I’m re-directing you here to my friend Aless’s web site. Aless has graciously taken over a World AIDS Day project I started – and has even named it for me!
I’m delighted to be at the top of the list, perhaps it’s random, of 16 Five Star Rated AIDS Information Sites & Blogs – and I’ve found a few fellow travelers in the process!
Healthline editors recently published the final list of their favorite HIV & STD blogs and I’m pleased to let you know that this blog made the list, which can be found here (in no particular order).
I am very appreciative of this vote of confidence!
Kenn Chaplin is no defeatist; he’s brazen, energetic, gut-wrenchingly honest, and inspiring. This active blogger, political activist, traveler, and long-time AIDS veteran knows a thing or two about living with AIDS.
He fills his blog with jokes, personal stories, tributes to friends who have lost the fight, and lovely photos of anything he wants. Along the way, he educates his readers about life with AIDS. Kenn knows (and shows) it’s not always easy, but hopefully he also knows how important his strong, steady voice about life with AIDS is for the rest of the HIV/AIDS community. Go, Kenn!
August 20, 2011
Tens of thousands of Canadians have written to me in recent weeks to wish me well. I want to thank each and every one of you for your thoughtful, inspiring and often beautiful notes, cards and gifts. Your spirit and love have lit up my home, my spirit, and my determination.
Unfortunately my treatment has not worked out as I hoped. So I am giving this letter to my partner Olivia to share with you in the circumstance in which I cannot continue.
I recommend that Hull-Aylmer MP Nycole Turmel continue her work as our interim leader until a permanent successor is elected.
I recommend the party hold a leadership vote as early as possible in the New Year, on approximately the same timelines as in 2003, so that our new leader has ample time to reconsolidate our team, renew our party and our program, and move forward towards the next election.
A few additional thoughts:
To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don’t be discouraged that my own journey hasn’t gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer.
To the members of my party: we’ve done remarkable things together in the past eight years. It has been a privilege to lead the New Democratic Party and I am most grateful for your confidence, your support, and the endless hours of volunteer commitment you have devoted to our cause. There will be those who will try to persuade you to give up our cause. But that cause is much bigger than any one leader. Answer them by recommitting with energy and determination to our work. Remember our proud history of social justice, universal health care, public pensions and making sure no one is left behind. Let’s continue to move forward. Let’s demonstrate in everything we do in the four years before us that we are ready to serve our beloved Canada as its next government.
To the members of our parliamentary caucus: I have been privileged to work with each and every one of you. Our caucus meetings were always the highlight of my week. It has been my role to ask a great deal from you. And now I am going to do so again. Canadians will be closely watching you in the months to come. Colleagues, I know you will make the tens of thousands of members of our party proud of you by demonstrating the same seamless teamwork and solidarity that has earned us the confidence of millions of Canadians in the recent election.
To my fellow Quebecers: On May 2nd, you made an historic decision. You decided that the way to replace Canada’s Conservative federal government with something better was by working together in partnership with progressive-minded Canadians across the country. You made the right decision then; it is still the right decision today; and it will be the right decision right through to the next election, when we will succeed, together. You have elected a superb team of New Democrats to Parliament. They are going to be doing remarkable things in the years to come to make this country better for us all.
To young Canadians: All my life I have worked to make things better. Hope and optimism have defined my political career, and I continue to be hopeful and optimistic about Canada. Young people have been a great source of inspiration for me. I have met and talked with so many of you about your dreams, your frustrations, and your ideas for change. More and more, you are engaging in politics because you want to change things for the better. Many of you have placed your trust in our party. As my time in political life draws to a close I want to share with you my belief in your power to change this country and this world. There are great challenges before you, from the overwhelming nature of climate change to the unfairness of an economy that excludes so many from our collective wealth, and the changes necessary to build a more inclusive and generous Canada. I believe in you. Your energy, your vision, your passion for justice are exactly what this country needs today. You need to be at the heart of our economy, our political life, and our plans for the present and the future.
And finally, to all Canadians: Canada is a great country, one of the hopes of the world. We can be a better one – a country of greater equality, justice, and opportunity. We can build a prosperous economy and a society that shares its benefits more fairly. We can look after our seniors. We can offer better futures for our children. We can do our part to save the world’s environment. We can restore our good name in the world. We can do all of these things because we finally have a party system at the national level where there are real choices; where your vote matters; where working for change can actually bring about change. In the months and years to come, New Democrats will put a compelling new alternative to you. My colleagues in our party are an impressive, committed team. Give them a careful hearing; consider the alternatives; and consider that we can be a better, fairer, more equal country by working together. Don’t let them tell you it can’t be done.
My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.
All my very best,
David Letterman, noting Yoko Ono’s 78th birthday last week, joked that she celebrated by breaking up The Jonas Brothers.
Back in the twilight of sixties, perhaps early seventies, a much-appreciated Christmas gift (namely for my older brother Craig but which the rest of us took full advantage of) was a record player. Not just any record player, either. This was stereophonic, which as far as we could tell just meant there were two speakers – left and right – with enough spare cord to separate them by a couple of feet or so. We later learned (of course Craig already knew) that cool things happened in one speaker, then the other, sometimes back and forth.
