HIV Tests: One Mother’s Nightmare

July 30, 2012

I was twenty years old when I told my mother and family that I was HIV+.  I’m not sure what I was thinking, but I hoped that they would hug me and tell me everything would be all right.  I was wrong.

You dumb bitch!  What were you thinking?  That’s what you get for sleeping around!

I walked past my sisters’ room to mine and closed the door behind me.  A warm breeze blew in from the gulf through the open bedroom window.  I pulled the curtains aside and pulled open the second and third drawers before I found a black leather belt.  I wasn’t sure how to use it, so I looped it around my neck and pulled it tight.  I woke up on the floor.  I was 16.

DREAMS & DISPAIR

I am a beautiful black African American girl with dreams.  My dream was to graduate high school and model on Tyra Banks show before becoming a registered nurse.  That might seem funny to some but, from where I’m from, that was a big dream.

If you ask people who know me, they’ll say that I take things too serious – and maybe I do.  When my siblings celebrated their teens, I acted like an old lady.  I avoid the clubs, large parties and noisy crowds.

Elementary and middle school were my favorite years.  I remained on the honor roll until high school, when puberty kicked in and the boys began to notice me.  Before that, I was a skinny girl.  The boys didn’t want to get with me – they were busy chasing the ones who developed ahead of me. 

I fell for a boy who lived in my neighborhood, but fell out of love when I knew that he only wanted sex from me.  I don’t blame my mom for my bad decisions, but I wish she’d been there more for me. 

The situation with my dad really taunted me – and still does.  The man my mom claims to be my dad hates me.  He used to say, “I’m not your dad – go find your dad!”  His name isn’t even on my birth certificate.

My childhood was rough but, some might say, bittersweet.  I played basketball in middle school and got involved in several after-school programs, but I never had anyone who I could call a “role model.”  I never knew anyone who I thought I could look up to.

Writing this story helps me see how crazy my life has been, but it’s my life and it’s made me into the person I am today.

As I became a young woman, I allowed my looks to get the best of me.  I became obsessed with the mirror.  When my body finally began to develop, I got a lot of attention but wasn’t interested.  I wanted to be a model and asked my mom if should could help me go on the Tyra show.  She was totally against it.  To me, it seemed then that she kept getting in the way of my dreams.  I know better today. 

When I was 16, I became sexually active with someone who didn’t tell me had a sexually-transmitted disease (STD).  Shortly after that, I became weak and nauseous, and felt a painful burning sensation between my legs.  I went to the local clinic and a nurse told me that I had contracted an STD.  I was shocked – I never imagined that it could happen to me.  Before I could recover from the news, the nurse said I should get an HIV test.

Without knowing any better, I agreed.  She drew some blood and briefly described how the test she thought the test worked.  Her explanation didn’t come close to the information contained in the package inserts.  It seemed that she only repeated what the marketing advertisements said.  She wrote a prescription and said she’d call when the test results came in.

I picked up my prescription at Walgreens and walked home in a daze.  I cried the rest of that day and all night.  I didn’t go to school and spent all day in my room.  I felt weak and depressed.  I had no appetite.  How could this happen to me!  My baby sister knew something was wrong.  She heated some soup and ironed a wet rag for my headache.

As the days followed I began to feel better.  I’d forgotten about the HIV test until the nurse called me a week later.

She said, “We need you to come in immediately.”

Without saying my prayers, I rushed to the clinic terrified by what they might say.  The nurse handed me a piece of paper and asked me to verify my personal information.  She then carefully pointed to the paper where it said, “positive.”

Reading that death sentence, I knew that my life was over.  Another nurse joined the first and watched as I broke down.  I will never be normal, I will never be healthy, and I will never marry or have children…

“You don’t need to be focused on that,” she said.  “You need to get help and start treatment immediately!”

I don’t remember much of what happened after that.  I walked home.  I said nothing to my mom, siblings and friends.  Later that night, I went into the kitchen and pulled a butcher knife from the drawer and returned to my bedroom.

When my baby sister fell asleep on my shoulder, I thought very hard about stabbing myself.  I wept silent tears and thought about what she would see when she awakened the next morning.  Instead, I laid down on the knife – thinking that it might be less painful if it cut me in my sleep.

The next morning, I awoke with no cuts or bruises – just had more bad thoughts.  I didn’t know it then, but the nurses planted a psychological seed that was designed to completely take over my soul and life. My death sentence never left my mind.  It consumed my mind and my soul, which further isolating me from my friends and family.

