Chronic vs Catastrophic
Let’s begin with some textbook definitions of “chronic”.
1. Of long duration; continuing: chronic money problems.
2. Lasting for a long period of time or marked by frequent recurrence, as certain diseases: chronic colitis.
3. Subject to a habit or pattern of behavior for a long time: a chronic liar.
[French chronique, from Latin chronicus, from Greek khronikos, of time, from khronos, time.]
chro·nici·ty (kr-ns-t) n.
Synonyms: chronic, confirmed, habitual, inveterate
These adjectives mean having long had a habit or a disease: a chronic complainer; a confirmed alcoholic; a habitual cheat; an inveterate smoker.
Aside from the obvious fact that everything sounds better in French; Chronique, like Boutique, has a special sort of tonal quality one can get behind and almost, I say almost, embrace.
The rest of the pack are depressing, permanent and oppressively weighted when applied to individuals in the midst of dealing with the vagaries that chronic illnesses present and demand.
Chronic money problems
Inveterate (I sort of like this word, actually) smoker
An ignominious list, at best, and one that even the most degenerate among us would not willing choose to be cataloged amongst.
So labeling HIV/AIDS as a Chronic Illness has a front-loaded stigma attached to it, both in the public eye of the casual observer and the actual, more real and hard to imagine, fact-facing reality that the bearer of this moniker must contend with.
Pills, potions, and problems abound, and must be viewed and lived through a variety of lenses, ever changing, akin to a photographer changing out their lenses to optimize the view of the world they wish to capture and portray to the observant world without.
A little background.
I spent my formative (read 20 something years) in the heart of The Castro in the middle 1970’s. To hail Dickens to the front of the class “It was the best of times, it was the worst of times..”. While foreshadowing was not his aim, Mr. Dickens hit on this particular period of history with deadly accuracy. And just as Dickens was holding the hypocrisy of the class struggles in France and England up to public scrutiny, in the social fabric that comprised the city of San Francisco in the mid 70’s it was, indeed, the best of times….the worst was yet to come.
San Francisco was a shiny, glittering jewel that almost everyone who ever visited then automatically wanted to immerse themselves in, often at the expense it would turn out, of their very souls and lives.
There was a years’ long drought in progress then and ignoring the stale odors of the streets you could wallow in the heady scent of night blooming jasmine and soak the psychic scars of growing up gay in a straight world in the seemingly endless California sunshine.
Heaven. That’s what we all thought.
Straight and gay alike, we all just knew that we were the chosen ones. The lottery of life, before there was a lottery for every man, had been spun and won by each and every one of us. Echoes of the Mama’s and Papa’s still undulated up and down the flower strewn hills that we all strolled in idyllic abandon.
And there was sex.
Lots of sex.
For the horny, healthy youth that flooded into the City then, there was a freedom of consciousness and body that translated into intimate encounters of the most casual kind. It was all good. We were allowed. We were entitled. But like Pat Benatar sang, again, almost in prophecy:
“We are young, we are strong…
No one can tell us we’re wrong,
Love is a battlefield.”
And so it was, or came rapidly to be.
As the first among us stumbled then fell, abruptly, into the chasm that would become HIV/AIDS, there was still a sense of entitlement but one that was being snatched from our grasp with an increasing fervor that resembles a Pitt Bull with a Toy Poodle in it’s jaws.
Not only were we struggling for information, understanding, and facts about this onset of illness that was clouding our perpetually sunny skies and dispositions, but we were fighting a social fabric that was beginning to cling to us like the stretch fabric on the hookers at Bush and Sutter streets.
The Brigg’s Initiative.
The controversial campaigns and eventual election of Harvey Milk.
The killings of our gay Supervisor and our straight Mayor.
The world was spinning out around us and we were all in danger of being flung off this planet at supersonic speeds.
By the time the medics of the world actually named this chronic illness, GRID at first, AIDS soon after, so many were already gone and in such tragic and horrifying fashion that we were already physically and emotionally the walking wounded, exhibiting classis PTSD symptoms, many of which are still extant in the people that manage to survive in the present.
Many of us died, all of us were wounded to varying degrees, carrying the virus or not. The scarring is permanent. For a great telling of the times, watch the documentary “We Were Here”, http://wewereherefilm.com/ It says it all, eloquently.
That was and is catastrophic. Now back to chronic.
How do we, the warriors of this the longest war in American and maybe the world’s history (outside of the esoteric and little know Three Hundred Fifty Year War between the Netherlands and Scicily), maintain our dignity and balance?
How do we live with HIV and not die from AIDS?
