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Monday, January 30, 2012

Early Blogs #10 & #11 (You Gotta Go When You Gotta Go)

Here are two more of my earliest blogs from two years ago, ten days after my first brain surgery:


7:30am, Thursday morning. I’ve gone on a few tangents and it’s time for another funny hospital story. In a minute.

I woke up around 6am, and came downstairs. Even Noah, who usually skitters up to go outside the moment I wake, lay motionless in the front hall. He tipped his head briefly as I passed, as if to say, “Are you kidding me? Why so early?” He dropped his head back, groaned, but was up following me in a few minutes.

I opened the front door, retrieved the papers (NYT, WSJ) and there was also a package on the doorstep, a medium cardboard box chilled by the night air. It was a gift box from family, filled with favorite jams, grilling sauces and dried cherries from my favorite purveyor up north. (If you are family and reading this, this does NOT mean you have to send me something now. Seriously. Put away the credit card.) I got things SET for the morning, what I love about first things in the morning, so orderly. This morning I felt normal, not dizzy once.

Kettle on. Noah pills. Noah Kong. Noah outside. Noah inside. Noah banana. Noah rests. Open papers. WSJ to MJ’s spot, topped with NYT “Thursday Styles” section. Open NYT to Arts section. Cut out KenKen puzzle for MJ. Crossword folded precisely for me. Papers down, laptop open. Water boiling. Tea. Sit. Begin crossword. MJ’s footsteps upstairs. Perfect.

This morning my stitches come out from my spinal tap, so I’ll be leaving to see the surgeon in a few minutes. It makes me think about hospital life and things we take for granted at home. Simple things you can do yourself. I have a funny story to share about this, and I’ll finish and post it when I get back from my visit with the surgeon this morning.


Back from getting my stitches out. (MJ drove me.) This includes my funny hospital story, but first this. It was nice going through town, seeing the leaves beginning to change colors. Since the tumor came out, my senses are heightened. I am color-blind (red-green) but I still “see” colors, especially when they are not too mixed up. Colors pop now, my eyesight sharp as ever. Ten days ago I was strapped to an operating table and pieces of metal were going inside my head. The turnaround is amazing.

My sense of smell is heightened too. It is so magnified I wonder if I ever had olfactory senses as good as this. Everything smells sweet. I’ll never know how long I had that golf ball of tissue hogging up space behind my sinus cavity. For years, perhaps, something had stood in the way between a nice aroma and my brain. I love a small glass of Vintage Port now after dinner, just smelling the nuances endlessly, hardly needing to sip it. When I was building my wine cellar I would on occasion buy a few bottles of good Ports as they became available in so-called “vintage” years. It seemed prudent; Port was out of favor, dirt-cheap, took forever to age (no danger of them going bad), and the experts raved about the quality. It was a no-brainer even though I wasn’t sure I liked them that much. But I accumulated a small collection over time, shrewdly, just in case, buying the very best bottles at just the right prices. Though in the past I have tasted great Ports with my wine friends, I have never until now appreciated them so much. In a way, like the peppers I grow, a great bottle of Vintage Port is yours; it will contain all the sensations of things you remember while the wine was aging along with you in the bottle.

My hearing is good too. No ringing anymore. As I write this, I can hear the strains of the “God Music” movement from George Crumb’s “Black Angels” string quartet MJ is rehearsing upstairs with colleagues. In this part of the piece, an ethereal cello solo floats quietly over bowed crystal glasses providing a celestial hum. I now realize this is the otherworldly sound I was unconsciously thinking of when I wrote the piece in memory of my mother for her memorial service. In my piece, “Memory Box,” MJ and I were stationed on opposite sides of the stage, each of us running our wet fingers atop crystal glasses as percussionists on stage played groups of sounds representing fleeting moments I remembered about her, the most I could come up with at the time.

I promised a funny hospital story, so here it is:

In the critical care unit, I was in bed. The entire time I was attached to wires and tubes, blood pressure cuffs, catheters. In the critical care unit, make no mistake: you are ATTACHED. It seemed a machine beeped every time I moved. They wanted me lying there like a corpse, best I could figure.