It wasn’t in a big coffin-sized cabinet like my aunt’s. It was very slim. The record player dropped down from inside like a Murphy bed and it had a spindle maybe six inches long where you could pile records one on top of the other and they would drop down, individually, as the one before it finished – very cool. This also worked for 45s (single songs, double-sided). An arm swung over from the corner and held the records in place up top until they were ready to hit the turntable.
It’s hardly a surprise, thinking back, that it was green – my mother’s favourite colour – kind of the same shade of green as the fridge and stove.
If I remember correctly, that Christmas Mom and Dad played it pretty safe (for them anyway) with gifts to us of the greatest hits albums of Tom Jones, Engelbert Humperdinck and Herb Alpert & the Tijuana Brass, the latter being a Christmas album some of which I now have in mp3 format for old times sake.
I’ll try to think of a list of many of the albums which eventually flopped down onto that stereo turntable but meanwhile, as I enjoy the remastered Beatles iTunes in my ears, I’ll share a few memories of them.
I remember seeing them on one of their Ed Sullivan Show appearances. I remember the black suits and ties, white shirts and the scandalous mops of black hair which they all shook at various times as they performed. I must admit my appreciation only grew for them after they broke up, I was quite young, probably allowed to stay up to see them because the mouse was on with Ed, or promise for later that night.
Craig had both Let It Be and Abbey Road, the two I’m listening to now, if not more.
I almost owned a late hit single of theirs – at least I was late trying to get it, which I didn’t. My first and last shop-lifting attempt was, among a couple of other things (pipe-smoking equipment well beyond my age), the single “Revolution”. Never did get it, but will never forget the reason why.
As I was heading for the mall exit at Woolco (that dates it right there) a man hooked me under my right arm, very discreetly, and asked me to “vide tes poches” – empty my pockets. Well, amateur that I was, hoping to impress my peers and yet flying woefully solo, he very nearly had a few extra lumps from the back of my pants!
I was red-faced, nearly crying I’m guessing by then, certainly panicked. His office was back between the washrooms and the shipping room. Long story short, he eventually told me that he wasn’t going to involve the police nor my parents. Good thing, too, because as I explained to him I was just a few months away from a once-in-a-lifetime school trip to London (so I must have been 15 or 16).
Other than being later than expected home that night, I escaped unscathed.
Happier memories just floating by come from a diner in the Bellerive district of Salaberry-de-Valleyfield, where I grew up. It was called Le Fricot (The Stew) best-known, by me, for its nice, brown french fries (second only to the chip van which parked near the tracks on Maden Street most summer evenings). The Fricot was a one-storey building, modern, cube-shaped (it might be mistaken for a bank nowadays) and was built on a corner of an otherwise older neighbourhood so I suspect one of our annual major winter fires probably cleared a spot for it. Inside, diner-style, were booths separated by faux wood just above elbow height and mini jukeboxes dangled over the partitions between booths. I’d guess the going rate was three songs for a quarter. I distinctly remember that opening yelp from The Beatles’ “Oh Darlin’” there!
Song titles – and picture me singing the background sopranos at the top of my lungs in the basement – included The (soaring) Long and Winding Road, the hammer instrumentation of Maxwell’s Silver Hammer, the guitar opening and brass-in-bass line of Because, the simple, descending, repetitious bass clef piano line in Let It Be, and the lyrics alone from She Came Through The Bathroom Window were hilarious enough for this kid!
I believe, now having read it, that she might have been nudged to give me this book because she knows, perhaps as much as any confidant, “The Great Sadness” (as the novelist puts it) which has been stored, occasionally visited, and allowed to grow unchecked in my own run-down Shack. I’m guessing she might believe some of the messages of the novel could be applicable to me.
It is not difficult for me to imagine how wrenching it would be, certainly a step out in faith, to face those men I have written about who wronged me in my childhood and youth. At least one is dead and the others, well, I don’t even know their names let alone their current state-of-being.
That’s not the point. Were they to appear in my dreams I would almost certainly be forced to confront them. Would I, in such a dream, or do I now, in compartmentalized pain, feel willing – to say nothing of empowered – to symbolically release their throats from the anger of my tight grasp and hand them over to the power whose many names include God?
The message seems to be to trust that something beyond my judgment, my imagination – beyond belief often – is a better repository for my judgment (which I ultimately can’t inflict anyway) than am I.
Somehow, in releasing my grip, I imagine forgiveness looks more like letting go – leaving judgment to forces beyond me. The haunting “monsters” of my past, after all, are dead as far as I know so my preoccupation with holding on, even if it’s not uppermost in my consciousness, is clearly only hurting me. I get that. To let go completely, though, seems more than I can do – at least on my own. Another message of the book, then perhaps, is that I don’t have to do it by myself.
To the best of my ability I release my hold on these men, that in letting go of them their power over me will be lessened. I will not, however, shy away from using the experience – all of it – as best I can whenever I believe it might be of assistance to someone else.
A & P, the Great Atlantic & Pacific Tea Company, is being ahem reorganized.
The company’s Chapter 11 filing today is juxtaposed in my mind closer to Chapter 1 of my life.
The biting cold wind of this mid-December day reminds me of the A & P of my childhood. (You might have read a story I wrote about this recently but I mistakenly over-rode its url for something else – thereby deleting it sans backup – so today’s timely business story has prompted me to try again.)
