February 2014 - My Brain Cancer Diary

Voices

Write the truth. That’s my job, if I have one. Write the truth.

It is sometimes hard to believe I started this blog only a couple of weeks after my surgery. My urgency to witness this life seems so remote now. While once I felt a sacred duty to tell my story, for posterity, I now look back on the writing and find it variously weepy, flippant and overwrought. The facts have been justly served, but the truth—that ringing truth—is still missing.

In forecasting my book, I’ve maintained that it will be a “compilation of my blog material.” I’ve found it easy and convenient to be comforted by that blanket of material, imagining the task as a stitching together of old posts. Yet in reviewing the work, I can’t escape the feeling that it’s not mine. It’s not me. My voice was lost. Rather, my voice changed as my perspective changed. My writing hasn’t kept up.

Thus, a strategy of stitching a book together seems as unproductive as one of those sitcom episodes composed almost entirely of clips from earlier episodes. One suspects the writers took the week off. Compilation is not necessarily bad. This is, after all, a diary. And what is a diary but a compilation of days continuously molted and serially disowned?

Would old posts be abused in revision, for events to be re-imagined? Would the reader be misled? Yes and no. As my feelings about the past evolve, meaningful details emerge from memory and supplant what seemed important yesterday. Somehow, despite the inevitable erosion of accuracy, I dare say the new voice sounds more honest.

Consider how my voice has changed as I’ve written and rewritten the “scene” in which my tumor is discovered. This is, word for word, my first post (from May 25, 2011):

On Thursday, May 5, 2011, at about 4 a.m., I woke with a terrible headache, climbed out of bed, crouched before the toilet, and vomited. In a moment, my wife was beside me. She insisted I go to the emergency room. I took a cab to Maine Medical Center while she stayed home with our son.

A CT scan revealed a golf ball-sized tumor in my brain. It was removed the next day, Friday, and I went home Saturday.

Since then, my condition has been improving. I feel relieved of the suffocating depression that had plagued me for months. But it remains almost certain that my gliosarcoma, a malignant brain tumor, will recur.

This is the story of my new life.

This recollection was fleshed out four days later, in a post that added some emotional reflection. This is an excerpt:

More sitting and waiting, then a wheelchair arrived to take me to the CT scanning room. Granted, the hospital is like a maze and it’s easier that way, but I was surprised to be treated like cargo. I would have to get used to it.

After a brief scan, the technician said causally she had “found something” and would scan me again after a contrast dye injection. It is hard to describe what I desired or expected at that moment. Not a malignant brain tumor, perhaps, but something real, an explanation. I was frightened and relieved at the same time.

About 18 months later, I revisited the conflict of being “frightened and relieved at the same time.” Here the emotions are stark and the conflict evident:

“We found something.”

Good. No, not good. I don’t know.

A part of me—a wretched, contemptible part of me—rejoiced in those words: a little part of me that was utterly lost within the mystery of my clouded mind and failing body. That part broke down and cried and held the words close and dear: an answer to the doubt, a reason for the suffering, a something.

Another part of me, a sensible part, spurned such relief. It is better to find nothing, of course, than to find a thing of interest to the technicians who had scanned my brain. A “thing” is a mark, a blotch, a sign of disease within the very vessel of my humanity, a mass, a tumor, a malignant tumor.

So with relief and self-disgust and fear and hopelessness I returned to my wheelchair and was taken back to my bed in the emergency room. I would struggle with this “thing”, of course, but also with the emotion that seemed to welcome it, that condemned me twice for the crime of wishing it were true.

Recent re-readings of that material highlighted the melodramatic tone. It was more honest in some ways and less so in others. I did struggle with the apparent incompatibility of a feeling of relief with a discovery of cancer, and it was important to say so, but the emotions were projected in hindsight. I did not literally cry, and I don’t believe the emotional context was as palpable as the writing suggests.

Here I tried to reintroduce details that would support the emotions: a “show, don’t tell” approach:

“We found something.”