My constant urination, thankfully, was no problem. In fact, it was liberating to have a catheter. My tumor removal led to a lot of bodily fluid upheaval and they needed to keep precise track. Every hour a nurse came in, emptied my bag of urine and noted the amount as well as my spinal fluid level and how many glasses of liquid I had consumed. They made constant adjustments to the bags, my bed level, and a column manometer.

But the thing about a catheter is, while freeing, it takes away your sense of control. Urine simply drains away. You hear this whooshing sound every once in a while, but you never experience the variation of the (probably male) Cartesian moment where you declare, “I go, therefore I am.”

After a few days of this odd freedom, you remember there’s also a number two. Seriously, I had forgotten all about that part. In the beginning I ate sparingly, and it wasn’t until Thursday that I wondered what I might do about a bowel movement. Thursday morning (the third day) a lot of things changed: my sinus packing was removed. I could BREATHE. I was alive again. After a mid-afternoon Dilaudid nap I woke up famished. Ravenous, actually. I grabbed the phone and ordered cheese tortellini with Alfredo sauce and a cherry cheesecake. Friends were coming to see me in a few minutes and I needed energy. Still needing to lie horizontal, MJ fed me one small piece of the tortellini at a time. But halfway through the plate, I didn’t want anymore. Things were moving and shifting inside me. I asked for a bite of the cheesecake, thinking it might help. Nope.

I had to go right to the bathroom. But I was tethered up the wazoo to my bed. The nurse looked over my directions and said I was not allowed out of bed yet. She could bring a bedpan, and maybe I could squat? My friends were halfway up the elevator. She gave me the bedpan and I just vomited in it.

A little while later they unhooked me while my friends were still there. I tried for a while, but the moment was gone. They put me back in bed, shot me up with more drugs and I slept until I woke in time for shift change.

Shift change at the new hospital wing (where I was lucky to be) was always a model of professionalism. The outgoing nurse stands face-to-face with the incoming nurse, both with laptops sitting atop lecterns, as if ready to debate one another. Like co-pilots going over a pre-flight checklist, they methodically go over my case bit by bit. It was always a perfect handoff as far as I could tell. Notes were scribbled and erased on my bulletin board. Then I noticed a new space near the bottom, previously unfilled:

Goal: [Arrow up symbol]

When the shift change was complete, I spoke to my new nurses for the night (you always have two in critical care, I think). Primarily I would be dealing with Heather, a sweet ingénue. She reminded me of the character Pam from “The Office,” especially her voice, and she nodded her head understandingly at everything I said, sometimes before I had said anything.

And then I met my other nurse, Sylvester. He was a strong black man. He seemed—and pardon me for saying this—just like the kind of stock character inserted into a movie who served the sole purpose in the script of helping a white person get over self-esteem issues. Before any introductions, he spied the up-arrow written in the “Goal” line on my wall chart. He made his eyes into perfect circles and pointed straight at me.

“We gonna get you UP. First you SIT up for a while. Then we walk to the DOOR and back. Later we’ll walk INTO the hall. Later still we’ll walk all the way to the END of the hall and back. Okay?”

“Okay,” I said.

He disappeared and I resumed my chat with Heather. It came up that my job was to play oboe with the Grand Rapids Symphony.

“Oh my GOD!” she said. “I LOVED going to the symphony when I was a student.”

“The Student Passport Program?” I asked her.

“YES!” she said. “It was so GREAT! All my friends too.” She rattled off the selling points for me: “Student ID. Best available seat before curtain. Only five bucks!”

“And just who do you think came up with that brilliant idea?” I pointed at myself and cleared my throat triumphantly.

“No WAY!”

“Absolutely,” I said.

In fact, I was lying. I am a zealous believer in this program—I speak of it often—but I didn’t invent it. I lied because she was going to make judgment calls on my drugs all night and I wanted her under my control.

She also saw I had a crossword next to my bed.

“You can DO those?”

“I’ve done every New York Times and Wall Street Journal crossword since 2005,” I said. (This was true.)

“I’ve tried, but I have never finished even one. You can do the New York Times? Those are the hardest!”

