More Brain Shocks

My brain shocks are back. Last night I had about three small ones, and the night before I had two medium jolts (about a 6 on a scale of 1 to 10, representing the range I know). They are more unsettling than they are painful. It feels like something terrible is about to happen but it stops just short of that. It's like AAARRGH ... don't ... move ... don't ... move ... and then it goes away.

My dizziness is about the same, and it comes and goes. This week my orchestra is playing the live soundtrack to showings of the final "Lord of the Rings" movie, so I continue to sort out my headaches, brain shocks and dizziness to the sound effects of orc slaughter on the enormous screen overhead.

In my craniopharyngioma support group I have now met others who have these symptoms, along with my "tingly" scalp. With much interest, I have met an adult who experiences not only brain shocks but a variation of the "complex auditory auras" that plagued me in the summer of 2010. For those who have not read this before, here it is. I used to "hear" music playing right in the room with me when there was no music playing. This other "cranio" (as we call one another) "hears" her cell phone ring many minutes later, again, after it rings the first time, like a delayed echo.

To be clear, when I write "hear" it is not the same as when you get a song stuck in your head. I mean "hear" in a literal sense. You hear things exactly as you would if it were real. You don't answer the phone the first time, and when it rings again you reach for it only to discover it has not rung the second time at all. You were only "hearing" it the second time. An auditory aura.

I bet in 100 years these symptoms will be explained (or cured) but for now we are an odd bunch, experiencing strange side effects and trying to put them into words.

A First Time for Everything

I must have slept at least fourteen out of the past eighteen hours. I am still dizzy as I wake up, now for the fifth day in a row. I will be on the phone today with my endocrinologist, maybe going in for tests. In the meantime, here is an old memory I have been working on for a while about another dizzy time in my life, almost thirty years ago:


After I finished eighth grade in 1982, I spent the next three summers in northern Michigan studying oboe at the National Music Camp, Interlochen. I had yet to know music was my true calling and I thought of Interlochen as a fun diversion. It was my first time away from my parents. There is a first time for everything.

I did not have a girlfriend but I knew what one was. During the regular school year I attended Cranbrook, a private all-boys school. Girl sightings were rare. The campus of Kingswood, our sister school, was adjacent to us, but the only times we saw actual females were band practice and school dances.

During the first week at Interlochen a violinist my age brushed past me. She was so close I could smell her. I was seated, polishing my oboe clean. As she passed, she dragged her index finger across my knee. She whispered, "I think you're the most talented one here." She turned her head, batted her eyelashes twice more and swiveled the rest of the way to her chair.

I thought she liked me.

Her name was Darlene. She was willowy, freckled, strawberry blonde with a boyish cut, and her smile radiated a natural happiness. She was pretty. She was from Texas and she spoke with a comfortable drawl. She was the kind of girl I imagined spent free time amongst sunny haystacks, chewing sweet ends of long grasses and tying her plaid shirt into knots.

At the end of that rehearsal, I watched her pack up and wander to the corner of the stage. She pointed at me and curled her finger in a beckoning fashion.

I decided to follow her.

She took my hand and led me to the back of the building, shaded by fir trees. She positioned me with my back to the concrete wall. Suddenly, I remembered the girl I had held hands with back home the day before leaving—the girl to whom I had, like a valiant knight, sworn to “wait for her” during the long, hot summer—but that would have to stay in a corner of my mind for now. There is a first time for everything, I thought, and this would be my first kiss. Darlene looked both directions. All clear. She lowered her eyelids to half-staff. Prrrrrooooowww! The air thickened while colors around me dimmed to a warm pink. As she closed in her face went fuzzy. I remember one thing.

Garlic.

Not her. Me. I had eaten a stack of garlic toast at the cafeteria and I had not brushed my teeth. I fought to keep my mouth closed but it didn't matter because she was a light kisser.

As quickly as we had started, Darlene stopped. She looked at her watch.

"Want to do something together?" she asked.

"Sure!" I said, still stung by the novelty I had a girlfriend. "The music library is open. We could listen to a whole symphony."

"We could also go to the Melody Freeze for ice cream." Prrrrrooooooww!

I decided I wanted to go to the Melody Freeze for ice cream.

Back at my cabin I lay on my cot, hands contentedly behind my head, daydreaming of Darlene and how she was perfect. I tipped my head off the top bunk to eavesdrop about another boy in my cabin. He was getting lucky with a girl, too. She also played the violin. She was also from Texas.

