In withdrawal

I do not remember Neurontin withdrawal being this awful, but it is for some people. Google the phrase and you get 25,800 hits, about half as many as for heroin withdrawal, which was the gold standard for suffering when I was young and saw the film "The Man with the Golden Arm." As I recall, the star actually tried to climb the walls when he was locked in a room, in withdrawal.

It was prescribed earlier this year for the peripheral neuralgia that set in so fast, and it worked surprisingly well. This stuff seems to be the first drug of choice these days for nerve pain, but was formulated to act on epilepsy. It is so good it helps people through meth withdrawal. It smoothed me out emotionally, it helped calm down the neuralgia, it shut down my GI tract. I soon decided to cut back from 300 mg. at night to 200. Unfortunately, I didn't make many notes about it in my health log, how long it took, how bad it was, and I really can't stand the idea of cruising my journal from that time to see if I can tell.

So this fall a new medication shut down my GI tract again. I take several medications that contribute to constipation, and the others are essential. Neurontin was the only one I could ease off on.

The neuropathy seems worse, but tolerable, very cold feet and a sock of strange neural sensation halfway up my leg. I can take my attention away from that, though. I even sleep through the night sometimes. The depression is another story. It is not your everyday holiday blues, though I have had a problem with that for a long time, the way children of alcoholics do, because what is a worse time of year to be miserable and alone than when all the people in the commercials are having a great time? This is the kind of depression you may experience when your whole life falls apart, clinical depression. The kind where you wake up each day with a groan, sorry to see another day, sorry to wake up, feeling that a day is just something to get through until at last it is night and you can (you hope) fall asleep. It is real, chemical depression, something that happens to people like me with a genetic susceptibility. It goes beyond dissatisfaction with my life to dissaisfaction with the very nature of life itself.

Now, my left brain, my reasoning self, knows that it is sunny outside. I see red berries on a wild honeysuckle outside my window, the giant old sycamores in the ravine white in the sun. But I see the berries in the shade, I know the branches will be picked clean by the hungry robins before long.

My left brain, my reason, knows I will feel different some day, maybe even in one minute. Right now it is high noon, the hours of high fire according to Eastern ways of thinking about the energy of the day, and I feel more human than when I woke up. More alive. I have had over a cup of real coffee, the kind with caffeine, and I think it helped. Cried a little, it seemed to help. A brisk walk in the brisk air might help but I am just too what? tired, apathetic, unmotivated.

This is like having on my face a scuba mask (something I hate) made of the most brilliant optical glass, but subtly tinted gray, so that I see everything clearly, and everything is gray. We all die. What we do doesn't matter. None of what we did will last very long or make any difference. Our love for one another is tremendously faulty, our relationships shallow, able to wash away or held in place by creaky cultural locks.

Is all this true? Sort of. Or yes, a partial truth, my reasoning self knows. But in a fully awake state, I also see a beauty of constant birth and creation. I feel an eagerness for life while I have it. I enjoy. Not enjoying anything is one feature of profound depression; it is called anhedonia.

One thing I am glad about is that I know enough to avoid situations in which someone has made me angry. Over the years I learned that. When my mood is this bad I could say anything. Even if I don't lose control, to be around people is too demanding. I can't keep my end up. I don't want to.

I know a couple of people who have been stuck in this state, for decades. Even to me, and I should know better, they do things that look like the exact wrong thing to do. But these actions make sense from inside you. You seclude yourself, because you're just not up to social interchange, to reaction and conversation. You do know that no one wants you around if you're not in "a good mood." You stop drawing or writing, the things that usually make you feel like yourself, but that have to come from somewhere inside that self. You skip social events, skip class, skip church. What self? You don't seem to have one, you are so flat.

Doesn't it seem like a bad deal to have chemistry like this? That's in the midst of the generally bad deal that is life.

I have to wonder, how is it that people who don't have this chemistry can suffer so much, as if their lives were always tuned in to a low hum of a song in the background, a voice singing This isn't it. Right now I feel that if I could wake up feeling like I sometimes feel, just human, just awake and rested, - I'd be in a chorus line singing "New York, New York" and kicking up my heels.

A miracle, depending on how you look at it

[Computer graphic: "On Point" by Thomas Funkhouser]
Like everyone who can read this, I have a charmed life - a computer, a home to put it in, eyes to read with, the ability to read, more leisure than is good for me. And, like everyone, I find it easier to dwell on what I'm not satisfied with. But today my e-mail brought me a flock of reminders that something has gone very well for me recently.

The e-mails go to a listserve I am on for sufferers from neuropathy. Their subject is "Burning feet." I don't know how else to explain this pain phenomenon, except to say that it is real. What we usually mean by that is that western medical science can measure it. In this case, it is measured with a nerve conduction test, which involves needles and electric impulses, and makes you glad you have decent pain tolerance. (The plug for meditation comes later.)

The sensation that my feet and lower legs were burning cold and exquisitely sensitive, painful to walk on, had come on overnight. And the level of pain was unbelievable, though I could believe the disorder, which is pretty common in kidney patients. My internist never touched my feet, but asked a number of qualifying questions and prescribed the nerve conduction study and the first drug of choice, Neurontin. I grabbed at it, though I had just last year gone through serious withdrawal getting off this particular drug, which I was taking for much milder pain, and which has lots of side effects. Anything for pain like this. As many people know, nothing really stops pain, but you get a sort of relief, some breathing room. Meanwhile I considered some of the other things people do, like lidocaine patches and capascain cream. The only shoes I could wear were the soft ones, with thick diabetic socks to cushion them.