But as the days passed into weeks, I noticed that I wasn’t getting sick.  I wasn’t dying.  I was as healthy as I ever was.

Nevertheless, I dropped out of high school and gave up on my dreams.  I still wanted to go on Tyra Banks and model, but I was afraid I would fail.  I started to work on part-time jobs.  Despite my death sentence, I hadn’t yet given up on life.

For the next three years, I felt great physically and never sought treatment.  I had good and bad days.  I gave myself to God and asked Him to take care of me.

My income was too small to get a place of my own, so I lived from pillow to pole for three years.  My brother-in-law let me stay with him and my sister.  At that time, he was the only person I told about my condition.  He helped me through a lot of bad days.

Maybe it was the posters on the clinic walls or the advertisements in the local paper but, for some reason, those messages and the psychological seed that the nurses planted in 2006 began to grow.  I eventually convinced myself that, without treatment, I was going to die. 

I returned to the clinic in 2009 and asked for help.  They never told me that the tests were unreliable.  They never said that the illness that brought me to the clinic in 2006 could have caused a false positive on my first HIV test.  They never said that I should take a confirmatory test, nor did they say that the confirmatory tests are as unreliable as the first test they gave me.

Instead, they set me up with an “AIDS specialist,” who enrolled me in the Ryan White and AIDS Drug Assistance Program (ADAP).  The specialist never diagnosed me – she just made notes as I answered her questions.  I assumed that she got a copy of my test result from the clinic where I was tested.  Instead, she got more blood from me and told me about my “viral load” and “CD4 count”.

She also convinced me to take a drug called Atripla, but never warned me about how it would make me sick by attacking my liver and kidneys.  She never said that one part of the drug, Sustiva, would mess with my mind.  She never told me about any of that.

Right away, I didn’t like the way it made me feel.  It took away my strength, my eating habits, and my well-being.  My arms, legs and back started to hurt and I started to not like who I was.  I descended into a hell where I had no life, no past or future.  It was just me, my constant physical and emotional pain, HIV, AIDS, Atripla, and the clinic.

When I was at my lowest, I interrupted the drugs and gave myself to God.  What is it about those three stupid little letters “HIV”?  What makes them so powerful?  Today, it’s hard to imagine how anyone can be foolish enough to let them rule their lives.  I now realize that their only power comes from those who surrender to it. 

I now know that the drug companies and the government have poured billions of dollars into those three letters.  Alone, those letters mean little, but when repeated by people in white coats at an AIDS clinic, those letters can have a huge impact in the minds of vulnerable people whose minds are conditioned by years of schooling, church sermons, magazines and billboards.  And when your mind is prepared to believe it, your body is also prepared to believe it – even when no sign or symptoms of it exist.  Had I not found God, I would be dead today.

No one ever told me how poisonous Atripla is.  The nurses just said I was sick and that I should take it.  I later learned that the drug – a combination of tenofovir, emtricitabine, and efavirenz – not only cause diarrhea, nausea, fatigue, headache and dizziness, but they also destroy your liver and immune function and cause depression and suicidal thoughts.  When I complained about the way the drugs made me feel, they said that the HIV (not the drugs) was making me sick.  I was stupid and believed it, but the clinics are full of ignorant people – not because they are stupid, but because the drugs and nurses make them stupid.  Without vulnerable, gullible and poorly-educated people, those clinics would be empty.

But even then I thought to myself, if I have HIV, why would they give me drugs that make me sick and make me want to kill myself?   It made no sense.  They never told me about the drug.  I didn’t read the package insert until after I stopped taking the drug.

Atripla was my worst nightmare.  It had so much hatred towards my bones and my body. I started off taking the whole pill the first month.  For the first 30 days, I felt like crap. My bones ached so badly I could barely walk.  Before that drug, I was healthy.  I could run, walk and do so much on my own.  That drug crippled me. 

When I complained to the nurse that Atripla was making me sick, she said that the symptoms I felt was only the HIV and that Atripla had nothing to do with it.  Even then, I had the feeling that she was either ignorant, or she lying to me.  That’s when I stop listening to the nurse and stop taking the Atripla.

I cut the drug in half to see what would happen.  Some of the symptoms subsided for a while.  I returned to the clinic where the nurse read my latest lab results, which indicated that my CD4 count was high and my viral load was good.  I thought this was all good news, still blinded from the truth.

Within a few days, I felt brand new!  My legs felt great and I started to eat again.  Within a few weeks, regained my healthy weight and my energy returned.

