I have lived with HIV for twenty-five years. HIV is a pronouncement, a judgement of one's life. It is a disease like cancer, parkinson's, multiple schlerosis, and many other long-term chronic and delibitating diseases that exist in today's world. However unlike other diseases, HIV still carries a stigma. What are your expectations of a person with HIV? Would it be your child's teacher? Your sister, your cousin, your co-worker? An IV drug-user; a prostitute? It's often difficult to determine who lives with HIV. For twenty-five years, my life has been a twisting and turning of events as I learnt to put on the right face, the required persona. Was it mother, friend, daughter, sister, teacher? Fortunately, I had a degree in Dramatic Studies and those skills came in handy as I weaved my way through the daily doings of being a widowed mother of three children. Who would you tell? Your parents? Which of your friends? How would you explain the ISOLATION signs on your husband's hospital door? Or why all the medical staff and visitors wore masks, gowns and gloves? Many of us say nothing. This silence only increases the stigma.
Today, I like to think I'm in a safer place, closer to death than to life , having let go of the side-stepping of the truth; of having raised three chidren to adulthood; being rid of many obligations as I float in palliative care which is both a wall of safety and of nuisance. Is it safe, even now, after twenty-five years to speak freely of what is ordinary to me but still completely foreign and skewed to the masses? Now that I am no looking into the abyss; what role did HIV play in my life?
I hear water, waves upon waves of water. But I'm sitting here in snowy Winnipeg, no matter, my mind is on the beach; on all the beaches I've been spending days just sitting by the lapping waves, napping. Hoarding images for a day just like today, when I would not be there. My eyes seized shut to replay for this day, a snowy day in Winnipeg. The children play and laugh in the distance; splashy sounds; droplets at my feet. That's where HIV lived, in the back of my mind, constant like a rock. A reminder of my briefness on this earth. Today, I do yearn for things of the past; for the warm wind on my skin and the sand between my toes; of somnulence by the shore; baskets of beach toys. and kool-aid, the simplicity of spending the day at the beach. The sand scraping my feet. I was there too. The children laid on their towels sunning their backs; threw their bodies in the waves bringing them back. Too far, too far I say, they wave and just keep swimming away. HIV was there too, enjoying the day.
I was there in the early 80's when AIDS ruled like a demon on a planet gone mad with fear; with masks, gowns and gloves; with warning signs posted on hospital doors: ISOLATION. I was saturated with fear and folly. I stumbled and tripped all over myself; squirting around this and that, was vague in responses to questions about what was wrong with John, my husband lying in ICU. The truth was too horrible to repeat. We told our parents vague stories of sexual experimentation and told our children that it was a private family matter. And I behaved like a crazy person. I refused to be tested at the time. I couldn't risk more bad news. Whatever I did do, I was preserving myself and my family. I had no roadmaps, no indicators, hints or cues on how to behave or react. There seemed to be a lack of imagination in the 1980's; despite the great boon of sexual freedom. We had no words or language to adequately explain what was happening to us. Words like isolation and contagion took root. Our thoughts, our feelings ran rampant with negative possibilities. Sex was not a common topic of discussion. The spectrum of sexual expression between men and women; men and men; women and women weren't easily accessible in our conversations back then. A stigma plastered a whole community of people, isolating them from the rest of the world. Judgement camps were formed: the good, the bad, the innocent and the guilty. Penis and vagina became difficult concepts to digest. Fears left no room for thoughts of love and relationships. Silent judgements reigned. I chose silence; drove myself into isolation. Anxiety was paramount. We were protecting ourselves from ...the unknowable.
I made deals with God. The biggest bargain: raising my children to adulthood. PLAN A would leave them in the care of family members. My secret plan was to greet my eldest daughter's grade 12 graduation and 18th birthday. I knew, despite the enormous sacrifice I was imposing on her, that she would look after her 2 younger brothers. These two milestones were celebrated with the traditional cakes and candles; family gathered and happy birthdays and congratulations were proclaimed. Meanwhile I harbored a quiet secret song of success in my heart: this wish, this bargain achieved. When my second child, my son reached his age of adulthood and graduation; I had another double celebration: the public and the private thanksgiving for one less worry. He too, would accept responsibility for the rearing of his younger brother. If I had to die then, the baby of the family would continue to live with the familiar faces of his brother and sister with no need to dismantle his life and ship him off to relatives. Just a few more years till the "baby" now an adolescent, would attain his own adulthood...and when he did, I looked around during the graduation ceremony for signs of recognition of the monumental event that was occuring in my heart. Fruitions of events that were completely out of my hands were complete. No matter that the church was appallingly hot in our June heat packed with hundreds of family members applauding their young graduants; it didn't matter that I was alone with this achievement. I had arrived somewhere safe and spacious; breathing easier, dying became easier to face. I can't bring back or recapture the states of fear and anxiety that I lived through the simplest of daily events. I look back with curiosity and shake my head in recognition of what I let fear do to me.
