One Drop

I love to paint my fingernails. It’s my favourite way to unwind and a great way to express myself – soft pink, bold red, vibrant blue. It is not uncommon to see me with three different colours within a one week period.

Last night I was painting my nails a deep red that is full of life. This particular polish was a little bit runny and a drop fell onto my fingernail. As the drop ran down my finger it looked like a drop of blood. A combination of thinking about the upcoming AIDS Walk and the reflective space I enter when painting my nails got me thinking about HIV. As the drop of “blood” rolled down my finger I started thinking about what it would mean if I had HIV in my blood.

In that one drop I saw fear and stigma and discrimination.

Shortly after I started working at AIDS Calgary, I met someone new and had the “what do you do?” conversation. When I told him I worked for AIDS Calgary, his response was “eww”. I have always worked with people who are open-minded, compassionate, and caring, so I was surprised by the response. I was so taken aback that my response was “Did you really just say “eww” to me?” He stammered. His next question was “Do you have it?”. That is absolutely a fair question if we are about to engage in a risk activity, but definitely not appropriate when discussing our places of work.

So, in that drop, I saw the fear and discrimination and stigma that people living with HIV must face every day – health care professionals taking a step back when they learn their new patient is HIV positive; being harassed in their apartment buildings because someone illegally outed them to their neighbours; the surveys people complete before receiving HIV education stating that they wouldn’t share a plate or a hug with someone living with HIV.

In that drop I also saw lost love and lost opportunity.

When I came out as a lesbian I learned what it felt like to have to come out on a regular basis and I knew that some people were not supportive of my sexual orientation. I experienced discrimination, homophobia and homo-negativity. But, once I met someone I was interested in, I never had to question whether they would still be interested if I had this virus in my blood. I never had to worry about the right time to come out. If I were HIV positive meeting someone new would be terrifying to me. Do I wait until we get to know each other to disclose? Do I tell them right away? Do I trust that they will maintain my confidentiality?

In that drop, I realized how much I take for granted.

At AIDS Calgary, we have 100% staff and board participation in the AIDS Walk. Some of us are living with HIV and some of us aren’t. Some of us have lost loved ones, family and friends and some of us haven’t. But we all care and we all have our reasons for Walking.

I Walk because I firmly believe in the work of AIDS Calgary. I Walk because I care.

Why will you Walk?

Please join us on September 22nd, for the 2013 Scotiabank AIDS Walk for Life. Register here.

This article was submitted by Tamrin Heardt, Senior Development Officer at AIDS Calgary Awareness Association.

Strong Voices: Stories of Struggle & Strength Living with HIV

Our graphic novel ‘Strong Voices: Stories of Struggle & Strength Living with HIV’ is now available!

Working with very tight timelines to put this project together, our first step was to find 4 Aboriginal people living with HIV who were willing to share their story. We also needed to recruit 4 Aboriginal artists to develop these stories into picture form. Most importantly, we had to find one writer who was able to bring these stories together into a single book.

The first thing we did was put up posters calling for Storytellers. This was not an easy task - as in many communities, HIV is stigmatized and people are not always comfortable talking about their experience.

Bill, who works with Peer Support and as a speaker for AIDS Calgary, had volunteered before the project had even started. As a long-term survivor with 28 years living positive, Bill shares his story of how he became an advocate for awareness in Aboriginal communities. Bill is from a Métis settlement in northern Alberta. Keegan Starlight, a local artist from Tsuu T’ina, provided the artwork.

Michelle was one of the first people to call about participating in the project. From southern Saskatchewan, Michelle was raised in the city where she attributes her introduction to hard drugs at an earlier age. In and out of prison for most of her life, Michelle was able to reconnect to Aboriginal teachings through prison programs. She attributes her healthy lifestyle to Native spirituality and her family. Grant Smith from Edmonton provided the artwork for Michelle.

Aaron, a young man from Saskatchewan was adopted as a baby into a non-native family. Growing up he travelled across Canada and the states by hitch-hiking and train-jumping. While living in Vancouver he found out he was HIV+. With support of his family he is able to have a positive attitude and hopeful outlook. Tank Standing Buffalo provided art work for his story.

For the final interview we contacted Krista, an HIV+ mother who has given birth to HIV- children after her diagnosis. Krista is an advocate for HIV+ mothers, having faced discrimination and stigmatization in the medical system herself. Krista shares how she got to where she’s at and how her family has been her support and source of strength. Lydia Prince from Prince George illustrates her story.

With the guidance of the Strong Voices Advisory Committee and a local Blackfoot Elder/Cultural resource, we were able to include the medicine wheel teachings and provide examples of these teachings throughout the book.

The goal of this book is to bring awareness of HIV to the Aboriginal communities, where HIV is currently considered an epidemic. Due to social determinants and stigma, Aboriginal people are often diagnosed with HIV at a younger age and at later stages (with an AIDS diagnosis for example). Since 25% of Canadians who have HIV do not know it, our goal is to promote testing and harm reduction approaches while building awareness and support for those affected by HIV.

For a copy of the book (hard copy or digital) contact us at info@aidscalgary.org

The New HIV Era

The following is a personal perspective from a community member. ACAA acknowledges this is not the experience or opinion of all PLWH or those affected by HIV. Despite medical and scientific advances in recent years there are many people in our communities who continue to face significant struggles with an HIV diagnoses, long-term survival, and being significant others to PLWH.

So there I was practicing my own personal harm reduction in the lounge by having a ‘fake’ (non-alcoholic) beer with my buddy as we toasted in 2013 together, a couple days after the fact, but it was a true wish for each other, “Happy New Year!” This environment seems to provide us both with the opportunity for candid, thoughtful, and multi-topic conversations when we’re together.

“I’ll start,” I think to myself as my eyes slowly drift from the table top to the glass at his lips, “How did you react when the doctor said, ‘You’re HIV positive?’” I asked because I knew he’d been living with HIV for over eight months now and yet never appeared freaked-out, depressed, or frantic. He smiled, finished sipping his frosty glass, turned to me, shrugged and calmly stated, “It wasn’t a real big surprise. I didn’t freak out or have this ‘Oh my God I’m going to die!’ moment,” he poked back with a grin delicately shadowing a twinkle of chagrin. I stared back in a bewildered gaze, which clearly showed my puzzlement, appeared as though there were a bright neon sign radiating across my forehead reading, “I don’t get it!!!” With the drinks never empty for long, our conversation ricocheted from one topic to the next. He went on to say that medications were not necessary right now and that he`d deal with that decision when the time came. As to meeting others and a potential relationship, my friend has always disclosed his HIV status and is ‘safety-first’ in his activities. Our conversation varied today, and his responses were consistently casual, unalarmed, and panic-free. Whether it’s just my buddy or (as I suspect) a more general, public attitude towards HIV today, I could not stop wondering, “Why no alarm, concern, or ‘melt-down’?” As I stood at the corner waiting for the walk light, still pondering the questions launched by my friend’s outlook, I asked myself, “What am I missing? Where is the urgency and critical concern that once served as the mobilization engines for HIV & AIDS?” Although our paths had separated, the conversation caused me to rethink my current attitudes about HIV.

As an Educator I actively reflect on my knowledge, skills, and attitudes as they apply to my work and life. Reflecting continually since the conversation with my friend, I am now convinced that I’ve had an epiphany. I’ve upgraded that chip in my brain that harboured the images of wrath and devastation cultivated by HIV and AIDS in the 1980s and early 1990s. My buddy’s brain chip has a current set of information and references based on thirty years of science. My previous memories were ‘old school’ and my brain chip would get into a loop and only process the message, “We can’t let HIV become the death plague it once was!” After thirty years HIV has finally entered a new era, a bold time where we are witnessing discoveries in medicine, science, technology, new approaches to treatments, and an understanding of how HIV manipulates and maneuvers itself. With new young scientists and researchers the possibility of a vaccine and/or cure is growing ever-closer. New public health approaches to HIV prevention have resulted in a reduction of HIV transmissions and AIDS cases throughout the World. With such optimism and technology abounding it is essential that the ghastly and macabre path travelled in getting to this new era not be trivialized or forgotten. I have lost to HIV some who were dear to me and I have supported others in clinical medication trials, helping because side-effects prevented them from providing for themselves. HIV is here to stay---for now. My outlook has shifted; I expect to see more long-lived lives and the quality of those lives improved in the new HIV era.

