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Sunday, July 25, 2010


Approximately one year ago I began complaining to my doctor about morning headaches and other signs that could signify the presence of a brain tumor. My doctor took all of this very seriously and—as much as I can tell from a patient's perspective—he did all the right things. He studied my optic nerves carefully (which looked perfect) and told me the next logical step would be to order an MRI, a big and expensive procedure which both of us thought was too severe an assumption to make at the time. I mean, I wasn't having grand mal seizures or anything. I was just having annoying morning headaches. They could have been hangovers. [Editor's remark: the last sentence is a joke.]

"There's another symptom too," I told my doctor at the end of that visit a year ago.

He kept writing in his notes and asked, "Yes? What else?"




"Uh . . . what, uh . . . can you spell that?"


"Is that a French word?"

"Originally. But it's part of the English language now. And it's handy to remember for Scrabble. Ennui."

He wrote it down. "Well, I learn something from you every appointment."

"Thanks," I said.

He finished writing the word in his notes, studied it and shook his head in disbelief. Suddenly, he blurted, "Wait, what does it mean?"

"Oh," I said. "A feeling of listlessness is probably the best definition. It's more like I have lost my drive or desire even though I have many things in my life I find interesting."

"You're depressed?" he asked.

"No, no. Definitely not depressed. I've been there, and this isn't that. But I feel squished in some way. My spirit is crushed even though I know it shouldn't be. I get exhausted thinking through things and I don't see the point. But I know there IS a point. You see?"

My doctor waved his pen in a circling motion and said, "So . . . you feel your life has become . . ."

I interrupted and spoke with finger quotes, "Like I feel more 'Kafka' than 'Kierkegaard.' Comprende?"

He did not comprende.

I thought some more. "How about this: It's like the 'oomph' is gone from my life."

"Aha!" he said, and began scribbling.

In retrospect, I was suffering from all sorts of things as the tumor began expanding: my testosterone was dropping to nothing, my diabetes insipidus was draining nutrients from my body, my asthma was draining my will to speak, my optic nerves were being twisted out of focus and my hypertension was keeping me paranoid about everything.

As I await my next major round of tests on August 4 (the first since May), I can't say everything feels perfect. In fact, there is a lot that doesn't feel right. In the past few weeks I have dealt with morning headaches again, several strange bouts of disorientation and moments when my eyes go in and out of focus. For the past several days I have woken up to the "tingling scalp" that was all too familiar before and after both surgeries. I described it to MJ this morning as the feeling of bubbly cola fizzing along the inside of my skull, along the top and behind my eyes. It's very annoying.

Most of all, an overwhelming sensation has pressed into my spirit recently, and MJ can see it too. It feels like it has a color this time, an aura of pale rosy pink mixed with bits of dull brown and a sickly green. I felt this way before, one year ago, and despite my desire to fight it and make it go away it hangs around all the time now, just about every moment. And this time my doctor will know the word and its meaning when I tell him during a regular appointment next week: E-N-N-U-I.


  1. missing you here at CMF these next two weeks. I just heard about the craniopharyngioma and want to know if you can will the calcium deposits to strengthen your leg and arm bones instead of the head? All jokes aside (sorry, but that wasn't a very good one), we'll miss not seeing you and MJ this summer. I hope you can 'chase away' this thing and be back in SC next summer. Fondly, Linda and Charlie

  2. Linda - so glad someone got a hold of you to let you know what has been going on. MJ's been looking for your email address and up until this point hasn't been successful. I can't believe we have to miss CMF this year; it just kills me to miss "City Noir" and all the other great pieces on the lineup. I'm doing my best to return to playing full strength and I am determined to get back to the best new music festival on the planet!