Drop-kicking HIV/AIDS stigma to the curb


“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…”

-Teresa Sarga

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

 

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Another important day for self-acceptance


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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

 

1 2 3

Engaging more in my mental health care


The mass shootings in Tucson, and the evolving picture of the mentally deranged man being held responsible, continue to both intrigue and inform me.

I eagerly watched three of the Sunday morning news shows: NBC’s “Meet the Press”, ABC’s “This Week” and last, only because I wanted to highlight it, CNN’s “State of the Union” with Candy Crowley.

Dr. Fred Frese was on, a psychologist for 40 years, and the former president of the National Mental Health Consumers’ Association, who was diagnosed with paranoid schizophrenia as a young adult.

He also plays a role in an amazing PBS program “Minds on the Edge”.  (It’s just under an hour long but compelling to watch, I assure you)

Everything I viewed and read today helped me to resolve to make more deliberate efforts to look after my mental illness: things like trying to go to bed at roughly the same time each night, avoiding caffeine in the evening (duh!), and to try harder to keep things in order so that I’ll recognize something may be wrong when they are not.

Check my extensive links under Bipolar/Manic Depression for further reading.

‘The Fear’ Factor


During a lunch meeting with friends today someone spoke of past states of generalized anxiety which professionals often tried, unsuccessfully, to pin down – fear of flying, fear of social situations, “What are you afraid of?”

That didn’t work.

Then, my friend recounted, while sitting with people she didn’t know she blurted out her frustrations with a list of fears that she could not articulate to the satisfaction of people paid to understand these things. 

“Oh,” said the stranger next to her, “that’s the fear” by which he meant, and she identified with, most everyone in the room had probably experienced – however long-term or short-term it was.

The fear.”

As I heard that today, speaking of fear – not as some sort of Jell-O-on-the-wall feeling but as a noun, a state of being – really resonated with me.  Something like “I’ve caught the cold.”

The first psychiatrist I ever visited asked me one day to talk about my fear(s).

He might as well have been speaking in his native eastern European language.

“Oh,” I bull-shitted, “well I really don’t know that I have any fears, but,” I offered, “I have faith that just about everything that can go wrong in my life will go wrong!”

Hmm…I don’t think I could have been more honest.  In fact, as I look back over my life it sometimes seems as though I did an end-run around the fear state (conscious or otherwise) by seeing any number of misfortunes as proof of the theory about my fears – how could I fear anything if I imagined, or even lived out, the worst case scenarios?

Like AIDS.  It was going to kill me, just as surely as it had killed my friends – only I would die sooner.  No fear, so I thought, so long as I was accepting of this.

I have been proven wrong, so far, about this which in addition to f#%king with my mind has graced me with a dose of humility as in, “I don’t know when, or how , even whether…so just keep moving!”

It was ‘the fear’, present with me for as long as I can remember, which hid behind my early masks of self-appointed family comedian – since my horrible feelings at school made “class clown” seem out of the question most of the time.  I was quite the impressionist – Tarzan yells and Granny Clampett’s screams being my specialties.

‘The fear’ was so pervasive when I was with kids my own age (and the threats this represented), and yet I can remember trying to endear myself to a couple of Craig’s high school friends with those imitations.  (I was successful with the girls, not so much with Craig at that moment.)

So, yes, I now can speak of ‘the fear’ – rather than the apparently more difficult “fear”.

 

"The opposite of faith is not doubt, it’s certainty." (Anne Lamott)

“Changing My Mind” could change yours – about mental illness and Margaret Trudeau


HarperCollinsCanada

This is an autobiography, her third, of someone whose slow-motion train wreck – no, a series of fast-moving train wrecks – was seen, at least in part, by political watchers and gossip magazine readers the world over.

We suspect the ending is happy, and we know to expect several of the deeply sad climaxes, but above all else this is a message to those of us who have struggled with mental illness, including substance abuse, to seek the help we need, follow the instructions we are given and have at least one person checking in with us to make sure we are still on the rails.  Plenty of examples are offered of what happens when this is not done.

This book is something else, coming from someone of such noteriety – it is a stigma-buster. Margaret Trudeau joins the ranks of Olympic athletes and many others recently in saying, “I have a mental illness and, with a lot of help, I am better. You can be, too.”

HIV and friends


“HIV and friends” as in HIV and other diagnoses which have been visited upon me and/or HIV and how friends can, and do, help – with apologies to my favourite English teachers for lack of sentence structure.

What physically ails me most are HIV and diabetes type deux. After-effects of the broken femur and wrist are, so far, of lesser impact. Then there’s the bipolar II which, I guess, is both physical and mental inasmuch as the brain is more than the domain of the mental.

