP, AND WAS PICKED TO SIT IN ON COMMITTEES FROM MY AREA OF THE STATE TO HELP BRING ABOUT EDUCATION AND AWARENESS, ALONG WITH HELPING TO TRY TO BRING FEDERAL MONEY INTO TENNESSEE FOR HIV/AIDS PROGRAMS. ALONG THE WAY, I WAS EVEN BECOMING MORE OF A PUBLIC FIGURE ASSOCIATED WITH HIV/AIDS, AND AGREED TO BE A SPEAKER AT SOME OUT OF THE WAY PLACES, AWAY FROM MY HOMETOWN, SO, AS TO NOT BE FOUND OUT I WAS LIVING WITH THE DISEASE. WHERE WAS THE LITTLE, SHY FARM-BOY OF JUST A FEW YEARS EARLIER? THE LAYERS WERE BEGINNING TO BE PEELED AWAY, TO REVEAL A MUCH STRONGER AND MATURE PERSON. IT WAS THROUGH THIS AVENUE, I MET OTHER PUBLIC SPEAKERS, ONE IN PARTICULAR, A LADY NAMED DEBBIE RUNIONS, WHO, LIKE ME HAD DEALT WITH ITP, HAD HER SPLEEN REMOVED, AND HAD EVEN TESTED HIV POSITIVE AROUND THE SAME TIME AS I HAD. I ALSO BECAME QUITE CLOSE WITH MEMBERS OF THE SUPPORT GROUP, AND IT WAS DURING THE SUMMER OF 1994, THAT ONE OF MY CLOSE FRIENDS WAS EXTREMELY SICK, AND EVENTUALLY PASSED AWAY. IT WAS BEFORE THE FRIEND PASSED THAT HE AND I, NOW 32 YEARS OLD WERE DISCUSSING OUR SITUATION OF LIVING AND HIDING WITH HIV, AND THAT WE WISHED SOMEONE COULD BE ABLE TO SPEAK OUT ABOUT IT, AND LET PEOPLE SEE THAT HIV/AIDS WAS REAL AND WAS IN THE SMALL COMMUNITIES AND TOWNS. NO ONE HAD EVER PUBLICLY BEEN SO CRAZY TO DO SUCH A THING. TO REVEAL YOU HAD HIV TO PEOPLE YOU KNEW, GREW UP WITH, WORKED WITH, YOU WOULD HAVE TO BE INSANE. WE WANTED SOMEONE WHO WOULD MAKE OUR VOICES HEARD, AND JUST LIFT THE BURDEN FOR US. AFTER THE DEATH OF HIS FRIEND, AND AS THE LOCAL HOSPITAL PLANNING A WORLD AIDS DAY PROGRAM FOR DECEMBER 1, 1994, IT WAS WHEN I DECIDED I WOULD BE THE ONE WHO WOULD SPEAK FOR ALL THOSE LIKE MYSELF, I HAD CHOSEN TO BE THE VOICE, AND BEAR THE BURDEN OF OTHERS, WHILE ALLOWING MY OWN BURDEN TO BE LIFTED. I, WOULD BE THE CRAZY ONE, AS IT WAS LATER DESCRIBED BY SOME. I DECIDED THE TIME HAD COME TO PAY HONOR TO MY FRIENDS MEMORY BY BECOMING AN EDUCATOR THROUGH SPEAKING TO OTHERS, AND TO SHARE MY STORY OF HOW HIV/AIDS HAD IMPACTED MY LIFE, AND OF THE STRUGGLE IT HAD BEEN FOR ME TO GET TO THIS PLACE IN MY LIFE. I WAS SLATED, ALONG WITH MY DEAR FRIEND, DEBBIE, TO BE THE FACE OF AIDS IN THE RURAL AREAS. WOULD I FIND THE COURAGE TO STAND BEFORE MY COMMUNITY AND OPEN UP MY LIFE, NOT KNOWING WHAT THE REACTION WOULD BE???
THE TIME HAD COME FOR ME TO BREAK THE SILENCE, AND STEP INTO THE SPOTLIGHT TO MAKE A DIFFERENCE.