Personally? A large dose of denial was the major portion of my coping strategy for a long time. Still is. I really am a “glass half full” sort of personality, always have been and I firmly subscribe the Shakti Gawain philosophy that every action in the physical world was once an idea in someone’s mind, hence the power of thought over action in everyday living. I believe that you can will yourself into a whole lot of hot water…..and the reverse. I choose the upwardly mobile thought process most of the time and when I find myself not on track, I stop, readjust, and plow forward once more into the unknown.
Once total denial was no longer a reasonable option; so many were dead and dying all around me even as I fled to Palm Springs in some sort of Pollyanna attempt at feigned ignorance of fact; I faced some hard truths.
I was undoubtedly positive and not in the “it’s going to be a great day” dominion of the word. I had played at the fair too long and too enthusiastically not to have dodged that bullet.
Now there was a test.
I took it. It was conformational and not in the ecclesiastical sort of manner.
It was 1984. I try, now, to recall my emotions at the time. I had precious few as I recollect. It was another day in the life of a latter day gay.
By the numbers, I was presumed to have had it for many years already so with only a cursory glance back at my storied past, it would appear that even in the halcyon days of San Francisco revelry, I was already living in a fool’s paradise. C’est la vie. There’s that French thing again. Or for the more fatalistically Doris-minded among us, Que Sera Sera.
Back then, there were precious few choices to me made in any quadrant. Drugs? AZT, DDI, killers all, in my opinion, particularly at the doses being touted as effective back then.
I demurred. I declined. I lived.
And somewhat to my continued amazement, I thrived in many respects. Aside from having a growing and intimate relationship with needles, labs, physicians and protocols, I continued on, somewhat observant of a time/date expiration stamp on me somewhere but still not quite “feeling” it in any real way.
Even when a routine stomach ailment triggered a bout of tests that would reveal what was then said by the doctor of record to be “stomach cancer, go arrange your life, 6 months”, I refused to buy into the hype. I travelled hundreds of miles, often, to seek out every Eastern protocol that I could and applied every Western, non-toxic medicine that I should.
6 month by 8 month by year by two year by five year intervals. Test after test after test after year after years after year until finally, someone actually said; “You’re not going to die….at least not of what we thought you were and at least not now.”
Well there. Proof. Battle waged and won, on to the next.
Then, somewhere in the 90’s, the drugs arrived. Not in the “Your pot dealer is at the door” type of scenario but in the “We think we might possibly have something lethal that you might possibly tolerate long enough for us to keep studying you and try to find something less horrifying to torture you with” sort of, the drugs arrived.
By now, my expiration date was looking a lot like that forgotten yogurt container in the dark recesses of the fridge so what the hell? I tried them. All.
Some liked to kill me then and there. More precisely there were times, a half hour after taking said unknown, unlabeled, trial handful of pills that I lay, doubled over and sweating with pain, holding my gut and literally crying to die.
They told me this meant I had the actual trial drug and not the placebo! Yeah?!?
I stopped after 2 months.
They killed the trial after 3 months, and who nows how many patients along with it.
So when the next, more humane and more tolerable batches of drugs came along I was surprised at my willingness to pop and swallow yet again! A testament, I’d say, to the innate will to live and the presence in my life of a loving husband and a fantastic life I had never even imagined for myself when young and dumb, no less after the fall of the curtain of AIDS onto the stage of life.
And so the Great Peace Accord.
Peace With Your Medicine Cabinet
The shear amount of medicines it takes to keep this aging body together and semi-functional is stupefying. It’s not “just a pill a day” as the adverts like to promote. There’s side effect pills, pills for things you might get, pills for things you once had but might get again, ad infinitum. If I really sat down and thought about it, and don’t mistake my usual ignorance is bliss avoidance 101 here, I DO think about it, a lot, I’d get really, really down.
And that’s where we don’t want to go.
That’s the place we struggle to get out of and sometimes fear we won’t succeed.
And so, back to Shakti Gawain and her Creative Visualization which has never failed me in over thirty years.
All of this is preamble to the fact that I am turning 60 soon.
Imagine. I almost cannot.
More than half my life I have struggled with this disease, its ravages and its terrible tolls, paid for with the crying of my soul for the friends of my youth.
And yet, there is comfort and optimism still in the daily waking. To wake at all is a miracle.
To have friends and loved ones far flung and fondly engaged is a true miracle of renewal and proof that those lost did not leave me bereft for very long, they quietly and with tender care replaced themselves with others in my life to love me into the next day.
So chronic though life is, for us with disease and disability and for those who simply struggle, every day, to get to the next one, we can keep the catastrophe at bay. We can shove back and tear down the fears and barriers and walls we construct to shield ourselves from the pain and the agony of living and through the rubble, find a way to live and engage, fully connected to those about us.
And if the occasional catastrophe does happen, with a turn of the mental machine, we just might make it more chronic and somehow more bearable and in doing so, stand a little taller and little stronger so that the next sadness and strife that appear, and they will, we’ll know them upfront and not open the door.