Those who remember the dark and sombre era before 1996 when HAART (Highly Active Anti-Retroviral Therapy) began), will never forget those memories or soul-bonding experiences that were forged through great sacrifice and loss. As a veteran observer of that time, I realize we have achieved one of the goals we had set at the beginning of this nightmarish ordeal: securing a longer life for those living with HIV. Not only have I a new and forward focussed brain chip, I’ve also adopted the operating system known called, ‘Pozitivity’ --- just like my buddy uses! My vision is focussed on the new, twenty-first century HIV era and envisages individuals living longer lives with their families, having excellent health, and having lives free from HIV related stigma. The once very short travelled HIV road with the “Dead End” sign has been resurfaced over the last thirty years. The sign now reads, “Super-Highway” and goes for as far as the eye can see, leading the way to an effective vaccine and perhaps even a cure. Although mostly a chronic, episodic illness today, living with HIV wasn’t always this way. As it was in that dark era, it is the same in the new era - there is no cure for HIV.

Whatever questions and challenges someone may have about HIV, newer, longer-term questions and challenges are pressing and require immediate consideration. The new HIV era is here and science and medicine can control Viral Load [VL] and CD4 .counts. The “Super-Highway’s” hills and turns carry us on a social and holistic approach to HIV. New era challenges include: addressing HIV related stigma, realizing HIV is part of daily life for thousands, speaking openly about HIV, comprehending the importance of planning our own personal health strategy-which includes STI & HIV testing, and publicizing harm reduction as a means of promoting public health. These are some of new challenges awaiting us; I’m sure there will be others along the highway.   

People newly diagnosed with HIV do not often react as I once expected. The overall level of concern seems not to be one of survival, but rather one of ---I’m not really sure how to capture the feeling---anxiety, unsureness, or restlessness about the future? My buddy prophesized, “I know I can take pills and still be ok.” I respond to myself, “Well usually, as not all HIV treatments work for all people and side-effects can be harsh. Once started, medications are a life-time gig—every day.” I want to ask my buddy, “What about those future unpredictable sick times needing to be explained to an employer, instructor, professor, teacher, or spouse? Even more thought provoking; who in your family or social circle are you going to trust? I wonder if travels to the areas of the world you talk often about are possible if living with HIV. Are you prepared for the reactions you never thought would come from someone you know? Thinking of having and raising children? If you have HIV, is there something else you could have and not know?” I’m guessing my future conversations with my buddy will eventually get to some of these questions; at some point they will be asked. My friend is very aware that he is living in this new era of HIV where he expects to live a long and productive life. This outlook blends life, health, and a sense of respect both for the virus and for those it infects and affects. The imminent task for those living with HIV is having a plan for the future and for those affected by HIV to be part of those plans.

If living with HIV, one may want to weigh their new-found longevity on the one hand, with the quality of life they want and expect, on the other hand. Will this quality of life include an HIV stigma-free society? Will this new era provide access to all the testing and treatment technologies? Will there be an overall improvement in public health? Answering, “Yes!” to these questions suggests a real change is afoot, yet more questions arise: “To what degree will people living with HIV wage battles, grapple with stigmatization, struggle within structural bureaucracy, or succumb to the effects of judgement by family or friends?” How many challenges can long term survivors and newly diagnosed persons expect to endure and overcome in order to experience this improved quality of life so many are predicting happening in the new era of HIV. My buddy and others feel able to thrive and grow in this era of knowledge and understanding about HIV. How can we bring the best of the new HIV era to the people and groups who need it most? As we travel together along the Super-Highway let us discuss how to best accomplish an acceptable quality of life for those infected and affected by HIV.

Amazing Sex Worker Blogs That You Should Check Out Today!

This article was written by AIDS Calgary’s SHIFT Team Lead. Retrieved from the Shift Calgary Blog on Thursday, March 29, 2012. http://shiftcalgary.blogspot.ca/

One thing that makes Shift unique is that the program was not developed by sex workers, and is not sex worker run. In order to be strong allies, we strive to learn as much as we can about the experience of sex workers. As a case manager, one of the ways that I have achieved a better understanding about sex work and sex workers is through reading all the amazing sex workers blogs I can get my hands on. I am infinitely grateful for all the sex workers out there sharing their stories and ideas and advice, as it makes it a lot easier for me to do my job! There are LOTS of amazing sex worker blogs out there. Here are some of my favorite sex worker blogs so far:

Lusty Day
Lusty is one of the wonderful ladies responsible for the “Every Ho I Know Says So” video, where sex workers share the things they want their partners to know. Lusty shares sex worker related news and promotes sex worker organizations. In my opinion, the highlight of Lusty’s blog are the posts about touring as a sex worker in Australia, a country where sex worker is decriminalized in some parts, legalized in others, and criminalized in a few spots too. When advocating for the decriminalization of sex work, it is essential we strive to learn from areas where this is already the case. Thanks Lusty for your amazing wisdom!

Tits and Sass
This blog is amazing because it not only is up to date on all the sex work related news, it is hilarious! My favorite is the extremely witty and to-the-punch article “Your Story Already Sucks: An Open Letter To Tourist Journalists” which points out all the things NOT to do when looking to write a piece about sex workers.

The Fairy Whore Mother
This blog is the ultimate resource for sex workers. This blog has lots of amazing advice and tips on how to stay safe, how to manage your time and money, and how to over all just be an awesome as a sex worker. This blog features a lot of really relevant well articulate information for sex workers, such as the article Double Time which talks about duo calls where two sex workers see one client at the same time, which has some safety benefits as well as can earn sex workers more money. This blog is run by Jenny DeMilo, Lauren Kiley, and Savannah Darling, three lovely and very wise sex workers.

After Hours
This is a blog by Amanda Brooks, an escort and author of The Internet Escort’s Handbook. Amanda knows her stuff and has lots of amazingly valuable advice and information about working in the sex industry. Amanda shares her experience being featured in a national geographic documentary on sex work in the United States, which proved to be a rather exploitative experience (further supporting the need for Tits and Sass’s article to journalists), as well as up to date responses to sex work news. Amanda Brooks also writes articles on her other more formal blog, The Notebook: A Business Blog For Escorts.

Day 0 - Fear

ACAA had the opportunity to share a fantastic video from one of our volunteers. The video detailed his own personal story of being a young gay man living with HIV and the stigma he faces regarding online disclosure. http://aidscalgary.blogspot.ca/2012/01/lets-talk-about-online-disclosure.html We are very proud of this individual for sharing his story. He is back with a new video regarding his new treatment regimen.

The views and opinions expressed in this video are soley those of the original authors and other contributors. These views and opinions do not necessarily represent those of AIDS Calgary Awareness Association, the staff, and/or any/all contributors to this site. For more info on our GIPA program, please visit: http://www.aidscalgary.org/getinvolved/gipa.cfm

Happiness

This blog was submitted by one of our clients. He is a GIPA volunteer blog writer. For more information on the GIPA position available please check out http://www.aidscalgary.org/getinvolved/gipa.cfm


For a long time I had been struggling with my depression. You know, having HIV, a few deaths in the family, etc. For the longest time it had all been about me, well I am coming to the realization that it is not all about me. There are much bigger things going on in the world today that I cannot even comprehend.

There are massive tornadoes, hurricanes, earthquakes, bombs going off left, right, and center, planes crashing, and alien invasions. Ok I just made that one up, but you get the idea. My problems, if you want to call them that, are much smaller than I think. So what if I did drugs due to the fact that I have been horribly depressed? So what if I stole a car again due to depression? Sure, I made a whole bunch of people angry and disappointed in me. Did I kill anyone in the process? No! Did I hurt anyone in the process? Yes! The only person I hurt was myself, but I am now realizing I can change the past if I so choose to, and so can all of you. It is little steps.

So instead of whining and crying about my ridiculous rampage of self-destruction I have decided to do something about my life before it is too late. Well, I have been making small steps - that may sound stupid to some. First I got myself a cat. I would highly recommend that if you live alone. Animals are a great friend to have around, even if they want to play at 3 in the morning. Second, I got myself a new and fresh haircut and not some run of the mill hair cut - a mohawk, that's right, a mohawk. Another way to feel good about yourself is to start working out. You feel way healthier and happier in the long run. I could go on and on about what you should do to feel happier and healthier but you have to find that out for yourself and what is right for you. However there is one other thing I would recommend; start getting out more and connecting with the world again. Don't lay in bed all day eating junk food and getting fat. Go visit friends, go hang out at AIDS Calgary, go to those movie trips that AIDS Calgary plans. Talk to those friends that you have not talked to in ages and go for coffee. Before my depression I use to sky dive, mountain climb, bungee jump, and I even went spelunking; and somehow I lost all of that on the way but I am here to say that I am finding my way back and so can you!

