I was given several small books, which I still have to this day and I keep them as a reminder of what was going on then for children versus the improvements in North America now.

Upon reading books, I found that I quickly had to stop because reading about the possible infections was extremely frightening and the thought of Katie getting any of them was just sickening.  Among those listed were blindness and possible club hands and feet.  At that time, when a baby got HIV and had a bad CD4 count when they were very young, there was no turning back. You were told what age they might live to - in Katie's case, two years (she actually died at 9 months - 3 months after her diagnosis).

I remember reading medical journals and trying to struggle through the medical jargon to understand what was going on.  When I went to the Vancouver 1996 World AIDS Conference and listening to Dr. Robert Gallo speaking to a standing room only room, I came out not having understood most of what he had said.

I believe it was the same conference that a group of young people got together and did a "translation of the medical jargon".  It was hilarious because all of us in the room agreed it was much needed.

After the conference, together with Abbotsford Mennonite Central Committee, the AIDS Community of the Fraser Valley and the Okanagan AIDS Society I went on to teach children in schools about HIV.  We usually went out in two's, preferably a man and woman, because it was easier to field questions.

Upon entering one school in Surrey. B.C., I had been warned about the school district and so I asked the teacher if it was a problem saying the "C" word.  She asked me what that word was and I told her "condom", she said "no, that's fine!  Just don't mention the "G" word!" I looked at her inquiringly and she said "Gay".  At that point, I was not sure whether to turn around and leave but decided the teens needed the education.

Many young people asked me why I wasn't coming into their schools and they also told me about how many girls were getting pregnant.  Unfortunately, we were unable to visit schools without the Principal specifically asking the District if we could come in.  There was no curriculum that included us and I still feel this was a big mistake and a disservice to the teens.

I soon found that translating what you know to teach young people is quite a feat.  It helped enormously that Youthco was at conferences to show us how.  There was one conference at the Western Bayshore Hotel in Vancouver, where Youthco had a workshop on how to teach young people. We all crowded in, doctors and everyone, because it was such an effective way of teaching.  It introduced young people to all the fluids in the body by calling them their street names: nasal fluid = "snot", urine = "pee", vaginal fluid and semen = "cum".  In the process of writing the words on a flipchart, kids became engaged and realized this was not going to be an authoritarian view of AIDS but something fun and interesting to listen to.  Once they were captivated, it was easy to move onto the rest of the presentation and gain their trust.

Recently, at a Toastmasters' event, I had to do a speech which was simple in language and cut out jargon and so I did my HIV training for them.  I think many of them were surprised at how little they knew and it was obvious that they would not have been able to teach their children about HIV.

I believe that groups like Youthco, which teach peers about HIV and do counselling, are one of our most important assets and funding to such bodies is essential if we are able to practice prevention and reach youth in a way that they feel comfortable learning and that best suits them.

The big news was that Seal Team Six finally got Bin Laden. Tthen Ghadafi’s rule ended and finally there was kim jong il, another ruthless dictator, who died of a heart attack.  There was an Arab Spring and the US troops finally came home, ending years in Iraq.  Peace finally seemed more than a dream.

Not only that, there was a Royal Wedding. It was just like a fairy tale.

Then “Why so sad?” as the Joker would ask.

I think this year has been the hardest ever for me financially since arriving in Canada and it reminds me a lot of the economic situation when I left England in 1980.  The government has talked about the inflation rate being the lowest in a very long time. Where on earth do they get their figures?  All I see are the highest gas prices ever, higher transit fees, increasing food costs, higher hydro bills and even more taxes.  Phone bills are crazy and each time I go to cut the phone off, then they tell me what a great deal they have and how they can bring my phone bill down!  So why not tell me before?  As for TV channels, anything you used to get for free or next to nothing seems to have skyrocketed.

Not only that, if you cannot afford to buy a house, you can’t afford rent either!  You end up borrowing money just to live and get further into debt.  January and February used to be the time to buy RRSP’s.  Now it is the time where people get their loans consolidated.  The banks are still, somehow, managing to turn incredible profits on the back of massive interest rates.  “Occupy Wall Street” was the result of people saying “I just can’t take this anymore”.

When Jack Layton died this year I was extremely sad, much the same as I felt the day Princess Diana died, but for different reasons.  I felt he was the one leader who understood that credit card interest rates were totally unfair, astronomical and out of the ball park.  He was a leader who talked to people and understood the hardships.  When Jack died, I watched his funeral and felt like crying.  We had lost a friend who not only knew the hardships poorer people faced but he was also a great friend to people with HIV, the lgbt community and abused women, as well as many others.  That’s why we called him Jack and not Jack Layton. We thought of him as a buddy, a pal, someone who was there for us, who had our backs, who cared.

