Reintegration into non-leukemic society was always going to be, I knew...interesting. But now that it is happening in even the smallest tidbits, I am learning just how interesting. And tiring. And glorious. And tiring.
And, of course, everything's fleeting:
I'm back on the pred.
I got a nice needle-full of Vincristine yesterday, with a steroid chaser.
I leave in about twenty minutes to get a full-body eyeballing by a dermatologist to see what the "Drano In My Veins 2010!" tour has done to my skin. Good times.
I have the first 6MP--a demon of my own creation that tickles the fear nerves in my sleep and looms like a boil on the bridge of my nose whenever I am awake--to take Monday.
Wheee!
But first, an historical aside.
I'm a union guy. Have been for years, trained and informed by some of the best representatives of worker's rights and responsibilities in New York, one of the most organized cities in the country.
For some reason--I think the Scottish and Viking non-emotive stance on things--I have been able to bring a dispassionate passion (have fun with that one) to my efforts on behalf of working performers, specifically through working with the American Federation of Television and Radio Artists (AFTRA), an organization I am lucky enough to serve as president of the NY local. I have about 18,000 members assuming I will work for their best interests, and assuming I am the man for the job...please don't tell them anything bad if you know me. It's going very well so far--about six years.
Unions did not autogenerate from nothing: they came about because of a need for workers to be protected from employers whose zeal for profit and/or power won out over their desire to be fair humans. Not all employers have this problem, but there's a pretty close relationship between extreme profitability and extreme total-shithead-to-one's-fellow-humans-ness. That's a math term.
Unions are under attack now in this country like they have not been for many years. State governments who will never admit that their states are bankrupt partially because they are incredibly selfish and bad at their jobs have found that, behind an astonishingly under-informed--yet often meaningfully dedicated--Tea Party momentum, they can point to any number of 'factors' that seem like maybe they are dangerous to 'hard-working, red-blooded Americans,' which in the Tea Party case means more often than not a bunch of aging white people who have never had union protections, who are too old for the the new work force, and who are silently terrified of the generations of tolerant, ethnically diverse, and egalitarian millions who have followed behind them and who think that, what the hell, let's try and be good to everyone who's not a total schmuck, huh?
There's more to it than that, obviously, and a closer adherence to the Constitution is often a good way to rein in Government dipshititude, but unfortunately one of the core Tea Party tenets runs along the lines of "Let's get back to the good old days," which, if you ask just about any modern and informed scholar of American political history and demographics, carries an unspoken "when I was a kid we all looked alike, nobody had a funny name, I got a job out of high school that paid OK, and manwich and wonder bread were good enough for me, and if one more goddamn darkie takes my job (a job I would not do anymore because I'm above it) I'm gonna run one over with my truck."
This from a man who loves, I mean LOVES, trucks. And immigrants. Blackfoot and other First Peoples aside, every goddamn one of us has immigrant blood. Every goddamn one.
And there's more to the union side, as well. "First in, Last out" teacher's union-defended retirement/severance rules are an abomination, a system of cronyism as capable of ruining this country as bigotry and class-ism. While the teacher's can't just roll over and accept the government plan for new retirement/severance regulations because they are knee jerk in the other direction and give WAY too much power to administrators in an educational environment, they're still defending a system closer to Feudalism than anything else.
Regardless, in the vast majority of cases, a group of united workers forming a structure and bargaining collective through which they can protect themselves while promising their skills to help the profitability of their employer in exchange for their respectful and economically viable treatment is a good thing. A good goddamn thing.
And a lot of that, in this country, started today, a hundred years ago.
The Triangle Shirtwaist fire happened one century ago, right around now. One hundred forty six victims burned alive because their bosses didn't like that they took little breaks on the fire escape to escape (that's what the damn thing was called) their sweatshop existence for a few minutes. So the owners locked them in, and when they had a cigarette inside a building full of blouses hanging from the ceiling, inevitably a fire started.
