It was June 1994.When I heard the specialist give me my HIV diagnosis and tell me that my baby girl had AIDS, the shock was paralyzing.

I knew I must have gone into shock because my legs were shaking and I felt like someone had come and punched me in the gut.  I had to sit down because I was no longer able to stand.  I had such a sharp intake of breath that I felt winded.  Thoughts raced through my mind so quickly that I couldn’t even keep track of them.  My eyes squinted and a frown settled on my brow.  I started to feel sick, I wanted to throw up.  It was, quite honestly, the worst moment of my life.  Even Katie’s horrible death at nine months (just three months after diagnosis), was not as big as hearing the news that we were both infected with HIV.

Appointments were set and I had my first meeting with a women’s HIV specialist, Dr. Burdge.  I don’t have to tell anyone who knows him just what a wonderful, caring individual this man is.  He spent a lot of time with me and as I was leaving the clinic, he put his hand on my shoulder and said, “I know it’s hard but try to have a positive attitude, it will help you in the long run”.

I couldn’t believe it!  A positive attitude?  Was he crazy?  I had just heard that my daughter would die before she was two years’ old and he told me that “some people live up to ten years!”, our fates were sealed, and I had to try to think “positive”?

I left that office and drove along the Vancouver streets.  It was the “other” time the Canucks got to the final of the Stanley Cup.  People were on street corners waving white towels, there were horns pumping, Canucks flags being waved.  Everyone was happy... well, almost everyone.

So what happened next?  My sister had flown up from San Francisco and she was the only member of my family that knew - she told me the exact same thing as Dr. Burdge but she put it in a language that I could understand.  “So what are we going to do?  All lay down and die?”  For some obscure reason, that made perfect sense to me and I realized that this was not the time to wallow in self-pity, this was when I would need my greatest strength.  I would have to look after my baby daughter when she came home from hospital, I could not be weak.  I prayed for strength to get through it.

From that moment on there was no time to waste, I had to make a plan of how we would keep the secret of what had befallen us.  I had to think of a good lie to tell everyone as to why Katie was still sick and I had to keep my own illness a secret too.

I gave clear instructions to doctors and nurses not to leave long messages on the phone that might be overheard by someone visiting the house.  I had to make sure all labels were removed from medicine bottles to stop any prying eyes (my mother) from discovering the truth and, hardest of all, I had to stop myself from breaking down crying.  I accomplished that by biting my tongue when I felt it coming on if I was in company or on the phone receiving questions about Katie and how she was doing.  It was truly a nightmare situation.

On August 31, 1994, Katie died. The next day, it seemed that I was standing in an empty warehouse... that is how alone I felt.  I was tired.  I had stepped up to the challenge but I felt no sense of achievement, just exhaustion and numbness.  Life didn’t seem worth living.  I had just seen the malnutrition and pain my daughter had been through and I felt the same fate awaited me.  I found it hard to find meaning to life at all.

I went in search of a book, something to give me some words at the funeral, some sense to it all - an innocent baby, dying an excruciating death.  And that is when I found Rabbi Kushner’s book “When Bad Things Happen To Good People”. The title grabbed my attention - can anything be more innocent than a baby?  I skimmed through the book at the book store and took it home.  I devoured every word and when I came to the end, I had answers.

We make choices in life - to find cures for illnesses, or to spend our money and time in other ways.  They are not necessarily bad choices but we do have choices.  We have a brain to decide things with and those decisions make us human.

Now I had a choice.. to lay down and die and accept my fate or to remember Katie in the best way I could - by sharing her story with others.  It is perhaps obvious what I chose... but not immediately.  At first, I decided I could not live without her and every second of every day she would be taken further from me.  But very, very, very slowly I knew that I couldn’t wipe our spirits away as though we had never existed.  I judged each new hardship against that fateful day when I discovered our diagnoses.

I remember clearly the first time I laughed.  For three months, just as the doctor told me, I could think of nothing else, but then I watched an episode of Frasier and laughed out loud. I immediately felt guilty.  How dare I be happy?  But it happened. It was a roller coaster ride for two years after that but then I finally gave in to the realization that I would be happy - sometimes - and it would be what Katie would want.  I realized too that I am just human and am not naturally sad.  All humans are born with a sense of humour; babies burst out laughing before they can speak and I knew that I was being drawn into the positive side.  It was the right thing to do.

I recently attended a meeting which was part of a series by the University of BC and was funded by the Canadian Institute of Health Research.  The meeting was to report back to the community on research that had been done regarding family caregivers and their role in palliative care.  The topic covered a survey of how caregivers felt about looking after loved ones at end of life stages.  There was a good mix of hospice nurses in attendance and the general public; about 100 people were present.

The presentation commenced by revealing that in surveys many family members felt that they wanted to look after another family member who was dying because they wanted them to be able to die at home.  They had often made promises to the family member.  As time went on, they realized that this was much more than they had originally envisioned but felt that they had to stick by their promise, even though it compromised their own health and well-being.  Some set up baby monitors so that they could do a chore and still hear how their family member/patient was doing.

Most of the time, the deciding factor of whether or not the family member went into a home was largely dependent on their incontinence - especially among men caregivers, who found it very hard to deal with.

The team also looked at rural situations and these were particularly difficult when a family member might have to drive hours with their father/mother, etc. to a hospital for various treatments and the caregiver was often exhausted, especially if they had young children to look after as well.

I well remember looking after my mother when she had just had a stroke and was starting to get dementia.  I was afraid of leaving her on her own since she had already left pots boiling dry on the stove, and I was very worried she would fall trying to negotiate stairs.  This was a common theme among survey participants, where the caregivers became hermits to look after family members.