A & P, on Victoria Street in Salaberry-de-Valleyfield, Québec, was one of only a couple of grocery stores in the small downtown area and, by today’s standards, would not be described as a supermarket. It was located in a gray stone building in a row of stores with apartments over top, just steps away from the old post office’s iconic clock tower.
Shopping day was always Thursday. Dad would bring home his pay cheque at lunch time (imagine the luxury of being able to drive clear across town to come home for lunch every day!). Then after a brief “stretch out” after his lunch, those of us still not in school would get in the car with Mom and Dad for the afternoon’s outing.
We’d drop Craig off at school, take Dad back to work (“Toodle-oo”, he always exclaimed) and then Mom would slide across the front seat into the driver’s position to carry on with Lynn and me in the back-seat. (She was sixteen months my junior, and therefore the youngest, until Janice’s arrival when I was eight.)
I don’t remember parking being much of an issue along Victoria Street but I’ll admit to have been too young to notice if it was. I can picture Lynn and me taking Mom’s hand, one on each side, Mom lifting us over snowdrifts at the curb.
Mom would have made sure our faces were sufficiently covered to protect us from the cold and wind. I still remember how much I liked the feeling of Mom pulling scarves tight, making sure our jacket zippers were all the way up, and the feel of her adult-sized fingers touching my cheeks.
I believe there were two side-by-side doors at the A & P, an entrance and an exit, but the doors were heavy and only Mom could open them. There was a slight slope up from the sidewalk to the doors with bristly, rubber mats where we could give our feet a preliminary snow-loosening stomp. (There was always a supply of flattened cardboard boxes on the floor just inside the door where we were expected to try to finish the clean-off.)
The shopping experience, no matter what the time of year, was not too memorable for me in those early days although I am sure that my sister and I tried unsuccessfully to pull our favourite things into the big, four-wheeled cart.
What has stayed with me all these years is what went on at the end of one aisle near the check-out. It contributes to my sensory memories of cold cheeks and toes, sweat on my brow and perpetual sniffles. A crimson red machine stood there with silver knobs and a chute up on top (I couldn’t find a stock photo of that description.) Coffee beans came out of boxes that looked like gum machines, flowing into paper bags which people filled, one at a time, then poured their beans into that chute up top. After making a very loud noise, the bags were placed at a mouth at the bottom of the machine and out came coffee, all ground into small bits like sand. The smell was fantastic and it permeated the store as stray grinds fell onto the wet cardboard all around.
I didn’t drink coffee until I was much older, by which time this old store had closed, replaced by a sporting goods outlet. I think our next grocery stores were Spot and then Steinberg’s but I will never forget A & P for its coffee aroma, evident to anyone coming in the front door (in all four seasons).
Eight O’clock Coffee!
I cannot remember a time when music was not a vital part of my life. Music is in my genes, especially from my mother’s side of the family, with my grandparents having been matched up in the early 1920s as a violinist/fiddler being accompanied by his pianist. What I wouldn’t give for a cell-phone video of one of their evenings together at a Depression-era house party in rural eastern Ontario! My mother studied piano throughout her childhood, later graduating from the Royal Conservatory of Music in Toronto, then earning her qualifications to teach the subject in Ontario schools. With probably fifty years of teaching individuals, coinciding with thirty-plus years on the pipe organ at church, and I’m sure you’d agree that it was inevitable my siblings and I would also have some natural gifts in this area.
Anytime I am asked what types of music I like the only genres not on the list, with the exceptions of a few crossover songs, are country and today’s pop. This, of course, leaves me with a vast array of music to choose from but the music player in my head doesn’t shuffle the same way that an iPod can, but goes from mood-to-mood, sometimes lingering on and repeating, over and over, the same song.
As a teen I would play and sing along to songs such as Eric Carmen’s “All By Myself”, the Beach Boys’ “In My Room” and “Hide In Your Shell” by Supertramp in my basement bedroom, no Karaoke machine required, at the top of my lungs. I know this experience was not unique to me and, while the examples cited were just a part of my record library, my tastes were generally not too mainstream – certainly not for a guy!
All of this is to prepare you for a sampling of the YouTube video-jockeying I did late last night, prompted by two guys posting two different songs by Josh Groban. The first was a memorial tribute, from a man who had lost his partner to AIDS several years ago, while the second was a Christmas season favourite passed on to his Facebook friends.
Then I was swept away, again, by this.
The next selection, a lot less video than audio, was such a blessing to find recently (and another artist does sing it on camera but at a much jumpier pace than I was accustomed to.) Years ago, when the AIDS Committee of Toronto offices were at 464 Yonge Street, there was a group of us who gathered each Sunday evening for a healing circle. It always concluded with a slower, studio version of this song, and hearing it again sends through me chills of so many emotions:
André Gagnon – whose every recording I have possessed in formats ranging from 45s to LPs, and from cassettes to CDs and mp3s – composed this particular song in homage to beloved French Canadian poet Émile Nelligan (1879-1941). The poetry, and tragic life, of Nelligan inspired many Québec-based composers, authors and playwrights. In fact Gagnon, along with the legendary Michel Tremblay, later penned an opera based on Nelligan’s life and work.
