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Friday, April 30, 2010

MRI + EEG - 4/29/10

What a day.

I could not have dreamed up two more different experiences under the same roof. I have had many MRIs, but this time (with the same technician in the same machine) I was—let's just say it—traumatized.

"Wait, let me out!!" I screamed. I had only been in the machine five seconds. The technician rushed back inside and slid me out. My face was covered in tears. "This isn't me," I thought. She put her hand on mine to calm me down. "Can you do this?" she asked. I looked back at the machine, at her, at the room. Same place. How many times is this? What just came over me?

I said, "It's my arms touching the inside of the machine. I feel like I'm being cremated. It's too confined and I want to get OUT."

"Try holding your arms tight to your body so you don't feel the inside of the machine. Then just close your eyes."


I went back in. A voice came over the speaker, "Test starting. Please hold your head completely still for the next thirty minutes."

MRIs are loud, as in LOUD, as in L.O.U.D. I could take this audiological assault on previous MRIs, but this time it was pure torture. To make matters worse, the buzzing in my ears and the top of my head went haywire. "Any moment now, I'm going to have a brain shock," I thought.

I did.

My head detonated and I forced myself to remain steady. My toes twisted violently, but I kept my head still. This happened one more time. What can I say? I felt a deep, searing pain in my head and I had to force myself to remain stoic. If not, the test would have to be repeated (which is bad) or cancelled (which is worse). It was brutal. Nasty, nasty.

The technician slid me out of the MRI machine.

"That was horrible," I said. "Totally different from the other times. I can't wait to sit up."

"Stay still," she said. "We're only half done."

She injected dye into my veins and slid me back into the machine for another go. The entire test was repeated. I felt the same sense of being torn apart, tortured. I forced myself to remain completely still and to absorb any painful shocks. If I know the parameters I can take a lot of pain. I had two more shocks before the test was done. Also—and perhaps most notably—an enormous white circle of light exploded in front of my left eye. It didn't actually happen, obviously, but the visual effect was stunning.

Walking me back to the dressing room, the technician stopped. She always recognizes me from the symphony and I like her. Today, she had real tears in her eyes.

She hugged me and said, "I really hope I don't see you in this place again."

I staggered to the neuroscience wing for my EEG. This is in the new part of the hospital. Compared to the the stark, utilitarian corridors of the main building, the new neuroscience wing has a fancy tiled floor, fountains, stylish light fixtures and a large reception area for checking in not unlike that of a resort hotel. Noticing the lit waterfall trickling down one wall I half expected a waitress in a straw skirt to offer me a complimentary drink in a coconut.

The neurological testing suite exuded a quiet, peaceful energy. A Zen hum, if you will. A young technician greeted me and escorted me into a silent room.

"Have a seat on the bed," she said.

I replied, "This looks comfortable. I just had a traumatic experience in the MRI machine. I just want to lie down and sleep."

"Good," she replied softly. "That's all we want you to do."

Her tone of voice suggested immense empathy. I considered that the MRI and EEG could be part of a bad-cop-good-cop routine for interrogation. The MRI was waterboarding. The EEG was wine tasting with the head of the CIA.

I relaxed deeply into the soft bed while she attached twenty-three electrodes to my head.

"What do you do?" she asked. "Symphony," I said. She jumped: "WHAT? Oh ... MY GOD! Wait here!!!"

I wasn't planning on wandering off, but I waited nonetheless.

She came back yanking the arm of another technician. She pointed at me. "Guess who he is? Give up? He plays with the symphony and you always buy tickets to the symphony!"

"Hi," the new lady said.


The new lady left and my technician went back to attaching electrodes. It was tedious work. God bless her.

"Now I'm going to place this strobe light in front of you," she said. "Keep your eyes closed for the duration of the test."


I tried to make myself vulnerable, hoping for a brain shock. Flashing lights have been a serious issue recently.


—No problem—


—Bring it—


—Cool effect. Do that again—


—I felt as if I were rising off the bed, traveling into the light. I walked into a shower of photons, into another dimension. My brain felt peaceful, vulnerable, waiting, waiting—


"That's the end of the strobe," she said.


"For the next thirty minutes we want to measure your resting brain waves. Everything calm and quiet. Try to sleep."

I had one tiny blip that could have registered as a brain shock right then, but it was nothing like the huge jolts I had to endure in the MRI room. Not even close. I was so tired. I relaxed into the bed and slept. The technician told me I had a few "interesting dives" during the test.

The neurologist will be reading my test results tomorrow.

Thursday, April 29, 2010

Sleep Deprivation

I am sleep-deprived. This may come out funny.