What I am trying to say in the nicest possible way is stop whining and deal with your problems at hand. There are much greater things happening in the world today to worry about are small problems. You may have problems but our problems are not near as bad as the worlds problems. Make changes in your life. Sometimes change is good. You will be a much happier person I know I am.

50/50 @ Fifty! “A reflection on living half my lifetime HIV positive”

Part two: Resilience and recovery
To read Part One, please click here: http://aidscalgary.blogspot.ca/2012/01/5050-fifty-reflection-on-living-half-my.html

The seasons were changing from summer into autumn (my favourite season) and I was accepting the things that were continuing to affect my overall health. I did my best to remain positive however deteriorating health and energy made it increasingly difficult.

I was alone at home on the couch when an old friend came by to see how I was doing. I was angry at him for stopping by without calling first because I did not want people to see how sick I was and was fearful of gossip and having other unwanted visitors. My friend’s response to my anger was so profound they remain with me to this day. He said “You are not a quitter, you are not dead, now stop this ‘pity me’ show and get your freaking act together and fight back.” He was out the door and driving away before I got off the couch to challenge his remarks. How dare he say that to me, but he was bang on. I was not a quitter and I had to stop feeling sorry for myself, but how?

A week later I heard from the clinic telling me a new medication (Protease Inhibitors) was coming to trial and asked if I would consider taking part. I said yes, I mean what was there to lose now? I went for the blood work but failed to make the criteria for the trial and was disappointed knowing others better matched the criteria for the study. I carried on even though I was disappointed and frustrated to know there was something out there that I could not access. Two weeks later another call came from the clinic telling me there were spots now open for the trial. More blood work, another visit to the clinic and I was soon enlisted in my second clinical trial for a new treatment option. My pill count per day would reach an all-time high of 36 pills a day and include seven different medications. Some for HIV and some to treat and prevent the opportunistic infections I was at risk for or already dealing with. I started taking my new medication and found new hope and optimism for my health.

The new treatment came with some minor side effects, mostly bloating and nausea but these were nothing new; just a bit more intrusive than before. My response to the new treatment was incredibly positive and within two months my health, CD4 count, and weight all saw huge improvements. I was eating three meals a day, my energy and ability to do things for myself returned and my weight had gone from 96 lbs. to a whopping 176 lbs., the most I would ever weigh.

I called my mom, who did not believe me due to past secrets and said she would believe it when she saw it for herself. Even confirmation calls from my dad could not sway her.

The doctors and nurses were thrilled with the results they were seeing and noted that many other people in the study were seeing similar responses. Were Protease inhibitors really the “cure” everyone was daring to speak about? Sadly no, but they have saved many lives and allowed others to survive longer and healthier as a result while opening the door for greater research and development of new HIV medications and diagnostic tools. I would remain on this combination/cocktail for five years before resistance to the medications developed and a change was required.

I flew back to Ontario to be with my mom, brother and his family for the Christmas that was “supposed” to have been my last. I remember walking right past my mom in the airport without her recognizing me until I actually said “hello mom”. Her eyes started to mist and I said “let’s go before we have a scene in the airport”. She laughed and said “who cares!” We spent the month together before returning home and reveled in the honest smiles and hope in the eyes of my family. Things were okay.

I soon became bored without a job to fill my time and with my improved health I started to consider returning to work. Where do I begin and how do I explain my absence from the work force? I began slowly, first as a volunteer in my community centre, then as a volunteer with AIDS Calgary and some of the programs there. This led to employment with AIDS Calgary and soon found myself involved in HIV work that I had never considered doing. Heck, there was a time when you would not even get me through the doors of AIDS Calgary because of the fear of being identified by others. It was through this volunteering and meeting other people with HIV that I learned to let this fear go and just be me.

I became more involved in HIV advocacy, joined the SHARP Foundation Board of Directors and became a part of HIV Peer Support to help others dealing with HIV challenges and concerns. I went to my first AIDS conference and soon found myself infused with a desire and energy to make changes for the better for others living with HIV and AIDS. People were still passing away on a regular basis, unable to respond or tolerate the new medications now available. They did not work for everyone; and some of the side effects were very difficult to tolerate.

I moved into a new place with an old friend and her partner, both artists, and began to thrive in this new energy and living environment. My friendship with my ex-partner began to grow in a new and positive way as I began living again. I considered dating but was afraid of disclosing my status every time someone wanted to be with me. I decided only dating positive people would be best and to never date anyone who was not. In reality, of all those I dated, only two people were positive and my current partner is negative. I learned that many gay men were not afraid to be with someone positive. I began dating and enjoying a sexual life without so much fear.

I soon found employment that would supplement my AISH income and allow me to live a little more comfortably at the same time. I also volunteered when I could as it made me feel better about myself and that in turn lead to a healthier sense of being. I was happy, single and grew stronger learning more about myself, the person I wanted to be and what I wanted to do with my life and time. This is where my advocacy on behalf of other people living with HIV and AIDS work began and continues to this day. I was happy, life was good, no more secrets from friends and family and my health continued to improve bit by bit.

After a few years of single life dating and figuring out who I was, what I wanted and needed, I met the man who would change my life again. He came into the bar I was working and we had a nice conversation. He was tall, handsome, charming and had the greatest smile (still does). Unfortunately he also had a boyfriend and off they went after a couple beers. Isn’t that the way; the good ones are always taken I thought to myself. A few months later and now single he came back to the bar and the rest as they say, is history.
We dated for about a year, agreeing that if we were serious we should take our time and make sure we were “real”. Surprisingly I found myself again in the situation of keeping my HIV status a secret as my partner was not comfortable sharing this information with his family. I knew it had the potential to blow up in our faces at some point in time as the experiences past came flooding forward. I agreed and kept it to ourselves; for some time.

A year after dating we decided to move in together along with a great roommate and starting having the life I thought I would never get the chance to have. I had met the man who would love and support me in the same way I did him and things were really good.

Things have been great being with him and our 10th anniversary was approaching. Like all relationships there have been challenges; the greatest challenge being when his family learned of my HIV status while watching the news. I did an interview about being a long term survivor and we did not think it would make it to a channel they would be watching. Needless to say there was a great deal of concern, fear and anxiety as a result of this disclosure to his parents, two of his brothers and some nephews had seen and recognized me.

I am happy to report after the initial chaos everything settled down once we had a chance to speak to them about what was going on and explain that their son was fine, as was I. Better yet, his parents had a family doctor that explained HIV and AIDS and really assisted in eliminating their fears and giving them the facts. They are a great family and I am grateful every day that they remain a part of our lives and family gatherings. I have been so fortunate to cross paths with such incredibly open and loving people through the years.

I enjoyed a great part time job for about six years that let me build up additional work skills while still leaving time to volunteer in HIV work. I was also coming to the end of a long term project and would have to consider changing my work environment; but not my employer. I liked the job, had great colleagues to work with, a supervisor and Team Lead who were aware of my health challenges and supported my needs with a flexible schedule or questions when needing time off. I wish every employer was as supportive, informed and had policies in place for HIV as a workplace disability in order to create supportive work environments that are stigma and discrimination free.

I was considering my current employment and the fact that I was growing restless with the same kind of work daily that had me start looking at other possible employment or training options. Did I really want to go through interviews, resume writing, answering questions and reviewing employer options again? It is hard to leave a job where they have been so supportive and accommodating but I was looking at leaving my AISH benefits program for full time employment; the time had come and I felt up to the challenge.

Then the job of jobs, or as some say the “dream job” comes along and parks itself on your desk. That is what happened when I received a job posting for a full time Gay and MSM outreach worker position at AIDS Calgary. A support worker had sent it to me asking if I would look at it and comment on the description for the position and to share it with anyone I thought I might be interested. The description for the position involved all the duties I was doing as a volunteer and with the deadline a week away; I pondered and struggled before deciding to apply. Full time work after nearly 15 years of only working part time was both scary and exhilarating. I was hired a week later and began my role with AIDS Calgary in May of 2010 and continue in that position today. No regrets about deciding to leave my disability and return to full time employment in a safe and supportive environment.

Things have changed a lot over the last 25 years. New medications and access to them, services and supports continue to grow and improve, policies and procedures are being developed to educate and inform society with a better understanding of HIV/AIDS and the impacts on our lives.

Sadly there are a number of things that have not changed; stigma and discrimination remain entrenched. Many still believe only gays, sex workers, injection drug users and other negative stereotypes are at risk for HIV. Many front line workers still deny services citing they are not equipped to deal with HIV patients remain in place including the very support and health services that are supposed to help us. The stories from people living with HIV about denied health care from professionals who should know better remain a fact for many looking for health and support services and tend to entrench vulnerability, ongoing stigmatization and isolation of people living with and/or at risk for HIV infection.