These pictures hardly do his Québec notoriety justice. Having always fascinated me in my adult years, I often pass some of his haunts whenever I am in Montréal although, to the best of my knowledge, the boutique hotel which bears his name in the Vieux-Montréal quarter has no direct connection. (The first two images are from his home, on Laval Avenue at rue Du Square St-Louis, and the bust in the fourth picture is in that square across the street.)
And now, as I prepare to conclude, here is my favourite Christmas carol – bar none!
I’m home from picking up prescription refills to paint a story-picture. Note to self (the umpteenth): always, always carry a pen and paper!
Having dropped off written prescriptions for repeats of my head meds, I walk briskly in the fresh cold wind over to the Cabbagetown location of Buckstars to wait. A grande Americano should fill the time nicely.
As I pull open the door my sense of smell is flooded, not with the many varieties of beans ground here, with the overpowering smell – scent would be too subtle a descriptor – of cologne.
There, seated at a wooden table and chairs set right inside the door, is a man whose description deserves at least a paragraph so I continue to the counter and order my drink. Then I make a quick stop in the loo while the barista does his thing.
Soon, cup in hand, I return to the front of the shop where a cushy chair is, thankfully, available on which to seat my emaciated bum – but I have to whisk by the aforementioned man first, his cologne hitting me before, during and after my walk-past.
I carefully place my cup on the table in front of my chair, tuck my back-pack beside me, and shed first my toque, then my outer jacket, followed by the inner fleece. (I’m going to be wearing Craig’s much warmer coat tonight – it is that cold in the wind.)
Again wishing I had a pen and paper or even a phone to text myself some notes, I carefully observe the subject in the window seat.
He presents shiny black hair, leather complexion either of southern European extraction or the product of a tanning bed’s fourth visit (think John Boehner). The cologne continues to waft throughout the front of the shop as the door opens and closes. Although he is seated the entire time I am there, I assess that he is not exceptionally tall as his feet tuck underneath his chair quite easily. What he lacks in height he makes up for in girth. He is quite rotund – not a Mayor Ford (sworn in today) overweight but large enough so as not to be able to see his black shoes which are so shiny that he might otherwise be able to examine his nose hairs without any eye strain. He wears a black mock turtleneck shirt-sweater under a big-not-tall blazer, burnt gold in colour with a faint black check pattern throughout, with matching black slacks. I did not take note of his right side, which faced the window, but on his left he wore a large gold watch and gold accordion-style wristband, and a gold pinkie ring that rode right up to his knuckle with a setting, which filled that entire space, of what looked more like shards of glass than diamonds in a flat bed of something resembling white marble.
Yet this is not Liberace reincarnated.
He looks quite gruff so, as he regularly checks his watch, fanning his scent like a disposable air changer, I guess that he might be a fight promoter or maybe a boxer’s manager – there being a youth boxing centre nearby if I’m not mistaken.
I hum along to an ambient recording of Ian and Sylvia singing “Four Strong Winds” before I assemble my outerwear and venture back over to the pharmacy, wishing it was Christmas cinnamon and not cologne I was smelling as I push the door open. Less is more, Sir. Less is more.
An early afternoon visit to my doctor (the g.p.) leaves me feeling buoyant enough to record this story in my head. Blood pressure: 120 over 80. Weight: up five pounds. This is all good!
This evening I again head into the cold wind for a previously-booked appointment with a CT scanner. I have no reason to believe it is anything serious. But a year-old sinus infection, lessened somewhat with two more rounds of antibiotics recently, bears further examination by the ear, nose and throat specialist I saw a few weeks ago. It is, it seems to me, a luxury of living in the downtown core of a city that would allow me to walk over to the hospital for an 8:30 pm CT scan. These are my kind of hours!
I know I’ve been on worse lists! Top 50 Blogs About HIV and AIDS
By “ambulance chasers” I mean media who wish they could report on the illness, the meds, a cure and some drama all in about 52 seconds. And they try.
This year, rather than run to the annual UNAIDS report on HIV prevalence (good news and bad news as usual), I invested some emotional energy in assembling the stories posted here earlier today. I’m definitely going to repeat the exercise and maybe, if I ask earlier, I’ll get a greater response. Not that I’m disappointed, far from it. Frankly, with most submissions arriving within the last 48 hours (hardly a surprise), it was all I could do to get them out by a decent hour this morning.
After a brief nap, and an even shorter appointment with my dermatologist, I walked over to the AIDS Memorial for some pictures – touchstones, really, of seeing another World AIDS Day in. I hope I never take years for granted.
A very light snow-rain mix gave a tear-like sheen to some of the photos. I wandered through again briefly at dusk as hundreds of red lights gave life to an AIDS awareness ribbon at the front of the park.
Earlier I got in a little closer to the names on the monument than I usually do in photos. It was beautiful to see some fresh flowers, some not so fresh and I was momentarily overcome as, with the day’s “work” complete, I again saw how wide a swath the illness has cut through my circles of friends. The hundreds and hundreds of names on the plaques from the early-to- mid-nineties here zoomed my emotional focus out from the very painful, personal losses I have experienced to memories of how doctor’s visits, hospital stays, wakes and funerals overlapped each other at a dizzying pace sometimes. A deep breath in and I was filled with the satisfaction, with raw emotion certainly, of the survivor that I am (among many), mixed with the profound loss of memories treasured and memories that would now not come into being.