What a coincidence, I thought.

Every time I saw Darlene for the next week, she pulled me into side corridors, pulled me to the sides of buildings, pulled me behind trees so we could kiss for a few minutes. The other boy in my cabin played in a different orchestra. When his orchestra rehearsed, Darlene's hand slipped easily into mine and we walked in the open with her head leaning into my arm.

A week later our counselors scheduled a "co-rec" between my cabin and Darlene's cabin. I was excited but Darlene was nervous. When our cabins met by a fire to roast s'mores, Darlene barely moved or said anything. My cabin-mate with the girlfriend from Texas stayed close to me for some reason. Darlene never changed her expression all night from stiff and wide-eyed, like a frozen goat.

Later in the summer, when this doomed love triangle collapsed into its own web of lies, my cabin-mate and I compared stories, timelines and alibis from the previous weeks. "That co-rec," my friend said, digging into a bag of potato chips and offering me one, "was what Darlene called"—he did an impression of her drawly voice—"'Like, the most intense moment of my life so far.'"

Before things soured, Darlene and I attended a live concert featuring Ella Fitzgerald. Interlochen was (and still is) a goldmine for young music students to see famous guest artists up close. In the summers I attended, I heard Count Basie, Benny Goodman, Wynton Marsalis, the Cleveland Orchestra, Al Hirt, Pete Fountain and Dave Brubeck perform on the same stage we used every day.

Before we entered the open-air structure that was Kresge Auditorium, Darlene panicked for a moment when she saw someone behind me and—instead of going in—she pulled me behind a tree. "Let's stay outside and listen," she said. "Then we didn't need tickets," I said. "Don't worry about that," she replied. Prrrroooooww!

I decided we would stay outside.

On the lawn we held hands, kissed, danced and twirled about as only a couple of awkward adolescents could while Ella Fitzgerald's voice slipped out the sides of the auditorium and mixed with the leaves in the trees before disappearing into the night sky. In its own innocent way it was—and always will be—one of the most romantic nights of my life.

"Go get us some ice cream," she said when the concert was over.

"Okay."

I went to the Melody Freeze, ordered one vanilla cone with sprinkles for her and one vanilla-chocolate twist for me. I wended my way through the crowd back to the auditorium with ice cream dripping through my fingers in the warm night. She was not where I left her so I went looking.

Around a corner not far away I found her pinning my cabin-mate against the concrete wall.

They were kissing.

There have been a handful of moments in my life where I have felt my heart literally crush apart. This was the first, and there is a first time for everything. A moment later I felt no pain—no feeling at all, actually—and I walked to the nearest trashcan. I dropped both ice creams in, marched back to my cabin, climbed up to my cot, pulled the covers over my head and willed myself to sleep, the melted ice cream turning hard and sticky between my fingers.

The next day Darlene came. She said, "You didn't find me after the concert."

I had no reply.

"Come with me," she said. "Come on!"

I didn't feel anything, but I followed. She fell in step and slipped her hand into mine. I stiffened. I didn't want her touching me. I thought she was dirty.

She ducked into to a building rarely monitored by the counselors that was long and straight.

"Let's go downstairs," she said.

“We’re not allowed down there!”

“Just follow me.”

"What are we going to do?"

"Come quickly!"

I followed.

The downstairs was a long, empty cavern with numerous practice rooms running up and down either side. She took my hand and led me to the empty room in the far corner. She closed the door and faced me with a wicked grin that continued to widen with each passing moment.

Prrooooowwww!

I felt nothing.

Prrrroooooooowwwwwwww, rrrrrooooowwwowwwwwww!

Nothing.

"Oh come on," she said, coming to me. She kissed my cheek. Then she kissed me on the lips, slowly. I felt better and kissed her back.

"Eeeeuww!" she blurted and pushed me back. "Why would you do that to me?"

"What?"

"I know you saw us together last night! I know you saw us!"

"Saw what?" I asked.

"You saw us kissing!" she hissed.

"Who kissing?"

"Us!"

"Oh …"

"Oh that's right!" she blurted. "Why would you come on to me when you saw me kiss someone else?"

"I … I … I …"

"What kind of girl do you think I am? Some kind of slut? You jerk me around for your amusement?" She burst into a fountain of tears.

I couldn't believe I had caused this. I approached her.

"GET AWAY FROM ME!"