My MRI and EEG are this morning. The MRI is routine by now, but I have never had an EEG before. I am supposed to make one of my brain shocks happen during the EEG, but the brain shocks are random. Try fasting for two days and then hope for an accidental burp. Most likely it won't happen.

Maybe this is what an adult actor feels like going into a first audition. "Sorry," he says. "This doesn't usually happen." "It's okay, it happens to everyone from time to time," someone says off-camera. "I just feel too much pressure," he says again.

I am sleep deprived. Have I said that?

A call came in yesterday from the EEG people. "ONE: no caffeine or chocolate twelve hours prior. TWO: be sleep-deprived, and THREE: don't have a lot of products in your hair." I have the third one covered no problem. I can't remember the first two because I am sleep-deprived, but I see the kitchen cabinets are covered in sticky notes ("No!" in my own handwriting) and the coffee machine is wrapped in duct tape.

My Epilepsy friend gave me simpler advice: "Just drink more than usual the night before the EEG." This presented a challenge. Nigel Tufnel, the guitarist for the band Spinal Tap tries to solve the same dilemma when pondering the cover of the group's new "Black Album." He asks, "It's like, how much more black could this be? And the answer is none. None more black."

I jest of course. I am sleep-deprived. Have I mentioned that?

Last night during my two hours of sleep I had a dream. I was driving through the desert with a kitten in my lap. The kitten was lost and I had to find the owner somewhere in the desert. Police cars wailed and I stopped my car. I looked in the rearview mirror and saw Benicio del Toro approaching. He had really nice-fitting jeans.

I rolled down the window and he spoke slowly: "Nooooooo. You may not be driving ('dry-wing') con eso gato de Tijuanaaaaa . . ."

I was intimidated. Benicio del Toro exudes a manliness I cannot match even when I shower.

Finally a friend showed up and told me, "No, Ale! Have paw prints taken! All cats have their paw prints recorded when they are born. Match the prints to the owner and you can deliver the kitten home!"

I don't know what any of this means. I am sleep-deprived. (Did I mention that?)

And, yes, I do have someone driving me today.

Tuesday, April 27, 2010

Enjoy Your Trip?

Two more days until the ?st MRI (I've lost count) and my first EEG.

"What should I expect?" I asked my friend with Epilepsy.

"Whatever you do," she said, "try to make your brain shocks happen during the thirty minute EEG. If you don't, they'll keep scheduling longer and longer EEG sessions until they can measure what you're talking about."

"What, like thirty minutes, an hour, two hours?" I asked.

She said, "I had to do a week-long EEG before they caught one of my seizures. A week. You're wandering around, apologizing to the nurses. 'Sorry it hasn't happened yet.' Just try to make it happen on the first EEG."

[Idea for television show: "Seizures! Caught on tape!" (If they can make an awesome show about crab fishing this should be no problem.)

My left leg issue has come back a few times, briefly. It doesn't respond, but then it does a second later. Weird.

Perhaps I have been losing some of my coordination, too. I have had the past two days off and—of course—I have blown all my free time looking for morel mushrooms in the woods. On Sunday I was lost deep in the woods (as usual) and, going down a ravine to case a strain of ash trees, I didn't see a root protruding through the dead leaves. My left leg caught it and my right leg could not prevent a fall. My body swung to the ground faster than I could react and my head hit the dirt in a way that scared me. I was probably more shocked than anything but it felt like my brain sloshed around inside my skull during the impact. I limped back to the car and drove straight home. I remember stories about skiers hitting their heads and getting symptoms hours later. I wanted to be home where MJ could drive me, not stuck in the woods trying to describe my location to her. ("Honey? I'm feeling woozy. There are trees around me. Know where that is? Wait, there's a squirrel too!")

I felt better later on. Yesterday, I went mushroom hunting again, checking a different spot. Everything is too dry, not enough rain. I found one morel, though. I cut it open but discovered it was a so-called "false" morel, meaning it was poisonous. Bad luck. Some time later I tripped AGAIN but saved my head from another serious impact. This time I arranged myself by a tree and caught my breath. It was quiet being so deep in the woods like that. I love solitude. Probably miles from the nearest person. I lay back and looked up at the foliage. Spring. The air was moist, flowers burst open, animals skittered along the bark of trees. Everything felt so thick with life. No wonder birds sing.

The gunshots in the distance told me it was time to drive home. That I was wearing camouflage didn't help my predicament. Back at home I walked down the steps outside and somehow lost my footing AGAIN. I braced myself properly but scraped a big chunk of skin off my right knee. My right shin is bruised, my right ankle is sprained, my right thumb feels sprained and my left hand has a small gash out of it.

Sometimes it feels like my body is part of a movie, but individual frames are dropped from this movie. When I play the oboe, there have been moments where my right arm just "drops" for a split-second. I recover quickly, but I know something strange has just happened. Perhaps this is happening more now, where I lose control of fingers, arms or legs for just a moment.