I’m really tired. Perhaps I’ll mix in some more reflections in this space tomorrow.
Specifically (what would seem like too much for such a day as this, but only added greatness to it) – wrapping up with a small, intimate number of people a short journey together through a bereavement group.
For now, though, more of today’s pictures.
Each writer in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.
Tony Kushner wrote in the Playwright’s Notes for Act 2 of Angels in America – Perestroika that Harold Bloom translated the Hebrew word for “blessing” as “more life”.
“More life” repeats throughout the second half of the play. Later, Prior Walter says to the Angel of America, “But still. Still. Bless me anyway I want more life.”
I remember the first time I read these words in grade 12 while trying to write my own script for a movie in Film & Video Production. They made such an impact on me that I read them over and over again and they wound up being a scene in my movie.
The play ends with these words, also spoken by Prior Walter, “Bye now. You are fabulous creatures, each and every one. And I bless you: more life. The great work begins.”
On World AIDS Day, this more than anything else, is what I wish for you.
This past June marked 29 years since five men in Los Angeles were diagnosed with pneumocystis carinii pneumonia (PCP), marking the beginning of the AIDS epidemic. To date no cure has been found, and 25 million people worldwide have died.
In Canada, there were an estimated 58,000 people living with HIV/AIDS at the end of 2005. Of these, around 30% were unaware of their infection, a chilling fact that should drive home the importance, for everyone, of getting tested, and knowing your status.
I dream of a world free from AIDS, where Edward, and so many others are guaranteed to live well into old age barring hereditary and environmental factors. I dream of a world where instead of reading that thousands of people worldwide are diagnosed with HIV every day, we celebrate the victory of no new infections (or single digit), and a cure.
When Paul Martin was running for Prime Minister opposite Stephen Harper, the Liberals had a commercial that I only saw once, right before the election. I thought it was best commercial they or any party had come up with. Paul Martin was in a room and he encouraged voters to vote for their Canada. The outcome of the election was disappointing to say the least, I was a Liberal, through and through even though, even then I tended to fall to the left of the Liberal party’s politics. But that commercial always stuck with me. What would you like your world to look like?
I spent all of last weekend reading Kenn’s blog instead of writing and something that seemed to come up repeatedly (or I just read the same thing repeatedly, either way!) is that AIDS is not a single issue journey and it reminded me of a very heated debate on MySpace about how when AIDS is cured the factors that allowed AIDS to happen (apathy, poverty, fear, ignorance, etc) would still be there, a fertile ground from some other disease.
As it stands, so far this week I have posted an article about access to medication in prisons, Uganda’s “kill a gay” bill (Change.org’s words, not mine), and China’s AIDS apathy that boggles my mind. All of these things and so many more allow AIDS to continue spreading unchecked. Today I read on Twitter that 7,000 people worldwide are diagnosed with HIV every single day. A short time later I opened the newspaper to read that AIDS diagnoses among men who sleep with men are climbing back up to rates not seen since the 80’s.
As we remember the lives lost to HIV/AIDS and those living with the disease, we should also be asking ourselves what we can do to change the tide. We can start by being aware, getting tested, being informed and spreading the word.
I would like to leave you with these words from Stephen Spender’s poem, I think continually. They seem especially poignant today, on World AIDS Day.
“Near the snow, near the sun, in the highest fields
See how these names are feted by the waving grass
And by the streamers of white cloud
And whispers of the wind in the listening sky.
The names of those who in their lives fought for life
Who wore at their hearts the fire’s center.
Born of the sun, they travelled a short while towards the sun
And left the vivid air signed with their honor.”
These days I still only started to think about trying to get a meal in my stomach once an almost painful hunger came upon me, seemingly out of nowhere, on this occasion at about three in the afternoon.
I had just been to Sunnybrook Hospital where I was part of a clinical trial combining AZT and ddI. (What these letters stand for has never been of much use to me.) The ddI came in packets something like instant oatmeal but was a fine powder which had to be dissolved in water. (Bits of the powder invariably found pockets of my mouth to hide in until the next drink.)
Even after being on AZT for three years, my appetite was often in competition with my fear of “accidents”. I had almost died from a serious bacterial infection a year-and-a-half or so earlier and was, therefore, cautious to the point of negligent when it came to eating. However the hunger won out on this day, even if my choice of meals might have given pause to a dietician.
I was close by a well-loved Canadian chicken and ribs restaurant chain with the unlikely name of Swiss Chalet. (Chocolate and watches, maybe, but chicken and ribs?) Oh well, it had long been a favourite for fast, tasty food with an almost cookie-cutter like predictability. Just the way my not-too-adventurous palate liked it. Besides ‘twas the season for the “Festive Special” when my customary quarter chicken with fries and a roll was supplemented with dressing, cranberry sauce and – the take-away gift – a delicious Toblerone bar.
The attendant at the door seated me in one of those two-person booths across from a foursome of violet-haired women who had thrown their ski jackets and rain coats in a booth of the same size next to them.
It was the sixth observance of World AIDS Day – December 1, 1993 and I was glum. I had been visiting my dear friend Jim who was in deteriorating health (he would die six weeks later) and, while fear of his death was top-of-mind, I wanted to do something to commemorate the loss of so many friends already so I was taking on some calories to go for a walk to a very special park not too far from my apartment.
