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:
The latest ambitious awareness campaign by the AIDS Committee of Toronto (ACT), #HIVnow, “asks big questions, puts forward honest answers and issues clear calls to action”.
The “Times have changed” theme comes to mind as I watch the slow demolition of 40 Wellesley Street East, a medical offices building where I learned of my HIV status in 1989 and received medical care there for several years. Hundreds – thousands even – of HIV/AIDS patients were seen in these offices at the height of the crisis in the early 1990s.
If those demolished walls could talk…
I am surrounded by boxes, both packed and empty. This week I am changing units within my housing co-op, moving house for the first time since 1992.
When I re-located to this building 23 years ago I thought, with good reason, that my death was imminent; that I would be here a short time before being discreetly carried out, feet-first, in a black bag – as had been the case for several other friends with AIDS before and since.
Diane Frankling Co-operative Homes, formerly Bleecker Street Co-op, has historically given priority for its rent-geared-to-income units to people living with HIV/AIDS, persons with mental illness (I am, therefore, dually qualified) and women escaping abusive relationships.
Just one floor up and across the hall, dominant morning sun will be replaced by the afternoon’s; plants will need to be re-positioned accordingly. Rather than a view of Cabbagetown roof-tops I will look on to another apartment building and, to my left, a partial but exciting view of Toronto’s impressive skyline.
While I have purged a lot of stuff, and packed quite a bit more, the move just one floor up has me in a sense of suspended animation. Clothes remain on hangers because, well, they can be carried upstairs just like that. It’s the same with my plants.
What I can only pack figuratively are 23 years of memories from here – the early house parties, the cats which I have loved (Sujata is only beginning to suspect we’re up to something), the recovery from my 2003 crash (John Kerry, I so relate to your broken femur!), and the guests and uninvited who have plopped down on the dump-bound sofa.
The weight of these years is affecting me emotionally, positively and poignantly, but it is a marker of the new era of HIV/AIDS that I am leaving Unit 503 walking upright.
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.
“How long have you been wasting?” the chiropodist asked me a couple of weeks ago as she updated a history on me.
The starkness of the verb, however accurate, stayed with me.
I’ve always been thin, I said, but my weight has been falling a bit since last fall.
Fast forward to preparations for a bone density test in Women’s College Hospital’s shiny new facilities today.
I stepped up onto an equally shiny, new, digital scale.
Weight: 122 lbs.(just over 55 kg)
On my worst weight dives I’ve never been below 130. Even at my usual 145 I’m off the BMI chart.
I’m accepting fattening dinner invitations.
“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
With only the most scant help from Google I have been trying to remember more about my personal, professional meeting with Liberace (“Please, call me Lee.”)
It was some time in the mid-1980s, while I was working at a St. Catharines, Ontario radio station, when the subject of last night’s premiere of Behind the Candelabra was making one of his periodic appearances at Melody Fair Theater on Niagara Falls Boulevard in Tonawanda, New York – a suburb of Buffalo about a forty-five minute drive from St. Catharines.
My first impressions of Melody Fair were that it had seen better days (and it has since closed, demolished in 2010). The same could be said for Liberace who, after all, was some eight years older than my father who would have seemed “old” to anyone else in their twenties!
The meeting was what I have since learned was a very routine set-up between journalists, celebrity-chasers, and their self-important subjects. My allotted time of ten minutes or so was no more, on less than anyone else in line claiming “exclusive” access from their particular micro-market’s point-of-view.
I had come out relatively recently and took it upon myself to use my time with a slightly dressed down version of himself to tease out Woodward and Bernstein-worthy details of his private life.
What did he like to doon his days off, infrequent though they may have been?
Spend time at one of his several homes. He liked to cook for his “friends” (none of the bawdy details I would have liked to hear, of course, and portrayed in Beyond the Candelabra and Scott Thorson’s palimony-inspired book.
That’s all I remember about our conversation – riveting I know – having been derailed in my aim of making news out of what was inevitably to be a fluffy entertainment piece.
I grew up feeling a lot of antipathy towards the flamboyant, yet conflicted (a self-professed Roman Catholic) and ultimately talented pianist. This was no role model I would ever want to emulate, should I ever own my own homosexuality.
His age, I suppose, would also have been a factor in his denial of the obvious.
It was, however, his denial of what ultimately killed him that left me feeling quite angry – with him and his church. He never acknowledged dying of AIDS, swearing everyone to secrecy, which of course illustrated the stigma of the times (worse even than now) in his over-the-top way.
I couldn’t separate my feelings for him as I watched last evening, which is not to say that I couldn’t also relate to the inner struggles while recalling my annoyances with him.