With nowhere to go, locked in a burning hell or hurtling to the ground as the single accessible fire escape twisted and fell under their combined weight, one hundred twenty nine people--mostly women between the ages of sixteen and twenty-three, and mostly Jewish and Italian immigrants working to stay alive and support their families--died.
There is a grave in Brooklyn, a marker to a group of women who were never identified. Charred beyond recognition, killed, buried. Unknown.
Until recently, when their identities were discovered and their names added to the roll call of the dead that will be spoken in a few hours on the edge of Washington Square Park:
Lauletti, Adler, Evans, Rosin, Florin, Cammarata.
You know what that is? That's a list of Americans. Be proud of that. Or fuck off.
OK, back to Leukemia. Yay!
I've been out and about enough the last part of this no-chemo month to now attend auditions where everyone in the room has seen me recently and knows the general outline of where I am. Or has never seen me before, and doesn't give a shit because I look significantly more like I used to then I did a little while ago.
Which reminds of a phrase I memorized as a youth to confuse people at parties and impress them with my lingual skills:
'Man, I feel more like I do right now than I did twenty minutes ago, I'll tell you that much."
I don't know where it comes from, or who said it first, but it's fun to practice until you can just whip it off in a breezy manner and leave people cross-eyed as you walk away.
Anyway, I am now finding myself in rooms where nobody gives a rat's ass who I am or if I am not-dead. You know: the good old days.
When someone asks 'how are you?' I have to learn to not give the answer chock-full of phrases like "finally getting the numbers under control," and "what's an eight-day hopsital stay among friends?" and "...ran out of room on my arms for all the needles, ha ha ha ha ha!"
They wanted me to say "Fine, Dave, and how are you? You gettin' any?" and then go back to my book.
Which reminds me. Since last week I read the actor-with-leukemia book and his follow-up book that was more sort of life essays but still with the inescapable background of imminent premature murder-by-your-own-body.
I'm still gonna leave his name out because I didn't really like the books, so why fart in someone's face unless they ask really nice, right?
I mean, I am glad he didn't die, and I am glad he wrote the books, because I know well enough that I am not the only audience type and that the books hopefully helped and informed and gave succor to many many people.
It just wasn't for me, because his leukemia was twenty years before mine and in the medical word now that means our treatments had only the horrific outlines in common, and the minute specifics or treatment were different enough that I didn't 'learn' very much about my own case.
And because he is a different person who went about preparing for and surviving the treatment in a different way.
I noted to myself that it wasn't until page 183 or so that he described it as a 'war.'
Hmmm.
If I have to paginate my experiences, I think I, and we, were thinking in battle terminology--about strategy and enemies and slaughter and bloodshed and defiance and revolution and violence and perseverance and just fight fight fight goddmammit somewhere around page three. OK, sorry: page two.
I think his books are more for people outside the experience. Which is great. Happily, that makes up a much larger audience--and that's good because even I would not wish this physical debacle on much more than, say, a dozen or so people I can think of. The rest: may they be happy and healthy and buy books.
Buy N's first, but then go buy others to their hearts' content.
There are books 'for' the patient, the sufferer, the one under attack. But I didn't read those either.
I don't think, beyond flat-out information about treatments and experiences and chemical damage or safety, that I needed much reading material about it. N is such a good researcher--and, oddly enough, she loves me--that she managed the info stream in a way I could never have even gotten close to.
And, it turns out, I had chapter and verse on my bald pate and my riddled arms and my roiling guts and the spellbinding terror and sadness in my eyes. And many of those same craters in happiness I see on the battlefields of the faces of the family and friends who have not yet figured out that I'm something of a putz and left me to live alone and cranky. That's book enough for me, I think.
You; I hope you never get this fucking disease, and that you read about it and that you hug your goddamn kids and you curl into your spouse and you squeeze your sister so she'll never go away and say to yourself "Better him than me."
Say it. It's fine. If I can give anyone that; rock on.
I'm not dying for your sins; let's not get stupid here.
But better me than you? Sure. Glad to help. Rock on.
