AN ORDINARY DAY
Waking up can be a really harsh experience, especially if your dreams are better than reality. The saddest part of it is, though, that eventually even the memory of your dream will fade – if you are even lucky enough to remember it that is. I uncover my face and silence my alarm. I blink, close my eyes and blink again… “Wade you have to wake up. You have to wake up, and soon! It isn’t just you either, everyone needs to awaken.” I know that today I am working with a very good friend of mine, Tanya. I am lucky to work with one of my best friends, we’re flying partners and we share the same roster.
I remember feeling optimistic, eager to be in Tanya’s company, we’re such experts at dissecting life’s challenges whilst sitting on our jumpseats but little did I know that Wednesday 29th of March 2017, my life would change forever and that perhaps this was a dissection best left for the experts only. I arrive at work, everything is ordinary – life, exactly how I know it… “Good Vibes Only” everything is “Stunnnning” these are just some of my favourite phrases I say on a daily basis.
We’re doing a double Port-Elizabeth (a 4 sector flight pairing between Johannesburg and Port-Elizabeth) it’s a rather long day but who cares I’m happy and I’m with Tanya. Before passengers board the aircraft, I turn my phone off and whilst I’m turning my phone off I hear an inner voice in me say “Keep your phone off, enjoy today – for what it is.” So that’s exactly what I did – I always try to honour my intuition. After landing in Port-Elizabeth once passengers have disembarked we have some free time whilst the cleaning team prepares the aircraft for the next flight back to Johannesburg, I guess for cabin crew this is our “tea time”. We normally use this time to take a few minutes to catch up with life, have something to eat, connect to social media etc. Tanya says to me “Doll why is your phone still switched off, that’s weird you’re always glued to your phone” I reply and say “Ah it’s cool, today I don’t want to be connected to anyone, it’s just you and I, it’s a beautiful day – who could possibly want to speak with me?”
Before I knew it we were on final decent into Johannesburg, I was at the back of the aircraft helping my fellow colleagues with the drink service in economy class. Tanya calls me to the front of the aircraft “Wade! Come quick! There is a beautiful sunset outside my window!” She knows how much I love sunsets. I hurry to the front of the aircraft and true to her word, it was one of the most incredible sunsets I had ever seen. I remember thinking to myself “Everything seems so perfect – I’m happy, I have a job I’m extremely passionate about, I have just been promoted, I have loving family and friends, I have no major debt. Come on life, give me a challenge, something to look forward to, a new adventure!” It’s strange how the worst day of your life often starts just like any other. You might even complain very quietly to yourself about its ordinariness. You might wish for something more interesting to happen, and just when you think you can’t bear the monotony any longer, something comes along that shatters your life to such degree you wish with every cell in your body that your day hadn’t become so unordinary.
After the last passenger disembarks, I turn my phone on. Finally I’m able to connect with the world and my people, it’s been long! I receive a number of messages, Facebook notifications, Instagram notifications and so on – but there is one message that I see in the viewing window on my phones screen, it’s from my friend “Done the research. Name is taken but got some alternatives. We need to speak URGENTLY – not related to that” after reading this message, my stomach instantly turned, swallowing hard, I clutched furiously at my chest, hoping that my heart would stop racing. With a long exhale I can detect all the tell-tale signs that my brain has started the overthinking process. (If you’re trying to make sense of the above message, my friend and I planned to start a motivational blog website, we wanted to register http://www.positivevibesonly.com but that user domain name had already been taken. Ironically since – I’ve started this blog alone, without his collaboration unfortunately). I replied to his message “Hey just landed. Whats up?” He replies “Boy with family, can’t speak now, but I have to speak with you TODAY. Don’t wanna discuss this over text” the turning stomach feeling intensifies I’m seconds away from completely shutting down, I’m worried about him, I think that there is something really wrong with him – does he have cancer? Or perhaps he lost his job, I start thinking of how I’m going to help him – I care about him. I try calling him a few times but to no avail, he isn’t answering any of my phone calls. I send him a message “You can’t do this to me…” he replies saying “I’m sorry, I’ve been trying to call you all day. Where are you tomorrow?” I desperately try to make sense of this, thinking “Great Wade, you chose the right day to keep your phone turned off… yeah right!?” Tanya could see the look on my face that something seems to be terribly wrong, she tells me to keep her updated and that she will keep me in her prayers. I run to my car and leave the airport, rushing home I’m feeling sick to my stomach – still – trying to figure out what is going on. He tells me that he does not want his family to hear what is going on and that he will call me as soon as he gets home. Closer to home I get a message from him saying “Everything will be OK – POSITIVE VIBES ONLY” he also suggests that I don’t go to work the following day, by now I feel like fainting, I can feel every last drop of my blood drain out of my upper body and into my feet. He sends another message “You gonna have to sit down when we speak… YOU will be fine.”