I discovered that when dealing with this type of crisis, your surroundings and environment play a big part in your health.  When I lived with my sister and her boyfriend, I got the support and nutrition I needed.  I ate right, exercised, and worked on my joints in their pool.

For one month, I didn’t touch the Atripla.  I felt better than I had in years.  But strangely, my mind started to talk to me again.  The fear returned and I somehow convinced myself that if I didn’t take the pill I would die.  At the time, I didn’t know that Atripla contains a psychotropic drug (efavirenz) that can be smoked like crack cocaine.  I didn’t know that bad feelings are part of going through withdrawal.

I returned to the clinic and asked the nurse what CD4 count I needed to be free from HIV.  She said, with a small giggle, that patients want a CD4 count as high as they can get it but that it should never fall below 200.   For the next few months, everything seemed to be going great, but not knowing what my CD4 count frightened me.  The nurse also seemed angry when I didn’t take my Atripla and missed my appointments.

I met Sean (not his real name) in 2009.  Because of the HIV test and the drugs, I wasn’t sexually active, which gave us a chance to get to know one another.  As our relationship developed, I never mentioned “my condition.”  I didn’t want him to leave me.   But as time passed, I knew that I had to tell him.  For better or worse, I was prepared for him to stay or leave.

Things went very bad when my family learned that I was HIV+.  Until then, I took care of myself the best way I knew how.  When they found out, my family didn’t wrap their arms around me or say that I was going to be fine.  Instead, they blamed me.  When that and the drug withdrawal, I fell into a terrible depression and the suicidal thoughts came back.

If I never needed God, I needed him then.  That was the night I wrapped the belt around my neck.  When I awoke, I took the belt from around my throat.  I got up, opened my Bible and began to read it, crying out to God.

I was lost.  I knew then that the clinic had taken my sanity, my dreams, my character, my life from me.  Now it was clear that they had even taken my family from me.  I was alone.  No one wanted anything to do with me.  My doctor didn’t want to question the results of my test. She just drew blood and wrote up my prescription.  She also prescribed medications for my suicidal thoughts and depression, which I now know also cause suicidal thoughts and depression.  I trashed them all.

After many missed visits, I returned to the clinic to be retested – the same clinic that kept all of my other medical reports and labs.  I hoped that this time the test would be different.  The nurses drew blood from my arm and told me to wait in the hallway.  As I waited, the same old feelings of shame came over me and I prayed for a miracle.  I hated the clinic so much that I usually disguised myself during visits.

There was no miracle.  The nurse sat me down in her office and said, “I’m sorry Miss, but your results came back positive again.”  This time, she didn’t have any papers for me to see my results – she just said what they were.  I was angry with myself and started to leave.  But before I left the nurse stopped me and said, “You haven’t been here for months.  Are you taking your meds?”

“Yes,” I lied.

She then produced my file and said that my Ryan White and ADAP support had expired.  I allowed her to re-enroll me just so that I wouldn’t have to argue with her anymore.

In 2010, my family began to soften and treated me better.  I spent Christmas Day with them and Sean called to say that he wanted to spend Christmas with me. 

I broke down crying because he deserved to know and I couldn’t keep it from him any longer.  I was still crying when he picked me up, and Sean knew something was wrong.  We drove to his house and I sat on his couch, but no words came out.  I couldn’t breathe, terrified that he would reject me – just as so many had since 2006.  I couldn’t talk, so I wrote it down on a piece of paper.

It’s a crazy way to tell someone you’re “HIV positive” but it worked for me.  Before I wrote the V, he grabbed the note and balled it up.

I never saw a man cry before and I never saw him act like this.  He seemed angry and frustrated but didn’t look at me as he paced back and forth in the living room.  For the first time, I was afraid he was going to hurt me.  He then grabbed my hand, gently, and we went into the bedroom and prayed.  We made love.  He later tested for HIV – his results came back negative.

During the next year, I decided to separate myself from him.  I loved him, but I wasn’t sure that he was the right man for me.  We chatted occasionally, but I kept all communications with him very brief.  When we talked, he often said that he’d find a way to cure me of HIV.  I brushed him off, thinking that he was just playing games with me.  Eventually, all communication with him came to an end.  I just went back to living my life and working, trying to survive.

I’m not sure why but, even after I stopped visiting the clinic, I still didn’t appreciate how the clinic and the “HIV test” had destroyed me mentally and sociably.  But as damaged as I was, I never gave up on myself.  Some days, I’d wake up trying to hurt myself.  I had crazy thoughts to get on drugs.  I thought about stripping, even prostitution.  My mind was still held captive by withdrawal and the stigma and fear of “HIV” and death.

