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I’ve written at length about the many facets of my life with HIV. I’ve shared struggles with smoking cessation, aging, and medications; spoke at length of my family’s story and even the more private love story of my partner and me. I dedicated one of my blogs to my daughter who has been my rock and literally my ride or die in our harrowing journey together since diagnosis and still to this very day. There is however one topic I’ve always stayed clear of and actually had to get permission to write about …
Let me tell you about my son.
Tom was born at 3:45am the morning of July 15th 1989 weighing a healthy 9 lbs. 14 oz. Tom spent the first hour of his life in my arms staring directly at me … he would not for a second, a blink, take his eyes off of me and I gladly carried him around the room staring right back at him. He had a shock of black hair, jaundiced skin and was ever so slightly cross eyed; a face only a mother, or father could love. After an hour or so my arms were numb from carrying him around the maternity ward so I passed him to his mother.
Unlike the rest of the family Tom is pretty quiet and reserved about his life with HIV. That is not to say that Tom has not lent his time and talents to the cause, he just chose to leave the country to do it opting to volunteer at an orphanage for mothers and children living with HIV in Johannesburg South Africa.
That time in South Africa is the only time he ever lived openly with HIV.
Clinically Tom has social anxiety, the more direct and truthful wording is Tom lives with vast almost debilitating internalized stigma. Outwardly he is gainfully employed and is in fact a leader in his workplace. Hard working with an impeccable work ethic I could not be more proud of the young man he has become. His spare time is spent with many hobbies and he is generally a homebody who shy’s away from social interaction of pretty much any kind; a true introvert.
Interesting to note; although Tom has actually never personally experienced an outward negative reaction to his HIV status, he lives with the very real fear that he could. All too often people concern themselves with what others may do or say but historically it is safe to say that stigma, discrimination and HIV have been linked since it all began in June 1981. Fast forward to 1993 in a suburb of London Ontario a coalition of parents tried to keep my children from attending school and although Tom was only 4 at the time, and the anger and fear from the parents was directed at me, it is a story that has been woven into the fabric of our family.
Growing up Tom enjoyed a plethora of friends and the occasional girlfriend. This was as normal a time as we could possibly make for him. There was a time where he truly believed that people had all but forgotten our family’s story but subtle hints of our life’s journey often rose to the top of the heap to once again remind us. Tom’s decision to go to South Africa after high school was for him a time where he was “normal” and others were in fact the minority.
When he returned from South Africa he chose the safety of the neighborhood he grew up in to set down roots. His Westmount bubble as I call it where he has known peace and acceptance.
Three years ago we made the decision to get a house together, in his beloved Westmount neighborhood. It was important for both of us to truly share a house and do away with the thought process from others that at 28 he still lives with his dad. I truly enjoy his company and it allows the dad in me to keep an eye on what I perceive to be his ‘struggle”. For him, I truly believe that he feels a need to keep an eye on me, my health and my ability to go it alone.
Semantics is a funny thing that allows us, at least in this case to do away with the unspoken reasons why the two of us continue to share a roof.
The advancement of HIV treatment and the very real scientific proof that a person living with HIV on sustained treatment cannot transmit the virus does not for my son magically erase the stigma he lives with and quite frankly how could it. A lab result, a scientist, no one individual or medical journal really has that power to eradicate the isolation, the cocoon that has enveloped him; he alone holds that key and he will one day figure out how to co-mingle the science with the heart, the pain, and the reality of that part of his life that for now lives somewhat peacefully in his own form of denial.
I have friends that travel the country talking of the scientific advancement of HIV treatment and its ability to ‘erase” the stigma. I do not take issue with their message and certainly applaud their courage and determination … it’s just not true in a certain grey brick row house in that Westmount suburb; at least not yet, not for Tom.