Michael Douglas had a hell of a job to do which I found to be well done and credible. Matt Damon also proved himself to be a convincing actor in a gay role and a sympathetic character. In a supporting role I thought Rob Lowe stole the show.
I will watch it again, while it’s still in the HBO lineup, and while I don’t necessarily expect my feelings for Liberace to change I know I am capable of seeing him – jewel-encrusted warts and all.
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.
A prompt this week to write about something in a health-care context brought out this story which, despite having been told over and over in my head, had heretofore not made it down in writing.
It wasn’t quite 5:30 am and Janice was already waiting for me on the main floor of Union Station. Her husband Randy, who drove her in from Ancaster, needed to get to work but first back to his parents who had been drafted to baby-sit the two kids.
Janice and I hugged, exchanging exasperated greetings, then continued the conversation from late the previous night.
Our brother Craig had been walking to his home in Montréal’s Le Plateau neighbourhood, arms weighed down with food and other birthday party necessities for Claude, his partner of sixteen years who turned 54 that 24th of April 2007.
As Craig approached their three-storey stone walk-up, he tripped and fell, almost instantly smashing his head on the sidewalk. The owner of a small store directly across the narrow street saw Craig go down and rushed to his assistance. He was clearly unconscious, his head bleeding profusely. She called 9-1-1 and eventually Craig was taken to the city’s well-known Neurological Institute (think “I smell toast, Dr. Penfield!”)
Claude was contacted at St. Luc Hospital, where he worked, and he rushed to the Neuro calling my sister Lynn in New Brunswick on the way. Janice phoned me after hearing the grim news from Lynn. They decided that Janice and I should go and stay with Mom at this critical time; that having seen Craig and Claude just a couple of weeks earlier over Easter she would be upset enough without rushing to Montréal. So Janice and I took the train to Kingston and then a taxi the eighty kilometres or so to Perth. Janice phoned Mom from Kingston, gently breaking the news and giving Mom a bit of time to absorb some of the shock before we got there.
I couldn’t believe it. Craig and I had both survived HIV/AIDS since the early 1980s, watching many loved ones die. But not like this!
Over the next few days Lynn kept us up-to-date on Craig’s condition which was critical at best. When our uncle told us he had to be in Montréal over the weekend, and offered to take any of us along, Janice and I decided to go.
The drive up the steep hill of University Street from the Ville-Marie Expressway seemed to take an eternity, not that traffic was especially bad but because of the pits of anticipation in our stomachs.
George dropped us off at the front door and Janice and I found our way to the Reception area of the Critical Care Unit. The hospital screamed, “Demolish me!” with its cracked interior walls and historic odours. Lynn stepped out of Craig’s room.
“I just want to prepare you as best I can for how you’re going to see Craig,” she said. “Whatever descriptions I’ve been able to give you over the phone this week really don’t count for much in person.”
She was right and, one at a time, Janice and I found out.
I went in first, Claude walking over in tears with a big hug and kisses on both cheeks. He made small talk in his broken English until I asked a few questions.
One of the first things I noticed about Craig was how the swelling of his brain had inflated his face to a preposterous size. His eyes were wide open and couldn’t shut even if he wanted them to. There was a large flap of gauze on one side of his skull, taped at the top but left unattached at the bottom to let the emergency surgery to relieve swelling of the brain do its work.
The most telling piece of equipment in the room, which was expanding his chest and belly the way his brain swelled his face, was the respirator and its associated oxygen pump, which rhythmically forced air in and out of Craig’s chest because he could, and ultimately would, not breathe on his own.
The artificial breathing made up in noise what the strained but quiet breathing of Claude and I did not.
Claude stood closer to Craig and shouted the news that Janice and I had arrived, at which point he gave the “thumbs up” sign. I eventually saw that to be his only method of communicating, and I now wonder if it wasn’t just some involuntary impulse of the brain.
Claude and Lynn reviewed what doctors had told them. Craig was in no pain, and no pain relief was necessary. They could tell this by the fact that he wasn’t restless at all. It almost went without saying that pain sensors in his brain were damaged, if not destroyed. Even in their earliest assessments, the doctors had told Claude and Lynn that if Craig survived he would not be the same person.
Janice and I stayed for an hour or so and then we all walked back to Claude’s (and Craig’s) place on de Grand-Pré. It was a cathartic walk, one which we would repeat, through the edge of the McGill campus, around Molson Stadium, and up Park Avenue, cutting across Fletcher’s Field to avenue Mont-Royal and Boulevard St-Joseph.
When Janice and I again visited Craig the next day before our ride back to Perth, I had a very tearful intuition, if not realization, that this would be the last time I saw Craig.