I backed off.

During the next hour, I endured what I could only have described back then as psychological torture. I slumped in a corner, eyes wet, while Darlene paced back and forth, turning the last word of my every sentence into a question. If I said, "I'm sorry, I thought—", Darlene would study me, glower and ask coolly, "Thought? Why would you think like that? Thought?" I would respond, "I don't know! I'm just trying to make … to understand …" Darlene: "Understand? Understand what?" She screwed up her face, turned her palms inward and stared at the ceiling. "What are you trying to understand?" Me: "This whole situation." Darlene, screaming: "What do you mean by this 'situation'? What kind of ‘situation’ are you talking about?"

When there was nothing else to say, the silence was thick and the room exuded a rotten, dead air. We both felt like when you pull the plug and let all the water drain from the bathtub.

"Well," she rasped, "I guess that's all there is to say." She was in the opposite corner, arms crossed and eyes wet with real tears.

She left.

At the end of camp, when I was interested in another girl (still keeping the girl at home in mind also, valiant knight e’er was I) there was one final evening where all students gathered in the plaza between the Melody Freeze and Kresge Auditorium. Time to say goodbye.

I sat on a bench with my new girlfriend—a brunette, I think—talking to her about football while she stared off somewhere. We hadn't done anything yet, but my plan was to hug her goodbye and to really milk that hug. Then I would get through the school year writing letters to her about football, stoking the embers of our mutual attraction until we could resume our relationship the next summer where my goal would be to hold her hand.

While we talked, I spotted Darlene a short way away chatting with a group of eager boys. She was the center of attention as always, looking so pretty, laughing and flashing her smile that never failed to radiate natural happiness.

I studied her techniques from afar. There was the "Moi?" look, where she dipped her chin, moved her head aft and pointed at her chest. This was followed by the "Oh-you're-joking" laugh and a playful slap on a boy's shoulder. There was the wide-eyed "No … WAY!" exclamation followed by the "you-just-blew-my-mind" moment of stasis with her mouth agape. During the summer she demonstrated an impressive array of powers as if she were a novice wizard honing newfound abilities.

I asked my new girlfriend, "Would you mind terribly if I asked you to wait for a moment?" (More accurately, I probably mumbled, "Hang on a sec.")

I walked to Darlene and caught her attention as she finished hugging one boy. She surprised me with an expression I had never seen before: Her face melted compassionately. She tilted her head and put her hand sweetly on my face. This seemed at once genuine and contrived. I imagined her Texas drawl to be something rather European and Nineteenth Century: "Oh dear, dearest one. How did we drift apart?" She hugged me, touched her hand to my face again, and went on to the next boy.

I returned to the bench and noticed my new girlfriend gripping the seat, almost crushing the wooden slats with her bare hands. She softly hissed one word, "Darlene,” before the first tentative touch of my own hand atop hers melted the sting from her grip.

Dizzy, Dizzy

Hello, everyone. I wanted to write a quick update about the past few days because I am getting a lot of questions from those who have witnessed me. I don't have the fortitude to write one of my normal entries, so I'll list the facts.

The past three days I have been very dizzy. I feel fine if I am lying down or sitting still, but moving around or tilting side-to-side makes me lose all sense of orientation. I can hear fine, but I know I should get my ears checked for obvious reasons.

A likely culprit (hoping it has nothing to do with the tumor) is my diabetes insipidus. For the past week, I have had both morning concerts and evening rehearsals or concerts. This means I have needed to dovetail my desmopressin nasal spray (that prevents massive fluid loss). So I have missed out on the daily cleansing of "breakthrough urination."

In addition, when I could finally have breakthroughs on Friday and Saturday, I couldn't go. I had the overwhelming urge to urinate but nothing would come out, just a few agonizing drips at a time. I am sure my body's sodium and potassium levels are all mixed up as a result. I am thirsty, but then water repulses me a moment later. Grapefruit juice works best. I go as best as I can, then return to the couch and cover myself with an electric blanket because I am chilled. All day Friday and Saturday I was so tired, sleeping most of the day, resting for the concerts.

The other weird thing is my left leg which aches. Normally I feel my legs buzz when I have reached a full breakthrough (which is the cue to take my nasal spray) but I haven't felt that. There is a shooting pain (mild) that starts inside my left leg and runs up my left side to the middle of my back on my left side. I have tried the stretches, but that whole side of me is throbbing.