AS WORD SPREAD OF MY DECISION TO GO PUBLIC WITH MY HIV STATUS, I WAS INTERVIEWED BY THE LOCAL NEWSPAPER, AND WAS THE FRONT PAGE STORY, ALONG WITH MY PICTURE, ON DECEMBER 1, 1994. THE WORD WAS OUT, MY SECRET, HAD FINALLY BEEN EXPOSED, BUT, OWN MY OWN TERMS, AND IN MY OWN WAY. IT WAS THE FIRST TIME IN MY LIFE THAT I HAD SPOKEN IN FRONT OF SUCH A LARGE GROUP, WITH TV CAMERAS ROLLING, I WAS SO NERVOUS AND UNSURE OF MYSELF IN MY NEW ROLE, AND SEEING MYSELF SO EXPOSED, WAS A BIT OVERWHELMING.. HOW HAD I EVER MADE IT FROM THAT GREAT DAY OF DESPAIR ON 102491, TO THIS??? I REALIZED I COULD NO LONGER LIVE A LIE, AND WOULD NOT BE SILENT. I WAS CALLED CRAZY BY SOME, BUT BECAME AN INSPIRATION FOR OTHERS, AND A MUCH SOUGHT AFTER SPEAKER IN THE DAYS AND MONTHS THAT FOLLOWED. I HAD BECOME A TEACHER OF SORTS. THE LITTLE FARM-BOY WAS MAKING A DIFFERENCE… IN THE LIVES OF SO MANY, BUT IN MY OWN LIFE AS WELL. I DID ENDURE SOME TOUGH SITUATIONS WITH MY HIV POSITIVE STATUS REVELATION, HOWEVER. THERE WERE SOME I HAD KNOWN MOST ALL MY LIFE WHO WERE NOT SO KIND WITH THEIR WORDS AND ACTIONS. CRUEL AND HATEFUL THINGS WERE DIRECTED TOWARD ME, BUT, I REALIZED, ALTHOUGH IT HURT, THAT THIS WAS PURE IGNORANCE ON THE PART OF THE PEOPLE WHO WERE SAYING THE THINGS THEY DID, AND THAT IT WAS A PART OF MY MISSION, NOW THAT I WAS OPEN ABOUT MY LIFE, TO EDUCATE THOSE PEOPLE, AND TO HELP THEM SEE THEMSELVES IN A DIFFERENT LIGHT, AND TO SEE MYSELF IN A DIFFERENT LIGHT AS WELL. I KNEW I WOULD NEVER CHANGE EVERYONE’S IDEAS ABOUT PEOPLE LIVING WITH AIDS, BUT, I WAS GOING TO TRY WITH THE TIME I HAD LEFT.
THIS OCTOBER 24, 2013, MARKS THE 22 YEAR ANNIVERSARY OF THIS NOW 50+ YEAR OLD MANS HIV POSITIVE TEST RESULT. THE PHONE CALL ON THAT THURSDAY IN 1991, HAS CHANGED MY LIFE FOREVER. JUST HOW MUCH?? IT HAS TAKEN OVER 20 YEARS TO SEE JUST HOW MUCH. THERE HAS BEEN SOMEWHAT OF A SHIFT IN PEOPLES PERCEPTION OF HIV DISEASE, I BELIEVE, BUT, WITH STILL MORE TO COME. HIV/AIDS, HAS BECOME LESS OF A TALKED ABOUT TOPIC IN THE NEWS THAN IT ONCE WAS BACK IN THE 1990′S, AND THERE ARE PROBABLY THOSE WHO MAY WONDER WHAT EVER HAPPENED TO THAT YOUNG MAN WHO BROUGHT AIDS INTO THE FOREFRONT OF CONVERSATION ALL THOSE YEARS AGO. MY DISEASE HAS PROGRESSED TO A FULL BLOWN CASE OF AIDS. IT WAS RUMORED I HAD DIED, ON AT LEAST 2 OCCASIONS, AND I’VE BEEN TOLD BY OTHERS THEY WISHED I WERE DEAD. I REMEMBER THIS JOURNEY WITH A SCRAPBOOK AND JOURNAL THAT I STARTED BACK THEN, SOME 22 YEARS AGO. I GET THE OCCASIONAL HUG FROM THOSE I RUN INTO, WHO STOOD WITH ME BACK IN THE EARLY DAYS OF MY DECISION TO GO PUBLIC WITH MY STATUS. I HAVE CERTAINLY REALIZED THERE IS LIFE AFTER AN HIV DIAGNOSIS, AND THAT I’VE BEEN BLESSED WITH MANY FRIENDS, AND A LOVING FAMILY. I AM STILL SEEN BY THAT VANDERBILT DOCTOR, WHO FIRST TREATED ME AND MY HIV