What are the eleven words you least want to hear your from your doctor (that don’t involve the area just south of your waistline)?

“You have a brain tumor the size of a golf ball.”

Hey! I have a brain tumor the size of a golf ball!

It’s a meningioma, a tumor of the meninges, the lining of the brain and it’s causing mild and very strange perceptual hallucinations of the language function.

Here’s what I wrote for my neurosurgeon to help him understand my symptoms:

“About two years ago I began to notice a phrase, a paragraph of text, teasing at the edge of my mind. It was one of those things about which you might say “I can’t put my finger on it.” At the time it seemed to be just a sort of old memory; something I saw written down somewhere, perhaps at work several years ago.

By the way, I could not, at the time, tell you what the phase is, and cannot today.

It seemed like it might be an effect of aging; a trick of memory. The kind of thing we all share as we grow older. But then it changed. The phrase began began to present itself to me from the mouths of others.

Television and film characters began to speak the phrase. Not to me, but as though it were part of the dialogue they were performing. At first I thought that the phrase must be a common aphorism that I heretofore had simply not been familiar with. It seemed fairly well known. Everyone was saying it. Then I heard the phrase spoken as part of an interview with Mike Nichols on The Charlie Rose show. They were talking about Shakespeare’s Henry IV. “Aha!”, I thought, “it must be a common piece of Shakespearian dialogue.” I have Tivo, so I recorded a later show to view as my proof.

And the proof wasn’t there. Nichols and Rose had the same dialogue, but the phrase wasn’t there. This would be a good time to remind you that I still have no idea what the phrase is.

Now the phrase began to appear in print. Books, magazines, the covers of CDs, even the side of a case of oil at Pep Boys.

Let’s say I’m reading a book. Here is the printed text:

“During the rapid movement from the blockhouse, and until the party was deeply buried in the forest, each individual was too much interested in the escape to hazard a word even in whispers. The scout resumed his post in advance, though his steps, after he had thrown a safe distance between himself and his enemies, were more deliberate than in their previous march, in consequence of his utter ignorance of the localities of the surrounding woods. More than once he halted to consult with his confederates, the Mohicans, pointing upward at the moon, and examining the barks of the trees with care.“

Here’s how it might suddenly read:

“During the rapid movement from the blockhouse, and until the party was deeply buried in the forest, because the nature of the perceptual effect I’m experiencing is so difficult even for me to wrap my head around, I thought that it might help you if I made an attempt to explain it on paper, so that you would have a record to which you could refer in order to better understand what’s happening to me in the same way that I do. More than once he halted to consult with his confederates, the Mohicans, pointing upward at the moon, and examining the barks of the trees with care. “

Of course, the actual phrase would be something else, known only to me as I read it. Returning to the text after a shake of the head or a blink, it would read normally, the phrase no longer there.

I have tried to speak the phrase aloud as I read it, but find I cannot. It is as though only the meaning of the text changes, but not the actual text.

The phrase has also presented itself to me without the aid of text or spoken dialogue. In these instances, it seems to be searching for a place to present itself. It still feels like a thought. It does not present itself as a voice. No, I am not hearing voices.

Oddly, none of this caused me any concern. But I found it to be an interesting puzzle and shared it with my physician. He doubted it had any organic cause. I, however, doubted that it could be anything but organic. I tend not to believe in things that require belief.

I’m not anxious to discover an organic cause for all of this, but as I said, I remain a skeptic and a rationalist. In the same way that I might feel that my gut is agitated due to a bad piece of shrimp, because that is what is actually happening, I can feel that what is happening to me in this instance is happening to my brain and not my mind, while happily conceding that they are one and the same thing.”

Bit clinical, I know, but that was kind of the point.

So my new friend Dr Cybulsky (a Pole! My orthopedic surgeon, Dr Mircovic is Czech – I entrust my nervous system only to Eastern and Central European practicioners), wants to carve a hole in my skull and yank that sucker out. Oddly, this is elective surgery, as it’s a benign tumor and not life-threatening and the symptoms are merely strange.

I don’t expect it to cause me anything but a couple of week’s grief in late March and some hair, so there’s really nothing to be all that concerned about. Cranial surgeries are far better things to have than say, thorasic surgeries. Less invasive, no affect upon ambulation, etc. Actually, brain surgery feels very punk-rock to me. Kind of like the ultimate tatoo.