Post-Traumatic Stress Disorder (PTSD) is alive and kicking in that grey brick home where we share our lives. We pretty much share everything with the exception of televised sports, bathrooms and remote controls. We also share a history of multiple loss traumas that have been for half of my life and pretty much all of his life. When that reality sinks in and then further realizes that for both of us our first loss was my partner and his mom.
Multiple loss syndrome is a real thing and if you google it HIV is at the top of the list. For two guys that don’t necessarily want to talk about shit, sometimes it’s a real lonely thing, and googling it doesn’t tell us what to do about it. Time does not heal all wounds and he does not need to glance past his immediate family to understand the reality of multiple losses.
I think that what I am trying to convey in this tale of two guys and a virus is that although time does not heal all wounds, time, each other, and our families are our wealth.
Today, like that time in a maternity ward 28 years ago Tom has still not taken his eyes off me, not a blink, and my stare back at him is just as strong as it was back when. I have been and continue to be there for him. I am proud of the young man he has become, his accomplishments, drive and his wry sense of humour. When he does take those first few steps out of the stigma and into his future self I will proudly be there with him.
I had the pleasure recently of sharing a long drive with a luscious doctor friend of mine and the topics of conversation on this two hour trek were vast, sometimes lewd and always entertaining. On this particular scenic cruise the topic turned to my story, my families’ story living with HIV. I understand there can be great curiosity about people’s lives with HIV. Although the cardinal rule is to not ever ask a person how they got infected, at the same time it all too often runs through people’s minds; sometimes for reasons of understanding and other times for reasons of shaming, judging, or blaming.
I felt safe in the heated seats of my colleagues Jeep.
I admit I am a ponderer at times on this very subject and also very aware that my own journey with HIV generates that all too often unnecessary albeit human nature driven curiosity. I am always open and willing to share the details of my story, my life … it’s in part why I write a blog. This day I shared with my friend intimate details of the last 25-30 years and I did so with every hope that she would share it with others.
Let’s start with the obvious big gay elephant in the room … my marriage. Let’s face it … its 2017 and there is still and will most likely and sadly always be the raised eyebrow when a gay man or woman marries someone of the opposite sex. Sexual fluidity was not a “thing” in 1987 when I met my wife and still today a confusing subject for some.
Still, I do understand … what was I thinking? I wasn’t thinking; I was in love.
It was the summer of 1987 and I was working full time at a large Insurance company in downtown Toronto. I was in every way a proud gay man living the dream. I had a good job, lotsa friends and I also worked part time bartending at a very popular Sunday tea dance gay bar called Showbiz.
Then it happened!
She worked as an insurance claims processor and her desk was just outside my office. Rumour had it through the company grape vine that she had a crush on me … and I would be lying if I said I wasn’t flattered, intrigued and somewhat confused as to how I was feeling about that. The first time we spent any time together outside of work was at her place when she permed my hair … one would think that such an event alone would have set off alarms and she would have run screaming from the room, foils
and curlers flying.
She didn’t, nor did I.
Our first date was on my 26th birthday and we went with friends to a bar: PM Toronto’s … later to be known as Zippers. The first thing we did that evening was s
hare shots of tequila and some truths about ourselves. I told her then, 10 minutes into our first date that I was gay. No secrets here. Our second date was one week later on her 27th birthday. I can’t recall the name of the nightclub we went to that night but I do recall that we closed the place singing a very drunken version of American Pie with a group of friends and strangers.
I was head over heels in love and learning that love knew no ge
nder; those are words I’m choosing to use now to explain what was happening then. Within a month we were living in a large 3 bedroom upper flat in the beaches and awaiting the arrival of our first born. A year later we were married living in the burbs and expecting again.
Flash forward, December 10 1990, our world collapsed.
That long quiet walk home from the doctor’s office … she didn’t say two words to me the whole way … I was scared for us … she was gonna kick me out so fast my head was gonna spin right off … I just knew it … but she didn’t. I learned about unconditional lo
ve through the eyes of my children, and now I was seeing it in action. She never once blamed me for what our lives were becoming, had become … nor did her family. Eventually one day I learned to stop blaming myself, still I have moments.