I could relate to the incontinence factor too and remember one incident when my mother and I went shopping and she was unable to wait for us to reach a bathroom!  I had to take the truck to the car cleaner twice as a result.  It was a horrendous day when I eventually got her to a Canadian Tire bathroom and then ran across the road to buy baby wipes, diapers and new clothes and then race back to the bathroom to change her and throw away her soiled clothing, while cleaning her up too.  Already on anxiety pills, I was completely frazzled and ended up sending my mother home in a taxi while I took the truck in to the car detailers.

For someone who already has an illness, trying to look after a sick older relative is next to impossible but you can feel an enormous sense of obligation and guilt.  Eventually, you have to come to terms with the fact that you may not be giving them the best care and a nursing home is your only option.

I started the search for a nursing home and looked at many.  Unfortunately, when the day comes and your health authority calls you to tell you there is a vacancy, you have to make the decision whether or not to accept the allotted place and then be prepared to move your loved one within 24 hours.  I found this incredibly hard, since the home I wanted my mother in was not the one that they had offered and the thought of leaving her in a one room bedroom, when she had been used to a full apartment, made me extremely sad.  In addition, the pressure I received from my brother and sister (who lived in Spain and California) not to move her into a home and to take care of her myself, was enormous and made me feel very guilty; siblings and family members who are nowhere to be seen, don’t come and visit and yet feel it is their right to add their two cents worth, can only add confusion and misery to an already intolerable situation.

I moved my mother into the new digs and it was gut wrenching to hear her ask when I would be back and hear her saying “please, don’t leave me” - I felt like the lowest of the low... but I felt her safety was paramount and she needed to be in a place that had equipment and personnel 24/7 because she was now in the Alzheimer’s stage.

I put her on a waiting list for the home that I preferred and about six months later, I was once again given the option of moving her within 24 hours.  This was an easier choice because I felt the level of care was so superior at the other nursing home.  After moving my mother, I was glad to be proven right.  She was bathed more, her nurse gave my mother extraordinary personal care and before long, her hair was nice curled, she looked and smelled cleaner and she seemed more engaged with her new friends.

The previous home had put all the patients together but this home had more severe cases and violent people in a separate unit. I knew my mother was happy.  However, with her care finally at a level that I was content with, I could not help but think that this was not how my mother would have chosen to live.  She was a very neat and clean person and was proud of how she looked after her home.  She would have been mortified to think she was incontinent.   I really wonder why we don’t have living wills that give the option for all of us if we get Alzheimer’s and are unable to feed ourselves, are afraid every time a family member leaves the nursing home, only to forget they were even there a minute later or just wheel ourselves around hallways, not understanding the privacy of others’ bedrooms.

At the end of the meeting, I asked the researchers if they had considered what nursing homes would be available for gay or lesbians in the future and whether people were looking after loved ones at homes because the choices in nursing homes was so pathetic.  There were no answers and I found that disturbing because with an ageing baby boomer population, there will soon be a time when many, many more nursing homes will be needed.

At the end of the day, I felt that what "caring for caregivers" really means is helping them care for their loved ones, affording caregivers to get time off and care for themselves - rather like providing the oxygen mask on airplanes to the caregivers first so that they can help those they are with.

Do you think that social media is at the height of its popularity?  I had to wonder when Google+ was introduced if social media could take on yet another forum but I continue to be astounded at just how thirsty we all are for more ways of connecting in the virtual hemisphere.

My recent favourite way of procrastinating is Pinterest. Pinterest is a unique forum that allows you to post, comment and file various images.  You make up your own filing system or you can use the suggestions Pinterest has - style, my dream home, men’s clothing, women’s shoes, the list goes on.  My graphic designer friend, Jason, said he thinks it is a forum that a lot of women use...   either way, if you want something different to do on a cold winter night, check it out.  You will probably find some of your friends are already using it.  I noticed that it was difficult to join at first and am guessing the Pinterest folks are either ironing out some wrinkles or they want to make it a little exclusive.  You can put yourself on a waiting list or ask someone to invite you.  I wanted to join and did both and was signed up within a week.

Perhaps the least talked about form of communication when comparing social media platforms and yet one of the most useful is YouTube.  It never fails to amaze me how social media gurus talk about Facebook, Twitter and LinkedIn and yet leave out YouTube.  It is invaluable and I think it is the forum I would most miss if it were not around.

If you are ever not sure of how to use Facebook, make cookies from scratch or build a bar in the basement, then check it out!  It’s incredible.  I think there are so many different topics on there that it’s like a virtual, visual encyclopedia.  I just looked up Costa Rica beaches and wished I didn’t..  Wow...beautiful and set to music too! (see below) 

Then if you want to broadcast yourself, set up a webcam and go for it - of course it will be administered for approval first as we don’t all want to see someone dancing naked! So don’t get wild and crazy but I had fun and you can find me under HIVgirl1    I also used it as a forum to tell my story a year or so ago.

When it comes to campaigning on an issue, I think Twitter is amazing because it is so rapid but you can watch the news articles and personal video footage of demonstrations and interviews on You Tube too.  I am hoping to have my abstract on “Campaigning for AIDS-related topics via Social Media” chosen for the World AIDS Conference in Washington this year because I find social media invaluable as a campaigning tool but you really should have a strategy too.

Finally, Valentine’s Day has to be the most popular day on YouTube - I had a hard time even getting on YouTube that day.  It’s great to be able to pick a song or visual or even make a Valentine message yourself and send it over the airwaves to your loved one.  I expect I will be doing the same thing at Christmas for my family in England, Spain and California.

Lastly, the original enjoyment I got from YouTube is still the same - just to sit down, watch a favourite musical artist and enjoy their songs.

Have a happy virtual social media week and let me hear about your favourite virtual media forum and why it is so appealing.

 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.