DISEASE BACK IN LATE 1991. THE HIV LADY, HAS SINCE RETIRED, BUT I STAY IN TOUCH WITH HER, AND AM FOREVER GRATEFUL TO HER AND THE TEAM OF CAREGIVERS I HAVE HAD OVER THE YEARS. I STILL MISS THOSE WHO HAVE GONE ON BEFORE ME, WHO, PLAYED A PART IN MY DECISION TO BE THE ONE TO SPEAK FOR US ALL. I AM STILL VERY MUCH ALIVE, BUT, CERTAINLY KNOW WITH HIV DISEASE, IT CAN CHANGE SO QUICKLY, AND THAT IT IS STILL AN UNCURED DISEASE THAT HAS TAKEN MILLIONS WORLDWIDE, AND THAT THERE ARE THOSE WHO BECOME INFECTED EVERYDAY, IN THE BIG CITIES, AND, YES, EVEN STILL IN THE SMALL, RURAL COMMUNITIES AND TOWNS, JUST LIKE THE ONE I GREW UP IN. THAT YOUNG MAN IS NOW 51 YEARS OLD. MY DISEASE, FOR THE MOST PART, IS BEING CONTROLLED WITH MEDICINES, HOWEVER THE MEDS I TAKE TO TREAT THE ILLNESS THEMSELVES, HAVE SIDE EFFECTS THAT HAVE TAKEN THEIR TOLL ON MY BODY, WITH CRUEL SIDE EFFECTS, BUT, I MARCH ON, STILL SPEAKING FROM TIME TO TIME. I REMEMBER THOSE WHO HAVE WALKED THE JOURNEY BEFORE ME, AND SOMETIMES EVEN LET THE SADNESS CREEP BACK IN, FOR I KNOW THE REALITY OF HIV/AIDS. HOPE IS WITH ME. SELF ACCEPTANCE I HAVE FOUND, SUPPORT I HAVE , ALONG WITH LOVE IN MY LIFE, FROM OTHERS AND FOR MYSELF. THE PAST 2 DECADES HAVE HAD ITS UPS AND DOWNS. THERE HAVE BEEN MANY ADVANCES IN THE TREATMENT OF HIV/AIDS ALONG THE WAY. IT IS, HOWEVER, NOT THE FRONT PAGE HEADLINE GRABBING STORY IT ONCE WAS. MANY WHO WERE AROUND IN THE EARLY DAYS OF THIS DISEASE ARE NO LONGER HERE. THERE ARE, HOWEVER, SEVERAL OF US WHO ARE. THE HOPE FOR A CURE IS STILL A PART OF LIFE WITH AIDS, AND THE DISEASE ITSELF HAS BECOME A PART OF ALL OUR LIVES, WHETHER WE REALIZE IT OR NOT. WE STILL SEE THE OCCASIONAL RED RIBBON THAT IS A SYMBOL OF AWARENESS, ALONG WITH THE PINK RIBBON FOR BREAST CANCER, PURPLE FOR ALZHEIMER’S, AND THE LIST GOES ON. SOMETIMES IT SEEMS THE RIBBONS ARE JUST THAT, THEN IT MOVES ON TO THE NEXT CAUSE UNTIL WE ALLOW IT TO SLIP INTO THE BACKGROUND. IT IS NOT TO SAY THAT AIDS IS OF MORE IMPORTANCE THAN ANY OF THE OTHER DISEASES THAT MANY OF US DEAL WITH ON A VERY PERSONAL LEVEL, BUT, IT IS A DISEASE OF EQUAL IMPORTANCE, AND ONE THAT SHOULD BE ALLOWED TO TALKED ABOUT OPENLY AND DISCUSSED. IT SHOULD NOT TAKE ONE LONE VOICE, OR A MYSTERIOUS ILLNESS OF SOMEONE SUSPECTED TO HAVE AIDS, FOR US TO BE ABLE TO RECOGNIZE HOW IT HAS AFFECTED OUR LIVES. MAYBE IT IS ONE OF THOSE THINGS THAT UNLESS WE ARE AFFECTED DIRECTLY, IT DOES NOT MATTER. MAYBE THAT IS HOW IT JUST IS, OR MAYBE YOU HAD JUST RATHER ME JUST SHUT UP ABOUT IT. AFTER ALL, WHAT DIFFERENCE WILL IT MAKE??? A 20 YEAR DIFFERENCE FOR SOME, THAT’S THE DIFFERENCE IT MAKES. FOR OTHERS MORE, OR LESS. THIS JOURNEY OF 20+ YEARS, AND THE DECISION TO BE OPEN ABOUT IT, WAS IN PART MY MISSION TO TRY AND MAKE A DIFFERENCE. ON SOME LEVELS, THAT HAS BEEN ACHIEVED.