When we embarked on our national AIDS Awareness family campaign we did so with the drive of parents working to save their children. We did anything and everything and spoke to anyone and everyone. Something we didn’t do was talk about my sexuality
because to do so would have greatly diminished the message we were trying to share. At no time was my sexuality a secret from those we cared about.
When I lost her just 2 years after that cold quiet walk home I lost a partner in the truest sense of the word. Not a wife, a husband … I lost the one that was gonna pull me through this mess I feared I created. We had each other’s backs and together we faced the uncertainty of our new worlds together. I certainly could not see myself at the helm of our family … I was half of a whole that was now and forever gone.
To this day I feel the loss of her above all else. I vowed to raise our children keeping her parental paranoia in mind. Where I was too lenient she was often too strict and by keeping that in mind and with some help along the way raised our children with her always in mind, ever present.
I don’t know what it is that drives some to feel the need to explain themselves for their actions, their decisions, their lives. I don’t know what makes people look for the dirt, the bad, or the story behind the story. I wrote this blog because I wanted to share a love story that went against every norm known and survived the whispers of those who did not know but thought they did. There was no tragic end but rather a tragic turn; the love story remains.
In the grand scheme of things I answer only to my children and they think I’m pretty cool … at the end of the day that’s what matters most to me.
There are thankfully many aspects of my work that I love and feel a sense of connection and excitement about. I am honoured to be a part of a provincial strategy working together to encourage PHA engagement in AIDS Service Organizations with a salute to the principles of the greater and more meaningful engagement of people living with HIV (GIPA/MEPA). I especially like the very real fact that I didn’t always feel this way. I am one of those people who actually enjoy realizing I was wrong about something. Tis oddly true … it means I’ve learned something.
My confusion stemmed from a stubborn thought of; why is this whole GIPA/MEPA thing being touted as something new? The early days of AIDS saw PHAs in many ways as the first responders to the epidemic unfolding before us in the 80s. My hero in the AIDS movement; Bobbi Campbell was a public health nurse an activist, and one of the first to speak publically about living with AIDS … it was 1983. Did people living with HIV/AIDS leave AIDS Service Organizations?
In a manner of speaking, yes.
The 80s found people living with HIV/AIDS, friends, families, peers up in arms and all over this shit. Historically, some of the most powerful persistent and life changing activism ever seen came from people living with AIDS. In the 90s activism moved into the boardroom in a manner of speaking and took on a life of its own in the realm of professionalizing activism. I think it’s safe to say that the professional activism of the 90s wasn’t nearly as effective as the grass roots movement a decade earlier. Still the metaphoric move into the boardroom was a necessary albeit arid step at that time.
The twenty-first century brought with it a new greatly empowered PHA that was still fighting the good fight but searching for an agency, a venue, an organization that would best support that passion and the faces of agencies and in part the very face of AIDS had greatly changed.
The reinvention of the PHA activist brought with it growing pains. AIDS Service Organizations weren’t quite sure what to do with this eager activist and their dreams born of the early day warrior. A confusing standoff of sorts grew as agencies struggled to support the work of the PHA and in turn the PHA often felt this struggle translated to a lack of acceptance.
In some but not all cases … this was the truth.
The work regardless of agency was important and moving into the third decade of the virus brought with it the ever increasing goal of getting it right. There were some in those days who felt the fight would be best unencumbered by the perceived shrill of activism then there were the ones that knew that the best way to get it right so to speak was to work together.
The greater and more meaningful involvement of people living with AIDS (GIPA/MEPA) needed to be put into words, into play and into the plans for moving forward. The reason for speaking up for the inclusion was a sad reflection of the era where voices were all but ignored.
