My name is Ashley Brownlee. I have been living in the Klein Karoo for over a decade now, and have found a great deal of peace amongst the big horizons and in the arms of the Milky Way.
There was a time though, and it’s a difficult time to talk about, when life was not so filled with any kind of future. I hope that my story will inspire you to choose life.
I contracted HIV/Aids on the night I lost my virginity.
I was so in need of being loved that night, that even though there were condoms on the nightstand, I had unsafe sex. The person I was with had his own issues, and due to the stigma regarding HIV/Aids during this time, choose not to reveal his diagnosis to me.
I was diagnosed HIV positive shortly before my 21st Birthday and given 9 months to live. I had the blood tests done at a gay men’s health clinic after my one night stand urged me to go for a test. It took a huge amount of courage to submit to these tests, and I was truly frightened. I went alone.
There was almost no treatment available. What was available was very expensive, and although initially relatively successful, very toxic and ultimately deadly. There was, as is now, no cure.
I had to wait 10 days before the results came back.
The first thing that came to mind after receiving the diagnosis, and this is a clear memory, is that this was not going to play out as a tragedy. I would choose to walk a path that made everything possible.
I spoke to close friends about the diagnosis, but not immediately to family initially, and this certainly took a great deal of the load off. It felt like I had a team on my side from the get-go.
Speaking to family is a huge hurdle, and I only did this once I began to feel and look visibly ill. I was also in financial difficulty, as the treatment available was beyond my means. I needed help. I had expected much crying, and emotional overcompensation, but what surprised me was the tenderness. The enveloping of me into my mother’s arms, and the deep silent hug of my siste, was incredibly moving.
I am lucky to have been gifted this family. Many are not so fortunate. It is imperative to understand that family can be chosen, and as Kahlil Gibran so wisely points out, “Your children are not your children. They are the sons and daughters of Life’s longing for itself. They come through you but not from you, and though they are with you, yet they belong not to you.”
It will be hard, to be rejected from your family, but it does not have to be. Families can be made from the ground up.
Since then I have seen more needles than you can possibly imagine, enough “test” medication down my throat to sink a ship, and I’ve watched too many friends pass away. There was a two year period in the late 90’s in which I lost close to 9 people in my immediate circle of friends, including the person that had infected me. It was completely horrific.
I also finally found true love, and my partner and I have been together for close on two and a half decades. Choose love.
Having a partner in my life has made the world of difference.
I’m now in my late 40’s, a plague survivor, and certainly the longest living person with HIV in my immediate circle of friends. Being a survivor comes with its own issues, and is well documented by people that have survived catastrophic air crashes and natural disasters, and especially in people that survived the Holocaust. Being a survivor comes with its own weight.
Know your history.
Whether it’s Simon Nkoli, David Ross Patient, Zackie Achmat, Ryan White or Rock Hudson. The struggles of the living and the dead create road maps. The history of HIV/Aids is both crushing and inspiring. The stories are can be small and personal, or angry and full of activism, but there is a common thread that speaks of acceptance and compassion. Love does conquer all.
What I’d really like to express is the importance of finding spirit when faced with chronic illness. I do believe that it is the single most important choice you need to make, and one that has without doubt contributed to my longevity.
I choose to love rather than hate. Happiness over sadness. Joy over despair. Laughter over tears.
I know that many people living with HIV/Aids are not in the privileged situation that I am in, and that finding the time to find spirit when you’re living hand to mouth is an almost impossible, but you’d be surprised where compassion and empathy are to be found. Do not turn away. You deserve the love.
Remember to always be kind to yourself. Show yourself some respect.
You will make mistakes. Some of these will haunt you for the rest of your life.
For a while, during the dark time of HIV/Aids is South Africa, a young woman lived in my house. She was an old girlfriend of my boyfriend. She arrived with full blown AIDS and a young son. For an entire year she stayed with us, and everyday I walked her son to school. It’s the closest I’ve ever been to being a dad. Towards the end of her stay, on a particularly hard day for both us, she requested me to fetch something innocuous for her from the kitchen. I was moody, she was dying, we were both just fed up. I’d reached my breaking point, and from my bedroom I screamed at her – “Shut the f#@k up. Just shut the f#@K up. Just die already!”
The moment the words came from my mouth, the second they travelled out of my body, I knew I’d never get them back. HIV/Aids is a horrible gig, and it will push you to places of vulnerability and fear that you’ve never though possible. You will make mistakes.
It’s okay to be angry. Forgive yourself.
Less than six months later our friend passed away in a hospice, leaving behind her son in the care of her sister.
Nothing can prepare you for having to watch the people you love slip away. HIV/Aids are insidious, and will reduce a once strong life force to a small defeated frame of bones. You need to steel your self against the horror of it all, but you also need to be present.
Death comes for us all in the end, but it’s not something you should have to endure in your 20’s. All the dying was pretty overwhelming back then, and it unfortunately hardened me too many years before life should have done so.
My journey has been a wild ride, with great loss and enormous lessons. I’d like to share with you a story of a particular time, in order to illustrate how important the role of spirit is:
= = = = = = = = =
There were 18 months of my life upon a time, when I have full blown AIDS and no medical aid, when once a month I sat in a queue at the Robbie Nurock Clinic for ARV medication.
Arriving early was essential, and patience was required. I had never had to wait for medical treatment before. I came from a world of deep Cape Town white southern suburbs privilege, where waiting was something other people had to do. I remember my first few visits, when I was completely overwhelmed by the number of people, and feeling entitled… felt extremely miffed at the hours it took to see a doctor. I simply had no idea that that was the norm, naïve as I was.
Slowly, very slowly, like the queue I was expected to sit in, I started a journey that has had a profound effect on my life. I started to talk to the people around me, started to listen to their stories. Horrible stories of living with HIV/AIDS in townships, of violent discrimination, of fevers in shacks, of waiting. Waiting to die.
And then there was the singing. To pass time, to show camaraderie, to voice but not to cry, there was singing. Beautiful singing. Soul singing. Singing that filled the grimy corridors, brought life into wrecked and ravaged bodies, and offered hope to everyone… no matter your age, your race, your gender, or your sexuality. Singing.
And I cried. I cried a lot. But I also found comfort in the most unexpected of arms. In the arms and hands and words and love and friendships of strangers.
Strangers in those dark gloomy corridors waiting to die. Lifted me. Filled me. Opened my eyes.
Many of them are probably dead by now. I know they are. Because they were black and poor, and the help didn’t come soon enough. I am grateful and thankful beyond imagination for the care they took of me on my journey.
For every day I live, I live for them. I live in the love of those whose brightness was snuffed too soon. I will never forget.
= = = = = = = = =
HIV/Aids changed my life. It changed the lives of some of the most creative and beautiful people I’ve even know. It robbed us of all that incredible potential. Since the beginning of the epidemic, more than 70 million people have been infected with the HIV virus and about 35 million people have died of HIV.
There have been huge strides in treatment, and I’d certainly be dead without the medication I take every day of my life. The viral load in my body is undetectable, and it’s very seldom I fall ill. The future is bright.
The epidemic galvanized the LGBTQI community into a powerful and united advocacy force, but the simple truth is this, above all that has happened…
I’d really like my friends back. I miss them so very much.