But despite all of the crazy stuff that entered my mind, I never gave up on myself totally.  God gave me a lot, but he never gave me the desire to really carry out those crazy thoughts.  For the next two years, I went back on the Atripla and depression medication.  Work helped to keep out the mental distractions, HIV and suicide.  Being around others helped me think straight.  Being alone only got me into trouble.  I put my trust in God – God helped me through it all.

After four years of moving around, another government program got me a place to live.   An HIV caseworker thought it would be best for me to live in my own place.  I accepted the apartment not because I thought I had HIV, but because I needed a place to live.

When I moved into the apartment, I isolated myself from a lot of people.  I created a safe, healthy and cheerful place for myself.  The case manager who visited me was impressed by how well I was doing.  She asked if I wanted to hang out, but I told her that I didn’t want to.

When people learn about your personal medical “condition,” they usually count you out.  Most had considered me dead.  They gave up on me, tore down my character, and talked bad about me.  The stigma of HIV took away my sense of self.  It isolated me, taking away my social life with my family.

NEW INFORMATION

When my birthday came in 2011, Sean and I were re-united.  He was very excited and happy – he had much to tell me. 

He began to tell me things about HIV and AIDS that I had never heard.  He showed me videos of Peter Duesberg, David Crowe, Karri Stokely, Clark Baker, and many others who know the truth behind HIV.  Of everything I read and saw, the documentary House of Numbers (2009) really did it for me.  After watching that video, I got rid of my HIV pills and decided that my mind, body, and soul deserved better.

From that day forward, I gave myself the best gift of all – HEALTH.  It all suddenly made sense to me as to why I was so rebellious against those drugs.  I learned that HIV drugs like Atripla were slowly dissolving my bones, destroying my liver, my kidneys, and my immune system.  The nurse never told me that the drug caused other dangerous reactions like neuropathy.  She never said that the drug would mess with my mind.  I stopped all of the HIV drugs and doctor visits.  I was done with all of that HIV-AIDS crap.  The more I read about the scam, the less of a grip HIV had on my mind.

Eventually, I recovered everything they took away from me.  Once I got over the terrible withdrawal from Atripla (efavirenz), my depression and suicidal thoughts ended.  My anger against my friends and family also ended. 

After I moved in with Sean, we became intimate.  We don’t use protection and we got pregnant.  I made it through my nine months of pregnancy without having to be drugged with those HIV medicines.  We found a midwife who knew nothing about my so-called “HIV-status”.  They recommended that I get tested for my baby’s sake but I opted out.  They weren’t forceful about it – they were just curious as to why I wouldn’t get tested.  They didn’t understand that I just didn’t want to endanger my unborn child with those toxic drugs.  I told the midwife that with me being pregnant and not married, my chances of testing positive was high. I told her that the tests are used to entrap people like myself.  She said that, “if I loved my baby” I would do it anyway.  I politely said that I loved my child very much, which is why I refused to get tested.

In 2012, Sean visited his doctor for a regular check-up.  After the visit, he read some of the paperwork and discovered that they had tested him for HIV without his consent.  He was angry, but greatly relieved when the test returned negative.

To us, that just reconfirmed everything we knew about the whole “HIV scam”.

Several weeks later, I went into labor but I ended up having him at a regular hospital.  Our beautiful, healthy baby arrived with no complications.   When the nurse said that my baby and I should get tested for HIV, I opted out.  Thankfully, they didn’t force me.  Sean and I opted out a lot of things, including vaccines.  We only allowed for them to give the Vitamin K shot on our baby.

We went home and enjoyed our new baby, who was healthy and reaching all of the expected milestones.  For the first time in years, I felt peace.

HEALTH DEPARTMENT GESTAPO

Four months later, I answered a knock at the front door.  A man showed an ID card and identified himself as a health department official.  He asked me for my name and ID.  I asked why.  He said that he couldn’t tell me anything but insisted that he needed my information.  I refused.

As my baby slept in the next room, the official and I went back and forth until he showed me a piece of paper that had my name, age, address, and many other personal details on it.  He asked, “Do you know your status?”

I acted as if I didn’t know what he was talking about.

“What status?”

“You got tested in 2006 and I have your status, along with the date from your last doctor visit.”

I said that I didn’t care what he had and ordered him from my doorstep.