Walking the walk and talking the talk is shall we say … slowly but surely catching on. I am fortunate to work in an agency that proudly displays the words of the Ontario Accord. Every year we hold a ceremony to recommit to the principles of GIPA/MEPA.
The provincial group that I work with today have taken the time to work with many provincial AIDS Service Organizations to implement the work of peers into policy and program plan outlining for future generations how this work will best be accomplished. To borrow a phrase …
Nothing about us without us.
AIDS Awareness Week 2016 – a salute to all the warriors in my life …
I have the great privilege in my work of meeting folks from all walks of life who are living with HIV/AIDS and involved in varying degrees in the work. Many times I meet people in my office, conferences, meetings and sometimes fancy galas. The passion for the cause is palpable but sadly the attendances at these gatherings are for lack of a better word often considered tokenism.
Tokenism in my view can be a two way street.
Recently at one of these get-togethers a meeting space had been set aside for a meeting of PHAs (people living with HIV/AIDS) to take place prior to a larger meeting of Executive Directors and Board Chairs of AIDS Service Organizations along with PHAs. An individual commented that this first meeting felt rather tokenistic and without actual true meaning or voice in the grand scheme of things.
I couldn’t agree less.
This space, this time is what you make it. Should you choose to sit there, say very little, then remark later that you felt tokenized, you were … by yourself.
Should some conference organizer make space … make noise!
The intent in the making of the space may very well be a form of tokenism but that perception could be short lived if you use that space to make a difference. I have been around the block long enough to know that those token boardrooms if you will brought forth great change not only for people living with HIV/AIDS but also to the agencies and government bodies that are in place to do the work .
Lead by example is by far an underused yet greatly needed tool in HIV/AIDS work. When you make the choice to complain then wonder why your voice is not heard rest assured that it is heard but more than likely ignored. Negativity will reap negativity. Response to a whine or complaint will rarely get one the action they so seek in part because the tendency is to quell rather than concur. We actually learned this as young children when our parents would say “if you want something ask me without whining”.
With that, I leave you with The Denver Principles …
There is no better way to cite the history of the PHA self-empowerment movement than to quote the principles articulated in Denver in 1983 they are as relevant and powerful today as they were then.
The Denver Principles (1983) Statement from the People with AIDS advisory committee
We condemn attempts to label us as “victims,” a term which implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”
RECOMMENDATIONS FOR ALL PEOPLE
- Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.
- Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.
RECOMMENDATIONS FOR PEOPLE WITH AIDS
- Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
- Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
- Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
- Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.
RIGHTS OF PEOPLE WITH AIDS
- To as full and satisfying sexual and emotional lives as anyone else.
- To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.
- To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.
- To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.
- To die – and to LIVE – in dignity.
Ten years ago this month I made the decision to return to school … in fact return to work, to life, real life or some semblance thereof. I had joked for some time with regard my life with AIDS … “looks like I’m gonna live I better get a job”. Although it was a running joke in my life it was also fast becoming a reality.
I retired from normal life if you will in January 1991 immediately after the diagnosis of me and my family. The doctors pretty much told me to. “You need to take care of your health, your life, and the lives of your family”. In truth he added, “You won’t have time to work”.
Our work became our health, our lives and the many many doctor and other health related appointments we all of a sudden had staring us in the face. With four people diagnosed with HIV in 1991, two of them children under the age of three it was a medical scramble just to stay on top of things, add to that the reality that there was only one treatment at this time in the early 90s, a treatment that was at its best harsh and greatly debilitating to so many.
AZT bought people living with HIV/AIDS a little time … just a little.
By the end of the 90s there were two of us still standing, and sadly two gone and one about to launch herself into adulthood graduating from grade 12. We were an odd threesome battle-scarred with hopes for our futures, our lives. My hopes were their futures, and their futures were unfolding in front of them … I was so proud.
When my youngest finished his grade eleven year dismally my pride and my hopes for his future were somewhat dimmed by the reality that he was about to finish school with hopes of … what … to become just like Dad; watching Oprah on a government disability pension.
