God Willin’ and the Creek Don’t Rise, Ray LaMontagne
The creek which borders the Quaker cemetery at my alma mater, Abington Friends School in Pennsylvania, was always a place of magic and fantasy. This short, narrow run of water seemed to arrive from nowhere and came to a peaceful end a hundred yards or so by spilling into a small pond just below what was known as the “East Wing” where I attended kindergarten.
That AFS, founded in 1697, had a cemetery, buried with those long deceased as well as more recent members of the Abington Monthly Meeting, including school teachers and administrators and sadly, tragically, even a few students taken much too soon, was of no particular interest during those early days. The headstones were simply part of the landscape.
When I moved “up” into the Lower School and all through middle and high school, I would have to walk through this beautiful, sacred space, framed by a cathedral of large ancient oak trees, on the way to weekly Meeting for Worship. Years later, whenever I visited school, I would first do so quietly, unannounced, and head directly to the grounds, mourning those I knew; fellow students, school teachers and staff and contemplating those I did not.
But as a young child, it was always the water, which held my attention.
If anyone has read about the loss of innocence, play and connection with the natural world, what with children having little to do with the outdoors as recesses and athletic programs are cut, parks and “green” spaces shrink and kids come home from school immediately gluing themselves to computers, cell phones and television, you will know that there is a very real and very serious growing problem, further deepened by a generation of grossly overprotective parents, who themselves never go into the woods and won’t let children out of their sight, let alone walk home from school, even in bucolic New England villages.
This disconnect has been articulated beautifully by many, including Richard Louv, author of “Last Child in the Woods,” Louv is also responsible for the term “nature deficit disorder” which is connected to obesity, stress, aggressiveness, depression and a lack of understanding about the natural world. (great article in the NY Times here)
I feel very lucky indeed that I was raised in an environment where my parents, teachers and school recognized that the importance of free outdoor play was an essential part of our day and development.
During recess, even in winter, we would slip on our black rubber galoshes, often lined with plastic baggies and march out to the creek, smashing as many frozen puddles as we could find, triumphant with every chorus of fractured ice, like so many windows, and play in the cold mud, encrusted with crystalline frosting much like misshapen cupcakes set half-way in the ground. In the spring, when all had melted, the creek, at least to our young eyes, became a roaring river.
One of our favorite pastimes was fashioning small boats out of whatever material we could find. We would have contests to see whose boat survived the longest on its journey downstream. The most successful boats were primarily comprised of aluminum foil and then decorated with leaves and sticks.
I recently dreamt of that creek and my boat. Styled as a canoe, inspired by the great Dragon boats, my craft had a wide middle and narrowed on both ends in tall swooping curls. I set the boat carefully in the water and followed it along from the bank. The boat floated slowly at first, drifting lazily along until it picked up speed. The faster it went, the more it rocked side to side, taking on water until ultimately capsizing under the imbalanced weight within. The dream then came to halt.
Much of the past year has been much like that boat. Some days drift lazily along until my boat starts to pick up speed, eventually taking on water. I may have capsized a few times but I have not drowned. I continue to swim, and scramble back into the boat, scooping the excess water out as much as possible until the next set of rapids rise to meet me.
The latest chaotic river run has been in the form of seizures. I can only think that the unseen boulders I keep crashing into are the cause of my intense headaches.
The first seizure occurred during a work trip to Chicago with the head of the school where I work. A brilliant educator and one of the strongest heads of school Putney has ever seen, she is at the forefront of progressive education and leading the charge.
Having awakened before dawn to catch a flight from Hartford, Connecticut, a drive of an hour and half from Putney, Vermont, I was eager to get to our destination in time to have a rest before our afternoon meetings. After landing and checking into the hotel, we did indeed have time to stretch our legs and have some down time. But the bicycles stationed outside the lobby caught my eye.
I dropped my luggage off in my room and raced back down to take out a bike for a downtown spin. Drawn as I am to water, without even looking at a map I found my way to Lakeshore Drive along Lake Michigan. With the wind and sun in my face, I was elated. I was tired, it was hot and I had just flown from New England.
I had also just returned from what became a rather stressful weekend with my family in Pennsylvania. The stress was the result of, for reasons I can only surmise briefly, the usual subcutaneous low-hum of intra-familial, emotionally-fraught regression that sometimes occurs when one spends time with family in addition to the continued aftershocks from the earthquake of cancer. This combined with the dull roar of headaches only heightened my own irritability.
About twenty minutes into my ride I turned back towards the hotel.
As I barreled along the busy streets I became aware that my left arm felt numb and tingly, and then ultimately “disappeared.” I realized that I had been pedaling with my right leg and that the spinning of the crank was simply carrying my left leg along. My entire left side “slipped away” as I tried to stop. I managed to slow down just in time to fall slowly to one side and ultimately to the pavement, in between two parked cars. “DAMN! NO! NO! NO! Not again!” I moaned aloud as concerned bystanders watched this odd sight. Some workmen across the street yelled, “hey buddy, you OK?” They ran over, lifted me up and dragged me off the street. “You want us to call 911? You OK?” they kindly asked. “No, I’ll be OK, I think I’m having a seizure. I just need to rest.” They helped me to a chair at a sidewalk cafe where I sat exhausted, watching my left leg and toes quiver wildly. A young family asked if I needed help. I called Barb and left a frightened, tearful message. I called the hospital in New Hampshire and was instructed to get to a hospital. I could not fathom being stuck in Chicago and creating a scene and thus, perhaps wrecklessly, ignored their pleading.
Five minutes later I slowly rose, getting back my “sea legs” and started walking back to the hotel with the bike. I had just five more minutes to shower and get dressed for our first meeting. I met the head of school in the lobby and we took a cab to our destination. Too proud and slightly freaked out, I said nothing. The meeting went quite well.