I want to end this on a positive note by telling you HIV is not a death sentence and that people who test positive today can look forward to years of living well and fulfilling their dreams. Twenty four years ago I was told I would not see 30 yet here I am leading up to 50 with no sign of slowing down soon. You can have a partner, spouse, lover, children and friends who can share in your life and happiness, it may not be easy, but life never is.

“For those who have battled HIV/AIDS and been taken from us, and to all who carry on their fight.”

Cheers

M.

The Determination Train

This blog was submitted by one of our clients. He is a GIPA volunteer blog writer. It’s his third blog entry and we wanted to thank him for sharing his story! For more information on the GIPA position available please check out http://www.aidscalgary.org/getinvolved/gipa.cfm

What does AIDS Calgary mean to me? Well I used to associate the word AIDS, like so many of you, with the word gay. I now know that it means much more than that. My life really began when I started a romantic rendezvous with AIDS Calgary, if you will. You have no idea how long it took me to look up rendezvous to spell it correctly. My uncle, who is an accomplished author, once told me “every great writer is a terrible speller”. True story!

My life was in complete and utter turmoil. Geeze, my life sounds like a bad B-movie, but I can assure you my life is top quality grade A-type movie style. To start I had taken on the responsibility of my sister's four children, ages 10 and under, plus my own daughter. I had neglected my health to take care of my family first. During the time of watching all those kids my grandmother was in a coma and was determined not to live much longer. During all of this going on a childhood friend had been ill with cancer. I was in love with her since 11th grade and we had both been too shy to express our feelings for one another. The lord took her from me at the early age of 32. After all of the stress of deaths and my own health deteriorating, I finally let my aunt and my mother take the responsibilities of the children. I had then gotten really ill and found out I had a prostate infection, in turn I had been hospitalized due to the infection. I don't even want to express the pain I had gone through. I finally made an attempt to deal with having HIV when I was told my HIV had turned to AIDS and my health was in serious jeopardy. I dealt with the news of my health the way most humans deal with hard news. Let's just say I did not use my brain. I took a more destructive method to my madness. I freaked out and I bailed one fateful night in someone else's car. I think the cop used the words “took the car without permission”. Let's be real people, you and I both know that; that is just a glorified way of saying I stole it - plain and simple. On the third day of my destructive path, I was pulled over and arrested. So now I was in trouble with the law, a place my ass had never been before. At around the same time I was to have my court date I had a gallbladder attack and I had to get my gallbladder removed. I did not make my court date. I guess it was because I was afraid and also because I had to have surgery done. Now my past is catching up with me. I am now being charged with the car thing and failure to appear; I have never been so frightened, but I will deal with it as it comes.

You may ask what all this has to do with anything I had talked to you before about, but I can assure you I have a point. Just when I thought life couldn't have been more horrid, I had now seriously considered taking my own life. But, there were two people and one place that saved my life from destitution.

First, my daughter; I could not have turned my life around if it wasn't for her positive and beautiful attitude towards life. Just seeing her smile makes it all better in my opinion. Second, one particular counselor, and the third was AIDS Calgary itself. The minute I started seeing AIDS Calgary my life had changed for the better.

Let me explain something to the lot of you, oh sorry got a little carried away there I am watching Harry Potter and I got caught up in the moment. I've had HIV for 12 years but I have only recently had come to terms with my health. But then when I thought my life was in destitute there was this one particular counselor that stepped in and said “let me help you”. The counselor and I had come up with a form of motivation that seems to work for myself - "The determination train". I am on board pulling that magnificent whistle right up front screaming "I'm the king of the world." Ok, a little dramatic. Don't get me wrong, that beautiful train... let's call it the Polar Express, has been derailed a few times. But with the overpowering positive attitude, and the witty sense of humour of that one counselor, I would have never seen the light so to speak, or the way. I climbed back on that train and pulled that whistle until it had almost come out of its socket.

All the wonderfully well organized activities I have had the privilege to have been involved with, such activities as every second Friday lunches (where I have met some of the most fascinating and extraordinary people), and the small but highly enjoyable writing group. For all the years I have grown up in Calgary I finally got to see The Glenbow Museum. Seeing the Philharmonic for the first time was the perfect ending to my tragic year. To top it all off, this one particular counselor had helped me get my taxes done. Who knew!? I had mentioned that there was going to be a new penguin exhibit at the Calgary Zoo and penguins are my favorite of animals, fascinating creatures they are. Anyhow, I was handed four passes to go see the penguins at the Calgary Zoo. Hmm, maybe I will stay and live with the penguins, they live such simple lives. Nah, I am only joking with you. My mind sometimes gets off track - there's a lot rattling around in my brain sometimes. There is one more thing, blogging. I would never have done it if it were not for AIDS Calgary. If it were not for AIDS Calgary I would not have started pursuing my dream of becoming a writer. I cannot believe I am going to tell all of you this, but my dream that I am going to pursue is to become a romantic comedy novelist. There. I said it. Are you all happy now!? I am a sucker for those romantic comedies. When you read or watch a romantic comedy you always feel better about things, like you are at peace with the world.

Now that I have bored you with the gory details of my A-style movie life, I would like say one more thing. One more thing I have to get off my chest. One last thing to explain how I feel about AIDS Calgary saving my life - Thank you!

Lets Talk About Online Disclosure

ACAA had the opportunity to share a fantastic video from one of our volunteers. The video details his own personal story of being a young gay man living with HIV and the stigma he faces regarding online disclosure. We are very proud of this individual for sharing his story. We hope you enjoy it!



The views and opinions expressed in this video are soley those of the original authors and other contributors. These views and opinions do not necessarily represent those of AIDS Calgary Awareness Association, the staff, and/or any/all contributors to this site.

50/50 @ Fifty! “A reflection on living half my lifetime HIV positive”

“A reflection on living half my lifetime HIV positive”
Part One: diagnosis to despair

Where to begin? I guess the beginning is always a good place to start. January 1st 1988 was starting out to be a good year; a fun party at the club with friends along with tequila shots and other recreational items of the time had me feeling good and dancing my ass off on the dance floor. I recognised the handsome young man cruising me from the sidelines while swaying on the speaker to the beat of the DJ sounds vibrating the floor. Eyes meet, cruising continues, drinks and conversation, along with arousal, eventually lead to my place and a great romp in the sack. A fun, quick, and hot one night stand was a great way to ring in the New Year.

I awoke the next morning; condoms unused by the nightstand and had a momentary panic attack about possible HIV transmission. I dismissed this as overreacting at the time because like many, I felt I could recognise people who were HIV positive. Besides, wouldn’t someone who was positive tell you and take the steps to protect others? Oh so naïve - I was 25 and just coming out into the gay community. But hey, everyone who had HIV or AIDS looked sick right? I mean the newspapers, news broadcasters, clubs and hospitals all had visibly ill people we knew or suspected of being positive. “They had the look”.

Mid February saw Calgary hosting the Winter Olympic Games and the city was a flurry of activities, volunteer events, athlete competitions, parties, and seemingly endless fun and excitement throughout. There was also a warm and extended Chinook that melted half the downhill race tracks and a nasty influenza leaving many incredibly ill. This was the main reason I paid no mind when I felt like I had contracted this flu. In fact, sero-conversion was happening to my immune system.

One October day I awoke to find one eyelid not able to open fully and my vision blurred as a result. I thought it was an allergy or something and let it go a day or two before eventually heading to see my doctor. He was concerned that an aneurism, blood clot or possible tumour may be the cause and quickly had me into the Foothills hospital for a series of tests before concluding nothing after 5 days. He then suggested an infectious disease specialist to me as no other explanation for my still unopened eyelid could be determined.

I then met Dr. Gill, an infectious disease specialist who asked me four very simple questions. Have you ever had a blood transfusion, have you ever shared needles with someone, have you had unprotected sex, and have you ever had sex with a man? I answered yes to two of the questions so he then asked if he could run an HIV antibody blood screen. You must specifically ask for and give permission for an HIV test to be conducted; even to this day it is not part of regular STI testing and must be specifically asked for by you.

The first week in November I got a call from the doctor’s office telling me my results were in and if I would be able to come in the next day. I asked if I could just get them over the phone and was told that they do not provide results over the phone. I agreed to come in the next day for the results. The drive to the office had me distracted, my mind racing with what if it is positive? Could one time not using a condom have been a grave mistake? Who do I tell and turn to? Stop that craziness; “what are the odds” was my final thought before stepping into the office.

