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This is one more blog from two years ago, in the weeks after my first brain surgery:
WEDNESDAY, OCTOBER 14, 2009 9:50 AM, EDT
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.
“Okay.”
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.
“Yes.”
“You live next to woods?”
“Yeah.”
“Okay . . .”
I said, “It was curled up, sleeping on my doorstep. Maybe it needs something. Tuna fish?”
“The fox is not there anymore?”
“No.”
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.
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.
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.
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.
I just returned from my appointment with the retinal specialist. I can barely see the screen because my pupils are dilated. So this will be short.
There is no more fluid behind my right eye causing the retina to partially detach. Last time the chorioretinopathy bloomed (about six weeks ago) the red dot splashed across my vision, then faded for the next few weeks. There is no more fluid, yet I still see the (smaller) red dot.
Diagnosis: scar.
I hope the scar (or tear mark, or whatever) will heal over time. Until it does, the optical illusion of the red dot will be there. [Rats.] This might be a while.
As for my eyepatch and flashing lights, the fact that I only need it later in the day should have been a clue. I talked for a long time with the doctor about this. Fatigue is the culprit. My right eye has minor damage now, so it will show signs of fatigue (the throbbing and then shocking pain) before my left eye. The right eye just gives up now as if it were the loser of a nightly Survivor challenge. It slips and falls, allowing the left eye to claim the immunity idol.
So my orders are to decrease stress and get plenty of rest. Taking two aspirin and calling him in the morning was probably implied too.
Almost done posting my old blogs. This is easily one of my favorites. This was written over two years ago:
TUESDAY, OCTOBER 13, 2009 8:03 AM, EDT
This morning (Tuesday) I still woke up first, but I was smart. Last night, MJ helped set out my morning comfortable outfit right next to the bed. Noah's pills were sorted and ready to go in a dish. I had located his Kong toy and had that set out already too, filled with peanut butter. So when I arose at 7am, I walked carefully downstairs, retrieved the paper from the front porch, took care of Noah without needing to look for anything, and went straight to the couch to lie down, do the crossword, and begin typing this without getting dizzy.
I am starting to love this journal, finding it is a way to put myself back together after such a scary journey. Nothing but down-time, nothing to do, and nothing you are SUPPOSED to do is a new experience for me. Again, it is the little things I must let go of for the time being, and it gives me a new clarity about my big picture. I don't fret about the second-by-second unfolding of my life right now.
The few days leading up to the surgery are still fresher in my mind than the days after the surgery. From midnight to 3:30am on Thursday, October 1, I had eight different MRI tests. A few hours later, at 8am, I got the call with the news about the "mass" under my brain, and surgery was quickly scheduled for the following Monday due to the tumor's size and how quickly things were changing with my vision.
With nothing but a few facts to chew on and an Internet connection, I naturally spent the following days secretly googling everything I could find. Googling things you barely understand is bad for your health, and it is also how bad political blogs get started, by patching together bits of truth that don't quite match.
My biggest fear was there was some kind of conspiracy about the simple nature of the operation. The removal was supposed to come out through the nose (which it did) but I worried incessantly that something would go wrong. The tumor was already unusually large for the area. It wouldn't fit out my nose. They would have to do an emergency craniotomy and cut the front of my forehead off, push my brain to the side and retrieve the tumor that way (the way it used to be done). I had nightmares about this.
When I arrived on Monday for pre-op, the first thing I was given at check-in was a standard sheet to sign where the top had been filled out in handwriting with the procedure I was agreeing to. The sentence read, "Transphenoidal approach and craniotomy for tumor removal."
Being a stickler for spelling, I did not appreciate (right off the bat) that "transsphenoidal" was spelled with only one "s." On top of that, why was a craniotomy mentioned? My nightmare was unfolding before me. As I glared at the sheet, someone approached me and asked for me to come out of the waiting room and into pre-op.
I said, "I have a question, and this is a big one. It says 'craniotomy' on this form I'm supposed to sign. That's where they cut your head completely open. They didn't tell me that."
The raucous waiting room fell silent around me like in those old E.F. Hutton commercials. MJ, who hadn't seen this yet, looked up from her book.
"Don't sign it yet. You can talk to the nurse about everything and have ALL your questions answered."
"Okay," I said. I was completely ready to bolt, go home and start over again with another opinion, but I saw no harm in walking to pre-op and talking further with someone more knowledgeable.
