September 22, 2010

Gilda's Club: for support, abandon all privacy

So, I go looking for support, finally, from people in situations like mine. But first, an interview with a social worker. This one lied about going to my college. So much for trust from the outset. I mean, if you're going to lie to make a client/patient feel like you have something in common, don't pick something that can be easily fact-checked.

The interview goes on, with a woman I've never met trying to get my entire mental health history along with the cancer story. Confidentiality? They asked me to sign a release form so that anyone of the social workers in the house can chat about me and and anything I've said about anything. I'm thinking, no fucking way. Gilda's not even bound by HIPPA.

HIPPA, the law that's supposed to be about patient privacy. The long and short of that is, if I don't explicitly give a medical professional permission to discuss anything about me with anyone else, what I do discuss is supposed to be confidential. That is, in as much as anyone has any privacy in this century. HIPPA is a piss-poor offering, but it's something.

Purpose of interview? To find where I fit into there support group scheme. Who are the people in my situation? I fit into the "post-treatment" category, meaning I'm done with chemo. The fact that I'm still or again on a medical mystery tour doesn't fit into the Gilda's Club calculus.

And, while I'm signing away rights, will I agree to let the Gilda's folks talk to my shrink? Excuse me? How exactly is this offering me support? More like offering to put my history as the Prozac poster adult on the AP wire, for those who know what it is. Or on an unsecured Web site, for those on the other side of the digital divide.

Turns out that the "wellness" group for which Gilda's clan thinks I'm suited consists of people just diagnosed, people in treatment (i.e., undergoing chemo or radiation or what have you), plus those, like me, who have gotten great grades for going through chemo and having a clear PET scan.

Even if it has been followed by July 4 in the ER, and the first week of September bouncing from ologist to ologist: onco to cardio to radio and back to onco. And more: my white cells are tanking and I need injections to boost them. When that doesn't work, I get a bone marrow biopsy.

A week later, I'm still in pain, and no clear answers are forthcoming.

"Wellness" is one of those words that makes me cringe. Websters defines it as the quality or state of being in good health especially as an actively sought goal." Need I say that no one crosses Gilda's threshold without some interest in better health. Or at least an interest in not feeling alone with cancer.

Problem is, I don't think yoga classes are going to do it. Nor arts & crafts. Nor lectures about my "disease." Or afternoon tea once a month.

I went to Gilda's in the hope that I would find people who could help me feel less frightened that I've been tagged a member of the medical mystery tour. Instead, I found my friend M. Wyrebek's poem title more than apt: Be Properly Scared. May not have been what Gilda's crew was aiming for, but they more than hit that target.

September 18, 2010

Lever-less at the polls

So, New York decided to comply with some half-assed Federal mandate that allegedly helps people vote.


Until our most recent primary, every time I went to the polls, I went behind the curtain, pushed down a lever for each candidate I chose, and before exiting, I pulled back the large red lever that controlled the whole setup, and I heard a satisfying clunk when I was done.

Now, it's back to the future: we have paper ballots that are supposed to be marked by a filled-in circle, like the SATs, circa 1970s. Then, we are supposed to feed the ballot into a scanner, and the scanner monitor allegedly says "thank you for voting," or something to that effect when your ballot registers.

Mine did not register. No entity, human or computer, thanked me for voting. The polling people claim the scanner recognized my ballot when the next ballot went through. Sure, and I have a bridge to sell you.

The paper ballot in itself is off-putting. For one thing, if you have reached the age of my-arm-is-too-short-to-read this, you won't be happy with the print size. For another, voting in the gym has never struck me as a very adult location for the so-called democratic process, but now, it feels even more juvenile.

Feels less and less like my vote matters as I stand there, waiting on line in the gym. It feels more like college class registration, back in the day when we needed to collect punch cards to fill out our schedules.

Makes me think less of cap-D Democracy and more of small-s student council. And electioneering was bad enough in high school. Who knew that would be the highlight of the process?