Gill came in, file in hand and sat across the table from me with a bit of a smile on his face. Whew that must mean good news I thought. He looked at me and said “your test has come back positive”. Great I thought “positive means good right?” It did not; and he said it meant I had tested positive for the HIV antibodies and was HIV positive. He kept talking but I heard nothing until he asked “do you have any questions”? I asked how long, he replied “Three years likely, and five years if you are very lucky”.

There were no medications, no options for treatment. You just came in for regular blood work and monitoring until HIV ran its course to the inevitable conclusion of early death. I do not recall the drive home to this day. Shell-shocked and stunned, I informed my roommates when they asked as I came in the door. I then locked myself away for a couple days to ponder my diagnosis and began to face the losses I would experience on my journey living HIV positive. It was the start of years keeping my diagnosis a “secret” from family, friends, and colleagues within an isolated lonely existence; waiting.

Within a year of my diagnosis a medication to treat HIV became available and was considered an effective treatment for HIV infection. It was offered at my next appointment and I agreed to give this new medication a try; I mean, what did I have to lose?

The medication, AZT, was the first of many to follow in a class of medication that would change the way people lived with and were treated for HIV infection. The side effects proved overwhelming for me and I discontinued treatment. Nausea, trots, dizziness, appetite loss, fatigue, mood swings, and other side effects left me incredibly sick whereas before the medications I felt fine. I did not go back to the clinic until a health issue forced me back two years later.

At the time I had a great job, life was good, and I grew accustomed to living without a partner because I was HIV positive and knew I would never date anyone who was positive. I chose to focus on what was in my control; my job and health. I gave up dreams of owning a business, buying a home and any chance of a life with someone to love and love me. This was the reality of being positive in the 80’s, loneliness, isolation, depression, and anxiety by keeping a “secret” and hoping to never get sick.

Then I met him; the one who changed my world and had me thinking I could have a relationship with someone. How did this happen? I swore to never let this happen because I would have to tell my “secret”. I decided he was worth it and we started to date. I also started to plan the moment to tell him my secret before we became more intimate. Sadly, someone else beat me to it.

A trusted friend felt he should share my HIV status with the best friend of the man I was seeing. This friend, informed the man I was seeing what he had heard before I got the courage to do it myself. I was confronted before I could disclose, it was unpleasant and as he left I felt now everyone will know and he will never come back. My world had imploded, there was nowhere to go. I was proven wrong after he spoke to mutual friends and did some research - he chose to give our relationship a try and we enjoyed a number of years together before our intimate relationship ended and our great friendship began.

1993 was a life changing year as a bout of shingles had me back to the clinic where I began. My first clinical trial proved incredibly effective at stemming the infection quickly with no side effects. It also resulted in a change from being considered HIV positive to now having an AIDS diagnosis. I lost weight, grew anxious and started to develop health issues that forced me onto multiple medications for HIV and opportunistic infections known to develop as people progressed through years of being positive. I became depressed and non-communicative with my partner falling into cocaine use to escape the fear, anxiety, and the health issues developing.

My “secret” was out and visible to those who knew me and I soon stopped going to places where people would recognise me and “the look”. Drug use, denial, and secrets led me in a downward spiral as medications failed and few new options existed. I would have to tell family members and others that I was sick and that HIV progression was destroying my body, immune system functions, and mental health. I had seen this road before remembering friends lost to AIDS and began plans for my funeral, made a living will, and non-resuscitation order should the end come sooner than later.

I recognised that I had to tell my family what was going on before I became too sick to control my actions and interactions with those close to me. I had to begin rebuilding a relationship with my father, now long broken and left to hang in the wind with no communication for years. I would have to tell my mother, brother, and his family the news and I had no idea where or how to begin.

My father was the first person I tried to tell as he was the closest relative to me and I had to identify someone to make the important decisions that may eventually have to be made. I made several attempts that summer only to bail every time. It was Thanksgiving weekend with dad and the family where the “secret” began to unfold while talking about my dentist, a specialist in HIV dental care. I had failed to remember my step mother worked for a dentist and soon she and a colleague noted the name sounded familiar. I panicked thinking “this is it, they will figure it out and I can’t let it happen with strangers in the room”. I managed to change the subject with my “secret” intact.

Days later I got a call from my step mother; she had connected the dots. My attempts at reconnecting to family, trips without a reason, severe weight loss, medications with huge names, and my visible anxiety had raised the alarm and she finally asked the question. “Do you have cancer?” I answered no and she replied, “Then you have AIDS?” I could only reply with a muted yes.

She said she had to go and speak to my father and would call back soon. I hung up and for the first time in years stood upright as the burden of my “secret” was finally out. I also felt it was the end of any chance to reconcile with my dad once he knew my condition. Once again I was proven wrong, the second of many times to come, and in a week they bought me a plane ticket to fly home and tell my mom and other family members.

I flew home to spend the weekend with my brother, his wife, and 6 month old daughter (My niece, who I thought I would never get to see). My brother had confronted me immediately once at his house about what was wrong with me - citing I looked like hell. I told him I would inform everyone on Saturday at dinner what was going on. My mom, her husband, and my grandma came over on Saturday for dinner. Before dinner was even ready mom cornered me alone and asked “Do you have cancer”? “No, I have AIDS”, I replied. We sat and cried on the kitchen floor a bit and soon everyone knew the details. Dinner was a bust I think as I cannot remember the rest of the evening.

It was on the plane home when I began thinking what do I do now that everyone knows?

My brother, his wife, and niece visited in early spring and I got to care for my niece while they went to Banff for the day. I was thrilled and exhausted by the end of the day. It was great knowing my brother and wife understood HIV transmission and that they were not afraid to let me care for my niece.

My mother followed with a visit in August when I was at my worst; very ill, depressed, and facing my mortality all while deciding what I was going to do next. My mom along with my dad and his wife met with my doctors who informed them it was likely my last Christmas and to make plans if they wanted to do something special. It was the end of summer 1994 and I had already survived past the five year prediction given to me years earlier. My mom flew back at the end of August with me barely able to get off the couch, not eating, and weighing 98 lbs. The plans for my final Christmas with family began as I started making my final estate plans.

I could not walk a block, rake the lawn, walk my dog, or be left alone to do simple chores as black outs were happening and twice I woke up alone on the kitchen floor. Tensions were high; friends, family, and my partner were all in a heightened state of anxiety and unspoken fear of what was happening to us all. The emotion on their faces clearly visible through forced smiles as no one spoke a word about what was impacting us all. My intimate relationship with my partner had ended from the stress and challenges over the years and I stopped fighting for survival and began to accept the inevitable rapidly approaching.


I was at my mental and physical end. I had lost my ability to work and was forced to rely on an income of $800.00 a month from AISH while growing more accustomed to living with depression, daily illness, further weight loss, and the reality that my days were numbered and it was only a matter of time before the end was here. My journey’s end was on the horizon and there were things I had to do before I was gone.
__________________________________________________________________________________________

Part two: Resilience and recovery (Coming soon..)

Life's Great Challenge

This blog was submitted by one of our clients. He is a GIPA volunteer blog writer. It’s his second blog entry and we wanted to thank him for sharing his story! For more information on the GIPA position available please check out http://www.aidscalgary.org/getinvolved/gipa.cfm

So I just found out that I was HIV positive and a new life would begin and not all of it wonderful to say the least, at times often difficult. I would often question God and ask myself why I was dealt such a crappy hand of cards. Was I being tested at how strong I was going to handle life? Darn right I thought I was being tested. If I would have known now the consequences of my insubordinate actions and the affect it had on my life I would have taken precautions if you know what I mean.

THE PHONE CALL
Let’s begin at my place of work. I was a birthday party planner at a leisure center and I had a lot on my mind - not that you could blame me at all. Not concentrating on my job one bit. You see, that was out of the norm for me as I always would give 110% of my work. I was walking to the elevator one afternoon at the leisure center thinking about the news that I had just received days before when suddenly from out of nowhere another employer came around the corner pushing a flat blue trolley with three big ice cream pales full of grease. Yes that's right, grease, and we collided. Well grease went everywhere and it took hours to clean. That made for a long day, and the day kept on that path of destruction. Near the end of the day just when I thought “oh thank goodness I made it through another rotten day”, there's a phone call for me. My grandmother is on the line. "Bobby". She says. "I just found out the news of your health, I am so sorry that happened to you". Now what I am going to say might or might not shock you but this set the path for the rest of my entire life. "I never thought I would have a grandchild that would die before me". She said this as sincerely as possible and I knew she meant well but I still took it to heart. I was speechless. I should mention my grandmother passed away two years ago, God rest her soul. So a bad day ended with a bad phone call but I let it slide. One bad day. Big deal.