“I can, but you can too,” I said. “Start with a Monday. Spend all week on it. Use Google. You’ll finish. But only do the Monday ones for a while. I know you’ll be able to do it.”

“Really? Me?”

“Of course,” I said.


“Say, how am I doing on drugs right now?”

She looked at her screen. “Oh, uh ... you can have a Norco now. Two if you want. And”—her eyes scrolled down a bit more—“I guess as much Dilaudid injections as you want to fill in the cracks." She sort of shrugged. "That’s what it says. Need anything?”

“Mmm, I’ll start with a Norco. Then let's add little squirts of Dilaudid here and there to keep the rabbit holes open.”

“Okay.” She opened the safe, took a pill out of the foil casing and brought it to me with a new cup of water.


Sylvester came back, saw I was lying down, and left.

I thought for a while about the rapid changes in my body today and said to Heather, “You know, if I’m allowed out of bed, I’d really love to be in the bathroom by myself for 30 minutes. No pressure.”

I arranged myself on the side of the bed, ready for help standing up. Heather did all the clamping off of tubes and wires. Sylvester came into the room to escort me to the toilet. Heather's only job, apparently, was to trail behind me. Mind you, after three nights in bed, my gown was totally open in back, but I’m sure it was nothing new to anyone in that profession.

As Sylvester sat me over the porcelain, he arranged a mini table in front of me on which he placed a newspaper, a hand towel, and a puke bucket. He also hooked my hand to the emergency pull string.

"I'm all set," I said. "Thanks!"

"Water!" he said. "You'll need a COOL glass of ICE water at the right moment!" He disappeared, leaving the light on and the door to my bathroom wide open, out of my reach.

He didn't come back. I didn't know what to do. Five or ten minutes later, still trapped over the bowl, I spoke a soft, "Hello?" Then I said, "Hel-loooo?" more loudly.

I heard Heather's timid voice reply, "Yes?" (Was she sitting in the room the whole %@#!$%* time?)

"Uh, Sylvester went off to get me some ice water and I don't know where he went. Can you just pour me a glass of water from the tap, then CLOSE THE DOOR so I know I'll have total privacy for a while? For like a long, long while?"

"Oh, sure," she said. I heard the tap running in my room. Her hand reached inside. I grabbed the styrofoam cup. She clicked the door closed.

Peace. I began reading the New York Times. Anything would have sufficed, even the phone book. I relaxed. My own private space.

The door swung open. It was Sylvester. "I almost forgot your water, man! Here's your . . . hey! You got a water!"

"Yes," I said.

"You want me to take that one away and leave this one?"

"No, that's fine. Just leave them both. Everything is perfect. Perfect, perfect. Thank you."

He took a step back and seemed to assess my vulnerability for the first time. "Ohhhh, I see. Awright. I got you.” He leaned in conspiratorially. “Don't you worry. I got you covered. I'll be right OUT-SIDE. No intruders now, heh HEH! You have yourself some PRIVATE time here, heh HEH!"

I said, "Just a closed door. Just silence. Thank you so much." I smiled and closed my eyes in peace. I was so ready to go number two so naturally right then. I was almost ready.

Sylvester added, "You know, and don’t you worry about that catheter, about that tube hangin' all over the place. It may go this way and that, but don't you go feelin’ like you peein' all over the place. Heh HEH! It could wrap around your leg like some barbershop pole and make no difference!” He snickered once more—“Heh HEH!” and closed the door.

Now I had that to think about. The barbershop pole around my leg dripping urine. My strategy for number two has always been consciously to release number one first, then number two. In order, by my command. With the catheter, I had no way to will anything to be so.

I heard a whisper. "Hey Al . . . Al . . . AL!!" It was Sylvester from the other side of the door.


“All clear. Just you and me. Do your thing. Nothin’ but time.”

It was never going to end. I finished the article in the New York Times, and, true to his word, there was nothing but a long, respectful silence from then on. But I never knew if I was alone. The only way to confirm this would be to whisper out the door, but that might strike up another conversation with Bagger Vance out there. I tried drinking the water. Nothing.