I took the women friends to be altos, judging by the sub-woofer-quality pitch of their voices. I already knew they belonged to a choir because of their clucking about the sopranos.
“Does it really help to hit such a high note by shouting it?” one asked rhetorically to gales of laughter.
As someone who is equally enthused listening to the conversations of others as I am being engrossed in one of my own, I found myself making mental notes for the great play or novel, semi-autobiographical were I to be asked, rattling around in my cerebral database.
The women gathered themselves up, sharing a laugh over someone I presumed was the choir director, and rustled past me towards the front door. I wasn’t too far behind, such is the efficiency of dining alone in a place where the meats are at all stages of readiness from about 11 to 11 daily. The women scattered at the College subway station, two heading underground, the others going north to College Street itself.
When it came to the next, and most important, errand of the afternoon I couldn’t afford too grand a gesture so, on the way to the AIDS Memorial at the 519 Church Street Community Centre (“the 519”), I bought a large bouquet of wild-flowers which I picked out of a curbside bucket in front of a corner store. A miserable rain-snow mix put a glisten on the cellophane wrapping as I continued up the street.
Walking up the sidewalk, along the side of the 519, and into Cawthra Park, the first few pillars of the memorial loomed into view. I could feel butterflies as I anticipated, and perhaps feared, the feelings that were rising within me.
AIDS had already cut such a wide swath through the gay community and, being as involved as I was with peer support (not directly related to HIV/AIDS), I felt as if I was already ranking the impact of people’s deaths by placing them on an imaginary diagram of inner and outer circles. Yet there were always situations where those rings were intertwined. It was just so pervasive.
I stopped at a pillar to read Michael Lynch’s beautiful poem, noticing for the first time that I was here by myself. The words seemed so familiar, not because I had memorized them, but because I felt as if I had lived them. I tucked a few flowers behind the steel plate on which the poem was engraved and continued up the path. The first names I recognized, friends, came into view. I pulled out several more stems and leaned against the pillar, tears of the day, of years, beginning to flow.
Then I realized that I was no longer alone. What looked like the light of a miner’s helmet was bobbing up the pathway towards me, two voices speaking quietly. As they reached me I recognized them as a TV crew, the familiar CBC logo on a tattered decal stuck on the man’s camera.
The woman I recognized as the reporter, seen both on local and national newscasts.
“I hope we’re not disturbing you,” she said softly, “but we were wondering if we could take some shots of you and then talk for a few moments after.”
“Sure, I guess,” I said, feeling the least telegenic that I ever had.
I continued up the path to the next pillar, again scanning the names until I saw a few more that I knew, placing flowers behind the silver-blue engravings. My reporter friends stayed back several steps, getting a variety of shots I presumed, so I kept to my task – the finding of a name sometimes feeling like a forgotten memory being jacked open, leading me to more names I knew I would locate on the same year’s plate.
The tears, and accompanying sniffles, were fairly steady now as dusk was falling, an unkind wind reminding me of the fast-approaching winter. The reporter and her cameraman were moving closer, the camera on his shoulder, light on.
“Show time,” I thought.
I placed my last flower but knew I had not seen the last name that I wanted to pay homage to, and I began to cry more noticeably.
The video clip of me quivering that made it to air that evening, between the reporter’s voice-over and the filler camera shots, was, “I’ve run out of flowers. I don’t have enough flowers. There are too many names!”
“You’ve lost a lot of people,” the reporter said, “Do you know how many?”
“I stopped counting at thirty,” I replied, sniffling, “and I haven’t tried to count again.”
“And you’ve run out of flowers,” she said, rather mournfully as fresh tears filled my eyes.
I don’t remember much else. It was pitch black by the time I walked home, wondering what would end up on the air. I called my mother, telling her that she might see me, if not over the supper hour, on the late national news. My voice did not betray the exhaustion I was feeling from having done quite a lot of crying.
Following a report on international observations of the day, which I remember included the unrolling of the giant likeness of a condom, by AIDS activists, down the Eiffel Tower then-local CBC news anchor Bill Cameron introduced the report which included me. Despite my uneasiness with my raw emotions I was quite satisfied with the report.
What remains with me to this day, particularly nice since I came to know Bill only vicariously through his sister as he was dying of cancer, was his reaction coming back on camera from the video item. A fist cupping his chin, he leaned back in his chair, and paused, the silence saying (to me anyway), “Wow”. Since it was me projecting that onto him I took it as a good “Wow”.
Understandably wound up, I would say, I watched the rest of the newscast and then decided to change direction a little by putting put a few Christmas decorations. Slapping a holiday music cassette into the stereo until I was satisfied with the dressing up of the plants in my living room window, I decided to sit down and begin writing a year-end letter to friends and family. Most of all, though, it was a letter for Jim because I wasn’t sure he would be here the next year.
That letter, and those from the next several years, eventually became the first entries to this blog. It began:
It’s dusk. My indoor garden is laced with tiny Christmas lights, some climbing and some right on the floor. Candles are lit here and there, mostly there, while I peck away at this tabletop word processor. Tiger and Blue are snuggling in my mother’s doll-crib, one of The Bay’s loose-eyed 1993 “Charity Bears” is holding a picture of yours truly at the AIDS Memorial, from the Globe & Mail’s front page last summer, and Barbra Streisand’s Christmas album – which I like to call “Babs Does Bethlehem” – is playing in the background. Life is good in this moment.