Don’t get me wrong … that pension allowed me to be a stay at home Dad and keep an eye on everything. Our health, our wellbeing and not miss a single grade school or high school presentation of pretty much anything and everything. I am grateful to have been able to do that but once my youngest
finished school … what did he think the future held for him. Barely 17 he was already a long term survivor, a lifetime survivor.
I was unsure at the time if my return to school, to life, was an example I could set for him and I’ve learned in life and over time to trust and go with the “unsures” you are handed.
When my son entered his grade 12 year with a 51% average, I entered college. If all went as planned we would spend the next year with our faces buried in books and graduate at the same time. That didn’t quite happen as planned; I graduated and he had another semester to go because he was 18 and thought he knew everything.
I have to say that over the course of the last 25+ years the one thing I enjoyed most was my kids being or seeming to be unaffected by the drama that had in so many ways become a part of our lives. He was a know-it-all teenager and I couldn’t be happier for the very normality of it all.
That entire school year for me was in part finding out if I could even do the 9-5 Monday to Friday. I found out that not only could I do it but in many ways I was still the class clown I had been in high school some 30 years before … sitting at the back of the classroom with a partner in crime … studying and smoking pot in the parking lot before an exam, some things never change. What did change was those two class clowns went on to be the first to gain and maintain employment following graduation, still to this day.
My children had always and will always be the most important thing in my life and I felt so very strongly that my youngest know that he was very able and capable of doing whatever he wished to do and hoped that I could in some way help him realize this.
I learned more about myself during this time and my son thought I was pretty cool. Mission accomplished. Turned out the mission was mine all along, yet I thought I was doing it for him.
I learned that I was very able which when you think of it could have backfired terribly had I not been able, but it didn’t, it worked.
We became big boys together him at 18 and me at 45. My son went on to spend some time in Johannesburg South Africa working at an orphanage for children living with HIV/AIDS before settling into being him, being Tom. Both of my children have this amazing work ethic that I both marvel at and also wonder where it came from.
And me … well I’m here, not quite the paralegal I had planned to become but I ended up with my dream job all the same. I may have spent my entire college time learning about the law but in the end I learned about me and my abilities, our abilities, and they are endless.
I have been struggling as of late to put into words confirmation of my brothers homophobia towards me. I need to process this in such a manner that allows me to have a personal debriefing on why my brother would rather not know me and how I feel about that.
I have for some time believed that my brother my only sibling is homophobic, which in turn would explain his absence in my life. I have never been close with him so I find it hard to read his actions or lack thereof. So, even though I now know of his lack of moral fibre I am left with more questions than answers. There is a part of me that needs those answers and an even bigger part of me that knows those answers will never come.
I need to answer on his behalf, using his intellect or rather obviously lack thereof. I just can’t fathom how people arrive at a decision not to have someone in their life based not in reality but rather a skewed version of one’s own perception of right and wrong.
My brother and I were raised by two very loving, open minded, honest, caring hard working people who taught us both to be blind to race, religion, and sexual orientation. I had thought they achieved that very well, apparently not so much. I remember vividly coming out to my parents and my mother insisting that she be the one to tell my brother, because, well, you know how he is. I came out 36 years ago this month and his views about me have been stewing this whole time and I’m ok with that. 36+ years is a long time to be stupid.
I have seen my brother for lunches and only lunches over the past 20+ years; lunches that although he always attended, in hindsight I realized he never planned; I did. I spoke to him every year on his birthday, Christmases, anniversaries and the like, but never got a reciprocal call for the same. Those lacking calls were for him always an “I forgot” moment.
I really did think he just had a bad memory.