When I was a child, my father would always say, "Whoops! Did you enjoy your trip?" I thought that was pretty funny, and it's good to laugh about anything you are able to.

Wednesday, April 21, 2010

Color Me Stupid

The neuro-ophthalmologist instructed me to cover one eye as he opened a book filled with colored dots.

“Tell me what you see,” he said.

“A horse,” I replied.

He sighed. “It’s a number. Try harder.”

I squinted at the page that looked like a squished-up Damien Hirst dot painting. I could see the individual dots were different colors, but while zooming out nothing distinct emerged.

“Unicorn?” I asked.

“No, it’s the number twenty-nine. See? There’s a two here and a nine next to it.”

I couldn’t see it at all. We flipped through the rest of the pages and all I could see were bunches of colored dots and the occasional farm animal.

It’s official: I am color-blind.

I have known this all my life but never thought of it as a disability. Briefly, when I trained for my pilot license, it became a problem. Colors are important during night flying so I was prohibited from flying in the dark. Also, most airports use colored lights at runway thresholds to help pilots make a proper approach. At certain times of day the colors all looked the same to me which prompted my exasperated instructor to say, “Well can you at least see the runway? The paved strip thingy? Just land on that.” I did. The runway at Grand Rapids is two miles long. Landing a small plane on it is like throwing a wet towel down a hallway and hoping you hit the floor.

Besides my doomed affair with flying, the “problem” with color-blindness is two-fold. 1) It is an aesthetic disadvantage. Autumn does not look as pretty to me as it does to everyone else. To me, pretty is spring. Large trees with flowers all the same color. I love big expanses of solid colors. An artist like Barnett Newman is very comforting to me.  Mixed colors confuse me and make me think. 2) Every time I tell someone I am color-blind they grab their shirt and ask, “What color is this?” They think “color-blind” means I see random colors. “Your shirt is electric pink,” I say. “Really?” they respond. “That would be so cool to be color-blind. You’d never have to adjust your TV.”

I can see traffic lights just fine, but even that has put me in trouble. Once, during another doomed affair, I was urged to “Make this light!” I gunned it and sped through as the light turned red. Police sirens wailed a moment later and I pulled over. “License and registration,” the officer said. As he studied my papers I heard the voice next to me say, “It’s okay, officer. He’s color-blind.” “What?” A flashlight was in my face. “I can see!” I said. “I am color-blind. But I can see the traffic light!” She added, “That’s right, officer, he can tell by the position of the light: up, middle, or down.  Other than that he's blind as a bat.” I said, “No! I can see fine!  I can see individual colors!!” The officer said, “But you’re color-blind.” “Yes, I know! But traffic lights are fine!” He handed back my license and registration. “Don’t do it again,” he said.

I haven’t.

Saturday, April 17, 2010

Mister Atomic

The past week has been good. My mysterious left leg phenomenon vanished almost as soon as I posted the previous blog. I noticed it in the car once or twice more, but other than that it’s been fine. I walked like Igor for a while. Not the Stravinsky one but the Frankenstein one.

The pitch change relating to light coming in my left eye I have confirmed over and over. At a certain time of day when the ringing is incessant I can manipulate the pitch by controlling light. I have a timely appointment Monday morning with my neuro-ophthalmologist and I will have plenty of questions.

The electric detonations in my head continue, though they are less intense due to the new medication. This week our orchestra is playing the "Doctor Atomic Symphony" by American composer John Adams. During performances I can't help but imagine miniature Los Alamos experiments inside my head every time one of my jolts occur.

The new prescription (Trileptal) instructs me to take the pills “twice a day” and I have worked out a way to take one pill before my brain shocks begin and another pill right after. This means taking the two pills as close as thirty minutes apart, but it is still technically “twice a day.” In any event, it does something to help during the worst part of my day. The shocks are better. But only a little.

Yesterday I ran into a friend and updated her on my condition.

“Wait,” she said. “In addition to the tumor you’re developing Epilepsy?”

I replied, “Maybe yes, maybe no. At least the medication is for that. A disproportionate percentage of craniopharyngioma patients develop Epilepsy.”

“I have Epilepsy,” she said.

“What?” (Why am I not notified of these things? I have known this person for years.) “You?” I asked.

“Yes. Since I was nineteen. Doctors didn’t know what it was.”

“Aren’t there, like, sixty different kinds? What kind do you have? I have light flashes in my left eye. I call them my electric butterflies. Do you have light flickers?”

“No,” she replied. “Mine are like auras rising up from inside me that occasionally lead to seizures.” She gave me the technical name. “Until I was diagnosed I didn’t know where to turn. I even tried exorcism.”