Most of all, it is the extreme dizziness. Despite this, though, I have been able to play concerts. (We were in the pit this week for Mozart's Magic Flute, and I suppose I came to work because I had less to worry about regarding appearances. If we were up on the stage I might have called in sick.) After last night's opera, MJ and I came home and, while walking in to see Noah, I thought, "I feel drunk." I had the coordination of a drunk, but with mental focus and alertness. It was so strange. My feet moved like sandbags and I bumped into doorways.

This morning, as I wake up, my ears ring as always, my left side still aches, but my dizziness has subsided a little after a good night's sleep, but it is still there. If I feel worse throughout the day I will call a doctor, and on Monday I will call my endocrinologist to report all this. My eyesight, best as I can tell, is fine.

Early Bog #11 (The Dream)

One of my last blogs from two years ago before I switched to my own website here at Husband Amused. I have a feeling this may be correlated to the days my tumor began expanding again, but that is just a guess. This is kind of trippy:

FRIDAY, OCTOBER 16, 2009 9:25 AM, EDT

I woke at 4:30am, knew it was too early, then proceeded to have a very unusual morning unfold. I lay awake, trying to put more than one thought together at a time. This has been hard: multi-thinking. Since the surgery I can do one thing and then do another. But I can’t comprehend two things at once unless I write it on a list and do them sequentially: one, two, three, four, etc..

Why I like mornings, I guess. The clean slate. Every action is an unadorned etching you can take time with by itself until you do the next one. I used to enjoy this as a luxury, but right now it is a necessity. Noah pills. Noah outside. Noah inside. Paper.

This morning, trying to mull over several things at the same time, I fell into a deep dream. I was walking in a garden with flowering plants and trees. Vegetables grew too, everywhere. But the vegetables, when I approached them, were in fact words hanging off the plants. I picked them, pulled them apart, rearranged the letters, made sentences. I could hold them in front of me and they would stay in mid-air as I reached for another word to go with it.

In the distance, I heard the blip of musical notes, quick arpeggios. D minor, staccato, higher pitches. I went to hear where the notes came from and the sound emanated from another plant, a giant hot pepper plant larger than I had ever seen before. I jangled the peppers and they made the sound again, those beautiful arpeggios as they touched one another. I tried jangling others of a different size and they added new notes, new colors (G-sharp alternating with A) to the already twinkling sonorities of D minor.

Then I felt a bass note. A benevolent D-natural in the grass that vibrated the skin underneath my feet, one note held out forever, sustained by the vibrating blades of grass as the air passed gently between them.

Things turned dark. All color faded away. The sky dimmed and I looked up to the clouds. The sky turned into a movie screen and someone said, “This is a film reel with scenes of rockets exploding.” I watched the blurry gray images of the clouds, but I saw nothing in them. I was holding my oboe now, and my oboe, on its own, rose into the air. My arms were fully outstretched. My own grasp of it and bodily weight prevented the oboe from flying away. But by continuing to hang on, it pulled me into the sky. My oboe was the rocket, and I felt myself tear apart from my physical body with a violent SNAP! as I followed it upward.

I was in my bedroom now, having floated up to the ceiling, curled in the top far corner of the room, my arms clutching my oboe to keep me flying. It was an unusual sensation I have experienced a few times in my life, this out-of-body feeling that is so real. I was fully awake, looking down at my bed and I could see myself lying there. MJ was gently shaking me because I was shrieking with some kind of nightmare. It looked like frames of a movie were stuck for a second, then they jolted forward to the next second, then the next. Very angular and raw. Film jamming and tearing in the projector, spitting through violently. Something terrible was happening down there. MJ was horrified, screaming, and I wanted to get back. With an audible SNAP! I flew myself back inside my body.

I saw a flash of my surgery. Metal instruments. Knives. Metal probing deep inside my head. Male voices: “In?” “Yeah, good.” By God, it was real. A memory. I saw it. It was real.

I felt MJ’s hand rocking my shoulder, soothing me out of my nightmare. I stirred briefly but stayed asleep. I woke a few minutes later, still feeling MJ’s hand holding me. I breathed in and out.

I said, “Love you.”

I slept some more, dreaming of musical notes. Harmonies. Polyrhythms. I was composing.

When I woke, MJ was out of bed. I leaned up to see the time. In my glance at the digital clock I caught the exact moment it flicked from 7:59am to 8:00am.