It was both an honour and a pleasure this past Monday to receive an award for 25 years of service at the AIDS Committee of Toronto’s Annual General Meeting. I must confess to feeling like I have drawn on more services than I have provided but the 25 years is amazing, even from a survival point of view! Here I am with ACT E.D. John Maxwell:
I have been a follower, if not always an admirer, for many years.
Your change of heart, more quantifiable with each successive column I read from or about you, has touched me a great deal.
Suffice to say I weathered some of your former comments, written or on CTS, no worse for wear but, so convincing were you, I find I need to pinch myself to take in how you have changed.
I am by no means a model gay citizen. A recovering alcoholic, HIV-positive for 26 years, and a gay rights activist since 1981, my journey seemed to be at right angles to yours. I don’t know that I have ever scorned you in public but, to the extent that I have resented you, I apologize. I nevertheless admired the strength with which you held your convictions.
Please work on Dr. McVety 😉
All the best,
Here’s an excerpt from my Facebook feed today after I heard Shaun Proulx on CBC Radio’s Metro Morning referring to his blog on HIV Divorce.
I have AIDS, and have had for many years. I can’t seem to walk that back, to HIV only, so I think of myself as surviving HIV/AIDS. While HIV may never lead to AIDS for some, for other old timers like me that genie seems out of the bottle. I’m rattled by Shaun Proulx’s call for a “divorce” between HIV and AIDS because they are linked and to leave AIDS apart feels further stigmatizing.
Vera Ingrid Tarman, Clare Nobbs, Marie Robertson and 12 others like this.
Lori Knight-Whitehouse See my comment in one of your later posts.
Kenneth G. Chaplin Saw it – and thanks!
Sandra Millar In my opinion, those of you who have been long-term survivors should be “revered” (is that the word?) because you have been through hell to keep going. What with changes of meds that cause your body untold havock and struggles to keep going, with every day a hardship, medically, emotionally and financially! The younger generation who are walking on your back, and others like you need to spend a day with you, to be even begin to have an opinion! And this from a friend and ally, who knows she has only scratched the surface of what this terrible disease does to this living with, and those affected by, who journey with friends whose struggle still ended in death and those friends I know struggle every day…with all the above and more, including some with survivors guilt. I rest my case, for today…but wish I was able to put this on everyone’s post. I KNOW that if I had to walk a mile in your shoes, I would not be so strong or resilient! My thanks for being you – to you and all the others I know…and have known, as just because they died didn’t make them any less in my eyes! hugs, Sandra Millar
Karen MacKay Llewellyn Wanting to affirm the remarks made by Sandra. You have walked the walk with such courage, Kenn. It has been and continues to be so challenging. You have taught us all so much by permitting us to accompany you on this journey. I am ever so grateful to have been invited to share in the struggle and the triumphs. Blessings, my friend!
Tammy Leslie hey buddy xxxxxxx
Kenneth G. Chaplin Such a gratifying feeling to read your support, Sandra Millar and Karen MacKay Llewellyn. Overwhelming!
Paul R. Gilroy Tx Kenn, I am glad to have the opinion of someone (yours) who knows and has experienced the full dimension of HIV / Aids and its impact. I had the same thought that the two are inseparable listening to Sean on the CBC this morning, it seems to me to be wrong to consider that HIV and Aids can be so casually divorced.
Clare Nobbs I heard the interview on MM this morning and was uncomfortable with what SP was saying. Didn’t seem right. It was an argument of privilege to me – and one that was filled with holes. Oftentimes, I think, such arguments come from internalized struggle. And that is not a good place to speak from as it is using the oppressor’s tools against one’s own/self. I can’t say I’ve delved into this too deeply, but I can say that I have the deepest – and fondest – respect for you, Kenn, and the road that have walked these many years I have known you. love, peace and respect to you.
Kenneth G. Chaplin Oh, so many hugs for and from Paul R. Gilroy and Clare Nobbs. Thank you. I have to remember that health outlooks are much different to today’s newly diagnosed by which I mean post-drug cocktail and the simpler treatments nowadays. Privilege, Clare, yes that rings true.