Back in the eighties an HIV diagnosis (more likely to be full-blown AIDS) on its own was devastating. I assume, for many, it still is. It was all I could think about for a while and living with, and preparing to die from, this scourge was a major pre-occupation – and I nearly did croak it must be said. Although time and good fortune have proven me more fearful than I needed to be, I still take nothing for granted.

Well then along came my diagnosis of Type-2 diabetes. Shee-it. I thought that only happened to fat people or, at least in my family’s case, people who were much older than me. After years of HIV, being told to eat whatever I wanted (calories, calories, calories), that all had to change.

Yet I can’t blame it all on my choices in eating. What about my choices not to eat? After leaving home I tended not to be a breakfast eater for many years, particularly when I was still ingesting and digesting brewer’s yeast and the like so, therefore, the fast was not broken. A perfect set-up, however incrementally, for my blood sugars to start manipulating things about which I understand little. However I get it now: if fasts aren’t broken, with regular, healthy eating, my kidneys and pancreas are going to be working like a car in third that should be in fourth – or worse, not working at all and failing.

As I anticipated in an earlier blog several months of non-adherence to my medications (except my “head meds”) left me with lab results similar to those which followed the same sort of break I took after Craig died – but at least that break was doctor-supervised. My latest CD-4 was 230 which, as my doctor pointed out, puts me at risk of getting AIDS-related pneumonia (PCP), the scariest of all the most unwanted opportunistic infections. My viral load, after being “undetectable” for a couple of years, is at 73,000 which, while not where I’d like it to be, is something in my experience which adherence to meds will knock down fairly quickly again.

As sombre as these results were the a1c, a diabetes-related test which measures random blood glucose levels over a period of weeks or moths, was 11 – the goal is no more than 7. Because I’m already on Metformin AND insulin (the first and second lines of defence respectively) much of the burden for improvement falls on me. It’s no longer acceptable to ignore diabetes because HIV/AIDS is much more serious. That’s just not the case, particularly when I know, and have experienced, good results with medications for HIV and have known some stability with my blood sugars thanks to a combination of medications and eating choices. It’s not just what I eat, it’s how often, at what times, etc.

The major part of the solution – eating properly – has seized me for the past couple of weeks and I am doing much better, both in terms of eating and the results.

My life’s work now, until it becomes more routine, is to eat well, forgive myself for slip-ups, and take my meds. It has proven to be unhelpful to either beat myself up or to be bullied into submission.

I’d love some suggestions as to what to eat, when preparing meals is not my long suit, because what I have found so far on the internet seems to be about full meal preparation with stuff I’m not used to cooking with. I’m kind of a meal-in-one-pot sort of guy.

Eat right. Meds. Eat right. Meds. It seems simple enough but, when I consider my mental health issues – as my family doctor noted – it’s understandable how I can go off course. Understandable, yes, but not insurmountable.

BringChange2Mind.org


More than a few tears of understanding, and being understood, came to my eyes tonight as I watched NBC Nightly News.

Brian Williams featured a report on an initiative of Glenn Close called Bring Change 2 mind.  Ms. Close and her sister Jessie, who is bipolar, were part of an amazing public service announcement shot at Grand Central Station in New York.

I was diagnosed with bipolar II in late 2006 after being untreated – or should I say treated for depression only – for years.  It was an “Ah-ha!” moment that I will never forget.  Accustomed to what depression felt like, having only been officially diagnosed with that shortly after my positive HIV test in 1989, for years I rationalized manic behaviour as merely the absence of depression.  But it really caught up with me, spending money hand over fist, then spending money I no longer had, seriously considering running for national office despite being on long-term disability due to AIDS and, oh yes, drinking even though I had long ago concluded this was a problem for me that required complete abstinence.

Some well-meaning friends have tried to persuade me to do without psychiatric help.  One in particular has severe biases, based on her own experiences related directly to the treatment she received and the host of medications she was prescribed.  Recalling how she was in those days, I understand her bias.  So as conscious as I am of stigma with people who know little about mental health I also feel it with those who have had some experience in treatment.

However that “Ah-ha!” moment came with my diagnosis.  It was such a relief to know that there was something to explain some of my untreated feelings and behaviours.  I felt freedom.  The combination of a tried-and-true medication I am on, along with “talk therapy”, has worked for me so far.

This first clip explains how the PSA project came about.  (I’ll follow that with the actual public service announcement.)

I’ve always been grateful when celebrities have lent their names in the fight against HIV/AIDS issues. I am now also very thankful that Glenn Close and her sister have put themselves out there in such a personal way to help fight the stigma of mental illness.