Heart events

As near as I can remember, when I was a child the only ways I could say No to what someone else wanted me to do were to whine, to cry, to disappear or disassociate, or to lag back, doing the thing slowly and badly. My little brother on the other hand, who had red hair, learned when he was still in diapers to throw himself down on the floor and scream and kick, and then hold his breath. Amazing. There is no middle way between these two poor ways of gaining some ownership of your life.

Until recently I misunderstood the Buddhist idea of the middle way. I believed it meant carefully steering the boat between two extremes, such as passivity or aggression. But there is another way to understand that. The word that is often translated as "middle" actually means "core." The Core Way is the way of our center, the way of the heart. Sometimes you see the word "heart-mind" used to indicate that it is all of us, the entire thinking, feeling creature we are.

When you try to make a big decision about your future, you are like a person in a black tunnel, reaching out, touching a wall, advancing carefully, feeling overhead, listening to drips of water, tapping a foot to see if you're coming up on a chasm. We don't come equipped with flashlights. I'm afraid I wasn't even that careful about big decisions when I was young, though choosing a major or getting married seemed to be life-and-death. You don't know life-and-death until you can see that the light at the end of that tunnel is death, that death is where you are going, and your decisions may affect the timing and manner of your death.

Several years ago I was shocked to learn that my kidney function had fallen so low while I was busy with other things that it was time for me to contemplate dialysis and transplant. My reaction to the idea of having my body invaded by either of these treatments was very emotional. I couldn't stomach the idea of cadaveric transplant, and was afraid of it. I chose to go on peritoneal dialysis, which the doctor recommended, uninformed about what it would mean in my daily life. You know, what you have to go through each day. How it will affect what you eat, when you sleep, whether you can leave the house, the way your clothes fit, how much time it will take (3 hours a day). This ended abruptly when I got an abdominal hernia at my waist band and the doctors let it rupture. I chose not to go back on dialysis after I healed. It turned out a careful person could live with the kidney function I have.

After that I got to seriously rethinking transplant. I had unwittingly accepted the cultural imperative that we must do whatever it takes to stay alive one more day. If that was true, I had only two choices, dialysis or transplant, and I was on a path of complying with major medical treatments. I ran the hurdles and got on a transplant list. In my fear of death, I had reverted to that little girl who goes along with what the grownups tell her to do. This is strange, indeed, because the kidney doctor had told me carefully that I could choose to have no treatment, and that death from kidney failure was not unpleasant. But I didn't know anything about death.

Over this year-and-a-half, many things happened to nudge my attitude and change my mind a little at a time. Those many little experiences that make us who we are. Then, three weeks ago my health "events" caused the transplant surgeon to put me on hold. One problem was that I'd had an episode of arrythmia. My internist didn't believe me, that it was caused by electrolyte imbalance, that I had been flagrantly ignoring the kidney diet (it was the Fourth of July). The cardiologist didn't believe me and told me to wear an "events monitor" for a month, maybe two. The transplant surgeon didn't believe me. I'm much more familiar with the kidney diet than any of them. More importantly, I'm familiar with my body. But they know the statistics.

I kept thinking about the stress test, even as I treated the sores left on my body by the leads to the monitor. A stress test is very unpleasant, several hours of boredom capped by a huge stress caused by chemicals that raise your blood pressure and your heart rate. You are so radioactive that for three days you will trigger an airport detector. That troubles me. The disdain of the medical profession for the elderly, sick patient is shown by the fact that you must show up at 7:30 a.m. for this test. Because. No flexibility, no explanation.
(to be continued)
[image: "Freedom is to Follow the Heart," by Sanna Wallin.]

Thus

[image: Jack Kornfield]
Some days it is impossible to feel inspired or light-hearted. That’s what this week has been like. Lots of extra work getting ready for Tom’s big birthday party coming up, so I didn't have time to write. An MRI on my obdurately painful ankle Tuesday. Blood pressure has dropped very low, no explanation. Results of major blood draw Thursday show my kidneys have not recoveredand my anemia is not responding to Procrit shots.
Have developed night sweats, waking up drenched - why?

Now it’s Friday, and I just had PT again for the least of my worries, the muscle spasm in my back that won’t give up. (We noted the good news, though - I can put on a tee-shirt without pain.) The sports doc wants to see me Monday to explain the results of the MRI thoroughly. Uh-oh.

I am actually not so worried about the ankle and what is causing this pain, something that did not show up on an X-ray. I am much more worried about how my kidney functions dropped to 11%, and how this seems to be my new plateau, at best. I really hoped to stay sort of well.

While Chad did physical therapy magic on my back, I told him I know the spasm might be affected by anxiety about having to go on dialysis again. He is a very level, factual guy. He listened to the short form of my story, in which dialysis two years ago turned out worse than I could have dreamed. He told me anybody would naturally feel anxious. Bless him. I wondered if he was religious.

So it was with this that I sat down in a chair to do the final part of the therapy, the moist heat. I love this. I looked through a Real Simple magazine, with special interest in the story about 42 ways to find joy. It turned out to be 42 items you could buy. Like a knit sleeve for your takeout coffee, instead of that old cardboard sleeve. I had a pretty hard time equating this sort of tiny, passing pleasure with joy, and put the magazine aside. I thought, Some people don't get it about the economy and consuming things.