I had many opportunities to teach. I had many classrooms and many students. I taught many subjects in both french and english. I wondered through numerous topics and HEALTH was one of them. My classrooms were my refuge. These realms I filled with laminated photos of Picasso and VanGogh and numerous other impressionists. They played right beside the french verbs and english novels. This was my queendom. I reigned there. My walls to adorn, my desks to straighten and a wealth of books to play in. And of course, my kids, the students. My solace of safety untouched by AIDS. Or was it? I taught many classes about HIV as required by school curriculums. I certainly never spoke about me and my AIDS. Where was my story in those lessons? Just how much did I deprive my students of the truth; of any real knowledge? So, AIDS did find its way into my royal realm of safety.
When I developed ocular shingles, I wore an eye patch, but it proved too little, too late. The virus had long taken the vision in my left eye. With great anger, I researched and questioned. I obsessed evenings and week-ends on the internet. Disappointment grew as it appeared to me that certain measures had not been taken to specifically protect the cornea from bacterial infection. I stewed and brooded like a baby at this injustice. One day a student approached me and pointed out to me that,"we used to laugh in this room, have fun, you know, joke around...what's wrong?" Her face was full of question and bewilderment. I ended my search to find a culprit. I put all my silly files of paper and websites of "proof" that a wrong had been done into a large manila envelope in the back of a drawer. I resolved to end this pain I was creating for myself and now for others: the innocent, my students. What was I teaching them? What was I learning? We would laugh again in my classroom. This anger and disappointment; AIDS would not rule here in my "queendom". I learned a lot in my classrooms. I was not holy or wise or special and neither was AIDS. I put it where it belonged, at the back of my mind, far from harm's reach. I continue to search the path of real schooling; of wisdom.
Life is a circle. I was sitting outside the care facility where I resided and observed the winding road I used to travel daily to and from the school I taught at for five years. It is also the same road I used to walk my border collie, Sheba. I knew this bend of road because I lived near it too; in a huge house I bought shortly after John died. The river, the trees, the bend and the cars , the people who traffic it don't seem to have changed a bit. Today I don't think I've changed a bit either. I've continued to experience both good and awful experiences with HIV. When I had occasion to speak to medical students about LIVING WITH A TERMINAL ILLNESS, I received beautiful cards of gratitude and praise. One student wrote a beautiful BA'HAI prayer for me. Such moments of kindness are easy to treasure. No sooner does the beauty of these moments simmer in my soul, does a fresh eye-opening event come to slap me in the face with the other side of reality. I had hoped to keep this information to myself, because it is embarassing. Though why I should be embarassed is a mystery to me. The shame in this event is not mine. The shame belongs to the person who rejected my application to an assisted-care facility which would have been perfect for me amd my health condition. But the director of the facility (in 2010) rejected my application because I had blithfully told her I'd been living with HIV for 25 years; after all, this was a health-care home; wasn't I safe here? No, I was not because the director had to think about the effect this would have on the other residents. And the abyss opened up to me again.
I have been pronounced. I have been judged. Who celebrates the long-timers? Who says, "Hurrah". You made it! With cancer survivors, it's "good for you!" The energy in surviving is monumental. With AIDS, it's more of a prolonged endurance. It is not a celebration, it is merely perplexing. "You're still here"?! Doctors are bewildered. There's no recognition of achievement, just more of the same sad music. The threatening undertones of perpetual uncertainty simmer. Having lived this way for 25 years, I've come to realize, despite the wonderful family and friends I have had, that this life with HIV has been a burden. There is no remission with HIV, just an infection, bacterial or viral and we recover, time, and time again. Leaving our bodies weaker and weaker. Our sickness wails in silence, the song of rejoicing is small and inaudible. AIDS is not a disease like any other. Our language is still weak and unsatisfactory. We continue to be judged. One day, about 2 months ago, I was sitting in the smoke shack in the palliative care facility where I was residing, a very fine woman who had suffered much with cancer, asked me quite respectfully, if she could inquire as to the ailment that brought us together. I replied, "HIV, which I've had for 25 years." She nodded her head in empathy but her words, though spoken with kindness were: "I don't judge you." She meant well, but if I had said "cancer" would the word judgement have even come up?
Living with HIV is still a learning process. People with AIDS are not quite safe in our society, though some progress has been made, we still need to tread carefully, sniff the air before we speak. The juducial gavel is still in sight.