As we go into 2012, I am actually trying really hard to think that there’s about to be a better life ahead.  There are so many terrible places to live in the world and when you look at Somalia then you have to think that any one of its starving people would be so grateful to live in a country like Canada.

I also have hope for the future especially with the news that the HIV meds have meant a decrease in the spread of the virus and I have to consider myself fortunate that I can access affordable meds, unlike many countries in Africa.  However, now with the news that HIV meds are stopping the spread, it will become even more imperative that Africa gets the medication so badly needed, that we fight automatic criminalization of people with HIV and the stigma surrounding HIV is seen to be what it is... plain ignorance.

It is my hope that there will be good news at the World AIDS Conference in Washington DC next year and I know that a vaccine must be just around the corner.  I’m going to try to believe that 2012 will be a milestone year.

Happy New Year and to all my friends with HIV - fight on, we are almost there!

A LOOK BACK Elton John, right, is joined by Ryan White, left, and Jason Robertson, both suffering from AIDS, as he performs at “For the Love of Children” benefit for children with AIDS and other serious illnesses in 1988. (Alan Greth/Associated Press)

The 2011 World AIDS Day highlighted how far we have come with treatment for HIV and the words “Count down to an AIDS-free generation” made headlines.  Focus was placed on the decline of mother-to-child transmission through HIV medication and the reduction in the chance of transmitting the virus by 96%, with adherence to the meds.  Good news if you live in a country where there’s affordable access.

The thought of an AIDS-free generation leads me to think of how things were in the past for children in particular.

I want to take a few moments to remember a very special boy who made headlines in 1984 and whose 40th birthday would have been on December 6, 2011.  His name was Ryan White.  Ryan was born in 1971 in Kokomo, Indiana.  He was a haemophiliac and had been given numerous transfusions.  It’s unclear as to the exact date he became infected.  Approximately 90% of haemophiliacs who were treated with blood clotting factors between 1979 and 1984 became infected with HIV. In December 1984 he became extremely ill with pneumonia.  He had an operation to remove part of his lung and at that time he was diagnosed HIV positive.

No one hears the names Jeanne Elaine Hale and Hubert Wayne too much but they were the brave parents who fought to the very top to allow Ryan to remain attending  school.  Eventually, the Indiana Department of Education ruled that the school must follow the Indiana Board of Health and Ryan was allowed back to school.  When Ryan returned, 151 of 360 children stayed home.

Ryan also worked as a paperboy and many people on his route cancelled their subscriptions, believing they could get HIV through newsprint. In addition, the middle school he attended forced him to use a separate bathroom, required him to eat with disposable utensils and withdrew his right to attend gym class.  His family and he were called “queers” and he was very miserable.  A bullet was eventually fired through his living room window and, after the school year ended, the family finally left and went to live in Cicero. There he was met at the high school by the principal and some students who welcomed him and shook his hand.

Ryan White died on April 8, 1990.  He had become famous and was good friends with many celebrities and politicians but he said he would trade it all in if he could not have been HI-positive.

How things have changed!  Or have they?  Just last week, we heard of a boy being banned from a school in Pennsylvania because he was HIV-positive.  It is absolutely stunning to read of this type of ignorance today in a country that has ready access to education and media.

When I founded the Hummingbird Kids Society in 1996, it was to give families a chance to meet with other families who were sharing the same HIV secret.  I was so gratified to see that families such as mine were able to come out of secrecy and were finally able to connect with other families in the same situation.  When the society was formed, I went on TV and Radio to talk about children with HIV.  People were stunned at the suffering of those families and I was encouraged by their compassion.  I believe that the majority of people care very much and that they would be against any type of ignorance.

So what needs to change today?

Education? Certainly! We need dialogue, media coverage. But I do wonder if the dynamic can change so much that stigma and even the word “acceptance” were not talked about as much as “community” and “friendship”, so that stigma actually becomes a word which is ugly and not used as much.  CHANGE is a hot topic,  and I hope that as the World AIDS Conference in Washington DC draws near, the media will focus on how words and actions result in who we become.  Think about how the words “war against.. ”, for instance, have been used, to changedsociety’s relationship to fear and to destruction.

I think that the “It’s Different Now” campaign is a perfect example of leading the way in changing perceptions and fear.  The campaign has focussed on people being the same as anyone else and that HIV is a bi-line of who they are.  As a person with HIV, believe me, I do know the problems with the toxicity of meds but for once in B.C., I have seen a new interest in young people in getting tested and being aware of their status and that of their partners.  They are being educated at Simon Fraser University and at University of BC on the importance of medicine in stopping the spread and I do believe there is less fear.  It is the first time in a long time that I have seen mass education and increased knowledge of HIV and I am encouraged to think that things are really changing.