I was sort of swimming happily in the mental daze caused by the Neurontin when I went to my Chinese doctor for my regular acupuncture appointment. I have been getting treatments for a year now, part of my ongoing desperate attempt to stop growing old. I did know that acupuncture excels at pain disorders. But I had no real expectation that it would impact this tsunami. I think Dr. Wang did, though. He got very efficient. Neuropathy is one of the specific conditions for which the World Health Organization has validated acupuncture. It is understood like every other illness as a blockage in the natural flow of chi.

How do you describe these things? You walk in bent over with pain. You get up from the treatment table an hour later, and you're all right.

Since then I have stood and stared at the results of the nerve conduction study. Yes, I really have this disorder. Something is still manifesting in one leg, complicated by arthritis and a chronically recurrent bursitis. Maybe the cure was a coincidence. Maybe the neuropathy just went "in remission" in that mysterious way things do when western medicine can't explain them. We shall see. I still have some tingling in my feet, especially the soles; some sensation of heat, but not enough to take a Tylenol (except now that I'm thinking about it). I am still bothered at night by the pressure of the bedclothes on my toes; but not enough to order one of those tent things that holds the bedclothes up off your feet.

Most people I mention acupuncture to tell me "I can't stand needles," as if that settled it, and a whole major world tradition in medicine is out the window. Of course you don't like being stuck with sharp things; I wouldn't want to hang around with you if you did. But when you have intractable problems, maybe it's worth a try. An acupuncture needle is hair-thin, not like the needle that gives you your flu shot. Sometimes it stings going in, but the pain immediately subsides. It's supposed to. You are not supposed to lie there in pain. I have never suffered with acupuncture anything like I did in beauty parlors back in the day; I mean that.

I admit to a certain comfort-level approaching acupuncture, in that a long time ago I learned to give myself shots for allergy, later for Procrit. Then, too, there's the edge you gain sitting still in meditation with other people. You get over your fear of pain and your conditioned response. You see that pain is just a sensation. It passes. You really can endure it. It gives you a certain pride, actually, a kind of warrior attitude.

And after all, I had given birth, so I knew what real pain was about. I remember when Joan Rivers was a young standup comic, she had a bit I thought was funny. She said, "They tell you having a baby doesn't have to hurt. Let me tell you this - I screamed my head off. And that was just during conception."

Her line, not mine.

Embracing the new day

[calligraphy by Sengai]
I haven't been blogging much. I was thrown by the nephrologist's recommendation, in the face of labs that show decreased kidney function, that I get an access surgically installed, so I am ready for dialysis. There are logical reasons to dread total loss of kidney function; hemodialysis is simply not adequate to keep you healthy; and is fraught with problems. Add to that a psychological dread of being strapped down, helpless to move because you are tied in to a machine that is taking blood out of you, filtering it, and putting it back in. Your safety depends on a dialysis tech doing their job.

But this upsetting news has been pushed aside by the sudden development of a painful and limiting disorder related to kidney failure. It is described in this quote from the Neuropathy Assocation web site:

Peripheral neuropathy is caused by damage to your body’s peripheral nerves. This damage disrupts the body’s ability to communicate with its muscles, skin, joints, or internal organs. It is like the body’s wiring system breaking down.

Some of the symptoms I am experiencing are--
* constant burning and freezing pain
* sharp, jabbing pains
* extreme sensitivity to touch (feet can't stand bedclothes)
* muscle weakness
* difficulty walking; the pain exhausts me
* tingling, numbness

You get the idea.

Pain is pain, a sensation. You experience a lot of it, sitting on retreats, and you learn how to accept it and watch it change, along with everything else. I can ignore my burning feet when I'm here at my computer. It's getting up slowly and limping to the kitchen that's hard. Then it's hard when, walking back, I spill coffee on the floor - that's the muscle weakness. "Losing your grip" isn't funny.

Meanwhile, I am debilitated by anemia, another side effect of kidney failure. The good thing is that my nephrologist is willing to order doses of an EPO drug for me to inject myself at home, saving the hours wasted driving to a doctor's office, sitting around waiting, just to get a simple injection. The bad thing is that the wheels grind slowly, and it will be at least the end of the week until the stuff arrives in the mail. Meanwhile, I am anemic. That alone makes you tired and lackluster, easily out of breath. Believe me, you are your red blood cells. I hope if/when we get my red blood cells up over 11, I will remember how to spell. What an odd thing to lose (and I was spelling champion of my third grade).

There are so many dissatisfied perfectly health people in the world, doing things they don't want to do. If I had my health back - if I get a transplant - I swear I would never waste an hour. I would never forget my gratitude at just being able to walk, able to stand and cook something good. Able to think clearly again.

As for troubles, I'm not done yet. Last night while I was doing nothing, I pinched a nerve high in my back. It makes it painful to be upright, and to pour a cup of coffee. I think that's about my osteoporosis, another byproduct of kidney failure (and kidney patients can't take the bone-building drugs). I'm hoping the acupuncturist can fix it.

Meanwhile, it is today. And a beautiful spring morning. One special daffodil has already bloomed and is on our altar, and I'm expecting more today.

What does Buddhism say to help me? The Five Remembrances (on the bottom of this page) remind me that human beings get sick and age. All the face creams and plastic surgeries in the world won't change that. Remembering that truth, I think of friends who are in worse trouble than me. They parade before my inner eye, valiant people who are facing death.

And there is the central truth of Buddhism - reality. The only thing real is this moment - not all your fears and sorrows, not your preferences and disappointments, those mental emissions. This moment I have the sensations and the form that I have, and all I have to deal with is now. It is simply a new day. When we sit in meditation, we just sit like a frog in the present moment, training in being here. The bell rings, and we get up, and continue to be here with whatever we confront.