I was out of options. I stood up, tied my gown, took my newspaper, flushed the toilet, and pulled the emergency call string.

No response.

I used the handrail to guide me in my dizziness to the door. I opened it. It was dark and no one was on the other side. It was four feet of open floor space to my hospital bed. I steadied my hand on the wheeled IV pole, pressed it into the ground for stability, and took the few steps to get me to bed. I made it. A moment later, Heather came into the room.

“You made it back to bed!”

“Yes,” I said.

She rubbed one index finger over the other. “I’ll give you a symbolic bad, bad, mister!” she scolded. “You shouldn’t do that by yourself.”


“Any luck?”

“No, not this time. But thanks for helping.”

She hooked up all my tubes again. “Ready for sleep?”


She walked to the cabinet and opened the safe. She withdrew another Norco pill and a syringe filled with Dilaudid. The room was dark and I could see her glistening eyes pierce into me as she approached. She was no ingénue anymore, I can tell you. This was an adult woman, a professional, trained nurse with intent. As she traversed the darkness of the room I imagined hearing only the click-click-click of her heels as she approached. High heels. I drank down the pill. She injected my IV and soon I felt the cool liquid spread up my right arm. In a moment, the drug was in my brain and the walls melted while electric hydrangeas bloomed. I could have gone to the bathroom right then, perhaps, but I fell asleep.

Thursday, January 26, 2012

Early Blog #9 (Spirit Animals)

This is one more blog from two years ago, in the weeks after my first brain surgery:


Wednesday morning, nine days after brain surgery. I woke up this morning around my usual time, just after 5am. I felt the need to get up, go downstairs, see to Noah, putter around, get a few things done. MJ was reading in bed and sensed me stirring.

“Stay,” she said. She clicked off her reading light and curled up next to me.


She was right. As I lay flat on my back, awake, I felt new equilibriums shifting in my head, getting bearings as my mind floated thoughts in the eddies of the new spinal fluid in my head. I thought about things. She fell asleep under my arm and I lay awake for another hour, just thinking. It was nice. I needed time like this before jumping out of bed.

MJ is the guardian of my solitude, something I consider the most important thing in a marriage. Honesty and trust come before true love, actually, and these are all built on the foundation that one spouse will basically work to protect the other. It’s such a simple thing, but so many people get it wrong: the notion that you have the responsibility to watch over your spouse and that you can accept being watched over as well.

I have felt this kind of kinship with spirit animals too and WAIT! . . . if you are going to stop reading because I wrote that, please give me a chance.

At key times in my life I have experienced unbelievable moments with animals that appear to watch over me, completely out of a normal context. Something in the natural order of things puts unusual wild animals in my path at turning points in my life.

Growing up, we had a wood statue of Francis of Assisi, known as the patron saint of animals, inside our house. My mother talked to me about St. Francis often, about how much animals meant. The statue must have been about my height as a boy, maybe three or four feet tall. The wood was old, cracked, and much of the paint had chipped off. He stood indoors, palms facing up, and various wooden animals were attached to him. We were moving to different countries all the time, packing him up and unpacking him, and while living in Caracas I think one of the birds on his hand broke off so just a nail protruded up from his palm, making me think of stories I heard in school about Christ and crucifixion.

Living in Melbourne once when I was about seven or eight, my father took us on a day trip to Kangaroo Island. I sat on a log there, eating a piece of bread, thinking about an instrument I had just taken up a few days ago — the oboe. I liked playing it but thought it might have been a mistake because it sounded so terrible. I only knew three notes (G, A, and B, the left hand notes) and the low G squawked every time I tried it. I knew special arrangements had been made with the school to get this oboe for me and, even at that young age, I felt shouldered with a responsibility not to give up right away and see things through for a while.

Wild kangaroos approached me. They wanted the bread in my hand. I waved it in front of them. Several more gathered around, including a young mother with a joey poking his head out of her pouch. I moved my hands back and forth the way I imagined a conductor would and all the kangaroo’s heads followed the bread. I thought it could be fun to be one of those kangaroos, to sway in unison, just following a piece of bread perfectly. I tore the bread into pieces and fed the kangaroos. Before leaving, one stopped, looked straight into me, and went away.