AFTER ALL THESE YEARS, THERE ARE SOME PEOPLE TODAY, WHO, SEEM TO HAVE NEVER HEARD ABOUT THE BIG ANNOUNCEMENT OF 20 YEARS AGO, I MADE THAT SPLATTERED ACROSS THE FRONT PAGE OF THE NEWSPAPER. MAYBE IT WAS NOT A BIG DEAL AFTER ALL. MAYBE SOME THINGS ARE EASILY IGNORED, AND/OR FORGOTTEN.
THE CYCLE OF LIFE AS WE KNOW IT LASTS MANY YEARS FOR SOME, NOT SO MUCH FOR OTHERS. IT IS WITHIN THIS CYCLE THAT WE EITHER GO ALONG MAKING THE MOST OF IT, OR, JUST MERELY GO ALONG. THERE ARE LESSONS WE HOPEFULLY LEARN ALONG THE WAY, AND FOR MOST, WE HOPE WE MAKE AN IMPACT WHILE WE ARE HERE. WHAT WILL OUR LEGACY BE ONCE WE HAVE PASSED THROUGH THIS LIFE? WILL WE HAVE SHOWN LOVE AND COMPASSION TO OTHERS… AND, TO OURSELVES? WILL WE HAVE BEEN WHO WE COULD HAVE BEEN? WILL WE HAVE MADE ANY KIND OF DIFFERENCE? WE DON’T ALL HAVE TO BE WELL KNOWN TO MAKE A DIFFERENCE. WE SOMETIMES JUST HAVE TO TAKE LIFE’S CIRCUMSTANCES AND USE THEM AS EDUCATIONAL OPPORTUNITIES, THEREFORE, MAKING AN IMPACT, AND A DIFFERENCE. SUCH HAS BEEN THE CASE WITHIN MY LIFE CYCLE. THE JOURNEY HAS NOT YET ENDED, I DO FEEL HOWEVER, UNLESS THERE IS SOME MAJOR BREAKTHROUGH, THERE IS MORE OF THE JOURNEY BEHIND ME THAN WHAT IS AHEAD. EVEN WITH THAT, I CAN SAY I AM AND HAVE BEEN BLESSED FAR GREATER THAN MANY OTHERS. I ADMIT I HAVE OFTEN THOUGHT OF WHAT MY LIFE MIGHT HAVE BEEN WITHOUT AIDS BEING A PART OF IT. HAVING LEARNED TO ACCEPT IT AS SOMETHING THAT MOST LIKELY WOULD TAKE MY LIFE, TO LEARNING HOW TO LIVE AGAIN AFTER BEATING THE PROGNOSIS I WAS GIVEN ON THAT CRISP OCTOBER DAY BACK IN 1991, NOW BY 14 TO 16 YEARS, AND LEARNING TO ACCEPT MYSELF, AND MY PART IN ALLOWING MYSELF TO BECOME INFECTED. OF LEARNING HOW TO FORGIVE OTHERS, MYSELF, AND STILL BELIEVING THERE IS A REASON FOR IT ALL. IT HAS ALLOWED ME TO BECOME MORE SPIRITUAL, AND MY RELATIONSHIP WITH A GOD I BELIEVE IN, HAS BECOME ONE OF A DIFFERENT LEVEL THAN BEFORE MY DIAGNOSIS . IT HAS ALLOWED ME A DIFFERENT VIEW OF DEATH, AND EVEN THOUGH IN THE EARLY DAYS OF MY ILLNESS I DID GO AHEAD AND MAKE A PRE-ARRANGED FUNERAL PLAN, AND HAD A HEADSTONE PLACED IN THE CEMETERY NEAR WHERE I GREW UP, DEATH, AND LIFE, ARE VIEWED IN A DIFFERENT LIGHT. IT HAS NOT ALWAYS BEEN EASY, AND EVEN TODAY, 20+ YEARS INTO THE JOURNEY, IT, AT TIMES, STILL DOES NOT FEEL LIKE MY OWN LIFE I AM DISCUSSING. I TAKE MEDICINE EVERY DAY TO TREAT THE DISEASE, I ADJUST TO THE CHANGE OF MY PHYSICAL LOOK THAT AIDS CAUSES, I GO IN TO THE DOCTOR QUITE OFTEN TO HAVE BLOOD DRAWN, THAT DETERMINES THE PROGRESS OF THE DISEASE, WITH A T-CELL COUNT, VIRAL LOAD, ETC., SO AS TO DETERMINE THE COURSE OF TREATMENT TO KEEP THE DISEASE IN CHECK.