THE DOCTORS APPOINTMENT
One comment from a family member; I was not going to let that affect my life, I had a plan. My first doctor’s appointment was a complete and utter bust. I was excited to start medication and carry on with my life. The doctor came in and she had asked me some formality questions. I answered the questions as quickly and honestly as I could. I was rambling on like I usually do when I am nervous and I mentioned something about school. Now folks I want to just say this like before; what I am about to say and let’s just say I should of taken my own advice. Don't let one stupid, stupid comment ruin or take control of your life like I let happen. Anyways, the doctor basically told me not to set my goals too high as I don't know how much time I would have to complete those goals. Well again I was floored by this comment, I didn't know what to say but “oh, okay”. Ever since those few comments I told myself I would never show any kind of weakness with my life. For years after I would do things for friends and family members, selfless things, things that wore me down, things that would make me tired. For years I neglected my medication because I was too busy helping everyone else around me. And all because of a few comments.

MY YEAR IN RUINS
I have been suffering from depression for about a year now. Let's just say I have done some completely ridiculous things over the year. Maybe it's because I am lonely or maybe it's because I am just after 12 years coming to terms with this disease. I let a few ignorant people get away with some horrible comments and it finally took hold of my life. It took control of the wheel. I am here to say I am taking back that wheel with a firm grip and never letting go again. I refuse to let anyone derail my plan again. Depression is a funny disease. It makes us do absolutely unimaginable things that we would never ever consider doing before the depression started. "Let me just tell you that I recently became a connoisseur of last looks, you know the kind of look that you know that will be the last time you see the person, I have been collecting those looks". (A quote from my favourite movie Elizabethtown). I too have been collecting these last looks over the year. To understand that quote I have to explain my year in ruins. My disaster. My tornado. And the way I see it we get one bad year out of our life to screw up, just one though. As somebody once said... “There is a difference between a failure... and a fiasco. A failure is simply the non-presence of success. Any fool can accomplish failure. But a fiasco... a fiasco is a disaster of mythic proportions; a fiasco is a folktale told to others to make others...that makes others feel more alive... because it didn't happen to them.” (Quoted again form Elizabethtown). Let’s start with my sisters kids. They were taken away from my sister because of drugs and neglect I believe, well whatever the reason they were taken away undeniably and unmistakably. They were taken away and put in the so called wonderful foster system. I had not even considered watching my sister’s kids. There were 4 children to watch and I had my daughter as well. 5 kids, are you crazy? I guess I was. When I found out that the two youngest children were being abused in one of the many foster homes that they were in I changed my mind immediately and took steps to watch all four children. The next thing I knew I was watching five kids over the year and neglected my meds again because I put my family's needs first. It wasn't until my grandmother passed away that things started taking a toll on my life. My best friend and high school love interest had gotten sick with cancer and she passed away as well at the young age of 32. I turned to drugs and alcohol. The social work and I came to the decision that I was stressed and needed to take some time for myself so my aunt and mom graciously took the kids for me. Next my depression of having HIV took me to a place I have never been before. My daughter and I moved in with her old day home worker and things were going well. However one night I invited a friend over and we decided to drug it up one night. Later that night we were done doing drugs and my friend wanted me to go get more drugs and the only transportation at the time was my roommate’s car. As I left the room I gave the girl I was with I think the last look I was talking about earlier. I disappeared for three days and did drugs and kept the car that was now reported stolen. My daughter in the meantime went to stay with her mom for a little while so I could take care of myself. Well the car was found with me in it and I was arrested for the first time ever in my life. Me arrested? Wow, a high school graduate, top of my class and all. After all that happened I quit drugs but I was still in and out of the hospital for depression and suicide. I was depressed for letting myself get HIV. I wasn't mad at the person who gave it to me, I was mad at myself for letting it happen. Throughout all of this I had collected a lot of last looks because I lost and hurt a lot of family and friends. My year really turned out to be a fiasco. I learned and lived through all of it!

IN CLOSING
I have one other thing on my mind. I had recently had another comment and this time it was way too close to home. I had told someone that I had written a blog for AIDS Calgary and that person asked me if I had put my name on it because of the family name. I said “Don't worry, I will not ruin your reputation”. I was hoping to hear “good for you” or “nice job” or anything to that affect. This kind of thing still goes on even in 2011. Maybe I and so many others can make a difference by standing out and blogging.

Yours truly Casanova (kidding)
AKA Bob

MY MISADVENTURE

This blog was submitted by one of our clients. He is a GIPA volunteer blog writer. It’s his first blog and we wanted to thank him for sharing his story! For more information on the GIPA position available please check out http://www.aidscalgary.org/getinvolved/gipa.cfm

THE BREAK UP
HIV what can I say about that topic. Well the only way to talk about it is to share my experience with all of you. And the only way to describe my misadventure is to start from the beginning.

Once upon a time... No I am totally kidding, this was definitely no fairy tale story, however I totally wish it had been. You know, one of those stories where the prince saves the day, gets the girl, and lives happily ever after?

13 years ago I thought I was in love with a beautiful girl and she was in love with me. We had it all - wonderful jobs, going to college lots of amazing friends and quite a beautiful life at that time. I know what you are thinking; sounds like a fairy tale, well I thought that as well. To top it all off we found out on New Year’s Eve of all days that she is pregnant and we couldn't have been happier. It was a straight man’s fairy tale.

9 Months had passed without a hitch and everything was going swimmingly well for us. It was just perfect - until a few complications with the birth. It was nothing life threatening but nonetheless still extremely stressful. This caused us to have a horrible detrimental break up. Don't get me wrong we are best friends now and have a truly amazing healthy daughter, but I am jumping ahead a bit. It wasn't always that way.

GETTING HIV
I was completely devastated by our break up. I like to call it "THE BREAK UP OF 98". It was like it was a natural disaster or something. Pathetic I know but that is how I saw it.

I had decided one fateful night that I needed to go out by myself and have some me time. Well I spent the night bar hopping and getting completely hammered. My misadventure took me to a gay bar where I was hit on a few times, well more like a lot of times as I am not completely flawed with looks and personality. Then I got the OFFER to go home with someone from the gay bar and by this time I was so drunk that I was in no position to argue. I would have gone home with an alien at this point in the night. No I am kidding. I thought to myself that night what the heck don't knock it until you try it. That used to be the phrase I lived by. I say that because before having our daughter I had gone skydiving and bungee jumping and caving as well. I am getting off track here, back to my one fateful night. I had now tried it and I liked it, jeepers I sound like a Katy Perry song lol.

In case anyone is not really following the story right now I am talking about the S word o.k. I'll just say it anyways "SEX" and not just any sex, sex with a man. And you have to understand why I am talking like that because when I was younger I grew up in a house where you must watch baseball and football. Whenever we had family dinners it was the women cooking and the men would eat go in the rumpus room as my grandmother would call it and lie on the floor and stick their hands in their jeans and watch baseball or football. So that is why I had never tried anything with the same sex and I had a girlfriend and child, a dog and a white picket fence. So old-school I know!

FINDING OUT
Now back to "THE BREAK OF 98". Before we became friends my ex and I had a battle for custody in the courts. I am not going to go into detail about the ordeal that I had gone through however I am going to say this. She tried to keep my daughter from me at first and I was not going to stand for it so I sought a lawyer and took her to court. You may ask what does this have to with my finding out I am HIV positive? Well it has a lot to do with it. In fact it is a key part of the story, I want to say heart of the story but I don't want to use the word heart as to me that is a positive word used in that text.

The stress of the trial (I'm kidding again I was trying to make the story more exiting like a John Grisham novel) had made me extremely ill and I could barely make it to the court room but with the help of my mom supporting me in court I made it through. Everybody had thought I should go to the hospital but I being the stubborn person I am made it very clear that I will go to the hospital as soon as I had joint custody of my daughter. The outcome of that was that I did win joint custody of my daughter.

I went to the hospital right after and found out I had pneumonia. They treated me for my health problems and took some blood samples from me. Later in the week I had gotten a phone call from the hospital asking if I could come in immediately and discuss a few things. I had a gut feeling what the problem was and I ignored the docs for months. They kept bugging me to come in so finally...

My mom, a friend of the family’s and I went in to see what the problem was. I remember waiting there and thinking it couldn't be what I thought it was. That could never happen to me. Well it did happen to me and it could happen to anyone of you if you are not careful or maybe it already did happen to you and I am right here with you struggling with this long term health problem.