Into this voice, the thought popped out that I really believe I can't fight the massive karma of low-functioning kidneys, which overwork and tend to burn themselves out. Either they will get worse and worse and kill you, or something else will. And I thought how hard I resist that knowledge. Like, "I know I'm going to lose, but dammit, I won't admit it. I'm fighting." What kind of sense does that make?

As I sat there enjoying the heat on my back, I remembered something from a tape of a talk by the Buddhist teacher, Jack Kornfield. He told about going into the hospital room of a man he knew who was dying. They looked at each other, and he said to the man, "Thus."

It was an audiotape, but I could imagine the gesture that went with that. I think he said the man smiled, and said, "Thus" back. When I heard this many years ago I didn't quite understand it; so it stuck in my mind.

Thus or Just this, things Buddhists say, meaning, this is reality now. Here it is.

Sitting in my chair I imagined Jack walking over to me and saying, "Thus." This kidney thing is your reality. I was taken by a warm feeling. At first it wanted to spring out in tears - I cry easily - and then it just expanded in my chest. Thus. I saw the reality. There was nothing there to fight - you just cope, no big deal. It had the fresh green feeling this day has, on which spring has finally come, with day after day of sunshine promised, so that here in Ohio we can pretend we live in California and life is easy, the way the folks out there do.

I am of the nature to die.

It is the day eleven for the flu and day two for a fibromyalgia flareup. The barometer keeps falling as a major rotating windstorm passes by us, and I am easily annoyed. This morning I am annoyed by an admiring story about a woman who died "after a long, courageous battle with cancer."

It is not possible to talk about this without exposing yourself to the wrath of millions of sick people and their relatives. But you know, if Barack could take what McCain-Palin dished out, I can take that. Because I know what I'm talking about.

Over eleven years ago I was diagnosed with invasive ductile breast cancer. I was only 54 years old. Unnecessarily extensive surgery was done on me at a famous cancer center. Then I spent many weeks with a lymphatic infection that flourished under inept care. Once over that, I did the overly extensive radiation therapy prescribed at the time -- one of those treatments that is very, very expensive -- and then spent weeks recovering from the huge blisters the treatments caused. I did the five years of tamoxifen without dying of a blood clot. And I did the cancer support groups.

I came up with lymphedema in the arm they took the lymph glands out of, without warning me of the probable side effects of this step. The lymphedema was manageable, even when I had to wear huge compression bandages around the clock, until two years ago, when a hospital elevator door (there's irony) struck it. Since then the arm is much more swollen, and yes, I have a lymphedema therapist and I wear a sleeve, and I have a pump, and you know what? No one can fix what the surgeons did to me. The ordinary everyday frustrations of this include that I have had to go to Goodwill and buy a new wardrobe because almost nothing I owned will fit over this arm, including my coats. So maybe all this, and the endless flu, has something to do with my annoyance over this talk about fighting illness. Courageously.

How abstract to get on this? Well, as a credentialed student of language, and specifically of metaphor, I note that "battle" is a masculine metaphor. Generally, it is men who wage war; and physical courage is traditionally a masculine virtue, though many women cultivate it in the effort to prove they are people deserving of respect. (There is also an interesting admiration of ferocity in defense of one's children. I've known very dominated women who are proud to say "I'm a mother tiger," or "the mother from hell" in defense of their children. Or"a pitbull with lipstick.")

When I think about courage, I remember a scene from The Fellowship of the Ring. The King's best friend has just died in his arms. But the Orcs are steadily coming over the hill. He picks up his sword and begins to methodically kill them, one by one, in an endless line.

I was moved by this scene. It is a version of courage, almost a quiet kind of courage, to take a deep breath and do what you have to do to stay alive. None of us likes to be around its polar opposite for long, the person who wilts and whines; it is too much like begging us to somehow do it for them.

But somewhere between these poles of King and Coward is a vast gray territory containing what may be the right choice for a given individual. I am thinking of one who took it not long ago, the columnist Art Buchwald. He'd had acute kidney failure, apparently after a partial amputation, and been put on hemodialysis. After a dozen treatments he said, Enough. I'm going to die in peace.

It was big news to me, hovering as I was on the edge of the same cliff. Yes, I had been told that I didn't have to undergo these often-difficult treatments, I could choose to die when my kidneys finally let go. But nobody meant it. Not the first kidney doctor, not the second one. Only my minister gave me the dignity of choice.

I am still on the tx list, as we insiders call it. I am still suffering pain from the emergency surgery that had to be done when the short dialysis I did caused a rupture. I still wander the dialysis e-list now and then, observing the horrendous medical problems and asking myself, Do I want to revise my living will to say No dialysis, never?

But in trying to think for myself and live my own life, I am beset by a medical establishment that makes an enormous amount of money off these dangerous and often inadequate treatments. And more than that, I am discouraged by a culture that sees death as one more thing to fight. That believes in fighting. Fighting the inevitable. Standing up to death. When I think of that, I think of the dialogue in the film The Seventh Seal, where the knight looks up from the chessboard and says to Death, "You're going to win, aren't you?"

"I always do," Death says calmly.
~~~~~
note: The text of The Five Remembrances is included in my post of November 6, 2008, titled "I am of the nature to grow old."