Unbeknownst to me, my father had been snapping photos of this. This picture of me conducting kangaroos at the moment I decided to become a musician has been published in newspapers, and I have it framed in my house. I don’t recognize the boy in the photo anymore, but I know it is me.

Other times, animals appear just as I make a change in the direction of my life. They arrive out of the blue, like punctuation marks, a reminder from the natural world that a certain decision has been made. When my first marriage was breaking up, I knew it was over when a fox curled up and spent the night on my front porch. It was Christmas morning, and I went outside to fetch the paper when the fox was just there. It startled me. The fox woke up, looked straight into me, then trotted away into the woods across the street.

I thought maybe the fox was sick, so I dialed the number for the local ASPCA.

“You saw a fox?” they asked.


“You live next to woods?”


“Okay . . .”

I said, “It was curled up, sleeping on my doorstep. Maybe it needs something. Tuna fish?”

“The fox is not there anymore?”


The person answering the phone was not happy. She said, “I’ll make a note you saw a fox.”

“Okay,” I said, then hung up. It was another sign. The way the fox looked straight into me before leaving was the same as the kangaroo. It said (to me), “You’ve thought about this long enough. You know what you’ve got to do.”

Another time more recently, a few months after my mother died, I was driving home from the airport after my first solo flight in an airplane. Aviation was a fantastic new passion of mine, a way to believe in myself again, and I was on such a high. I flew a plane by myself! As I turned the corner to come the final mile to my house, a fox ran across the road in front of the car, and I had to hit the brakes. The fox stopped in the middle of the road, looked straight into me, and continued on. I had not seen a fox anywhere since that time ten years earlier.

Even more recently than that, this past Christmas MJ and I spent a quiet few days at our cottage on the lake. It is so cold and desolate up there in the winter, such a wonderful place to be alone with your thoughts. This might have been the first few normal mornings where we were alone, taking in the serenity around us. I thought about things, about turning points in my life, and what things would be like going forward now.

Running across the ice out the window I spied a pair of coyotes, so common in the area you hear them howl at night. I heard them all the time but had yet to see one. I checked the cottage security webcams for an instant replay, but the image was grainy. A few more times, this pair of coyotes ran by, about every half-hour or so, but they were too far away to get a good look. Finally, I sat in a chair looking out the window with a pair of binoculars. On their next pass, I focused on a face. At this moment it stopped running and looked straight into my lens. Now I could see vividly: the red fur and pointed ears standing out against the bright white of the ice. This was no coyote.

It was a fox. Actually, it was two foxes now. They stopped, looked directly at me, and left. I have not seen any since.

It hasn’t always been foxes. After my recent series of eight MRIs, which took almost four hours in the middle of the night, I drove home, my body sore from lying motionless that long. Driving through the suburbs of East Grand Rapids in the still of the night, my headlights shone upon a white flicker bobbing in the road in front of me. A tail? I came up to it fast and I had to hit the brakes.

It was a doe, a beautiful one. In East Grand Rapids, no less. As my car came to a complete halt, the doe stopped, looked straight at me, and walked casually into someone’s yard, miles and miles from any woods it could call home. It looked into me again, with kindness I felt. Before the MRI results came back a few hours later, I already knew I had a brain tumor. I just knew it right then.

Finally, at the beginning of this past summer, I had decided to stop writing a piece of music I could not finish. It was my first major commission outside of my home orchestra, and (perhaps already suffering from this tumor squishing my pituitary gland down to nothing) I could not go on with it anymore. I wasn’t a composer, and maybe I never was one.

I was at our cottage with MJ, sitting on the porch with a glass of wine. I said, “I’m going to write that email. I’m done. I don’t know what’s wrong with me, but I can’t put the big pieces together. My head just doesn’t work like that anymore.”

She knew this had been torturing me for months, and she was more relieved than me to finally hear these words.

“Okay,” she said sweetly. She patted my knee and went inside. As the screen door swung shut, I sat alone outside with the finality of not being a composer ever again. I stared at the sky.