From my friend Betty Ann on her Facebook page:
“This article deeply moved me…as I suspect it will for any of you who have been impacted by the kind of grief associated with multiple loss, deaths due to overdose and or HIV/AIDS. Rather than just clicking on “like”, can you write a few sentences in a comment? Maybe just something about how this article landed with you? Guess I’m lookin for a little peer support here…”
I know there are many stories related to this piece which could be written. Don’t be afraid to jog my memory or ask a question.
I URGE you to click on the following link and read:
Remember those days when we couldn’t decide how to go to a funeral and make sure a dying friend was okay? Open casket versus closed? Cremation versus traditional burial? Would it be okay to go a little over the top in church? Someone else is sick? I thought he’d killed himself.
“…those days…come screaming back out of nowhere. I don’t live with it; it lives in me. It is a part of me and makes me what I am. That does not mean I want it. I am not alone in this. And I am not alone in finding that loss accumulates and is sticky and hangs together like lumps of tar and sticks and sand on the beach after a storm.”
“…these thoughts, the ones of dead friends and loved ones, are in the heap in the back corner. They lurk behind the door with a skull and crossbones saying; “Fuck Off, Asshole,” in 72 pica. Then in smaller type: “You know who and what’s in here, so why don’t you just walk the fuck away?” And every so often I walk through that door for whatever reason and it takes days to recover.”
“People died around you. Repeatedly. Let me emphasize: Repeatedly. There were no protease inhibitors. No Truveda. Just blind hope, determination, anger, solidarity, organizing, guesswork and gambling on whether to take a drug or wait for the big one that will work — and die waiting. This was not a time of long-term sustainability.”
“I am not perfect. But I have found some happiness in my life, not by achieving resolution, but by acquiring wounds, then healing some and developing scar tissue that will always be there, and by just keeping going.”
My laptop feels too small for what I want to write. I need a full-sized keyboard to spread out my fingers as on the keyboard of a grand pipe organ. I know the feeling of not wanting to go through personal items and photographs of friends lost. But I also know it’s an irresistible tug sometimes. I more often than not know what it means just to still be here when I could have, should have been dead, with only analogies of Vegas or God’s perverse selection process as explanation. I reject both.
I know that “just keeping going” has taken a lot of courage for many people, so why not me, too? I accept that there have been times when it seemed much simpler to die than to just keep going. I’ve even wished I would have died long before now. But there are new things to work on, new struggles to wage, even while bearing all the scars of having nearly shit myself to death.
“This December I found a mass the size of a cantaloupe in my lung…I used social media to express my feelings without having to burden my family and friends.
I’d like to write a feature…that explores the way the Internet has changed the way we view illnesses, both visible and invisible, and how it’s changed our acceptance of grief and death…”
As I first reported on Facebook last week I had the opportunity to be interviewed by Teresa Sarga, a journalist and blogger from Syracuse, New York, about blogging as a person living with HIV/AIDS “…and more”. The issue of stigma is being unearthed and critically examined more and more lately, which is a good thing.
I’ve decided that, so long as I am open, I am not letting stigma thwart me.
Stigma surrounding HIV/AIDS, in my case, began with me.
If anyone deserves AIDS, I told myself, long before I tested positive for the Human Immunodeficiency Virus, I do.
What a statement with which to live my life.
Fortunately I am able to unpack it:
-as if anyone deserves AIDS (or cancer or heart disease or diabetes)
-as if disease and illness discriminate
If I have learned nothing else about my bipolar II today, it is that I am certainly not the only one in similar circumstances who has found photography to be a healing past-time. Facebook is teeming today with some of the creative works of the bipolar support community.