“We just got word that you’ve had a baby.”  He said, “If you don’t get your baby tested, we’re gonna send Child Services to your home.”

I slammed the door in his face.

When Sean returned from work, I told him about the visit.  We were both terrified.  We suspected that that if we were forced to test at a clinic, the test would probably come back positive.  I later learned that children shouldn’t be tested before their second birthdays because their immune systems aren’t fully developed until then. 

The next day, Sean and I took our baby to the doctor.  Sean had tested HIV-negative weeks earlier, which we thought would give us a better chance for a negative result for our baby.  Even though the tests are not recommended for babies, we got an ELISA test.  We were terrified.  We knew that if the test came back positive, our world would shatter.  Doctors would force us to give the drugs that almost destroyed my life to our little baby.  If we refused, we knew that Child Protective Services (CPS) would try to take our baby away for adoption to parents who are paid double to administer deadly drugs to other peoples’ babies.  But whatever happened, we knew we would fight.  We wouldn’t let them do to our baby what they did to me.  We would demand confirmatory tests and keep testing and fighting until the truth came out.

We prayed like we never prayed before.  We prayed that God would get us through this new nightmare.  We knew that the test was a trap.  We prayed that God would spare our innocent baby from this evilness and those toxic drugs.

Several days later, CPS reported to our pediatrician that I had refused to cooperate with CPS and refused to present my baby for HIV testing.  At the time, my baby and I were visiting my mother.  When the pediatrician couldn’t reach me at home, she had her nurse call the police to report that my baby “needed to be taken to a hospital for care.”  After several calls, the nurse finally contacted Sean and told police they could leave our home.

It was a terrible week and our emotions were mixed with fear.  We sought help from Rethinking AIDS, which connected us to OMSJ.  We wanted to know our rights as parents in case the baby tested positive.  The doctor who conducted the test is an infectious disease specialist.  We were told that the tests take a week to return, which seemed like an eternity, while police and CPS officials pressured us to get tested.  If we were going to be in a fight, we wanted as much assistance and information as we could get.

Just as I was getting information, Sean called with the news, screaming, “Baby, the results came back ‘negative’!”  I ran through the house, loudly praising God.  I was so happy that our baby didn’t have to take those dangerous drugs.  Thinking about it makes me so humbled and happy. Our baby can have a normal and healthy life, free from CPS, the health department and others who target vulnerable families with these tests.

After I got the news, I took my baby up to see Sean – a visit that I have never had with my own.  It was a wonderful day.

What made it extra amazing is when OMSJ Director Clark Baker called my cell phone.  After this experience, I don’t answer anonymous numbers.  For some reason, that day, I did.  Clark is a special, amazing, and courageous person. He wanted to help us and patiently listened to my story.  He is currently looking at ways to help me get rid of the HIV stigma.

Looking back, I now know that I was a fool when I took the HIV test.  Now that I’m a young mother in my 20s, I am not nearly as naive and trusting of doctors and nurses as I once was.  I no longer believe what “the experts” and officials say.  I know they lie.  I know they accept kickbacks from drug companies.  I know celebrities like Magic Johnson are paid millions to push these unreliable tests and deadly drugs in African American communities.

My experience has made me strong and more dependent in God.  Throughout the good days and bad, God carried me throughout all of it.  The days when I wanted to hurt myself, He protected me, He kept me from going crazy, He kept my mind and blessed it with peace.

I now know that I wasn’t crazy.  I know that my bad decisions, the HIV test and the clinic broke my heart and my mind.  I didn’t need drugs – I needed spiritual healing.

HAPPY & THANKFUL 

Today, I am as healthy and happy as I ever was.  I feel great: I exercise, eat the right foods, drink lots of water, and I am complete spiritually.  I live my life as if I never tested “positive.”  Our healthy child is reaching all of the expected milestones.

If Americans understand the lie and stand together, we can overcome this scam.  The letters HIV and AIDS can be viewed with the same disgust as the letters KKK and NAZI.  AIDS will no longer reign over African Americans or anyone else.

To the girls and women who read this, don’t forget that women have a strong sense of intuition.  Trust your bodies and intuition.  Don’t trust people just because they wear white coats or official badges.  Ask questions.  If they abuse you or call you bad names, it’s probably because you’re right.

God bless you all and enjoy your healthy lives.

Because the local health department remains a threat to this young woman and her family, the writer wants to remain anonymous.  Leave comments to correspond.  See also My Year as an HIV Patient.  

Tags: , , , , ,

You must be logged in to comment

Log in