Each writer in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.
The best thing that I can say about Kim at this point is that she blessed the world with her son Alex. He is a beautiful, talented and loving little boy of 11. All those that know him are enriched. All those that know him also know that he will be forever dealing with the legacy of his mother’s illnesses.
Thankfully he was born HIV negative. Kim was HIV+. I do give her credit for complying with the medical advice to receive in vitro treatment for Alex and to have him by cesarean section. She did however use drugs when she was pregnant with him and it is likely he was conceived while Kim was using crack. Alex must pay for that indulgence with a learning disability and possibly many other effects of his mother’s drug abuse as of yet undiagnosed. Are the drug addiction and being HIV + related? Absolutely! The latter was contracted through sharing needles or unsafe sex while high.
And now she is gone. An overdose. It is undetermined if it was intentional or accidental. Regardless, the rest of us are here trying desperately to support Alex, to help him grow and to save him from his mother’s legacy.
I am angry and I write through a veil of tears for all concerned.
Each author in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.
AIDS didn’t become important to me until somebody I knew died.
I imagine that is also the case for most people in the U.S.
Even now, it is easy for most of us to put our thoughts about HIV/AIDS behind us because of the way the disease was introduced into our society. We were told in the mid-1980s that it was an infectious disease killing gay white men, Haitians and intravenous drug users. I didn’t know anyone who fit those categories. I had read in school about epidemics throughout history and I never expected to experience this sort of pandemic in my lifetime in such a personal way.
I was a rookie reporter when I heard about AIDS for the first time. The TV broadcaster described it as a mysterious disease that was taking the lives of mostly white gay men in New York and San Francisco. The news report sparked my curiosity. But I didn’t think much else about how AIDS would affect me personally until 1986, when one of my colleagues at the Macon Telegraph in Georgia died suddenly.
I was just getting to know this quiet, smart and young black man who worked as a copy editor. Now, he was dead. Though I had volunteered, I hated writing his obituary. I knew so little about this guy’s personal life. The word AIDS never appeared in his news obituary. As far as the public was concerned, my colleague died of a sudden illness, a popular buzz phrase coined when young people, mostly men, died of complications related to AIDS or the human immunodeficiency virus that causes the disease. The funeral home directors whispered AIDS as the cause of death for very few people.
His death was unsettling. It became apparent to me that this disease would not just strike white gay men in their prime. I realized that AIDS might become a silent killer in Black America.
But there was very little visual evidence of HIV/AIDS affecting this part of the population, despite the statistics made available by the U.S. Centers for Disease Control and Prevention in Atlanta in the mid-1980s. I pushed my concern into the back of my mind.
By 1988 I was trying to advance my career as one of seven journalists selected to go to California to develop my skills at the Summer Program of Minority Journalists — now The Maynard Institute — at the University of California at Berkeley. I was assigned to write about the return of the AIDS Memorial Quilt to the Castro district in San Francisco, at the time the epicenter of the AIDS movement in the U.S. The event was one of the most emotional stories I had written. The quilt had traveled across the U.S. and was displayed at the Capitol in Washington, D.C., before arriving in San Francisco. The mayor of San Francisco and other public officials cried as the thousands of quilt panels were unfolded for miles down a city street.
This disease was real, I thought. I had never seen so many people so emotionally affected by one event. Yet as I looked closer at the quilts being paraded down the street, I noticed that there were very few photographs on display of black faces, particularly of women.
I was touched and felt sympathetic for those affected by AIDS, but I felt safe as a heterosexual black woman. My feelings about my personal safety changed five years later when the CDC announced that heterosexual black women would be the next wave of people infected by the virus in the Northeast U.S. I fit that demographic. I wondered quietly whether I could become one of those statistics. That feeling stayed with me when I left my reporting job at the Asbury Park Press in New Jersey for a new reporting position in Hartford, Conn. I promised myself once I got settled that I would write a story about how the black community was responding to HIV/AIDS in Connecticut, especially since so many people in Hartford were infected. I asked my editors: What were the traditional black institutions, especially the churches, doing to help people cope with the disease?
I set out to do that story in 1994. Though in my early 30s, I was naive. My knowledge of the streets and issues associated with poverty were limited. I didn’t grow up in the slums. I had never interviewed sex workers or intravenous drug users, people health officials said were also spreading the virus. I admit now that those people scared me because I had seen too many movies.
As the daughter of African Methodist Episcopal ministers, I took the safe approach to the story and called church leaders in cities that dotted Connecticut. To my dismay, they did not return my calls. Since I was working on the special assignment, I didn’t have time to wait by the telephone. I ventured out into community-based organizations such as the Urban League and health departments in Hartford, New Britain, New Haven and Bridgeport to talk to the professionals who were serving the “at risk” populations.