After we had left the hospital with the detrimental news I remember standing beside my mom’s red Dodge Ram truck and I just started to cry and cry. My mom came running up to me and hugged me so tightly and I said to her being the non-selfish person that I am "I am so sorry". She said to me "You have nothing to be sorry for and don't ever apologise for anything, we will get through this".

I was living with my sister at the time, my mom had dropped me off at home and I came in to the dimly lit basement suit to find my sister sleeping on the couch. I sat down beside her and started to cry again this time I didn't have to say anything she just knew and she got up and just hugged me and cried with me.

I have many, many more experiences with dealing with this heart wrenching disease, but I will save that for another time. I have learned one very important lesson here. Never go out and use drinking as a way to cope with your problems at hand, it could lead you to even greater heart ache than what you had started with. One other thing that helps me deal with my stress is humour and laughter; if you don't have that then you don't have anything. I have 12 years more to talk about but that will be in a second part blog that I am still working on and thank you all for taking the time to listen to my story.

Testing – A First Hand Account: Part 1

Recently one of our volunteers has agreed to go through the anonymous testing process at the Sheldon M Chumir Health Centre. Here is part one in this first hand account of their testing experience.

Testing; what comes to mind when I begin to think about this simple word?
Fear? Shame? Worry? Embarrassment? For me, mostly I feel obligation. Logically I know that I should have been tested and screened for STIs and HIV a long time ago. So what exactly has prevented me from being tested up until this point?

To be honest with you, it was a combination of assuming that I was being tested at my annual pap test, along with the assumption that I was STI free. To clarify, my inner dialogue went something like this, “Well, you’ve only been with two people; your first partner was a virgin when you met him, and your second partner was tested and came back negative.” Now, I know that we all like to believe that we are not susceptible to believing our own internal denial, but I think that this example of inner monologue portrays the frightening sense of ignorance still present in all of us, even if we can’t admit it.

As I described earlier, assuming your test results before your test can be a very dangerous game to play. Yes, my first partner and I were virgins when we met one another; however, he could have easily transmitted genital herpes through oral sex if he had cold sores; and yes, my second partner told me that he was “clean”, but what does that even mean?? Was he tested for HIV? How can I be sure? Did my partner know that you must specifically request an HIV test when being tested for STIs? There is also the possibility of being infected with Syphilis, as it can be transmitted simply through skin to skin contact…There are so many variables to think about!

So let me tell you, I may assume that I am in the clear, but given all of the contributing factors, I have to admit that I simply will not know what my status is with out a test. It’s not knowing that I find incredibly frightening, and very dis empowering. The one thing that I have learned through out my time as a volunteer at AIDS Calgary is that I may have assumed I was in control of my sexual health, but without being tested I was not being honest with myself.

With all of this spinning through my head over the last few months, I have reluctantly agreed to be AIDS Calgary’s latest guinea pig, but more importantly I’m looking forward to empowering myself with knowledge of my sexual health status. In saying that, I have agreed to request a full anonymous test at the STI Clinc. I am in the process of preparing myself to completely irritate the STI Clinic employees as they have not conducted a full blown anonymous test in approximately ten years. Yes, you have heard me correctly, ten years. Why hasn’t anyone requested an anonymous test in so long? What exactly does “anonymous testing” mean anyway? Why did AIDS Calgary specifically want me to get an anonymous test versus a confidential walk in exam like everyone else? What’s the difference? But mostly, why did I ever agree to do this??

Please stay tuned until April, when I will recount my testing experience and hopefully have the answers to these questions and more!

“Jack and Jack” and the importance of talking to your children

One evening while making dinner, I looked up to see my six-year-old daughter watching TV with a very confused expression.

"What's wrong, hun?" I asked. "That man on the TV just said he was going to marry that other man," she replied.

The program was an interview with two American men discussing their plans to wed out of state – gay marriage was not allowed in their home state. "How can they get married, Mom? Aren't they two boys?"

To be frank, the thought of having this conversation with my daughter terrified me. As open-minded and liberal as I am; in that moment I had no idea what to tell her. How do I explain homosexuality to her? Is she too young to understand? Should I just skirt the issue until she's older? Despite my uncertainty, I just told the truth.

"Well you see, honey, sometimes boys fall in love with other boys and they choose to get married; just as boys and girls do. Sometimes two girls will fall in love and get married, too. A marriage doesn't always have to be a boy and a girl; a marriage is all about loving the person you are with, boy or girl."

I stared at my daughter, frozen, bracing myself for her reaction. With her beautiful eyes wide, my little girl looked up at me and said, "Oh! Okay Mommy. Is it alright if I go play until dinner is finished?" And just like that, she set off in search of her brother.

I stood there stunned. Is that it? No questions? Just like that, she gets it? That seems way too easy.

Unbeknownst to her, my daughter had taught me more about parenting in those five minutes than any cheesy parenting book ever did. She had shown me that our children can learn anything you want them to learn. Parents have the colossal responsibility of raising the next generation, and the opportunity to raise a generation of thoughtful, open-minded, and tolerant people.

I had the fear that countless other parents experience when it comes to talking to our children about sex and sexuality. How young is too young? When is it okay to start discussing these issues?

The truth is that your children are never too young for open and honest communication. An honest answer to a question will always be appropriate. We can take the opportunities that present themselves. We can show our kids that the world is a diverse place, a place where Jack can marry Jack and Jill can marry Jane. We can set the stage for a world where people are both allowed and entitled to be whoever it is that they want to be.

In the wake of countless tragic suicides of young gay teens – victims of peer bullying – now is certainly the time to pull together and talk to our children. Let’s take the opportunity to teach acceptance to our children, rather than teaching them that homosexuality is bad or avoiding the topic of sex and sexuality altogether.

This guest post was submitted by Ana M. Saskowski. Ana is a full-time mom and part-time student living in Sylvan Lake. Her AIDS Calgary Core Training attendance had a profound impact on her life and prompted her submissions to The A Word.

Opt-out HIV testing

Should HIV testing be mandatory for certain populations? If so, how do we determine those populations? Should we base it on risk or just focus on those groups that are known to currently have higher HIV prevalence rates? Are there other factors we should be considering?

These were all questions swirling around in my mind as I went for a recent HIV test. I am a Caucasian, heterosexual, Canadian citizen in a long-term monogamous relationship. I am not a member of a population that is experiencing high HIV prevalence. I have not engaged in injection drug use. All of my unprotected sex was happening with one, monogamous long-term partner. I am about as low risk as it gets outside of a monastery.

So why did I find myself waiting in an uncomfortable plastic chair? I was pregnant.

Now, technically, HIV testing wasn’t mandatory for me. In most Canadian provinces, including Alberta, HIV testing for pregnant women happens on an opt-out basis. Good pre-natal care means that I’m going to sit in those uncomfortable plastic chairs a few times over this 9-month period but when my doctor wrote up my requisition form for these tests I could have declined the HIV test. The only problem was that he didn’t tell me about it.

Lest you think that this is an isolated case, a pilot study of ten Canadian women revealed that only four were offered the option of testing. Of the remaining six women, one already knew she was HIV positive, two were under the (uncorrected) impression that testing was mandatory and three had never been informed that HIV testing would be taking place.

Wondering what the reason for testing pregnant women in the first place is? The great reason for testing all pregnant women for HIV is that if a mother is HIV positive, HAART can dramatically reduce the risk of mother-to-child transmission. It is entirely possible for HIV positive women to deliver healthy, HIV negative babies.

Great reason, right? Wondering now what the issues with opt-out testing are? The primary issue is that finding out the results of an HIV test carries implications that go far beyond other test results. Learning that you are HIV positive isn’t the same as hearing that you’re anemic or even have gestational diabetes.

An HIV test should always be preceded by informed consent and pre-test counseling. Think for a minute what it would be like to receive an HIV diagnosis without even knowing that you had undergone a test.

Fortunately for my doctor I work at AIDS Calgary and know the ins and outs of HIV. I knew that I could opt-out of the test. I didn’t need pre-test counseling. But I am much more likely to be the exception than the rule.

What are your thoughts on opt-out testing? Do you think its effective/necessary in some situations?

For more reading on the issues surrounding HIV opt-out testing for pregnant women, check out the Canadian HIV/AIDS Legal Network’s publication on HIV Testing (Chapter 8). http://www.aidslaw.ca/publications/interfaces/downloadFile.php?ref=1076

Sources
A Different Kind of Risk? – Pregnant Women’s Experience of HIV Testing in Pregnancy. Canadian HIV/AIDS Policy & Law Newsletter. Volume 5, Number 1. Fall/Winter 1999. Retrieved October 2010. http://www.aidslaw.ca/publications/interfaces/downloadFile.php?ref=829

Someone I love is HIV positive

The idea that HIV might become an issue or affect someone in my family never occurred to me. The person I love does not feel comfortable telling people their status. I feel very uncomfortable being the keeper of such a huge secret, but it is not my secret to tell. We both carry a burden.