MAYBE IT’S A COPING MECHANISM TO THINK OF IT AS A DISEASE THAT SOMEONE ELSE IS DEALING WITH, AND NOT AS ONE I HAVE MYSELF. I, BY NO MEANS AM IN DENIAL ABOUT IT, FOR I ACCEPTED IT SOME TIME AGO AS SOMETHING I CANNOT CHANGE, AS FAR AS MAKING IT GO AWAY. I HAVE LEARNED IT IS NOT WHAT MY WHOLE LIFE IS ABOUT, YET, IT IS SOMETHING I MUST ACKNOWLEDGE, EVEN IF I HAD NOT DECIDED YEARS AGO TO PUT MY FACE AND NAME TO THIS GLOBAL EPIDEMIC. I HAVE FOUND MOST WHO KNOW THE TRUTH ABOUT ME , ARE NOT ABLE, OR PERHAPS NOT QUITE SURE HOW TO APPROACH ME ABOUT THE DISEASE I HAVE. FOR MANY IT IS AN UNCOMFORTABLE SUBJECT, BECAUSE OF FEELINGS ABOUT HOW I BECAME INFECTED, OR, OF FEAR THAT I WILL NOT BE ABLE TO HANDLE THE QUESTIONS SOME WOULD LIKE TO ASK. THAT’S WHY THE EARLIER COMMENT WAS MADE REGARDING CANCER, HEART DISEASE, ETC. THEREFORE MAKING AIDS AN AWKWARD SUBJECT TO APPROACH, UNLIKE OTHER DISEASES. IT WAS A PART OF THE MISSION TO BRINGS AIDS OUT OF THE DARKNESS AND SHAME IT TOOK TO ADMIT HAVING SUCH A DISEASE, TO BRING IT TO THE FOREFRONT, AND MAKE IT AN EASIER THING FOR OTHERS TO TALK ABOUT, ASK QUESTIONS, AND TAKE AWAY SOME OF THE STIGMA ATTACHED TO IT, AND THOSE LIKE MYSELF, WHO HAVE THE DISEASE. ONE THING I HAVE FOUND THAT IS HARDEST FOR PEOPLE TO COME TO TERMS WITH, IS THE FACT OF HOW PEOPLE BECOME INFECTED. IF THEY CAN GET COMFORTABLE WITH THAT ASPECT, THEY CAN, IN MANY CASES DEAL MORE EASILY WITH AIDS ITSELF. WE LIVE IN A SOCIETY IT SEEMS, WHERE, AS LONG AS YOU DON’T BRING THE SUBJECT UP AND TALK OPENLY ABOUT IT, IT IS EASIER TO DEAL WITH. THIS IS NOT ONLY WITH HIV/AIDS, BUT MENTAL ILLNESS, SUICIDE, HOMOSEXUALITY, AND MANY OTHER SUBJECTS THAT WE HAVE KEPT QUITE ABOUT FOR THE MOST PART, DUE TO OUR RELIGIOUS UPBRINGING OR BELIEFS, OR JUST BECAUSE ITS TOO UNCOMFORTABLE. ON THIS JOURNEY, AND IN MY PUBLIC EDUCATION PROGRAMS, OR AS A PART OF MY EVERYDAY LIFE, I TRY TO BE OPEN WITH ALL THOSE THINGS, AND TRY TO MAKE PEOPLE COMFORTABLE ENOUGH TO TALK TO ME, OR TO BE ABLE TO BRING ABOUT A CONVERSATION/DISCUSSION ABOUT SUCH ISSUES, IN THEIR OWN LIFE, OR TO QUESTION ME ABOUT THEM AS WELL. IT HAS BEEN SAID OF ME THAT I SOMETIMES APPEAR TO HAVE A WALL OF PROTECTION UP AROUND MYSELF, AND HAVE AN ALMOST LACK OF COMPASSION. AS FAR AS THE WALL, PERHAPS THAT IS SOMEWHAT TRUE, AS I HAVE LEARNED TO SHIELD MYSELF FROM THE HURTFUL THINGS PEOPLE HAVE SAID AND DONE TO ME AFTER LEARNING ABOUT MY LIFE, AND, THE WILLINGNESS I HAVE TO BE OPEN WITH MY THOUGHTS AND SELF. AS FOR THE LACK OF COMPASSION, I FEEL ITS NOT LACK OF COMPASSION, RATHER, IT IS MAYBE LESS TOLERANCE FOR THE THINGS OTHERS FIND TO COMPLAIN AND WHINE ABOUT, THAT SEEMS A WASTE OF ENERGY, WHEN IT COULD BE USED IN A MORE POSITIVE MANNER, OR TO TRY AND SEE IT FROM THE VIEW OF SOMEONE, WHO, IS DEALING WITH A CHRONIC ILLNESS, OR LIFE THREATENING SITUATION, AND ARE TRYING TO MAKE EVERY MOMENT COUNT. IT IS SEEN AS SOMETHING THAT REALLY DOESN’T MATTER IN THE BIG SCHEME OF THINGS. SOME PERHAPS SEE IT AS LACK OF COMPASSION, FROM THAT STANDPOINT, WHEN IN FACT, IT IS NOT, AS I SEE IT AT LEAST.