One attempt to see if he could breathe on his own had already failed. Staff hoped to try, or at least Lynn and Claude were certainly going to encourage another try, in the next few days. We were all in agreement, as much as feelings can be, to accept the results.
Ultimately the attempt failed and, while Lynn and Claude were out of the room having lunch, Craig died on May 9, 2007 – six days shy of his fifty-second birthday which that year also happened to fall on Mother’s Day.
That unimaginable Sunday was spent travelling to Montreal with Mom for the funeral service the following day. Then on Tuesday it was back in to two cars for the drive to Perth where a sunset burial was held at Scotch Line Cemetery next to the plot owned by Mom and Dad.
Later that spring, Claude bought a headstone with Craig’s birth and death dates as well as Claude’s birth date. The inscription described Claude as Craig’s “compagnon de vie”, the first openly gay – and surely among the first bilingual – grave-markers in the town’s three or four cemeteries.
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!
Submitted to Aless.ca today
I find the anticipation, whatever the outcome, of World AIDS Day quietly overwhelming.
“Not much,” I replied to a friend asking what plans I had last night. I might as well have had dental freezing in my brain, such was the unacknowledged numbness.
When I think of World AIDS Day I think of, as a blur, the forty or, I’m sure, more friends and fellow travelers who died of AIDS long before, and some since, the chance to survive with complex medications existed.
It is such a blur that I do not wish to single any one out.
Nearly six years ago, a blogger friend in California reminded me of something I do not mention much about my family, and then it’s usually “someone else in whose footsteps I was following”. I always respected my brother’s own, non-blog, ways of carrying himself in public.
Let’s just say there was this guy I write about more than anyone else (me) with an older brother who, like me, is gay and has been living with HIV/AIDS since the 1980s. Both are openly loved and accepted by family, close and extended, and many friends.
When I “came out” to my parents in 1981 it was not a complete surprise when they revealed that my older brother had also come out to them a few years earlier. One of the reasons I had not been in on that, however, was the fact that I – at that time – was test-driving ways of suppressing my homosexuality, to the point where I joined a right-of-Baptist, left-of-Pentecostal church for awhile. The test-drive, as evidenced in my subsequent writings, ended in a high-speed crash into a spiritual wall. My internal emotional injuries were very serious.
After I came out to our parents my brother wrote me a letter (in those days before email and long before Facebook), another letter I wish I had kept. In addition to lending support and understanding, I recall the note offering some wise advice about the difficulties inherent in living out one’s sexual orientation in a gay ‘community’ which, at times, can seem like a very cruel world. (Rufus Wainwright, a favourite, profoundly captures this in his song “Poses”.)
To say that Craig and I became closer, after I had withdrawn from my ‘doth-protest-too-much’ stance against homosexuality, would be an understatement. However, to this day, I regret any actions that separated us during those times. The relationship thankfully evolved to being much more comfortable over the years.
I learned in confidence, in the mid 1980s, that Craig had been infected with HIV – news which Craig later shared with other family members.
With all of that background, I vividly recall having a picnic lunch, a few years later, with my Mom and Dad during a brief vacation I had taken deliberately to disclose my HIV-positive status to them.
This being 1990, my medicine bag only had AZT in it and yet it seemed like the heaviest thing in my back-pack that day. Knowing that I would need to take that capsule before the picnic party had returned to Mom and Dad’s home I now only recall these key moments of the conversation.
Kenn: “When Craig told you he was HIV-positive the best information he had, at that time, was that I was negative.”
Mom (sighing deeply): “Oh, don’t tell me…”
That was in the summer of 1990, a little more than a year after routine blood-work had first shown tell-all “counts” in reverse, certainly abnormal, proportions. (Those blood samples, from the spring of 1989, were later tested specifically for HIV and were found to be positive.)
That picnic seems like a lifetime ago. My parents and siblings gradually integrated this overwhelming information and were very accepting as I shared my story publicly, even via television and newspaper media. (One magazine article, originally meant as a simple tribute to my parents’ longstanding involvement in their community, included the traumatic events when my mother barely survived an attack of necrotising fasciitis – ‘flesh-eating disease’ – and how my father suffered a major heart attack as Mom was in the midst of her recuperation at home following more than two months of critical care hospitalization.)
In layer-upon-layer of irony Craig fell in April of 2007 and, tragically, hit his head, suffering irreversible brain damage. He died a few weeks later just days before what would have been his fifty-second birthday. Mourners shook our heads as we thought about Craig having survived twenty or more years of HIV/AIDS, quintuple bypass surgery just a year before, only to have a freak fall end his life so horribly.