By now, I am home. I can’t remember the drive home, I guess “auto-pilot” kicked in, my mind is so preoccupied with a million different thoughts. I know that I’m going to receive very bad news. I take a cold shower to cool my body down and wait for his phone call. It felt like I was waiting hours on end, eventually he calls me. I walk outside to the pool area because I’m worried my Mom will see the look of panic on my face.
Being the bearer of bad news is a terrible thing, sometimes you don’t know if you’ll have the words, the delicacy, the strength. You think of the person on the other side: how you’re about to bring their world crashing down with a single phone call and deep inside them they’ll hate you because their sorrow will just be searching for someone to blame. Then what do you say? That you’re sorry? Sorry for what? They’ll hate you even more because they’ll know you’re not sorry like they are. They’ll know you haven’t been destroyed like they have.
The phone call was brief, the ending less than graceful. He says “Wade I’ve been feeling sick and just could not get better, even after antibiotics I still felt sick, so my doctor ordered some blood tests and I decided to randomly check for HIV as well. Well Wade the results came back today – and I’m HIV-positive.” I took a deep breath and said “Noooooo – it can’t be true – what!? NO! Are you OK?” I can hear the tone of disbelief in his voice, I’m shattered. It’s difficult to respond, I’m worried for him, is he going to be OK? Suddenly it all makes sense now… I’ve had sex with him, without using protection – he was the bearer of bad news, a difficult but brave phone call to make. I realise now that I will need to be tested for HIV too. I tell him that I would not be able to do this alone, I need him now more than ever. I rush over to his house, once that first tear broke free, the rest followed in an unbroken stream. I sat upright – close to the steering wheel of my car, my palms were numb and adrenaline floods my system, shutting down my ability to think logically. I felt like letting go of the steering wheel, wishing this was just a bad dream and that is was time to wake up. I began to cry with the force of a person vomiting on all fours. “Please God. Please God. Please God this can’t be happening, please!” Before arriving at his house I wipe away the tears, he can’t see me crying again, he has seen me cry too often. I need to be strong this time. I wipe away my tears and put on the famous “everything-is-going-to-be-OK” mask although I am scared, fear sits on me like a pillow over my mouth and nose. When I arrive at his house, he is on the phone with a doctor, I wait for the phone call to end, he walks up to me and says “Can I please just have a hug?” I hug him tightly while holding my tears back, I’m scared too. He taps me on the back ending the hug session and says “Come we’re going to the hospital to get you tested.” Normally this isn’t a scary thing for me, I get tested at work regularly, but this time it just felt different. In my mind I already started preparing myself for the worst. I couldn’t drive properly my legs were shaking, speeding as fast as I could to the nearest hospital. I drove straight through the boom gate before it could fully open, I could hear my heartbeat banging in my ears, I just wanted this anxious feeling to end.
TWO LINES THAT CHANGED MY LIFE
The hospital casualty room is as devoid of beauty as I am of hope. Its walls are simply cream, not peeling or dirty, just cream. We tell the nurse on duty that I need to urgently have blood tests, but the hospital was busy, there were people waiting to see a doctor too. At the time I thought I was the only patient, I kept asking the nurse how long it would be until I saw a doctor, she replied “I don’t know, they’re busy with a resus.” I realised then that someone was fighting for their life in the room next to me and it was going to be a long wait until my bloods were taken.