Within a month, I was walking the streets or getting connected with outreach workers like Buster Jenkins and Mark Little in Hartford. Two church mothers, Gladys Pennington and Elsie Cofield, helped direct my path through New Britain and New Haven. They connected me with black and Latino women who told me their life stories, but were unwilling to allow me to use their full names or to have their faces photographed for a newspaper story. Having the virus was a secret many of them kept from their families; they didn’t want to reveal their HIV status in The Hartford Courant. So many of them and the outreach workers who distributed condoms, clean needles and bleach kits saw my frustration, and they asked me if I had met Linda Jordan, who was quickly becoming an icon in AIDS prevention communities across Connecticut.
I called Linda and she invited me over to her house in West Hartford, a suburb of Hartford. My first interview lasted about five hours. She told me that she was a recovering heroin addict who was volunteering with seven different AIDS organizations in Connecticut. That work earned her the Mary Fisher Foundation’s National Outstanding Caregiver Award in 1993. Linda showed me the posters that she and her daughters and grandson had taken for a public awareness campaign for the Connecticut Department of Revenue and the Concerned Citizens for Humanity.
Her family is believed to be one of the first African-American families in the U.S. to put a human face on the disease. The posters are still circulating the globe. Linda was so open about her story that it struck me as odd that this woman who had experienced a lifetime of tragedies wasn’t keeping it a secret. She didn’t believe in having skeletons. She shared her HIV status and the status of her oldest daughter, Tanya, and Linda’s husband Alvin, who was in prison at the time. I wasn’t prepared to hear all of what she had to share in 1994.
My limited street smarts were obvious. It showed in my facial expressions; Linda laughed about it when we talked years later. Yet she trusted that I could learn enough to write her story. At the time, I was too far removed from the life she had led to understand her resilience. She had been molested, abused and raped before she was 10 years old. She had used heroin by the time she was 18, had married and divorced her childhood sweetheart twice. She stayed with him and bore his children, even though he was incarcerated for most of their relationship. She allowed me to hang around, attend family functions and speaking engagements so that I could learn more.
My story for the Courant, “Fighting AIDS with Resilience: Sense of Unity Blacks Confront Epidemic,’’ captured only small fragments of Linda Jordan’s life story. I felt unfulfilled after it was published in October 1994 and I went back to my regular beat covering a predominantly white upper middle-class community outside of Hartford.
About six months after the story was published, I was in Puerto Rico for vacation. The ocean has always been a place for clarity for me. I remember sitting on a rock on a beach one day. I felt like I had made the wrong decision by moving to Connecticut. I asked God why he had sent me here. What was I supposed to do in Hartford? I left there thinking that once I returned to Hartford, I had to continue my work reporting about Linda Jordan.
I owed her much more as a journalist.
I want to write your book, I told her over the telephone.
When do we start? she responded.
For the next five years, I went to Linda’s house on Maplewood Avenue in West Hartford regularly before I went to work at The Courant. I’m not a morning person, so she made sure that I had coffee and she drank tea. I also brought her my copy of the daily newspaper, and was struck that she was always most interested in the obituary page. She recounted the people that she knew had died of AIDS, had overdosed on heroin or died of other premature deaths because of their lifestyles.
My concern back in the early 1980s that black American women would have to wake up and respond to this disease became clear and present. Like in the early days, very few if any of the obituaries cited the true causes of death when someone died of AIDS. So many people were dying in secret and ashamed. But here I was sitting at Linda Jordan’s kitchen table amazed that she didn’t look sick. She was very much alive. She was not afraid to reveal her HIV status and the diagnosis of her husband and her oldest daughter. She strongly believed if those in the HIV/AIDS community stopped hiding their status, more people would accept that the disease was claiming so many others and leaving their families to cope in secret. She told her story to anyone who would listen, hoping and praying that it would be the catalyst for other women who had gone down her crooked path to change their lifestyles.
“Crooked Road Straight: The Awakening of AIDS Activist Linda Jordan” was written so that people of all races, ages, class and generations could reflect on their lives, their past sins and troubles and come to grips with things that hurt them. Linda had to forgive a lot of people because she knew that God had forgiven her. Hers is a story about choosing life despite the odds.
There are a lot of lessons to be learned from Linda’s story. She accepted the roots of her pain that led to her addictions. Once she accepted her faults, she learned to live.
This book is a dream come true for both of us.
Over time, my assignment at The Courant changed. In 1998, I started writing about crime, courts and social trends in Hartford, one of the poorest cities in the nation. My time in Hartford was not wasted as I became able to write Linda’s story with authority. I was here to see the housing projects where Linda grew up before the federal government tore them down. I witnessed the impact of the AIDS epidemic among the intravenous drug community in this city and others. I saw how welfare reform changed the life of a third-generation welfare recipient who moved into the world of work not just as an AIDS outreach worker, but as a factory worker once the monthly stipends she received for most of her life dried up.
Linda’s story is about living with AIDS. Her spiritual development and belief in God once she forced her way into drug treatment taught her that she could live without the medications that so many people depend upon today. Her unfilled wish was that all religious leaders, especially those in the black church, would stand and help those with the virus who were lost and forgotten. She believed that God saved her from killing herself and AIDS was just something she had to live with. She used her life story to show others that change is possible.
This story affirmed my reasons for becoming a journalist 23 years ago. I chose this profession to tell stories about the people in our society who are largely ignored by the general public. Fortunately, my mission has placed me in unfamiliar situations and enabled me to grow up and reach inside myself to find a common ground with most of the people I’ve interviewed.