A woman’s calm, sterile voice announces this discovery. Her assistant in the CT scanning room at Maine Medical Center, a younger man, gapes as if I’m a ghost.

Anxious moments pass. The world still turns. I’m waiting for a wheelchair to return me to my bed in the Emergency Department. Bad news is waiting, too.

Smalltalk now. Here we go accounting our wards, as any two parents might, to kill time, or torture it. Hers is fourteen, my boy’s seven.

She’ll be wise to forget the image, I expect: the egg-sized blob squeezing and swelling my brain. My tumor. My homewrecker. I’ll see it soon.

For the months of imbalance, numbness and confusion: a cause. And from this reckoning: relief, at the cost of life and a demotion, from human to human object. Here’s the wheelchair now.

The honesty in this excerpt comes from a sense of presence. I feel it conveys to the reader a sense of what it was like to be there, of the surreal intersection of the threat of death with the dullness of another day at work.

More honest than before? Yes. Still, it’s unsatisfying: tight at the expense of fluency. But perhaps that’s a matter of style which simple effort will resolve. I take encouragement from the voice. The voice is what I expect to sustain me in this task. The voice is what separates the work from mere accounting. The voice is what binds me to the emotional memories I think I should have, in order to match the feelings I really do have now.

Of course, the cost of reimagining is that the product is fiction. The people and places and events are real, yet the “presence” itself is invented. Is it an honest invention? May I lean on the human predilection to recall a history which is known to be not strictly true? And does the act of reflecting on that deficiency mitigate the sin or damn me more?

This morning I set to work by writing some notes on a yellow legal pad. They included this diagram:

I was thinking of the process of writing the book. I was thinking of how frustrating it is to feel that I need to restart a writing process I once considered nearly done. I was thinking of how my reckoning of that critical moment (when my tumor was discovered) has evolved. The diagram could apply to any of these thought processes, but with regard to “that critical moment,” I see myself approaching the final stage.

Not that the path is clear. It’s not. But at least I have a sense that my regret for “wretched, contemptible” emotions has been succeeded by a willingness to forgive myself. I wasn’t able to move into this forgiveness phase until a couple of months ago, when I experienced one of those rare moments in life when a disabling belief is held up to the light and found, at long last, to be regressive. I wrote:

Forgiving myself, for having created the life I own today, is easier than pushing myself to achieve what I desire for tomorrow.

With whatever fortune was due, or just dumb luck, I suddenly realized that such regret was holding me back. I suppose I had meant to incite a flurry of success, and yet the enticement of shame finally wore out. I felt, in that moment, like a weight was lifted from my shoulders. I felt, in that moment, that I could begin to love my life, to cherish my past. I understood that I would never be able to write my story if I wasn’t proud to tell it, if I wasn’t thankful for living it. That’s what I was feeling when I wrote, last month:

You’ve got to love your life, your one and only life. Love even the failures, the trauma, the embarrassments.

I don’t know what kind of voice will narrate the “wisdom” stage, if I ever get there. I suspect regret may yet have a voice in this story as an aspect of the history I’m no longer ashamed to own. So too bitterness and anger and sadness and hope and courage and resolve. I’m struggling to put it all together. I should be comforted, if I die today, that where once the page was blank I’ve left a mark to love by, and tried to tell the truth.

A Place of My Own

I had a room of my own at the age of eleven, upstairs at the house in Limerick. It’s another of those spaces of the mind in which my memories dwell, to which I’ll never return in body.

It was around that time that I began to ride my bike to new places. In essence, I discovered discovery. Is it futile to try to regain the sense of wonder that propelled me? Wonder was not hard to find, in those days. My own form of maudlin nostalgia is a mourning for that sense of wonder, which by consumption is spun into both an appreciation of the natural world and a sinister habit of reusing that same appreciation to understand new things.

The boy feels the thrill of exploration. The man, having collected a variety of experiences, finds only repetition in new people, places and events. This is the tragedy at the heart of maturity.