A bald eagle flew over my head, one with full adult plumage. Bright white head, long white tail feathers. Beautiful. It flew so close I felt I could touch it if I reached high enough. There is a family of bald eagles that live nearby, and the adults and the three juveniles often patrol the area. So I had seen them before, but never an adult so close like this, just for me.

It did not look at me the way my other spirit animals have done. I thought it might be somewhat pissed off, actually, the way it flew so close without taking the slightest notice of me. When I get that special look—from foxes, kangaroos, or does—I know my intuition is right. But this eagle simply soared straight over me. It was protecting me in my space, telling me to stay in a holding pattern for just one more day. So I didn’t send the email I had already composed in my head.

The next evening, MJ and I sat on our deck again with a glass of wine. I still hadn’t composed anything new, but I was thinking about things in a different light.

Out of the blue, I said, “You know, I have hundreds of pages of notes. So many ideas I simply can’t throw away. I still have time. Maybe it won’t be the best piece ever written, but I’m going man up and get it done.” I didn’t know exactly how this was going to happen, but I felt a seed inside me that never lets me down. Even, in retrospect, if I already had a large tumor causing trouble in there by this point, I knew this piece was as good as finished, with only a few months of scribbling in front of me.

“I like that,” MJ said. “I like that answer a lot. Good for you!”

She patted my knee and went inside to check on dinner.

I waited for the eagle to come by again, this time looking into me, telling me something like, “Told you so,” but it never did come back.

Tuesday, January 17, 2012

Early Blog #8 (Peppers)

Here's another early blog of mine from over two years ago:

TUESDAY, OCTOBER 13, 2009 7:00 PM, EDT

Tuesday afternoon. Until this moment, I have been supervised since my surgery. I feel fine as long as I stay horizontal, and even though I should probably be with someone around the clock for the next few weeks I had no problem sending MJ off to rehearse downtown. My post-op instructions actually encourage me to make reasonable attempts to try a few normal things from time to time, as long as I can easily get back to a couch.

Plus, I know how to dial 911.

She kissed me goodbye a few hours ago and said, “Stay put, right?”

“Right. I’m on the couch. Got my book, and thank you notes to send.”

“All right.”

When I heard the garage door close, Noah began whimpering. His dinnertime was still an hour away, but I wondered if he needed to go outside. He didn’t. Maybe I needed to go outside.

I went out the back door into the cold air. A few feet away, our raised bed of pepper plants looked completely withered and pathetic, hit with a few nights of freezing temperatures so all the leaves now drooped lifelessly with a sickly dark green. The peppers underneath, however, were more robust and could withstand a few nights of cold before they too begin would begin to rot. Peppers are my favorite vegetable to grow (you plant them once and leave them unattended for months) and I did not want to let a year’s crop get away from us because of some dumb brain surgery.

Before my operation, I planned on harvesting all of them — maybe the day before as a kind of new-age spirit-building experience — but my stamina weakened so much I put it off indefinitely. As I inspected the dead plants now, I saw I still had a chance. A few peppers were gone, but so many were still good.

The raised bed is 4 feet wide by 8 feet long, with one large plant every square foot. 32 total plants, 8 different varieties. The benefit of growing them yourself (especially hot varieties) is you never need to buy them at the store, and you will be stocked all winter with as much as you need. Frozen hot peppers are so easy to pull out of the freezer, chop up, and throw into a pan with onions, garlic, or ginger, and that creates a base for most of the great, zippy recipes MJ uses to form the staple of our late dinners.

The hard part is keeping track of the hot ones versus the sweet ones. Every year I begin with a system marking the plants, knowing which long peppers are mild, better for salads, which do better adding zip to soups, which fry up better, which go better on my pizzas. It seems easy in the beginning, but by the time harvest rolls around they always end up in the same bin, looking so similar to one another. They are sorted instead by size and shape, mixed in together, put in Ziploc freezer bags, and then the rest of the winter MJ and I enjoy what is basically a pepper heat lottery.

A recipe of Mexican scallops she makes often with lime, cilantro, and peppers is sometimes pleasantly mild, and sometimes so bracingly hot it can be hard to swallow.