I understand now that some people living with HIV don’t feel comfortable disclosing their status to friends and family. I also understand that they feel pressure to disclose their status from other people living with HIV who did feel comfortable enough to disclose. The question to disclose or not disclose to friends and family is another burden to bear.

I wanted to sit down and write this story today because for most of my adult life I knew very little about HIV. I did not concern myself because I assumed HIV would never be part of my life. What I have learned, and what I want others to learn, is that HIV can affect any one of us. You don’t know if one of your friends of family members may be positive right now, or may test positive in the future.

I see now that we need to embrace, not fear, people living with HIV because you never know when it may be someone you love. I see now just how much stigma and discrimination that people living with HIV face every day. I see now that one of the root causes of this discrimination is a lack of information. I see now that I can have a positive impact.

So what will I do? What can you do? Get involved, educate yourself, spread the word, volunteer at your local ASO. Follow some great advice and ‘be the change you want to see in the world.’ Help the world become a place where persons living with HIV are treated with the same respect, dignity and compassion as anyone else.

I can do that. Will you?

This was a guest post was submitted to The A Word. To submit a post for consideration, please contact us at newsletter@aidscalgary.org.

You're positive, and I love you

It was a warm spring day, which meant I would have much rather have been outside drinking beer on a patio than in a stuffy, dimly lit classroom. With my laptop open to distract myself from the lesson, I chatted with my friend Sean* over IM. I’ve been friends with Sean since I moved to Calgary at the age of 13. Sean told me he had something he needed to tell me, but that I had to promise not to freak out. With his tendency to embellish, I assumed he was just trying to build up to a story about a new boy-crush or something. I assured him I wouldn’t repeat his secret to anyone and that he could tell me anything.

“I’m HIV-positive,” he said.

I stared at the screen. I re-read the message a few times to make sure that what I saw was indeed what he had said. I don’t know what I said in reply, other than a string of frantic messages asking if he was okay and what he was going to do. Once the white noise in my head cleared I realized that I was going to cry, excused myself from class and went home to continue the conversation with him.

At the time, I couldn’t believe how calm he was about his situation. When I told him that I was upset and afraid for him, he just laughed. He told me that he was okay and not to worry, but my mind wouldn’t process this. All I knew was that I was going to lose my friend.

Even though I considered myself fairly well educated on sexual health at the time, I now know that there was much about HIV I didn’t take into consideration. For instance, that it’s no longer necessarily a death sentence.

It’s been two years since Sean’s diagnosis, and I’m happy to report that his life has actually improved a great deal since. He is on medication , visiting his doctor regularly and seeing a counselor for his long-term struggle with depression. He is working at a steady and modest job, and no longer uses chemical drugs or drinks heavily. He gets out with friends more often, and actually went bungee jumping recently – which astounds me, as he was always so shy and timid. Although there are still low points, Sean seems to be the happiest that I’ve ever seen him.

I never once judged Sean based on his status and I can only imagine the amount of courage it took for him to disclose. And while my initial reaction was probably not ideal, it was simply out of concern for his well-being. I still continue to view him as a dear friend and wonderful human being.

After finding out about Sean, I decided to get tested for HIV at my annual pap test that was soon due. I was 20 years old at the time, and had never had one. Although the nurse assured me that based on my history I was low-risk, I still felt it was a good idea – if for nothing else, I wanted to at least do it for the peace of mind.

I am HIV-negative. Sean is HIV-positive. We’re friends, and I still love him just as much as I ever did. My hopes are that if a friend confides in you with an HIV-positive status, that it won’t affect your feelings for them either – they are still your friend and they may need your support.

*Name has been changed

This was a guest post was submitted to The A Word. To submit a post for consideration, please contact us at newsletter@aidscalgary.org.

A cab driver brings it home

by Andrew Sedor

After a night of bar hopping, my friend and I waved a cab to take us home. I started talking to the cab driver, as I usually do, asking if it had been busy that night.

Carl* told us that business was down and even Stampede only provided mediocre business. We continued light conversation and after awhile he asked what we had been doing this summer.

I told him that I was a summer student at AIDS Calgary Awareness Association. After a pause to gather his thoughts, Carl tentatively inquired “how long can a person live if they have HIV?”

I was surprised by his question but answered that there is not easy answer to that question. I let him know that factors such as treatment, nutrition, and life style all contribute to the life span of a person living with HIV.

Carl was now very interested in the conversation. Turning his head he asked “how long can someone live if they don’t have medication?” As a summer student I let him know that I couldn’t give him a definite answer but that the research I myself had read on the topic indicated that life expectancy can drop significantly without medication.

I explained how antiretroviral drugs (the medication) impeded the spread of HIV in white blood cells. My pre-med friend in the cab with me jumped in to clarify how the HIV virus attacks the immune system.

After a thoughtful pause Carl revealed that he had a good friend who was HIV positive but who was in denial and won’t go on the medication. She is very ashamed of her HIV status and she doesn’t want her family to find out. Carl had tried to talk with her many times, attempting to persuade her to take the antiretroviral medication… but she wouldn’t listen.

At this point we had pulled up to our destination. My friend paid and got out of the cab. Carl kept me back with a question…“My friend is starting to lose a lot of weight… what stage of infection is that?” I didn’t know exactly and I let Carl know that I wasn’t sure what stage the infection was in.

We stayed in the cab and talked for another 5 minutes about what he should do. I told him to keep on trying to convince her to get on medication and educate herself about the virus. I shook his hand, left the cab and said goodnight. He stayed parked outside the house just staring out his window for about 2 minutes.

I had decided to walk the rest of the way home. While I was walking, I thought about why AIDS Calgary was so important. Medical clinics and hospitals are there to provide the medication to help your body, but HIV/AIDS doesn’t just attack you physically; it attacks you mentally. AIDS Calgary and other AIDS service organizations are hospitals for the mind and heart, a place to turn when even your family stigmatizes you.

*not his real name

Andrew Sedor was a summer student at AIDS Calgary within the Development Team.

One person can make a difference

A personal perspective from someone who walks for AIDS Calgary Awareness Association. Thank you to Calvin Campbell for sharing his thoughts and experiences.

Why do you walk?
I walk because I know the good that comes from an organization such as AIDS Calgary. HIV/AIDS is such a terrible disease and is debilitating on so many levels. The physical effects aren’t always the worst, often the emotional and mental can be just as incapacitating. The stigma associated with this disease as well as the ignorance that people have of it makes it so much more awful. The programs are so vital to the people that are living with HIV/AIDS and the education that AIDS Calgary helps to provide is essential to stopping the spread of the disease.

How many years have you walked?
This will be my third year participating in the Walk.

How did you become involved with the AIDS Walk?
I first became involved with the AIDS Walk when I was told by a co-worker that AIDS Calgary was looking for volunteers two years ago to help out with Registration of the walkers. After doing that the first year, I wanted to get more involved so I put together a team of co-workers to do the walk. It was a great experience as I got to meet people from other offices around the city and it was all for a great cause.

Why do you think is it important that corporations support walks like the AIDS Walk?
It is so easy for corporations to get involved with any charity. In economic climates like the one we are now, it doesn’t even always have to be financial; it just takes a bit of time and effort. How hard it is for a group of people to get together for a few hours and raise some money for something that is so important.

What is the Employee Resource Group?
RBC Has a few different Employee Resource Groups but the one that I work with is called PRIDE (Proud RBC Individuals for Diversity and Equality. The goal of PRIDE is to promote an inclusive workplace for lesbian, gay, bisexual and transgender employees. Through education and by acting as a resource, PRIDE aims to enhance employee engagement and retention, and provides feedback on diversity policies and programs.

If you were to motivate someone else to walk, what would you say?
We are all part of the human family. There are so many of us that live with an illness or disease and we must have compassion and empathy for our fellow humans as one day, it may be us in need. With such minimal effort on the part of any volunteer, there is such a great payout that helps with everything from care and medicine for the sick to education and awareness for the community.

Last year, Calvin was able to form a group of 25 walkers from RBC who volunteered a few hours to come out and walk. Together they raised over $3,700 and RBC matched with $2,500. This year Calvin’s goal is to raise $10,000. Go Calvin Go!