102491, PROBABLY JUST A SILLY THING TO REMEMBER AND JUST NUMBERS ON PAPER TO MOST, BUT, HAS BEEN A GROUP OF NUMBERS THAT STUCK AS A REMINDER, AND, THE START OF MY JOURNEY FOR THAT THEN 29 YEAR OLD MAN FROM THE FARM TO REALIZE HOW LUCKY AND BLESSED I HAVE BEEN AND CONTINUE TO BE. WHAT A JOURNEY IT HAS BEEN, AS I LOOK TO THE NEXT STEP ON THIS JOURNEY, MY JOURNEY, OF GROWTH, OF LOSS AND SADNESS, OF HOPE, OF MILESTONES, AND REMEMBRANCE. LIFE, ITSELF, IS A JOURNEY I SUPPOSE WHEN YOU THINK ABOUT IT, AND OF HOW EVENTS, SITUATIONS, DECISIONS AND SUCH AFFECT US ALONG THE WAY, REGARDLESS OF A DISEASE LIKE HIV/AIDS OR NOT. THERE ARE MANY THINGS IN LIFE THAT MAKE US UNCOMFORTABLE AS FAR AS HAVING TO DEAL WITH ISSUES AND/OR DISEASES, AND IT IS USUALLY AFTER THE PASSING OF THOSE WE KNOW THAT WE TRULY REFLECT ON THAT PARTICULAR PERSON, AND THE THINGS THEY DID OR DID NOT DO WHILE ON THIS EARTH, AND MAKING IT EASIER FOR US TO DISCUSS THEM, AS THEY ARE NO LONGER HERE TO RESPOND. WITH MY JOURNEY, I PERHAPS MAKE PEOPLE UNCOMFORTABLE TO DEAL WITH, AND MAY BECOME ONE OF THOSE PEOPLE WHO GETS DISCUSSED ONCE I’M GONE, BUT, I SOMEHOW GET THE FEELING I HAVE BEEN, AM, AND WILL BE DISCUSSED WHILE I’M STILL HERE. MAYBE NOT WHERE I CAN HEAR ABOUT IT, BUT, NONETHELESS, THE TOPIC OF DISCUSSION, BUT, THAT’S OKAY.
IT WAS ONCE SAID, THAT WHETHER WE REALIZE IT OR NOT, WE ARE ALL AFFECTED BY HIV/AIDS. THAT YOUNG MAN WHO BECAME THE FACE OF AIDS, BACK IN THE DAY, KNOWS THE AFFECT FIRSTHAND, KNOWS I WOULD STILL DO IT AGAIN, IF A DECISION WERE NEEDED TO BE THE ONE TO STAND UP AND SAY, HIV IS HERE, AND TO BE ONE OF THE FIGHTERS, JUST LIKE I DID WITH THE PHONE CALL ON 102491. I DID NOT KNOW IN THAT MOMENT 20 YEARS AGO, AS MY WORLD SEEMED TO FALL APART AROUND ME, THAT I WOULD BE THE ONE TO MAKE THE STAND WHERE OTHERS KNEW ME, WHERE IT SEEMED MANY FELT HIV AND AIDS WOULD NEVER BE THEIRS TO DEAL WITH. IT WAS IN THIS PROCESS, AND ON THIS JOURNEY I’VE BECOME THE STRONGER PERSON BECAUSE OF IT. I PUT MY LIFE ON DISPLAY FOR OTHERS TO SEE, JUDGE, AND TALK ABOUT, TO MY FACE, AND BEHIND MY BACK. I’VE STOOD UP, EVEN WHEN IT HAS NOT BEEN EASY, OR POPULAR. SOMETHING THAT MOST OTHERS CANNOT SAY THEY HAVE DONE, ESPECIALLY IN SUCH A SMALL, RURAL PLACE LIKE GAINESBORO, AND IN SPITE OF WHAT OTHERS MAY THINK OF ME. LIKE IT OR NOT, I MADE A DECISION ALL THOSE YEARS AGO, TO BE A VOICE FOR MYSELF, AND OTHERS LIKE ME. ALMOST 25 YEARS IN THE MAKING, THIS MAN IS A SURVIVOR………………
THIS MAN IS ME.