I never thought my brother could not care about me, us, my children, and our family. Other than our children we are each other’s only living blood relative. I am so very fortunate that my children, although not close in age, certainly have each other’s back and I know with every fibre of my being that each would be there for the other regardless of their paths in life. My parents passed many years ago now which I believe has given my brother license to be a more open and rather insensitive twatwaffle. Big man that he is, my Mother and Father would have had a few choice words for his beliefs and his behavior. So often in situations such as this the uninformed will all too often admonish those in the know about our choices in life.
So brother, let me tell you about my choices in life …
I choose to be honest with my children and never lead them astray with my own personal thoughts, beliefs or biases. I will never tell my children that anyone is less than or not as good as but instead will hopefully lead by example to treat all with kindness, dignity and respect.
I choose to live my life openly honestly and never allow another individual to suggest I do otherwise. I will always strive to be unwavering in my faith of all and at the end of the day when I lay my head to rest I do so with the knowledge that there is no one in my life that I have chosen to treat poorly or differently.
I am most deliriously happy to be able to state in a true brother vs. brother moment of triumph that I am in fact right and you sir are wrong … dead wrong. Being the little brother all these years never afforded me the upper hand. I not only now have the upper hand I in truth hold all the cards; and you sir are the joker that is so very often discarded
On that note,
I cannot have you, my brother, in my life because that would go against all that I hold near and dear. I would be doing my children a great disservice if I showed them that they need to hang on to people simply because it’s family. This is not what family does and certainly not how family acts. Familial love when done right is always unconditional.
It is not a matter of forgiveness because in truth what you have done by example you have not done to me but instead to yourself and your children; shame on you.
I don’t have to answer to your children … you do.
As a bit of a Face Book fan I see a slew of memes scroll by my eyes on a daily basis covering a variety of topics … cats, dogs, silly people, Trump and most recently of course the tragedy of the massacre at Pulse nightclub in Orlando. One very poignant meme had to do with the fear of public displays of affection quite often felt by the LGBT community. I gave this some thought and would have to concur.
I am one of many who have the ability if you will of stating, proudly that I have been married to both a man and a woman. This statement has a purpose among many one of which is to own my chosen bachelorhood by claiming “I’ve covered the bases so to speak and have no need to do it again.” So when this meme rolled by the ot
her day I took a moment to reflect on the sad truth at least for me of that statement.
I was married to a wonderful woman for close to 6 years and for the life of me I have no recollection at all of our first public display of affection. I recall when it most likely happened which would have been on our first date and ironically it would have
been in a gay
bar. I also do not recall the first time we walked down a street hand in hand. I know that we did this because we did it many times. But there is no memory of that all-important first time.
In stark contrast …
My first kiss in public with another man took place on the corner of Danforth and Arundel Avenues, 1984, Toronto’s east end in the middle of February just outside a Greek restaurant that we had just had brunch in. Brunch would have of course meant it was Sunday, which means I even know what day of the week it was.
His name was Robert.
The first time I held hands with another man in public would have been again in Toronto in the heart of the village, walking down Church Street … the Spring of 1997.
His name was Eric.
I will even go so far as to share with you of the time my husband and I planned a vacation to an LGBT campground … the thing we looked forward to was walking our dogs in the evening along with our camping neighbors … and holding hands.
I am certain that those memories with my wife, the mother of my children are there somewhere and one day hopefully they will surface and bring a smile to my wrinkled old face because the person that I made those memories with lives on in my heart and always will. Those boyfriends that I recall hold no real space in my heart except for those specific and unique memories of our time together yet those vivid moments of our public displays of affection overshadow the memories I desire most.
Homophobia took my heterosexual memories away …
I make fun at my own expense of course and certainly mean no disrespect to others but there is some truth to it. The homophobia was first and foremost mine and obviously internalized but yeah… there is no going back and I miss the fact that I am missing those memories.
It’s important for me to pull something out of the Orlando massacre that is positive and there is nothing about that event that I can directly extract of course but I will take away from it my own freedom to kiss, to hold hands and cherish the life I have and the memories I will make.
We are Orlando.