The only words I conditioned my mind to hear were “Mr Schaerer, we’re ready for you.” I could hear nothing else, it felt like the world was slowly disappearing in front of me. Or maybe it was just me who was fading away. Those moments didn’t matter anyway, all I wanted was to know what my results were. Inside the hospital there was a 24-hour pharmacy, I decided to walk there to find out if they had any rapid HIV testing kits. I approached the pharmacist, passing the people who had been waiting in the queue – honestly I didn’t care about them, I had tunnel vision, I said to the pharmacist “Please help me, I need a rapid HIV test.” I could see the look on his face soften as he passed me the testing kit. My friend and I took the rapid HIV testing kit back to the casualty room where I was waiting to see a doctor. I asked one of the nurses to help me do the test but she was not sure how it worked, even though there are clear instructions for use printed on the box. My friend and I were hesitant to do the test ourselves, we didn’t want to mess it up. After reading the instructions over and over we are now finally confident enough to do the test ourselves. I prick my finger with the lancet and draw up blood into the plastic pipette, I then deliver one drop of blood into the cassette and add two drops of provided diluent – after this the instructions simply say “wait 15 minutes.”
My heart was hitting my chest so hard I thought it would break my ribs and rip my skin apart, the only thing I could think about was what the results of my test were going to indicate. My heart twisted and sunk with nerves as I sat in front of the test. I have held my breath in a pool before, this isn’t like that. This is like having a gun to your head and being told not to let your heart beat. Of course it will beat. And just like the heart must go on, your lungs will inhale whether it is air or water. The white light enveloped me, my breaths came in sharp pants and I tried to gain control, but nothing was working. It hurt! I tried to breathe calmly, but every time I tried looking up my eyes kept dropping to the test cassette. I’ve done this before – one line means HIV-negative and two lines mean HIV-positive. When I saw the first line starting to develop I knew that it wasn’t normal. The first line was faint, but I could see it, it developed over the “T” column, I knew then that the test was starting to indicate that I was HIV-positive. Shortly thereafter the second line developed over the “C” column. Those cruel, horrible, necessary lines were there, the two lines that were needed to indicate a positive reading on a rapid HIV test. In 15 minutes my entire world had changed, the result I had waited for with anxiety and worry, knowing, somehow, what they might say. It’s difficult to remember exactly what happened after that, I don’t know where my friend went and I don’t remember what he said. He had probably gone outside to smoke a cigarette.
When I eventually saw a doctor I told him that I had just tested HIV-positive on a rapid test which I had bought at the pharmacy inside the hospital. He asked me to do another rapid test – it felt like I was reliving the worst experience of my life. Again, the rapid test indicated that I was HIV-positive. The doctor said “I’m sorry to tell you this but it is very likely that you are HIV-positive, these rapid HIV tests are quite accurate. I will call a nurse to take your blood as a confirmation.” The doctor walked away and said “It’s not a death sentence anymore.” His words splinter inside me causing more pain than a blunt knife lodged into my heart, of course I never got any kind of post-test counselling, I never saw the doctor again. Whilst waiting for the nurse to take my blood, slowly, the panic and anxiety flowed away, I was in shock. My eyes closed and aimed towards my clasped hands, trepidation swelled through me as I slowly raised my eyes yet again into the steadily shining lights of the room, I held onto the curtain that surrounded the bed I was sitting on and fell to the floor. My body felt hot, I wanted to take all my clothes off, it felt like my world was ending. My friend came back into the room and gave me a can of coke. I needed the sugar rush to prevent me from fainting. The pain that once burned like fire had faded away to an icy numbness. Black filled the edges of my vision and the only thing I could hear was my own heartbeat.
