MY STORY

MAY 24, 1998

Today marks the seventh year anniversary of my diagnosis of HIV infection. Each year on this date, I write a letter to AIDS. This year's letter to AIDS will be located on my Journal pages. I'd like to share with you what led up to my decision to be tested and what it was like for me immediately following the diagnosis.

The racist attack and rape occurred on Sept. 2, 1990, during my involvement with the struggle at Oka. Later that day, my family doctor tested me for HIV. That test came back negative, as did the next tests taken two months apart.

In April, 1991, a friend of mine wanted to be tested, but was afraid to go alone, so I offered to go with her and be tested again, just so she had support. At this particular anonymous test site, pseudonyms were allowed to be used. However, an address of sorts had to be given. My name was "Jane Doe - 1597." I gave my address because I KNEW my test would come back negative. A month later my friend phoned to say her test had come back negative. The next day I found a letter from the clinic addressed to Jane Doe at my address. I opened it to read:"Dear Ms. Jane Doe: Please contact the above named clinic immediately to receive results of tests recently taken." I made an appoint ment for the next day.

I recall sitting in the waiting room, watching as people were called into the doctor's office. Some came out rejoicing at the news that they were pregnant. Others came out with prescriptions in their hands, and made follow up appointments. Finally, a nurse came through the door and said, "Jane Doe- 1597".

The older, white haired doctor indicated that I should take a seat across from him. He was sitting behind a large wooden desk. He asked to see the card which was given to me at the time I was tested, with my code name and number on it. I gave it to him. He looked down at some lab reports on his desk, looked at the card again, and then down at the lab reports again. Finally, after what seemed like hours, he looked up at me from behind his bifocals and said, "Well, Miss....your test is reactive. You have HIV infection."

"What does this mean?" I asked him. My mind was speeding. I kept having visions of the gay men I'd known with GRID (Gay Related Infectious Disease)- some of them were now dead. I knew that they now called GRID ..AIDS or ARC or something like that. But this doctor said I had something called HIV infection. I was confused. I thought I'd come for an AIDS test.

"It means you have been infected with HIV, the viruses that causes AIDS. It means that in time you will develop AIDS and die. I suggest you go home and take care of your affairs". I looked up at the doctor who now appeared to be as far away as he possibly could be (I guessed he didn't want to catch this infection I had).

"NO! NO! NO! You made a mistake! YOU MUST HAVE MADE A MISTAKE! THERE IS JUST NO WAY I HAVE AIDS!", I yelled at him.

I looked at the clock. The time was 10:45 AM.

A nurse had entered the office, with a handful of pamphlets, handouts, etc. to give me to read. I threw them on the floor and told them they were both wrong. They'd simply made a mistake. They MUST have gotten my blood mixed up with someone else's. I got up and left.

Numbness took over almost immediately. As I walked home I passed a bookstore with a huge poster about AIDS in it's window. Strange, I thought, "I've never noticed that poster before." But then, I'd always been the sort to switch channels on the tv whenever AIDS was mentioned. AIDS simply wasn't a concern of mine. Sure, I knew people with AIDS, and I cared about those people, but it would never happen to me! Besides I had so many other things to be concerned about: First Nations struggles, my work at the battered women's shelter/rape crisis center, etc. I found myself inside the bookstore. I bought a red ribbon because the poster said they were raising funds for those poor people unfortunate enough to be infected. I pinned the red ribbon on my shirt, feeling good about being able to do what I could do to help those less fortunate than me! I guess, it is fair to say that I IMMEDIATELY went into the stage of Denial. Fortunately I was only in denial for about an hour.

When I got home, I unplugged my phone, pulled the blinds down and locked my door. I took a long, hot bath, scrubbing myself with steel wool, trying to get this "filth" out of me. I felt contaminated!

Six weeks passed. I ignored knocks to my door. I didn't eat, rarely slept. I just kept thinking of the shame I would bring to my family and Community. Finally, I came to the conclusion that I'd rather die now than bring this shame to others. I threw some clothes on and walked over to the Driving Park Bridge, and climbed the ledge. Just as I was about to jump, I felt "ThunderBirds" (my deceased father) energy beside me on the bridge. I heard him say, "If you ever doubt the love of the Creator, go and hug a tree." I looked around, and was convinced I'd lost my mind. No one was here with me, yet I KNEW I'd heard his voice! I also felt this warmth surround me. I looked down at the rushing water below and out of the corner of my eye, I saw an old tree on the bank.

I climbed off the ledge and walked over to the tree. I hugged it and I cried and cried and cried. These were the first tears I'd shed since being told I was HIV+, with the exception of what I have come to describe as the one obligatory tear I shed in that doctor's office. As I sat there crying, I remembered as a young child being told by my father that tears are a bath of the spirit.

The next day, the friend who had been tested with me, came to my door. This time I let her in. She was in an excitable mood because a number of our friends were on their way to a political action in another town. She told me to grab some clothes because we were going to go and support them. A few minutes later as we drove down the highway, she said, "How come you've been isolating? And how come you're so quiet today?" I told her my test had come back positive....that I have HIV. She didn't respond immediately, but I heard her crying. She reached out and took my hand in hers. I could not look at her. I felt such shame! She pulled the car off the road, and hugged me, saying, " Amber, I don't know HOW but we WILL get through this TOGETHER. I PROMISE!"

She was the first person I disclosed to. Today, everyone who meets me knows immediately that I am a person living with AIDS. Today I have no shame. My AIDS-related illnesses do not allow me to be in denial.

A year after being told I had HIV, I was diagnosed with AIDS. It was on that day that I wrote my first letter to AIDS. It was not a very nice letter, I must admit. I was angry at it for invading my body, bringing about such changes in my life. I was angry that I would not live to see my three beautiful Grandchildren grow up. I was bitter and wanted revenge on those men who raped me. I wanted them to pay for what they did to me - I wanted them charged with murder. After all, they had not only raped and stabbed me, but they left me with an incurable disease.

I immediately began researching what "long term survivors" were doing. I decided to amongst the ranks of long term survivors. I began eating better, taking vitamins and nutritional supplements, being monitored by my doctor regularly. I moved back to Canada where my family is, hoping to be able to develop a healthy relatinship with them. This has not been the case. My mother and sisters, unfortunately, are very closed minded. They do not accept me as a lesbian or as a person living with AIDS. I realized it was in my best interest to have no contact with them.

I go into a Sweat Lodge every month, visit our Medicine Men, participate in Ceremonies. I made two hand drums. I drum and sing daily and I perform with "Manitou Kwe Singers" - a Toronto based First Nations women's hand drum group. Many things have changed. I decided early on that it might not be a bad idea to develop a relationship with this thing called AIDS. There was nothing I or anyone could do to make it go away. I decided to make it my friend. I figured if I was good to it, it would be good to me. I have received so many gifts as a result of having AIDS....a new found awareness of what life is really about, an appreciation for each day, a deep gut level of love in my heart for those in my life.....too many gifts to list.

It's been a long journey for me, with many stories along the way. I am honoured to share this journey with you.

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INDEX
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MY YOUTH
RECOVERY
BUFFY
CHILDREN
AIDS MEMORIAL
HIV/AIDS...TEACHING
HIV/AIDS....FAQ's
JOURNAL (1)
JOURNAL (2)
JOURNAL (3)
PHOTOS(MY FAMILY)
PHOTOS(MY PETS)
HONOUR
AWARDS
RINGS

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