“A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.” – Sir Winston Churchill
AIDS entered my world on the 10th March 1983: The first person I knew with this disease – Michael Shortell – died on that day while the medical staff at the hospital frantically operated on him. In order to get him the experimental treatment from the NIH for what they believed to be PCP pneumonia, a confirmed biopsy was required. My friend died in the operating theatre. Little did I know that at moment of his death, my life would change forever.
Up until that moment, I was all of 21 years old, a fluffy disco bunny and having the time of my life. Nobody knew we were in was the twilight of the sexual revolution and we were living on borrowed time.
Based upon Michael’s symptoms in the months leading up to his hospitalization, I went to a doctor to test my blood. I had been experiencing similar symptoms: Night sweats, diarrhoea, weight loss, thrush, leg pains, and swollen lymph nodes. The immune system results – received on my 22nd birthday, 1983 – confirmed that something was seriously wrong with my body: Helper T-cell count of 362. I was told that I had 6 months to live, and told to go home. I was also told not to return to the doctor’s office. The next day the local newspaper published my home address with the headline “Plague arrives in Las Vegas!” And so it began .
Today, 13th March, marks my 25th anniversary of my diagnosis with HIV/AIDS. It also happens to be my 47th birthday.
If 25 years seems like a hell of a long time, believe me it is. I for one never thought I would still be here, one of the last original patients still standing.
In the early days, HIV took many different paths and none of them had signposts to guide me. My journey has taken me to the highest levels of joy and the depths of sadness. I have experienced – first hand – stigma and discrimination, ignorance and irrational fear, hatred, religious persecution, governmental deception and blatant lies. I have witnessed the likes Dick Cheaney (USA) – then Secretary of the US Air Force – deliberately try and destroy the lives of HIV positive members of the Air Force, and then go on to become the Vice President of the USA. I waited for Regan and his administration to address the HIV issue but his silence was deafening. Sound familiar?
I’ve watched Mbeki, our esteemed President, set HIV/AIDS back by 20 years with his stubborn, arrogant and irrational behavior. So many politicians with so much blood on their hands.
I was even threatened with deportation by the INS in the States. I’ve lost jobs, been kicked out of homes and been denied medical care by doctors, despite their Hippocratic oath. I had my own family reject me. I’ve had bomb threats, along with threats of other acts of violence, toward myself and those I love, including my pets. I’ve had my name splashed across newspaper headlines, on the evening news and in numerous forms of graffiti in public areas. I have even been labeled a potential threat to national security, as recently as 4 years ago by the US Government, while applying for a visa to re-enter a country for a conference – a country I called home for 18 years, and where I paid taxes, belonged to numerous research projects at various Universities as well as the NIH and the CDC in order to help them understand this disease better. All of this happened because I am a person living with HIV. I also remember the millions of people who have died because of apathy, indifference and the biggest killer of all, bureaucratic red tape. So yes, I have seen humanity at it’s very worst.
Yet on the flip side, I have witnessed the very best that humanity has to offer. I have seen people rally to support those of us living with HIV, from the most unlikely of places and backgrounds. I have seen the infected caring and supporting one another, as they confronted their own mortality. I have seen complete strangers caring for each other in ways I never dreamt possible. I have seen communities form alliances that probably would never have happened were it not for HIV. I have seen apathy and desperation turn into anger and action as these victims shed that label and become empowered to take on the system and all its injustices. I have seen sales clerks and hair dressers become self-educated immunology experts, lecturing at international medical conferences, leading the way to finding better treatments.
I have seen people struggle with their HIV status, and watched their liberation as they – some privately and some publicly – disclosed their infection, freeing themselves and clearing the path for others to do the same. I have seen people, including myself, cross cultural, religious, political and ethnic boundaries to support each other despite our superficial differences.
I have witnessed people stretching themselves way beyond their perceived limitations, and in that process discovering amazing aspects of themselves that they never knew existed. This all happened simply because they took the risk of caring for their fellow man. And most of all, I have learned and am still learning, many of the lessons HIV is here to teach us.
For me, HIV is a symptom, not a cause. HIV is not the enemy. It only enters when a door has been opened for it: Ignorance, fear, poverty, inequity, social injustice, isolation and greed are the guilty culprits, not the virus. Man’s inhumanity to man is the demon we need to slay, not each other.
I wonder if we will ever learn the lessons HIV is here to teach us? I for one hope that we learn these lesson fast because at the end of the day, hope is all we really have to hold onto right now – a hope for change, a hope for a cure, a hope for treatment for all. Hope is like a giant sheet that blows in the wind and all we can ever really do is hold onto one or maybe two corners of this flapping sheet. We must never let go of the small corner we hold onto so desperately because if we do, we and our dreams are lost. Also, all those people who have died, with their song still in them, unsung, will have died for nothing.
I started out life full of innocence and joy, with only instincts as my guide. As I grew up and life started with it’s lessons, fear entered. So I faced my fears head on and slayed those dragons, one by one. With this, came courage – the courage to dare to be who God intended me to be, to live my truth, be on purpose and embracing the God within me. I am grateful for the lessons HIV has taught me because without it, I would not be the person I am today.
So what have I learned on my journey? I’ve learned that dreams are essential because it is dreams that make the impossible possible. I have also learned that without faith in myself, others and in God, the lessons of HIV are wasted. The most important lesson is about LOVE, for without it, we are nothing. To know and love another is the only way we learn about who we are.
As I look forwards to my future – despite HIV – I am excited at all the possibilities, opportunities and lessons the next 25 years will bring. If HIV were a race between myself and fear, with life as the prize, I can honestly say that I have won.
And here, by the grace of God, go I.