The hypodermic needle grew as I watched it come close to my arm. The nurse had me sit up. Next, she said “I will be testing you for Human Immune-deficiency Virus markers, HIV viral load, a full blood count, liver function, Hepatitis B Virus markers, Hepatitis C Virus markers as well as a CD4/CD8 count.” I looked away at the wall, denial, trying not to centre my attention to the needle embedded in my arm. However, my eyes swung back to it as if out of control. My bright red blood filled a number of tubes. “What is all this?” I didn’t know what she was talking about, I just kept quiet. I’ll admit I was ignorant, I never knew a lot about HIV and even as I tried to recall what I did know, I quickly realised it was little. I had always thought this would never be a challenge I would ever face, even as a gay man.
THE BLAME GAME
My friend and I left the hospital and I spent that evening at his house. Initially I think we were both still in shock or denial. He had been told earlier that morning that he was HIV-positive too, he knew first-hand what I was experiencing. At the time there was just nothing to say really – we’re both HIV-positive and who is to blame? I know what he is thinking and I’m sure he knew what I was thinking. The awkwardness is like touching an electric fence – not enough voltage to kill but sufficient to keep things uncomfortable. Naturally you want someone to blame for every blow that life throws at you. We decided to talk openly about previous sexual partners, this proved to be the wrong thing to do, it angered both of us, but still who is to blame? It is impossible to know who infected who, besides, what will it change? I can say today that: I gave myself HIV – it doesn’t matter who gave me HIV – I need to take full responsibility for my actions and lifestyle. I learned to forgive myself and to forgive the person who gave me HIV. I have always known that forgiveness is the key to life. In July 2016 I met with the man who murdered my Dad and I forgave him, so why can’t I forgive the man who gave me HIV? The forgiveness thing is the most powerful thing we have. You never forget the pain. You never forget how it hurts, but yet you are grateful that God has given you forgiveness. So when you give it to others, it comforts you. That’s the only way you’re going to heal.
I won’t allow any negativity to surround what has happened to me, it won’t do me any good, or my health. But moving forward, I’ve learned to love and respect myself more. I know who my true friends are, and most especially, I’m happy with the love and support that I’m getting from my family, friends and fellow people living with HIV. There is always life after an HIV-positive diagnosis, it’s not easy I know, and this will always serve as a reminder to me, to live my life to its fullest.
BREAKING THE SILENCE… I AM HIV-POSITIVE
Telling my Mom that I am HIV-positive was probably the hardest part of this journey, it’s the last thing you want to tell a parent. I knew it would hurt her, I knew it would disappoint her, I am her only child. Coming out as HIV-positive is 100 times worse than coming out as gay, there is something so destroying about revealing your status to people who love you, you can almost see the sadness in their eyes. She went to bed and didn’t say much, she said she needed to process it. It took her a while to come to terms with my diagnosis. She felt guilty that she wasn’t able to protect me. I tried going into education mode, trying to tell her that I was still going to live a normal life, but at the time I still knew very little about HIV and AIDS – and I was still awaiting the results of the blood tests that were taken. In the back of my mind I was still hoping that somehow the rapid HIV test was inaccurate. I spent all my free time on the internet researching facts about HIV and AIDS. I soon realised that I shouldn’t spend all my time reading up about HIV and AIDS, most of the content is harsh, one that I battled with was: “Life expectancy 20 years with the use of ARVs” for me that meant I will be dying at the age of 45, I cried until my eyes ran dry and my chest heaved violently. I’m not ready to die at 45! I never will be. I know now that this is not true and I will live a normal long life, as long as I maintain a healthy lifestyle.
I scheduled an appointment with my family doctor who would explain my blood test results. Dr Van Der Merve had indeed confirmed my HIV status “Yes it’s true, it is reactive, you do have HIV – but you’re still healthy, look at you, you’re the picture of health” it was difficult to believe, mentally I felt sick and disgusting. Even though my CD4 count was normal with a low viral load she still suggested that I start ARV (antiretroviral) treatment immediately – the sooner you start ARV treatment the better.
I decided to disclose my HIV status to my family and close friends soon after I was diagnosed, again this was not easy as I wanted to tell them face-to-face. This is not something I wanted to discuss over an email or text message. All my aunts cried when I told them, I could see the sadness and fear in their eyes, I’m sure it was the last thing they were expecting to hear, having said that – I have the most supportive family and friends who only want the best for me. I am incredibly blessed. “Nothing changes, I still love you, now and always, no matter what” was a common comment.