It has been five weeks since I shared my bout with depression with all of the world and I figured maybe it was time to give a little update on all of that.
Well first off let me say, I am feeling much better! I haven’t broke down in tears for at least three weeks and that is pretty huge considering I was crying everyday for pretty much no reason at all. Actually, let me stop fibbing. There were a couple of reasons I was able to come up with.
At first, I thought one of the reasons was really dumb until I told my therapist about it and she told me it wasn’t dumb, that it was “normal” and that I wasn’t crazy for feeling so extremely sad. You see back in January when I wrote my post about dating with HIV there was one guy in particular that I really, really liked! I mean, I really liked him. I was super excited about him because he was different than all of the guys I had ever dated before. We did different things, we went to the movies, coffee shops, church, grocery shopping, out to dinner, out to dinner with his friends, we went to his parents house, we texted each-other everyday and we talked for hours. Yea I get those things may not seem so different but the difference was we were never physical. We never even kissed each-other. We were also brutally honest with each-other about EVERYTHING. I honestly believed he would be different than any guy I had ever dated before. I truly respected what he was going through and was thoroughly enjoying the friendship we were building. Then one day out of the blue he called me and said he could no longer see me. This broke me. I am usually very careful with men and I usually treat them as suspects who have to pass a rigorous test proving their good intentions, but in this case I was 100% sure he was an honest man who would not let me down. I carelessly let down all of my walls and let him in only to be crushed. I am only now getting back right from this experience.
The second reason I was able to come up with was that I came to the harsh realization that I was not as important to one of my very best friends as I thought I was. In life you will only make about a handful of friends that you will want to keep close to your heart for your entire life and when you realize that you are not as important to them as they are to you, it is heart breaking.
Thanks to my awesome therapist and my amazing family and friends, I am feeling much better and am looking forward to even brighter days ahead.
Rachel is finally roaring in the face of her days again.
February 9th, 2012
I was diagnosed HIV positive.
I was in a bar with no friends just a Guy I’d been talking to who also was HIV positive. But he isn’t who I contracted it from. In 2008 my life partner left me. In the wake of that disaster I met the most amazing human being I could have ever met. He was perfect. Even though he was in a long distance relationship with someone else we started sleeping together. I didn’t care that he was in a relationship, I wanted him. We always used condoms until one night he just wanted it to feel natural and I was so blind I said yes. I fell in love with him… Blindly in love… He left… Moved out of town to live with his partner. He convinced me that he loved me and that he was with his boyfriend for money. So we continued the charade. As life went on I tried to move past him and honestly never did… February 9th I was diagnosed. I called him to tell him. He consoled me and offered a shoulder. A week later he tells me he’d been diagnosed a few months prior but didn’t know how to tell me… Obviously it destroyed our friendship. I tried not blaming him, but no matter what I couldn’t… He wouldn’t even take blame for it. He tried to convince me that we’d obviously contracted it from different people. Yet he was the only Guy I have ever NOT used a condom with.
My name is James and this is my story of HIV.
I am a normal man just like any other, and like a lot of men these days, I had an attraction and a like for both sexes. I enjoyed sex often with both sexes. For 6 years I indulged in bi sexual encounters. Never worrying on whether or not I should use protection. Thinking I was invisible, that nothing bad would happen to me.
Most recently l became very tired all the time. I started to feel some flu like symptoms and knew something wasn’t right. I decided to go to the doctor and get checked. After some testing, the doctor came back with the news. He told me I have AIDS. I was devastated, even crushed. How could this have happened to me?
I couldn’t tell my family because of their conservative nature. I couldn’t tell my friends for fear of what they may say or think about me. I wad at an all time low. I lost the want or will to live. I was at the end of my rope but still kind of hanging on. I wondered if I found someone to tell, to confide in, would I maybe not feel so shattered and helpless? I reached out to a girl I just recently met. A person I didn’t know that well. I needed to tell somebody. I needed to get out some of this sadness and anger. Little did I know that girl would help me. She would help me to regain my will to live by showing me the love and affection of true friendship. She helped me to realize my life was not completely over, just changed. And now, rejuvenated, I want to share my story with everyone.
I want everyone to know that even when you’re down and low and think it’s the end, don’t give up. Don’t throw in the towel. Reach out to someone for support. don’t forget that this is not only your struggle and your fight. There are others who love you and want to see you through. For those with HIV I encourage you to take your medication on time, all the time. Please don’t give up, there are so many ways to get help and support. Thank you for reading my story. I hope you pass it on to others so that they may also be informed.
