A month ago, I was driving to Vancouver for some medical appointments. At some point during the journey, in a mountain pass, I lost the radio station I was listening to and decided to put in a book CD. It was Eckhart Tolle’s “A New Earth” and I was looking forward to finally hearing it.
The first CD talked about the “Ego”, the voices in your head. The topic was interesting but soon I found Tolle’s monotone voice was making me tired. By the time I reached Merritt, an hour and a half from Kelowna, I could feel myself falling asleep. I stopped at the Visitor Information Rest Area, got a drink and some food and walked around for a while.
Once I got back in the car, I had a choice, listen to some “Our Lady Peace” or try Tolle again – CD#2. I slid the CD into the slot with the precursor that if Tolle made me tired again, I would change it for something “awakening”.
I believe the next two hours of that CD were actually pivotal in my life and I will tell you why.
I had no idea that for the last 17 years I had become so engrossed in HIV and the terrible story of what had happened when I found out my diagnosis (and that of my baby), that my life beyond that didn’t really exist except as a by-line. I had become the disease. It had taken over not just my body but my mind and soul.
That evening I got on twitter and had to write about my discovery because it was so profound to me and I needed to just let it all out (*thanks to the woman who responded and said that she could relate and had been feeling that way too).
So what was this profound enlightenment? It was that my story was, in some way, filling a need or want in me. In a world that had gone totally out of control, it gave me something to hold onto and I had continued grabbing onto it for years. I was scared to “let go” because I was afraid of going back to the person I was before. I felt when I was diagnosed with HIV, I was an uninformed, semi-judgmental person, someone who believed everything happened in perfect order, nothing got in the way.. I was totally blind to how life really was.
When I had the diagnosis of an illness without a cure, it had made me realize what was important, how material objects were nothing compared to friends and meaningful relationships. I “got it” and I could identify with others.. the disease had given me a whole new identity. Obviously, I hated the disease and how it had killed my baby daughter but now I realized that I had come to terms with HIV and had almost made friends with it and in fact, I was even nursing it. I wouldn’t even let anyone say anything bad about it – I was determined to fight the filthy stigma, which maligned HIV and then that became who I was – the fighter, the person who wanted to protect others: Super HIV Girl! People told me how strong I was to publicly talk about HIV and it felt good to be called “strong”, it stroked my Ego, the voice in my head that said “HIV is part of me and I will defend it!”.
By the time I reached Vancouver I was in a panic; many years of my life had been lost to this story, the thought of it scared me. I knew that in telling the story it would help others but I felt that I was drowning myself in the waters of HIV and that my true self was committing suicide. Even on Twitter, I had called myself “HIVgirl”, why did I do that?! I thought about it and knew that it was so I could contact other people who were in the HIV world and then I would feel like I belonged to the HIV “clan”, and it was so I could tell the story over and over and be told what a hero I was. It sounds like I am being hard on myself but it was time to face the facts and sometimes the truth hurts when we have to come to terms with it.
But what was causing this thirst to be acknowledged? Why did my ego need to be stroked?
When I was in my teens, my life turned very quickly from happy-go-lucky to confused and miserable. I am telling you the story below because it is a fact and not one to make you feel pity for me, it just happened.
I lived in Reading, close to London, England. My older siblings had already moved away. My mother caught my father in one of many affairs and she finally decided to divorce him. In the following months they argued loudly and I saw my father hit my mother and push her around. He refused to move out of “his house” and was enraged, often muttering to himself. I became terrified of him and wedged books over my bedroom door so that they would fall if my father entered my room during the night to kill me or my mother. My mother told me not to speak to him and we all lived in the same house, not speaking for two years, until the divorce was finalized. In the meantime, unable to study, I fled the house every chance I got and my hopes of entering university were abandoned. My mother returned to Canada to be with her family and I went with her.
Until those dreadful years, I had a great relationship with my father and I was his favorite child. We did gardening together, we watched theatre and movies, he took me to the Saturday farmers’ market and we both sang along to the radio. After seeing him treat my mother so badly, I hated him. How quickly love turns to hate! I felt abandoned.
Nine years later I got HIV in a relationship, I had sex with a guy because I wanted to be accepted.
When my father was in his 70’s, we reconciled and I hid my diagnosis from him until finally my involvement in an AIDS conference in London, England, made it too difficult to keep the secret. His later prognosis of prostate cancer changed him; he finally became a much more caring, less angry human being.
I believe that HIV, the media interviews and public attention were a good thing for telling people about the stigma but now I realized it was somehow filling a huge void in me, making me feel like I mattered.
When I had heard the CD, I thought I would change my name immediately on twitter to my real name but then, after listening to Eckhart Tolle some more, it didn’t feel right either – it was a name given to me and was also the surname of my ex husband, it was not a name I ever would have chosen for myself, it didn’t describe who I was.
Finally, I decided on the name Ms. Crimson Lips. It sounded happy, fun and it had moxie. Yes! It described me perfectly. So that is why I now tweet under that name and blogged about things that really concerned me from all parts of life.
I am still trying to find out who I am but one thing I do know is that I am not this disease. It is an unfortunate event that happened to me, it has changed me but it is not the essence of who I am. I can let it go and be myself, a person who is learning day-by-day who she is and what she stands for.