Today I ask wether the man might purge his catalog and re-experience things with a fresh perspective, and if so, how. In posing the question I’m reminded of an event from my childhood.

When I was about sixteen years old, I conceived of building a home for myself in the woods. Here the trends cited above, of both the serial haunting of ourselves with personal spaces and the struggle to push ourselves into the unknown while commanding it to disappear, come together. I wanted not only to be alone, I wanted to live alone.

I imagined a wild and unclaimed place. It was not a “virgin” forest, but lacked the appearance of being anyone else’s property. I knew roughly where it would be and had explored the territory, a couple of miles away on the side of a mountain.

A large measure of the power of this fantasy comes from its rededication of “home” to signify a place separate from my family. In fact, the idea alone (absent action) was sufficiently meaningful. I never built the imagined structure (a dark, coffin-sized enclosure of scrap wood) but somehow felt as if I inhabited it in spirit. I understood that it would have been dark and hard and cold, and I was not in dire need of physical escape, and so spared myself the real discomfort.

But I didn’t stop yearning for a place of my own. After college I became a carpenter with the purpose of gaining the construction skills necessary to build my own home. And eventually I did devote sweat, soul and mind to re-modeling an old house.

I lived there for seven years. Then, though I had never expected it, the cycle restarted. Divorce, like adolescence, pushed me out of the nest. My apartment is cramped and cold, but, like the coffin of scraps, it is a refuge of the individual spirit.

Yet even these walls squeeze me sometimes. As much as I desire comfort, I remain enchanted by the song of starting over. When I look out over the bay at miles of open water, I want to be a tiny speck in the middle of it, kayaking alone.

The Dollar Bill

When I was five or six years old I tore up a dollar bill my father had given me. I think he’d said something that made me angry, that made me feel silly and foolish, perhaps about having a “bad attitude.” I was angry that he was able to make me feel silly and foolish and I was angry at myself for exposing my own emotional dependence. I took the bill out of a blue vinyl Chuck E. Cheese wallet and tore it into six or eight pieces in the stairwell of the old house on Duvawn Place, just inside the back door. I would not have done this in his presence, but I made sure he found out about it.

I was not unusually attentive to my stuffed animals (a. k. a. “plush toys”) but I was attached to them, in a way. I projected onto them a desire for fidelity. The idea of parting with one, particularly the thought of abandoning one, filled me with dread. Honestly I wasn’t entirely thrilled with the prospect of lugging them around as I grew up, yet I expected a curse of guilt to follow any attempt at liberation. I really did feel that they possessed emotions, yet I knew at some level that their emotions were actually mine.

I learned to throw a ball in the backyard there, aged nine or ten. I’ll probably never return, as the house has been sold and nothing else in the neighborhood would draw me back. But I still dream about it: the brick facade; the wooden steps leading up to a landing at the back door; the air conditioner in a bed of English ivy; the view of all the other back yards up and down the block; the dogwood tree that was good for climbing; and the other, taller tree which was not; the slope descending to a wild buffer and another row of houses on the opposite side of the block, down below; Boomer’s patch of strawberries and marigolds; the bump of lawn that became a pitcher’s mound; the view from that mound, of the deepening evening sky and the Moon behind the tall tree; the essential knowledge of my right and left, my right arm being my pitching arm, being nearer the house, and this being a lasting index of the distinction of right and left, referenced thousands of times.

My first sex fantasies were from this time. They were not even sex fantasies, yet, but fantasies of great, pale breasts. I must have seen Elvira and her stunning cleavage on TV because the woman in my fantasy was raven-haired and wreathed in darkness and bound up in spiders’ webs, and I was bound up with her. I would wriggle around on the vinyl floor of our daylight basement with my tiny proto-erection, pretending to be tied up and endangered by giant spiders and yet spurred to escape by her earth-shaking electro-magnetic boobs.

I was anal-retentive as a child. I remember holding it in, resisting. My father made a reference to someone being tied up to a toilet until he pooped, though it’s not clear I ever heard this as a threat.