I was escorted to a private cubicle surrounded by curtains and sat upon a comfortable hospital bed with pillows. I took my clothes off, put on a hospital gown and waited, the unsigned form clutched in my hand.
A friendly middle-aged nurse entered, bearing a wide smile and nurturing eyes. She said, "I understand you have some questions, and we can talk about anything you want, for as long as you need."
I explained my concern for the word "craniotomy." I was not ready to have my head sawed open. No way.
"Well," she began, "a 'craniotomy' is actually a broad term for anytime they go inside your head. You are having a transsphenoidal approach, going in your nose. They have to make a tiny puncture to a small eggshell-thin skull bone in the back of your sinus cavity. Because of that little puncture needed to go inside to get the tumor, it falls technically under the BROAD term"—she held her hands far apart—"for 'craniotomy.' It's just a term."
She spoke so carefully, smiling all the time, looking so deep in my eyes.
I flapped the paper in front of her. "This doesn't mean they're going to cut my forehead off?"
"No."
I trusted her. We talked about other things. She asked me questions about medicines I took, whether I smoked, drank, used recreational drugs, feared for my safety at home, and general questions about what kind of life I led. I felt better. I signed the form. She brought my wife in to sit with me and began setting up an IV.
The anesthesiologist made an appearance and asked me questions. A lot of questions about what would make me comfortable during the wait.
I cut him off with, "Look, anything you want to give me is FINE with me."
He made his hand into the shape of a toy gun, playfully pointed it at me, and squeezed his thumb trigger while smiling. The nurse left with him and in a few minutes she was back holding a syringe.
"Fentanyl," she said, and put some into my IV.
I didn't know what this was, but it sounded good. I was still nervous, even if the conversation had calmed me down. In a minute, I was flush with euphoria. I wanted to hug everyone in the world. I was so happy! Love was everywhere, big red hearts popping out of the walls.
A friend had also joined us by now, and the four of us rejoiced, laughing about things, about the mysteries of life, how little we were when you compared that to the size of the universe. It was the best time of my life.
"We should totally buy a boat!" I exclaimed. "We could all live in a boat from now on. All four of us from now until forever. Why not?"
"Sounds great."
"With llamas," I added. "No one ever thinks about a boat with llamas."
MJ said, "You could scrape them in the winter to get wool to make sweaters if it got cold."
"Yes!" I exclaimed. "It's so OBVIOUS! We could all live on the boat with the llamas and make sweaters!" I eyed the syringe now sitting atop my blanket the nurse had only half-dispensed into me.
"Damn, woman!" I added. "You holdin' out? You an' me gonna get hooked up after this, you dig? You gonna be my CONNECK, ya hear?" I pointed between MJ and the nurse. "You two get hooked up, okay? That right there!" I pointed again at the syringe.
The nurse picked it up and slipped it safely in her blouse pocket.
"Oh, man," I said and leaned back, dreaming of our life on a boat.
I wondered again about the word 'craniotomy' on the form. I thought it might be cool after all if they sawed my forehead off. They could put a hinge on top and I could flip it open and shut at will. At parties, I could say, "I want to give you a piece of my mind," then flip my head open to get a reaction. Fun, fun, fun!
In another short while the anesthesiologist came in again and gave me something else. The nurse also put in the rest of the Fentanyl. I laid back again, looking into the sweet female faces surrounding me. I closed my eyes in utter bliss. If I didn't make it out of surgery alive, I had already lived a blessed and wonderful life.
This blog from two years ago generated plenty of interesting comments at the time. The days following my first surgery I was compelled to write about some heavy stuff. Here it is:
TUESDAY, OCTOBER 13, 2009 12:06 AM, EDT
Monday night, late. Having trouble sleeping. I am doing my part by staying horizontal most of the time. My pain is still very present in the form of headaches and body aches, but it is more predictable and manageable than before. The pills they sent me home with do the trick for the meantime. I know when the pain is coming and I can stay ahead of it. The dizzyness is getting better and my vision is (miraculously) almost back to the pristine state it had been in when I aced the vision test for my pilot license. I can see colors again now, vividly.
Laying flat with nothing to do all day gives you plenty of time to reflect. On the Friday before my head surgery I needed to be cleared with a general physical to see if I could make it through such an invasive procedure. It was basic stuff like blood and urine tests, an EKG, blood pressure (high, as usual) and going over all the prescription medications I currently took to help with hypertension and asthma.
The most interesting part of the physical was the check-box questions you had to fill out. I had one sheet I worked on and the doctor had his own sheet. He asked a lot of the same questions.