“Can you spin your head around? You could make a living just collecting bar bets.”

She was not amused, so I continued, “Anyway, it’s still early and there are so many different kinds. That’s if I have it at all.”

I thought of another little thing I have noticed recently and added, “I also have these slight arm or finger twitches.” I mimed a jerky motion with my left arm.

She nodded knowingly and donned a Welcome-To-The-Club look on her face. “Aha. So you're a lefty."

Monday, April 12, 2010

The Light

I discovered something odd about me yesterday. (What else is new?) The ear ringing, now a constant issue, is affected by the light coming in my left eye. Let me explain.

Yesterday MJ and I were trying to enjoy our last day off. My brain shocks were detonating as usual. My head buzzed with ringing ears. I checked my vision by closing one eye, then the other (something I do regularly). The vision is holding up fine, but I noticed something else: the pitch of the ear ringing did an upward half-step glissando every time I closed my left eye. I did this many times to confirm.

"Maybe the facial muscles alter something in your inner ear and this causes the pitch to change," MJ said.

We had paused the TV—The Masters, mind you—and this meant there was something serious to discuss.

I replied, "Maybe, but let me try something." I kept my face completely still. Using the most minimum energy I could, I closed my left eye and then opened it.

The same pitch change happened with the ear ringing. I tried several more times and it was always the same.

"It still could be just a tiny facial muscle," MJ said.

"I'll try something else," I said. Now, I did not move my face at all. Keeping completely still, I moved my hand over my left eye, blocking the light. SAME PITCH CHANGE. The same half-step glissando, up when the light was blocked, down when the light came back in. I moved my hand on and off my eye quickly. DO-RE-DO-RE-DO-RE-DO.

It was the light.

Later, during the sunset, the light flashing into my left eye disrupted something deep in my head. I simply could not take the light and I wished I had my eyepatch with me. I sat with my hand over my left eye.

This morning, there is now something funky with my left knee. Something in the joint, as if I can't make it do what I want. Stairs are difficult but not impossible. Just slow.

"Move, leg!" I implore. A second later, my left leg obeys. It's just a strange delay where my body won't quite do what I want it to. Something is starting to happen, but I don't know what it is.

Thursday, April 8, 2010


In a week I will have my next appointment in the neuroscience wing. In the meantime (this is a vacation week with the orchestra) we are keeping the stress level down by catching up on episodes of the TV show “24”. We just saw one where Jack Bauer (the protagonist) hung from the ceiling with bound wrists while the Russian mafia attached live jumper cables to his wounds.

“There,” I said to MJ. “That’s what it feels like, only on my brain.”

Noah noticed my voice and tipped his head to see if I had a treat. I didn’t, so he slumped back, groaned and watched the screen as Jack Bauer took more juice.

I was exaggerating, but only a bit. The new medication (Trileptal) doesn’t help (at least at the current dosage), but I am supposed to continue it until the next appointment. I don't know yet whether this is some form of epilepsy, but I have recently read that over 5% of craniopharyngioma patients (in one study) are later diagnosed with epilepsy. This is much higher than the national average.

I still experience the brain shocks—I now call them "shockras"—but I try to avoid situations where they occur. This means I never rest during the day, not even for a moment. And by “rest” I mean the moment I relax my thoughts, stopping to consider something beautiful, stopping to “smell the roses” if you will, stopping to think how something reminds me of the time when … KZZAAAAAPPP!

Like that.

As a result, I am sleep-deprived, probably more susceptible to interrogation than if I were drugged with Sodium Pentothal. I would reveal everything. Bank account numbers. Phone numbers. Safe combinations. The location of the rebel base. I’ll talk, but just STOP THE SHOCKS!

Again, I exaggerate, but only a bit. I do not suffer 24 hours a day. I suffer for one second, anywhere from three to fifteen times a day. And then I’m not suffering.

Imagine someone holding a sharp object over your hand. There is no pain yet, but you know at some point during the day that person will stab you with the sharp object quickly. Then—just as quickly—the pain will disappear.

So what do you do in this predicament? Yes, you see the right doctors and try different medications. But, besides that, what do you do? You go about your day.

Wake up. Nothing.
MJ makes breakfast. Mmm, good coffee. Good eggs. Good toast. Nothing.
Go for a walk outside. Cool spring air. Beautiful. Nothing.
Compose a little, write a little, check your email. Nothing.
Lunch? Sounds good. Good soup, mmm. Nothing.
Phone call. Nothing.
Errand. Nothing.
Dog walk. Nothing.
Fold laundry. Nothing.
Book. Nothing.

Like that.

I can’t wait to see what the EEG will show. If it records one of these shocks it might break the machine.