When I was 18 and living in England, my mother and father had recently divorced. My mother's family was keen for her to move back to Canada and my older siblings and I encouraged her to start a new life back in the place where she had grown up. After much worrying about us, my mother decided to act on the opportunity and a year later we were waving farewell to her at Heathrow Airport. For me, I knew it would be a short farewell because I intended joining her in a year or two, after I had found a career that I could transport to Canada.

My first choice of a career was that of a teacher in history but I thought that my knowledge of European and English Parliamentary history would not be very useful in Canada. Then I decided I would get a "stop-gap" job.  So I went to community college to take an Executive Assistant course, with specialties in Economics and Accounting. The "stop-gap" lasted 17 years.

I was introduced to my first typewriter in 1978. It was a "manual" typewriter; I had to hit the keys very hard with my fingers so that a piece of metal on a long handle would fly up and hit the black typewriter ribbon and then make the letter on the blank piece of paper.

Before long I was able to type 70 wpm (words per minute). My friends marvelled at how fast I could type and I felt proud of myself! I also took shorthand but that story is not something I will go into here because I was pathetic at it. We were not allowed to use white-out at college and had to make corrections with typewriter eraser pencils (as if it wasn't taking long enough to type a letter!).

I also learned the Gestetner machine, which had a large metal drum and you typed on plastic paper which was then attached to the drum and you turned a big crank handle to run off large amounts of copies. Errors on the plastic paper were corrected with red liquid plastic and my documents always seemed to have more than their fair share of red spots. There was also the "thermal imager", which was the closest thing to a copier. It heated up and somehow burned words onto the page - you didn't want to get too close to that puppy! And, of course, there was the telex machine for sending messages across the country.

My first job was at a temp agency and it was great experience being sent to various businesses and meeting all kinds of people. It looked fabulous on my resume too, when many jobs wanted experience in their field and I had been able to have a few weeks in so many different companies.

But then came the electric typewriter. I clearly remember going to a temporary job and warning my employer that I was not used to an "electric". I wasted so much paper that day that it was ludicrous. I pressed my finger hard on a letter, as I was used to doing with a manual typewriter, to find that the letter was duplicated many times across the page - the typewriter seemed to have a mind of its own. I bought my own electric to overcome this obstacle.

When I finally joined my mother in Calgary, Canada, I immediately got a job in an insurance office and was the receptionist who typed cheques in her spare moments. It was then that I really started to curse carbon paper. I had become incredibly fast at back-spacing and correcting errors with white-out but carbon paper does not allow you to hide those errors very well, especially not on cheques! Thank God for the invention of cheque-making machines!

Later, I worked for an accounting firm and remember typing columns of figures by calculating the amount of spaces across the page, counting the number of columns and the number of figures in each, then dividing that number in half and starting to backspace from the centre of the page to the appropriate spot to begin. I look back on that and cannot believe how time consuming it was - and then only to be told that a change was needed and we had to start over!

Photocopiers had arrived too and we devoted 10' x 12' rooms just to house the largest copiers.

After moving to Mississauga I was given a Phillips electric typewriter-computer. It was a machine where typing a document was recorded on a small magnetic tape and then you could play the tape and it would automatically type out what you had previously entered. It allowed you to stop and correct any pieces and then you continued with the document by using the tape again. It was probably the most time-consuming, utterly ridiculous machine I have ever used.

In 1986, I moved to Vancouver and worked for an accounting firm where I was introduced to a huge IBM computer. It was like watching a TV screen with green letters on a grey background. When I sent something to print, I had to walk half way around the office to collect my printed work from a machine that looked like a cabinet with a large plexi-glass top. It was almost as tall as I was.

About six months later, I was asked to work at the Vancouver office of the accounting firm I had worked for in Mississauga, Clarkson Gordon (or, as it is now known, Ernst & Young). It was there that I fell in love with a computer - a brand new Macintosh. The Mac looked like a box and it is the computer in the picture of Steve Jobs in his early days which appeared on the cover of Time magazine. It was so easy to use and so easy to cover up my mistakes - yay! I used an Excel program for the first time and loved it. All of my computer training was on that Mac, which was very unusual because most other people were working on an IBM computer at the time. Our accounting firm decided on the Mac because it was easy to line up columns of figures. It had no f1, f2 or other f keys and to this day I still have no idea how to use them. It was then that I was first introduced to email and I was the only one in the office allowed to use it because of security concerns.

My last job, before I was diagnosed with HIV, was as a secretary to the Secretary Treasurer of a School District and think I got the job based not only on my experience as a secretary in accounting firms but also because of my experience on the Mac. Thank you, Steve Jobs!

As I sit here, typing on my laptop, and sending this blog by email, having been on Twitter and Facebook this morning, I look over to an old portable typewriter that I have and think what a wonderful piece of machinery it is. Life used to be a lot slower then and I enjoyed the clatter that the typewriters made. I am so happy that I have been a working part of a communications revolution but one thing that I miss are all the letters my father used to write me from England. I have kept them and love to see his handwriting. I wonder if people will actually know what their parents or childrens' handwriting looks like in the future.