Scrolling through various blogs and web sites I have also seen confirmed that we face many of the same risks to ourselves as my fellow survivors of childhood abuse, sexual and otherwise, most pointedly suicide. Which doesn’t make me suicidal. Just so you know. It’s just one of those options I have kept in my back pocket since it seemed clear, however wrong, that I would be dead of AIDS-related illness before the 90s were finished. Of course it’s also a tragic reality among those who suffer from post-traumatic stress disorder (PTSD), as we have heard about too often in connection with soldiers returning from Afghanistan or other battle-weary countries.
To be frank I am feeling very optimistic about my process right now. My p-doc is closely monitoring me as I add another “head med”, as I call them, to my cocktail of HIV, diabetes and bipolar medications. Spring has, for many years, been a time of hypomania which I used to refer to simply as an absence of depression. But it got much worse than a passive absence. When the cat (or black dog) is away, well…I played alot. Absent of depression, present with feelings I thought I could control, a deception of self that alcoholics often talk about, too.
I have often described the feeling of hearing the Bipolar II diagnosis, and the ways it fits me, as a day of sweet relief. It was difficult enough to live with a lifetime of, let’s say, ultimately poor decisions; I was glad to hear a biological explanation for them It doesn’t absolve me of everything but I have more compassion for myself and others.
Anyway the new med seems to be helping a lot. There are fewer sleepless nights, especially deliberately sleepless nights and I’m back on an even keel that I have experienced many times before on this journey.
Here is a series of three recent photographs taken here in Toronto, Canada, which I call Walking past colours
Disclaimer: My memories have been assisted by Google and a piece of paper, 8-1/2″ x 11″ divided in half, on which is written the following:
After signing up for The Movie Network again recently, I came upon the film “Vito: A Man For All Seasons”. I was immediately transported back to the early summer day in 1982 when I met the celebrated author, filmmaker and activist Vito Russo. It was at a very ambitious conference, at the U of T perhaps, put on by, among others, The Body Politic collective called “DOING IT! Lesbian & Gay Liberation in the 80s”.
Vito put to words, and obviously used film clips, what he had done in the book but had us riveted with laughter during the presentation and in the question and answer period which followed.
Because I was staying with a couple of the conference organizers for the weekend and, I’d like to recall, at 22 among the younger guys there I was invited to lunch with Vito – then in his 30s and a real looker!
We walked to a patio along the north side of Bloor, I’m guessing near Brunswick, perhaps Dooney’s.
This sheet of paper protrudes from my copy of Vito’s book “The Celluloid Closet – Homosexuality In The Movies” which had come out the previous year (as had I). I described to him how upset I was that I had not remembered to bring the book along on my break from my then-dreary existence in St. Catharines. Such, apparently, was the extent of my troubles back then! He thought nothing of just folding a sheet of copy paper in half and writing the cute note. This story goes with it whenever the opportunity presents itself.
While I’d like to launch into a tale of love unleashing itself into a passionate, long-distance relationship, as we sat across from one another, I can’t even allow my “based on actual events” note to take me there, as much as I’d like to.
He vented about Ronald Reagan. (By comparison we were experiencing the second go-round of Pierre Trudeau, the Charter of Rights and Freedoms round at that, with Conservative Brian Mulroney only in our nightmares.)
The documentary inevitably moved to the beginning of the AIDS crisis and its eventual taking of his partner Jim Sevcik in his thirtieth year. That same year, 1985, Vito himself was diagnosed with Kaposi’s sarcoma and died in 1990, just a year-and-a-half or so after my diagnosis. But what a difference there has been, both in opportunistic infections and in our respective treatment options.
Vito went on to become a founding member of the media-monitoring group Gay Lesbian Alliance Against Defamation (GLAAD).
In 1987 Vito, Larry Kramer and ten others founded ACT UP!, the AIDS activist organization which has been at the centre of some of the biggest developments in AIDS anger, compassion and care. A clip in the film is of Vito shouting,
“People are dying of homophobia. They’re dying of Jesse Helms. They’re dying of Ronald Reagan…AIDS is a test of who we are as a people!”
Given all he went on to do in his AIDS-shortened life I count it a privilege to remember the joy of that day on a patio in Toronto and the personal touch of his autograph.