Sunday, April 5, 2009

How to Treat Me

[Photo: an actual book by OSU professor/poet Andrew Hudgins]

Disagreeing is always more interesting than agreeing.
Dalai Grandma
There is a tension between the agreea-girlness I was taught was appropriate to my kind, and the inquiring attitude I learned in college, which was not actually about disagreeing, but about asking, What do I think? Agreeableness is about being Nice, about fitting into the monkey tree; critical thinking, as it was called, blew open the doors into reality and began letting in some light. It's a wonder they allow it.

Today I am disagreeing with an excerpt published in Tricycle magazine online -
There are absolutely no negative thought patterns that are true. One of the greatest gifts we can give ourselves is to renounce negative patterns of thought.
Arinna Weisman and Jean Smith, The Beginner’s Guide to Insight Meditation
As an excerpt, it may not represent the author's full intent. This isn't about quarreling with them, then, but about springing off that line of thought. Here's where my mindspring goes: no patterns of thought, negative or positive, are "true." Most likely, they get in the way of reality.

When dealing with my thoughts, we are never far from a homely personal situation that has given rise to the issue. Today it can be summarized as, "Oh dialysis, that's nothing."

The issue came up for me and many thousands of Extreme Kidney Patients last week when Larry King had a singer named Natalie Cole on his show to talk about her dialyis experience. This woman's kidneys were ruined by treatment for hepatitis C, which was believed to be the result of street drugs, or more precisely, of sharing needles.

I watched a bit of the interview, and you can too if you go to YouTube. The woman is clearly out of touch with the seriousness of her condition, as the rich and privileged can be, those whose path to the dialysis chair is smoothed by an executive assistant. What's worse, numerous viewers evidenced that their major abode is Lalaland by sending Larry King e-mails offering her a kidney, even as the show was on the air. Cole had the grace to be somewhat astounded by this, as you should be. To give away 50% of your kidney function in order to save the life of an entertainer you don't even know -- this is the act of someone totally out of touch with the life-changing reality of this major surgery. (FYI, transplant centers are wary of what they call "altruistic" giving, and subject such donors to psychological testing first thing.)

We kidney patients on our transplant e-list had our own particular beefs with the whole thing. Mine went to the keenly personal -- I got mad at the "friend" who has felt obliged to tell me several times about some man who worked full-time for thirty years while on dialysis, and loved his life.

God knows, I don't complain to her. I don't bring the subject up. She does, to give herself the opportunity to fix me again. Well, I have lost patience with her need to find redeeming value in my lousy, limiting, frightening and uncomfortable situation. In the often unpleasant facts of old age, sickness, and death. I don't need fixed on this subject. Period.

I know she's just got a species of insanity. I saw it in action in some kidney patients, as they reacted to the stunning fact that strangers were offering Natalie Cole their kidneys while the rest of us sit on a waiting list for years. And years. Waiting for the phone to ring. There are always people who seize any opportunity to affirm how nice and accepting they are; or who just feel compelled for some other reason to put a positive mental spin on every damn thing. So it is that there were kidney patients who are personally going through anguish with the complications and inadequacies of dialysis, who insisted, Some good might come out of this for all of us, and anyway, life isn't fair, so if she can get her hands on a stranger's kidney, more power to her.

Well, I have my own truth. It is embedded in my experiences, for instance, those little cuts created by the relative who told everyone she just kept working and smiling and pausing to throw up when she had cancer. This gave the rest of the family all they needed to decide that my cancer was nothing serious, and to ignore me. Falsifying the reality was not harmless, then.

I don't ask much. You have your reality, let me have mine. My strategy in life is not to apply either positive or negative thought patterns to it. That's my salvation in life, in fact, to just have my unique individual experience. To be acknowledged as a person. Not to be swatted out of the way with some platitude about how there's something good to be said for throwing up.

Well, I still don't know how to reply to my umm, acquaintance, with her insane need to minimize the gravity of my situation. Not for the first time, I have thoughts about writing a book titled How to Treat Me (and Other People). But don't you just know, the people you wish would read a book like that, those people never will.

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