MY DAILY VITAMIN
A triple therapy antiretroviral drug – efavirenz [ef–AV–ir–enz] – emtricitabine [em–trye–SYE–ta–been] and tenofovir [ten–OF–oh–vir] all packed into one big orange pill, a pill that I will need to take for the rest of my life. I opened the bottle and took out the pill, I looked at it and held it close to my racing heart. I closed my eyes and asked it to only do its magical healing super-function. “Please stop destroying my white blood cells.” I remember thinking “What is this pill going to do to my body?” I had taken 2 weeks off from work after being diagnosed, I needed time to allow my body to get used to the side effects of this pill and I wanted to be in the comfort of my own home, during this time the side effects I experienced from the ARVs were intense. About 45 minutes after taking the pill, the first side effect starts kicking in – dizziness, everything surrounding you starts to spin and you feel unbalanced, shortly after that a series of hot flushes spread over your body, combine that with feeling nauseas as well. I had no appetite, my bones and joints ached. I urinated blood for a few days and felt constantly tired. The side effects have subsided now but I still have constant lower back ache since starting treatment and most nights I have nightmares too.
I had never believed in taking pills – not even antibiotics, I am a person who believes in the healing power of nature and eating healthily. I read online about the potential damage these pills could cause my kidneys and liver but if you don’t treat HIV with ARVs it can lead to the disease AIDS, so I really had no choice if I wanted to live. I just had to deal with the side effects. I started combining my ARV treatment with ozone and oxygen, a natural treatment that involves having ozone gas pumped into your veins intravenously every day. I’m not sure how effective this alternative treatment is, but I’m willing to give it a bash too.
Although I dislike taking this pill and I’m extremely worried about the long-term damage it may be causing my body, I know that this pill is designed to slow down the replication of HIV within the body, repair damage to the immune system and reduce the viral load (the amount of virus in your bloodstream). Eventually my viral load will become “undetectable”. People with undetectable viral loads stay healthier for longer and they are also less likely to transmit the HIV infection to others.
DOES HIV LOOK LIKE ME?
Although HIV and AIDS has become very common, it is still surrounded by silence. People are ashamed to speak about being infected and many see it as a scandal when it happens in their families. People living with HIV and AIDS are exposed to daily prejudice born out of ignorance and fear. By sharing my personal story with you, my hope is that I can break the silence surrounding HIV and AIDS. Don’t be a silent witness when it happens to you or around you.
There are a lot of assumptions made about the kind of people who get infected with HIV. Some people think that it is a reality for homosexuals, drug addicts or the promiscuous, the truth is, it can happen to anybody – you don’t have to be a gay male, you don’t have to be a drug user and you don’t even have to be promiscuous. What about people who have been raped and subsequently become infected with HIV? What about the faithful partner who is infected with HIV from an unfaithful partner? Or the thousands of babies who are born with HIV and kids orphaned by HIV. So the next time you have something to say about HIV, think about who may be listening, you never know what their story is. Don’t be naïve about the kinds of people who can get infected with HIV, because no one is exempt.
Learn how to react and deal with the news in a better way when someone confides in you and has the courage to tell you they are HIV-positive. Don’t be ignorant… get informed on how to protect yourself from getting HIV. Take responsibility for the prevention of HIV in your community. Challenge negative attitudes and behaviours that contribute to HIV stigma.
More than half of young people who are living with HIV are unaware of their status. I urge all my family and friends to share this post to create awareness. Get yourself tested – regularly, know your status. Fight against HIV and AIDS, it is your responsibility.
I won’t give up – ever – HIV is not my death sentence, it was just my wake-up call.
You are not a victim for sharing your story. You are a survivor, setting the world on fire with your truth. You never know who needs your raging courage. I am living with HIV. I am not suffering from HIV so please don’t say that – or call me a victim of HIV. My name is Wade.