“I only put two of those little ones in!” she would say. “Last time I used six bigger ones and it still wasn’t enough.”

“It’s fine, it’s fine, I love it,” I always reply. And I mean it. I do love it both ways. I have a high tolerance for heat, and it is good for my blood pressure anyway. It’s fun. Food you grow for your own consumption is food for your soul.

As I inspected the 2009 crop, which had perhaps another few days before complete annihilation, I decided to harvest. I felt completely fine. I was rested and strong. In ten seconds I could be inside on the couch if I needed to be. To completely safeguard, I took the phone outside with me, made sure I saw the numerals 9-1-1 clearly, then took the shearers out of my pocket and clipped the first pepper plant at the base and turned it upside down. One by one, using this method, the peppers revealed themselves by popping away from the dead leaves draping around them. So many good peppers get lost in the shuffle if you don’t do it this way. In no time, I had filled two baskets and I brought them inside. I felt okay, then went out and filled another two baskets. A little dizzy this time coming in.

Now Noah was standing by the door, so I put him outside. I took the shearers out with me, clipped and harvested all but the last four plants, which were Thai pepper. Noah roamed the yard on his tether, not doing anything in particular, just wanting to enjoy the cool air. I was quite dizzy now, I realized. Time to stop.

I brought the peppers in, steadied myself, and went back out to see Noah. He was sitting, surveying his territory peacefully. The four Thai plants at the end of the raised bed still beckoned to me. They were large plants but yielded tiny peppers which are the most labor-intensive to separate, so I simply clipped them at the bases and brought them inside to deal with later.

It was now time for Noah’s dinner, so he came in and I fed him. As he chewed his rawhide dessert, I relaxed and lay down horizontally in my safe position. I dangled the Thai plants over my head, admiring the red and green slivers revealing themselves to me like lit ornaments on a dwarf holiday tree. I clipped the tiny peppers away one by one with scissors so they fell on my chest. It was not strenuous, just peaceful feeling those hot drops against my heart. Before long, everything was done: dead plants in one pile, and a few generous handfuls of tiny Thai peppers in another pile. I sat up, picked out the remaining dead leaves and put these potent little heat bombs in with the rest of the pepper harvest, sorting everything by size.

The hot ones and sweet ones are once again mixed together, so this winter will be another fun adventure with unpredictable pepper heat. I’ll make the same mistake in sorting them next year too. It’s one of the ways I enjoy my life.

Friday, January 13, 2012

Brief Candle

Some things have been weighing heavily on me lately. I haven’t written because (for once) I don’t know quite how to address this topic. But it is growing inside me, taking me over, so in the spirit of my blog I must write it down.

Ever since my diagnosis, I have approached healing as a kind of extended improvisation, a lone player on a stage stringing phrases together as new challenges crop up. I have never met or spoken to another adult patient like me because we are so rare, a few hundred cases per year. Every once in a while I search the web for craniopharyngiomas, but mostly I am led to dry medical studies, not actual patients.

A few weeks ago, this changed. I joined a support group.

In the privacy of a closed group I can read about and communicate with others who have my same condition. As a “one-of-a-kind” patient before, I felt the freedom to make fun of myself as a way of coping. This allowed me to dive back into normal life. But when the tables are turned—when I read about someone else with the same condition—my heart crushes.

A thornier issue is that my support group gives me further insight into our bumpy lives ahead. I can peer into my future. I’ve been getting used to everything for just two years, but now I can talk with people who have lived with it much longer, saying things like, “Oh, I’m on my seventh brain surgery,” as if amassing surgeries were the same as collecting baseball cards. After a while, I suppose it gets to that point. You grow a tough outer shell. You get used to hospital stays every few years, all the needles and beeping machines. You make another notch on your belt and then wait for the next one. I’m not ready to go there with my thoughts yet, but now I see it around the corner.

When I saw the tributes for the children in my group who had “earned their wings” in the past month, I lost it. As I scrolled through the pictures—images I would never show MJ or anyone else—my first reaction was to want to trade places with them. I would, in that instant, have given my life so one of the other patients could have lived. But when I really think it through, I have to wonder if trading one patient for another makes much difference, or any sense. It’s apples for apples, and we all live through the same things, going at it our own ways, finding our own highs and lows along the timeline. I guess what I felt was a primal drive for brotherhood or sisterhood. I wanted to show compassion and solidarity. Then I wanted to feel it right back.