Published in: on March 1, 2006 at 12:50 pm  Comments (19)  

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19 CommentsLeave a comment

  1. “…to wound the autumnal city.”

    The only way I can slightly understand the phenomenom you’re describing is by comparing it to the novel Dhalgren by Samuel R. Delany.

    Wow. That sounded callous. Didn’t mean it that way. Anyway, I’m delighted that you were able to determine the root of the problem before it worsened, and wish you a rapid recovery.

    I will now retuen to my normal taunting tone for future comments.

  2. Yes, just like Dahlgren. Utterly incomprehensible, but not so gay.

  3. Brain surgery is about as punk rock as it gets. Therefore I suggest you and I pogo in defiance of your ailment at the show of your choice at SXSW. Until then, let me know if you need anything, I’ve always got your back…steve

  4. If by “pogo” you mean “drink,” or “beat the crap out of Beatle Bob,” I’m there.

  5. Of course to the other two, but I’m serious about pogoing. Might rattle the problem right out out of your head. :)

  6. The last time I visited here, I was pointed to a discussion of mind/brain evolution at the NYT Forum. Now this. I can only marvel at your theme-tenacity. I already thought that yours was some of the best writing in the known blogosphere. Now, I’m a fanatic.

    Best of luck with your upcoming brain surgery.

    [my inner-B.A. really wants to insert the obvious ELP lyrics here, but I’ll rein in that demon]

  7. 42

  8. My mom had a meningioma. Four years later it has never returned and she has full function of almost everything (a little weakness on her left side, nothing more).

    Your symptom is WAY more interesting though. The surgery process was quite simple and painless, according to her, and all symptoms disappeared the minute she woke up from surgery – it was quite amazing, she said.

    Best of luck!

  9. You should try to contact Oliver Sacks. He’s written extensively about people with similar situations.

  10. I had a meningioma, too. Baseball-sized. How many baseballs you think can fit up in there, anyway? It was benign, but life-threatening due to its size and cranial volume hogging. All at the unbreakable age of 27! Anyway, surgery was a total success. Out of the hospital in 3 nights. Back to work after 10 days.
    I didn’t have any symptoms, really. None that I actually realized, which is the mindfuck. Just brief headaches hurting like serious brainfreeze about 20 times a day. I can’t imagine hallucinations. Crazy.
    Good luck, man. I wish you the best. FYI: getting staples pulled out of your head IS punk as hell.

  11. Hey, Tom. This sounds like a case for Oliver Sacks. Maybe you should try to email him–at the very least, he might write about you in The New Yorker or something. I wish you a quick and speedy recovery.


  12. FYI: You and your post are being discussed here:

  13. I was alive in the late 70s, but I won’t pretend to be the “Punk” expert. I was just playing off Tom’s own words and positivity. I’m sorry to hear of ex-patient’s hardships, but every experience is unique. My staples were a pinch, and I can walk just fine (unless my friends are too polite to tell me). That’s not to say that my recovery is trouble-free, though.

    There are a million and one nightmares to have about this situation. I’m glad to see Tom keeping his chin up. Looking forward to the recovery reports.

  14. That is an insane story! What I find most amazing is that you knew something was up. The “something’s up” part of the brain must be in a different part. :) And I do think it’s punk rock. I’m worried about “ex-patient” though, so much hate! And I can actually think of worse places to cut open. I can’t wait to her about the post-op.

  15. Wow. Very interesting. I’d never have thought having brain cancer makes you cool, but hey, I suppose there is a first time for everything.

  16. hi my friend of the ages. more interesting than your plight are the comments of your readers. yikes. from what you say about this i choose not to be worried. being shallow has its benefits. aml you. lindy.

  17. Just want to respond quickly to Ex-patient:

    Just got around to seeing your post – I don’t read them all right away. I was not only alive when Punk Rock came around, in ’77 I was 26 years old. Do the math. I’ve seen both the Sex Pistols and the Beatles. The consensus among the majority of ex-patients and neurologists I’ve heard from is that this is an easy one, that the recovery will be brief and that I will not be saddled with further problems, in fact, it will eliminate the ones I have currently. Sorry it was tough going for you. Hope it gets better.

    The Geezer

  18. What about the previous post? I think that’s an important note as well.

  19. Anybody know how we get an RSS feed for this blog? I am not very tech savvy and would really like to get updated info on this blog. Thanks!

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