I still carry Craig with me and, while we shared an AIDS diagnosis as well as our sexual orientation, he was definitely his own man and I miss him as much today as any other.
Last Sunday afternoon, Thanksgiving weekend, I was out for a walk in Perth taking some of the photographs I collected over my five days there. I was also slipping away from the family in order to listen to a radio program which included brief comments I had made by phone as invited by the producers.
CBC Radio’s Tapestry was airing the second part of a series called Coping and at about 15:49 into the program I am heard introducing myself, then speaking of how my bipolar II diagnosis was an “A ha!” moment for me in the context of living as a survivor of childhood trauma, addiction recovery, and living with HIV/AIDS since 1989.
I also said that the bipolar II diagnosis has allowed me “to have a little more compassion for myself” and, in turn, with others with mental health issues with whom I can more easily and comfortably empathize and suppress my self-criticism.
“I live on,” I said, “and live on in curiosity”.
The reason I felt I had to head off to my favourite café, rather than invite my family to listen to the program with me, is that they are not all up-to-speed on my bipolar II diagnosis nor, in some cases, the sexual abuse. In the case of my mother, I have withheld these because I have judged that she has had more than enough to deal with. Whether it is worth the secrecy may be another matter entirely.
Fast forward to my weekly group therapy yesterday, which I had missed due to travel last week and being ill the week before. It followed on the heels of my check-in with my psychiatrist in the same hospital during which I confessed that, due to financial problems over the past little while, I had been unable to pay my quarterly prescription co-pay of about $100 and had, therefore tapered myself off my medications – re-starting at the end of September after more than a month when my finances were back in limited order.
He urged me to be in touch with him should I ever run into trouble again (I had even bluffed my way through an appointment with him during the crisis) and to keep in mind that relapses could be very serious.
Off to group therapy I went where I broke down crying as I reviewed the past couple of months and spoke of the shame I felt in being short of money. It was of my own doing, I judge, because I had sought sexual release time and time again with the click of my TV remote at $9.99 plus tax per viewing. (More shame.) The financing – no worries until the bill arrives – was as seductive as any of the pay-per-view characters. There were equal amounts of shame in having dug myself into a financial hole, putting my health at serious risk, and the mental condition which I dared not speak of with my loved ones – despite all of their support for me in every other area of my life which many other families might not be able to tolerate.
I did manage to tell my family, as we packed down a splendid turkey dinner, that I had lost ten pounds in the past little while. What went left unsaid was how much less I had been eating and why.
What could I have done differently?
Certainly I could have flagged the financial problem with not only my psychiatrist but also my doctor and pharmacist. Heaven and earth might have been moved to make sure I had my meds. Instead I chose, in shame, to deal with it myself – the same faulty self-reliance that got me through the rough years as a kid.
I could have told friends what was going on. It would not have been too tough to borrow a hundred bucks for my meds.
No doubt I could spend time, honestly, openly and, more constructively, out of isolation with friends.
I have a small collection of turtle ornaments on a book-case. I relate to them, seeing myself personifying some of their characteristics – slow, steady and self-deprecating to a fault, able to withdraw, when threatened, to my own delusional safety.
Someone once told me that five bucks in your pocket often makes the difference between a good and a bad day. I would just add that it’s important to discern what’s best to do with it.
This is a good day. I refilled prescriptions, overdue by a month, the self-deprivation of which I know from experience may have already done me harm. Going without them, both mood and HIV-related, has been a strain, one which I have not shared. I find fault in myself without even trying.
My auto-correct will rightly call this “awkward phrasing”:
Had I not needed to pay off a pay-per-view bill (self-centered shame involved) that was through the roof, at least in part because of being without my bipolar II meds (self-centered stigma even mentioning that), I would have felt better. It is probably for this same reason, and a decrease in food intake (fitting the stereotype of those who make choices between medicine, food and, in my case, $9.99 pay-per-view movies), that I lost about twelve pounds since I was last weighed two months ago – still 6′ 3″” (1.9m) tall, of course, but now just 130 lbs. (58 kg) for a BMI of 16.2 (underweight being anything below 18.5). How my blood-work has been affected has yet to be revealed.
The first thing I did this morning, pay-day, was go out for a Subway breakfast sandwich (far too salty!) before picking up my prescriptions. (Nothing for breakfast was available at home.)
It’s a chicken-or-egg riddle – being without money which caused me to withdraw treatment of my mental and physical health or a lack of untreated mental health which caused me to be care-free about money. ‘Twas ever thus, except I have had enough repeat experience to know that one begets the other.
I have begun to track my every expense as a first step in budgeting.
Writing this has been a detached, left-brain exercise. Maybe if I read it enough I’ll begin to feel it.