As of late, I’ve ‘got nothing’. Facebook has ruined my blogging.
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.
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.
Those of you who have followed me, be it through my writing, my tweets, or home from the convenience store will have picked up on the fact that I have a fair amount on my plate.
I’m a very slow eater.
I recently joined a support group for long-term survivors of HIV/AIDS – in my case it’s been no less than 23 years. Even more recently I quit the group when I convinced myself that there was something to the quizzical looks I was getting from existing supportive friends, surprised that I might have anything I couldn’t discuss with them.
Particularly those who were also HIV-positive; also long-term survivors.
It felt good to formally end my relationship, short though it was, with the “support group” and to tell them why.
I don’t want to compartmentalize my life any more than I’m ever convinced I have to – if at all.
I want to safely, sanely integrate the many facets of my life – which too often feel like they’re in individual silos – into something that I can present to anyone I choose.
To recap what loyal readers already know:
I am a survivor of childhood trauma at the hands of an elementary school head teacher/principal.
I was bullied – by him and by peers both in early grades and in high school. I survived.
In my adolescence I was sexually abused by strangers, i.e. more than once, in a part of my home-town that I would only, as an adult, recognize as a “cruising area” for men seeking casual sex with other men (or, since I was there, with boys).
I buried that sexual trauma until I described the first incident in the third person at a HIV/AIDS-related workshop in 1990, some eighteen years after it started.
Then I buried it again, for the most part, but it kept reappearing particularly in the context of dealing with alcohol and other addiction.
I sought support for the addiction but only occasionally mentioned the trauma(s), believing that help was not available as one-stop shopping. (It was also too much to deal with in the context of my HIV progression to AIDS-related illness, the support and care of friends who have long since succumbed, and my inability to stay sober for more than five to seven years at a time maximum.)
When my brother Craig died tragically in 2007, and I was drinking at the time even if not in the presence – not even the same town – of my grieving family I came to a critical point of despair. Thoughts of suicide both tormented and comforted me.
Earlier that spring I had considered running for political office. Me! On long-term disability insurance! I had also wasted the bulk of an insurance settlement from a 2003 accident as if I wasn’t going to live long enough to enjoy it.
I was assessed and diagnosed with/as (I’m not sure which) bipolar II, one step on the spectrum from the more notorious bipolar disorder or manic-depressive illness, as it used to be called.
Believe it or not it was a relief to get a better understanding of what had begun, to me, simply as an absence of depression – for which I had been treated since around the time I tested HIV-positive – and to make sense of what had clearly become episodes of hypomania and depression.
The cautionary experiences of my peers, plus the general stigma still associated with mental illness, have made it difficult to articulate all that I have been discovering about myself as I review the years but one thing is for sure: I can no longer just be a gay, HIV-positive and (to some a recovering addict) friend or relative to some while hiding the largely successful, but ongoing, treatment of my psychiatric illness. The silos drive me crazy – and anyone with a passing acquaintance of farming will know that silos can spontaneously combust!
I do not know to whom any, or all, of this is news. Please let me know. Maybe this is just a rant I occasionally need to let rip. My emotions are not helped by a temporary physical malady today but, then again, I know that’s what it takes to move me sometimes!
The bottom line is that I want to be able to describe the whole picture, even if I mix oil with pastels, chalk with water. The silos aren’t all filled at the same time, usually, but that’s just the point. I don’t want silos any more. Could you at least help me with a better analogy? I would be so grateful.
It’s certainly not too early to think about Mental Illness Awareness Week
When I read the Ottawa Citizen article (linked above) I immediately thought, “Mom will have read that yesterday,” and what an opening it would give me to discuss my own mental health history with her.
Not long after sobering up five+ years ago, I was diagnosed with bipolar II and, although it might seem strange, the news came as a relief to me. It helped to explain behaviour, over and above (and below) drunkenness and depression, which had dogged me most of my adult life. The eventual absence – thanks to treatment – of depression, which became hypomania, went undiagnosed for so long because I quite enjoyed said absence of depression, despite the danger, stupidity and recklessness which accompanied it.
Of course, as my 1,002 posts here can illustrate – at least in part – there’s been more going on in my life than depression so, absent or otherwise, there have been many other factors contributing to my state of being and my sense of self.
I cannot deny, and quite enjoy reporting, that seeking help – even if it took sinking to “rock bottom” to do so – has me feeling mentally stronger than I have in a long time, the occasional extraneous screw-ups notwithstanding.
For that I am truly thankful.
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!