I may have aged but the experiences I had along the way with changing technology were fascinating and well worth it.

Recently, I was watching a TED talk on how beautiful things make you feel. I realized there are those moments in my HIV life when I have had acute feelings about HIV, good or bad and I would just like to share some of those with you. What I would like you to do is to imagine each situation and see if a part of your body feels something.

Here are ten that I have thought of.

10. Seeing children and babies and knowing mine died of AIDS when she was nine months old. First of all, I LOVE children and think they are a gift to be cherished. I look at the child and smile, whether they are having a tantrum or are playing, even talking to me, I feel joy. My chest breathes steadily and I feel relaxed. Sometimes I laugh at their antics and I feel so happy for the parents that they are lucky enough to experience a child.

9. The owner of a spa told me they could not provide me with services, once they learned I was HIV+. They told me they were worried if the workers gave me a massage, the oils and body sweat would transfer to the masseurs' hands and they would get HIV. That one made my heart beat faster and I was angry but shocked too and then my eyes started to blink rapidly, holding back the tears. Strangely, I had a very odd feeling of revenge and felt that I must educate this person.

8. A manicurist told me she would not be able to give me a manicure because other people coming into her establishment might find out that she was giving me one. I felt exhausted. I sat back in my chair and felt like giving up. It made my shoulders slump and I felt immobilized. I was tired of people’s lack of knowledge when newspapers articles were covering HIV and I knew this manicurist had a daughter.. I wondered what she was teaching her child.

7. I watched an HIV+ man pass a drink around the dining table for everyone to try. I didn’t know I had HIV and had it for two years but I knew that he had HIV. I felt my heart beat rapidly, my chest was tight and I was in panic, no one else knew but me and I felt it was my duty to warn people but I had been bound to secrecy. I felt like running away.

6. I found a friend was hiding the HIV status of their relative from me and I was hiding my HIV status from my friend. I gritted my teeth and was very angry for the first time. My throat felt tight and my jaw was set. I frowned. I realized that we were letting the terrible stigma control us, so that we couldn’t share something we both cared deeply about. I felt like shouting it from the rooftop.. “yes! I have HIV! Why should I hide? I am the leper of this century!”

5. Going to my first International AIDS Conference. A smile lit up my face. I was excited. My mind felt thankful and my whole body felt like the words “at last!”. I felt warm and comforted. I finally felt like I was part of a team.. people understood.

4. Two years after my diagnosis.  Traveling on the London Tube with my friends, a group of people who were not HIV+ but were HIV+ workers. They started to talk about their work with HIV. I looked around, my stomach turned, I felt very uncomfortable, panicked. I had always whispered about it in public and here were people talking about HIV very openly and loudly, seated across the train to each other. I was embarrassed, my face turned red and I wanted to hide, to get off the train, to disassociate.

3. Calling home to talk to my husband and finding out he had gone fishing with a friend and my mother was looking after the house. She had no idea I had HIV and I knew there was literature scattered everywhere on it. When she answered the phone I thought I had dialed the wrong number and then my heart beat very fast, knowing what information was in the bedroom and knowing that she was a snoop. My brain was racing with thoughts, too quickly to snatch one and use it. Then my mother said “I know everything!” and I felt absolutely sick to my stomach.

2. This one was a big one for me. Listening to Stephen Lewis on CBC Radio being interviewed about his role as the UNAIDS representative to Africa. Hearing him talk about the rows upon rows of beds full of people dying from HIV and coffins placed ready to use, beside the beds. Hearing of children raising each other or watching their mother die in a hut. I closed my eyes and listened. I was aware of my slow breathing and then of tears slowly rolling down my face from my closed eyes. Eventually, when the interview was finished, I started crying and crying, in fact bawling. I was totally engulfed in sadness and a feeling of hopelessness. Yet, I felt a huge relief that someone was finally telling it like it was.

1. The moment I heard my baby’s HIV test had come back and they were about to tell me the results. I had no idea she or I had HIV until then. My knees shaking uncontrollably. Closing my eyes and my mind was saying over and over again: “please God don’t say it, please God, don’t say it”. My heart pounding in my ears, feeling utterly at the mercy of the person giving me the diagnosis. Feeling like I was about to slam into a wall and not being able to stop. Feeling like screaming and knowing there would be no sound; I could open my mouth and would be unable to utter a word. Feeling utterly alone and in terror. Not wanting to go one minute further. Feeling a massive panic.

What has your body felt with incidents that you have had with HIV? Anger? Fear? Resentment? A tight knot in your stomach, trembling.. maybe even happiness sometimes?