I know how serious things are with me, but I also know my condition is anything but hopeless. If anything, I’m the lucky one in my group wrestling with survivor’s guilt when so many others are saddled with obesity, blindness, heart conditions or adrenal crises. So far I have kept these side effects at bay while I improvise my part upon the healing stage, strutting and fretting with all my sound and fury, surely signifying something.

Tuesday, January 3, 2012

In Sickness and ...

Oh my God. I am enduring one of those horrible nights again. Writing at 3:52am is my last resort because I can't do anything else. I can't lie down and stay still. I have no energy to wake up. My body is chilled and sweating at the same time. The light of my laptop soothes me.

I made a pot of green tea at 3:52am because it sounded good. Hot liquid going down my throat feels nice. I don't know why I want green tea. Every once in a while a loose strand gets in my teeth. I chew on it and swallow. It feels like a blade of grass in the springtime. The green bitterness gives me life somehow.

I continue to bat 1.000 for getting majorly sick upon returning home from any trip away from home since my brain surgeries. I have not gotten sick during trips, only when I get back. It's like I am in survival mode on the road, tapping my reserves (and looking normal), but when I walk in my front door everything releases. My body turns on me and punishes me for putting it through those tests. A year ago I had pneumonia after coming home from a few days on the road. After Cabrillo last August my body completely shut down for several days.

Two days ago, after returning home from the Christmas and New Year's break, I felt the slight hint I could be getting sick. The trick with hormone replacement therapy is to switch to a "stress dose" when you sense this happening. I did this, but yet here I am. On the plane ride home, everyone coughed. The seats felt dirty, I was tired. The terminal at Newark had pigeons wandering about. Pigeons.

I know how this happened. It's the Diabetes Insipidus (DI). Managing a correct "breakthrough" every day is taxing, both mentally and physically, but it is critical to my health. To do it right I need several hours where I manage the breakthrough on my own. My DI is extreme, and when I sense it coming on I keep drinking water to stay hydrated while I make repeated trips to the bathroom, about every ten minutes. My thirst catches up with me and then I can only drink ice water. After that, water itself repulses me and I switch to icy club soda with either a splash of citrus or cranberry juice. The acid and the bubbles are the only thing to simulate thirst quenching for me as I continue to make trips to the bathroom.

Finally, after a few hours, I know the breakthrough has reached its peak. I know this because my legs buzz. There is a tingling sensation in my legs, a whooshing upwards just as I urinate one more time in the bathroom. A doctor has suggested this is me sensing my lymph nodes draining. That sounds weird to me. Anyway, my legs buzz, and when they do I hit the nasal spray which stops everything at once. But if I hit the nasal spray too soon ... it's 18-24 hours until I the next breakthrough. Anything I wanted to flush from my body will be stuck in there for another day.

That final draining—waiting for the legs to buzz—is something I just sense as the right thing to do, to stretch out the breakthrough that long. When I don't get to that point for a few days in a row I start to gain weight, feeling bloated and sick. When I string together many days of a complete breakthrough I feel spry and healthy.

When traveling, it has been virtually impossible to manage a DI breakthrough correctly. Plane delays and long layovers make it impractical to run in and out of the bathroom for those hours. I had one complete breakthrough during my vacation. I know this because I remember pawing through the fridge looking for club soda or Pellegrino, then raiding the bar for cranberry juice. It was one day out of five. And on the way home we encountered travel delays in an enclosed space with everyone coughing on me. I tried to stave it off, but my immune system—unless it is in pristine condition—can't win matches like that.

Well, it's 4:36am. I hate that, when you look at the clock and you think more time had elapsed. I wish it were two hours later, the sun coming up. I started writing this at 3:52am, so ... are you #@%&!* kidding me? Only 44 minutes have gone by? I'm making another pot of green tea, the hot liquid on my throat the only thing that can soothe me now.