It took me awhile to decide to share this part of my journey. It seems ridiculous that I would be so open about my HIV diagnosis but so ashamed and embarrassed to come out and say that I am clinically depressed. I know that sharing my journey with HIV gave me strength and helped me to start the healing process. The emails I have received since starting this blog have been phenomenal. All the way from people newly diagnosed asking for advice to people needing a pep talk because they were scared to go get tested. I know from the emails I have received that I am not the only HIV positive person suffering from depression. Hopefully by sharing this part of my journey I will help someone else feel not so alone.
A couple of days ago I was asked to speak at a woman’s retreat this coming September. Specifically, I was asked to speak about a significant life experience and how I came out on the other side/better side of it. Although I am still in the process of trying to figure out exactly why I am feeling so depressed my hope is to have this under control by September so that maybe I can inspire some of the women at the retreat who may be feeling the same way I am to seek help. No one deserves to feel this way and no one should have to deal with this alone.
Just this week I went to see my therapist and she said I was sadder than she has ever seen me before. It is hard to believe that I could possibly be anymore sad than when I found out I was HIV positive and my life would forever be changed.
Thinking back to the first six months of my diagnosis I guess I would describe that as a mourning kind of sadness. Much like the stages of mourning the loss of a loved one. 1.) Denial and Isolation, although I never really expierenced any denial about my diagnosis, I most definitely did isolate myself. For several months I only spoke with a very select few people. The less people that knew, the less I had to deal with the emotions, stigma, pity, and all of the things that come with telling people you are HIV Positive. 2.) Anger, Oh the anger… I felt rage in my soul that I never knew existed. I literally wanted to break things. I once had the opportunity to throw some dishes at a brick wall and honestly it felt so relieving! In fact, I would do it again if given the chance. Sometimes I would scream at the top of my lungs while driving (so no one could hear me of course), and sometimes I would just cry, because that is what I mostly do when I am angry. 3.) Bargaining, If only I would have used protection… 4.) Depression, Of course I was depressed when I found out, although it is nothing like the kind of depressed I am now… 5.) Acceptance, I do believe for the most part I have accepted that I am HIV positive, but I know I still have a ways to go.
I am hoping that within the next few weeks of seeing my therapist and coming up with a plan to get out of this funk I can start to get the old Rachel back. Quite frankly I’m tired of crying and worrying about things that aren’t even happening or may never even happen.
I want to be the Rachel that wakes up and roars in the face of the day and does everything she possibly can to make a difference. Not the Rachel that swirls about in a black cloud.
Recently I took notice of how many Facebook friends I have compared to how many of my friends have liked my WeAreHIV.Org Facebook page and it dawned on me that the people who did not take the time to “Like” my FB page are probably scared of the Stigma that may be attached to “Liking” a FB Page dedicated to HIV & AIDS… That or they really just don’t care about a girl on a mission to single-handedly end the HIV/AIDS Virus. OK, OK, I realize I will probably not be able to end the spread of HIV. But hey! A girl can dream. I’ll admit, it kind of hurt my feelings at first, then the more I thought about it, the sadder I became. Not because I’m missing out on 144 “likes” (which would put me well above 500) but because they are probably the same people who think this could never happen to them…
Maybe they are married or in a committed relationship or maybe they just think they are invincible. Well let me tell you that is most definitely not the case. I don’t want to scare anyone. (Well, maybe I do want to scare you just a little bit. I mean sometimes a good scare can really get you thinking in the right direction!) Let me tell you a story about my first group meeting. I was absolutely appalled when I went to my first meeting for positive heterosexuals and met married couples who had been married for years and one of them cheated on the other and brought home a little gift called HIV (Insert Sarcasm). Not only by cheating on their spouse but some also brought it home because they were using drugs and sharing needles. It is sickening to me because if there is one place you should feel safe and not have to worry about contracting HIV it is in your marriage. But, human beings are not perfect and it does happen.
That my friends is why everyone should get tested.
Knowing your status is better than not knowing your status. Some of the people I met ended up getting really sick when they were first diagnosed because they had been married for 20 plus years and no one thought to check for HIV. Some of them had full blown AIDS by the time they figured out what was wrong with them. Most of them are lucky to be alive today!
Please do not let the Stigma scare you away from educating yourself and the ones you love. Don’t let your loved ones say, “I wished someone would have talked about HIV with me. “
Don’t forget: We Are HIV.