"Tobacco user?"
"No."
"Alcohol?"
"Oh, yes," I said.
The doc looked up from his paper to study my response more closely.
I pointed to myself. "Musician," I said.
The doc checked the box and asked, "How much?"
"Two, three glasses of wine with dinner."
"Okay. Any more than that sometimes?"
"Usually," I said.
I imagine he put a star by that one. Then he moved on to a series of questions about my home life. Did I feel in danger at home? Physical or emotional abuse a constant worry, perhaps? There were several questions which came at this subject from different angles. I could have had a field day with this line of questioning about fifteen years ago, but things are great now so I answered, "No."
"Any thoughts of suicide?"
"No, not for a while."
He studied me closely again.
I said, "It's a no. Just check the 'no' box."
I must have been in some kind of a mood to play with that one. But, in reality, as I drove away from the doctor's office to do my final duty at a nearby lab—peeing in a cup—I thought the answers to these 'yes' and 'no' questions were so over-simplified.
No more than a few years ago, when my chronic pain issues from a botched hernia repair surgery overcame my body so completely, I found myself on our porch, an ice bag over the surgical incision and a pain pill in my system doing no good. I had my laptop with me and, more out of curiosity than anything else, I typed "suicide" into the Google search engine. I just wanted to see, nothing more. I felt trapped in a world of pain.
I had spent years already pursuing every way out of this and could not imagine the rest of my life being the way it felt on that very day. I wasn't even close to snapping; I was just curious what people did when they eventually reached a point where they could not go on. I just wanted to know what the protocol was, how you were supposed to go about things if such and such never turned around for you.
The web sites which came up right away were, of course, not instructional but interventional. "Visiting this website is a BRAVE and POSITIVE step. You are ACKNOWLEDGING you need help, and here are all the ways you can get it, etc.."
MJ came out to sit on the porch with me that afternoon. She knew it was a bad day for me pain-wise and she had been making me a bowl of freshly cooked chickpeas drizzled with olive oil and sprinkled with fleur de sel and cracked pepper, one of my favorite surprise snacks. I erased my browser's history, closed the laptop, and we sat and talked while I ate the chickpeas and felt ice melt over the tangled nerves at the spot of my hernia repair.
Another time, in eighth grade, I brought home a report card with a C-minus in Human Development. (I think the course was called, "Discovering Me," actually. It was basically sex-ed.) Worst of all, this C-minus dropped me into the second quintile in my class, an unheard-of shame in my household. When my mother would see this at dinnertime I knew a) she would probably kill me, and b) my father would not stop her.
I had nowhere to turn. After arriving home, I took a glass of tap water into our utility room in the basement where tools and miscellaneous cans and jars were kept. I found something with a poisonous skull and crossbones on the side. I opened the drip spout on this container and watched a small, solitary drop fall into the glass of water. I swirled the glass.
"Oh, God," I remember saying.
My hand trembled so hard I could barely get the glass to my lips. I took a tiny sip, then doubled over, crying and spilling the rest of the water on the floor. I knew I had just done it.
My brother came downstairs and we proceeded to watch the one hour of television we were allowed on school nights before homework: a half hour of Gomer Pyle, USMC (my favorite) followed by a half hour of Get Smart (his favorite). As the shows aired, I wondered how it would happen, how I would die. I imagined something sudden, like the birthing scene in "Alien" where my chest would break apart with guts spilling into the room. But of course nothing happened.
Dinner, even, was quite tame. After the salad, my mother picked up the report cards, surveyed the grades, looked me over sternly when she saw the C-minus, then put it down without comment.
The next day in class, I asked one of the most popular boys how he had done in "Discovering Me."
"D-plus!" he said triumphantly. "Fifth quintile." He clenched his fists and pulled them repeatedly towards him as he pumped his hips. The rest of the class took notice and egged him on.
The truth is, as good a student as I was at the time, I more than deserved the C-minus. Not yet aware of my own dyslexic tendencies and how to overcome them, I had run out of time on a paper and resorted to plagiarizing a whole paragraph, something I had never done before nor since. The teacher surely knew this but did not call me on it. The C-minus should have been an F, and I knew it. A deep shame about the sanctity and sacred quality of one's own work crept into me that day and has never left.
So it is, indeed, silly to check boxes, defining your life as a series of 'yes' and 'no' answers to questions that are rather blunt. It is so much more complicated than that.
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