After the meeting we stopped for ice cream. I looked at Emily with a look which must have appeared to be a combination between a grimace and a smile. “I wasn’t going to tell you this but since we ARE traveling together I suppose I should. I had a seizure right before we met in the lobby.” She stared at me with a quizzical look which could only have been interpreted as “what are you, nuts?” I assured her I was not nuts (to be debated) and that I would be fine (not that I really had any idea) and declared I was ready for our next meeting to take place. She admonished that I needed to rest and that since I had already met with the people with whom we were supposed to dine, I need not go and instead should simply take it easy. After some protest, I finally gave up. “I guess you’re right. It kills me to miss this meeting, but I should rest” I said, dejectedly. “No,” she said, “I know I’m right.”
When I returned home, I immediately set up an appointment with my oncologist and had another MRI, which are normally scheduled in three-month intervals to check for new tumor growth. Yet another hour in “the tube” listening to the cacophony of enormous magnets, a sound akin to the opening chords of “Helter Skelter” by The Beatles and a chorus of jack hammers. The results showed no sign of tumor growth but did show pronounced enhancement of scar tissue from the surgeries and radiation. The way I understand it, the effects of radiation, especially to the brain, can continue for months or even years after treatment. The dead cells don’t really have anywhere to go because of the blood-brain barrier so instead of being flushed from the body as waste; they just float around like dead leaves in a pond. Ultimately, I assume, they do compost.
I carried on, went to work and started back on Keppra, an anti-seizure medication, first prescribed after my initial surgeries last summer. Oddly, I smile when I say Keppra as it reminds me of my grandmother’s use of the Yiddish word “kepele” which means “sweet little head.” קעפּעלע
Several weeks later I was in Boston when again the same elements of heat, fatigue and stress created the perfect storm. My left side slowly began to feel as it had been filled with lead and water. My balance was thrown off and I began cursing the demons. I decided then and there I was going to become fully aware of my body and “talk” to my brain. I was going to fight the onset of seizure with positive thinking. I continued walking, albeit slowly. I felt as if I was hallucinating or that I was in a bizarre slow-motion scene of some other dimension à la The Matrix or Crouching Tiger, Hidden Dragon. I felt the presence of an “aura.” (No, I did not see unicorns, rainbows or the Holy Spirit) Ironically, those who experience seizures, an electronical malfunctioning of the brain, refer to having an “aura” or a perception via motor, visual, sensory or psychological that something is amiss just before an onset.
My seizures are “focal” or partial seizures and have occurred on my left side, due directly the location of the tumor, which was within the right parietal lobes of the brain. For now, the anti-seizure medication seems to be working with some modest side effects including dizziness and fatigue. The headaches, some elephantine in nature, others like an arrow being slowly driven into my forehead, continue despite the medications. Stress, bright flashing lights, excessive noise and other related sensory overloads are all areas to either avoid or approach with a new sense of care and awareness.
Going to the Tunbridge World’s Fair last weekend, one of my favorite seasonal events and, in my opinion, the best of the Vermont country fairs, presented a new challenge. Never one for rides, even the Ferris wheel, my only ride, was a challenge. Next year I will spend most of my time in the historic section or just climb into the pen with the lambs and curl up in the straw.
As I have shared previously, this blog effort has been part purge, part therapy and, I hope, part community service in the hope that others may benefit, knowing that they are not alone. Not everyone is comfortable laying everything bare. Some simply cannot out of fear that it will hurt their career or that they will be perceived as unfit. I completely respect their choice. Most of the time, when asked how I am, I respond with a thumbs-up and a smile. “Bully!” Theodore Roosevelt would have shouted. “Bring it on!” I say.
I am constantly moved by how many tumor survivors walk among us struggling quietly with the physical and psychological debilitation such a disease reigns upon them. Most of us, on one level or another have endured the crushing, incapacitating physical and psychological blows from multiple surgeries, radiation, chemotherapy and side-effects from medication, and yet we continue to attempt to live happy, normal lives. We are raising children, in committed relationships, maintaining friendships, holding down jobs, pursuing passions, etc. But in the background there is a steady drumbeat, or rather, the thud of some sinister clock with a second-hand marching forward like a time-bomb.
Lately I have been experiencing a percolating anger at the cancer. The resentment comes from the emotional toll, seen and unseen, I know this has had on my colleagues, friends and family, especially my parents, my sister, my partner and, in particular, my two teenage daughters. They have certainly learned all too early that life is not always “fair” (whatever that means) and that the deck of cards we are dealt is the deck of cards we are dealt…and that we must stick together, carry on, move forward and do our best to enjoy the gifts we have.
The brain cancer community is a relatively small one and yet I know I can reach out to comrades from around the world with questions, thoughts or concerns and receive immediate replies with gestures of ideas, comfort and support. I have gleaned so much valuable information and continue to learn with, dare I say, an open mind. I do have some extra space up there, now that the tumor was resected.
I have spoken with, emailed, Skyped, met and befriended a wide array of fascinating, committed people: doctors and scientists in the trenches and on the cutting edge of research and discovery, lawyers working deep within the often complex regulatory landscape of navigating insurance coverage, the drug approval process, the clinical trial process, the NIH and the FDA. My own sister, an editor for the National Comprehensive Cancer Network, an organization based in Pennsylvania which develops treatment protocols for cancer, has been a wonderful point of support. Biotech explorers and venture capital investors with a personal connection to brain cancer, and the grandmothers, grandfathers, aunts, uncles, mothers, fathers, brothers, sisters, sons and daughters all contributing in their own way to seek better treatment and help move the scientific community towards finding cures for what is, for now, an incurable disease.
The book effort is already underway, replete with stories yet to be shared. The somewhat provocative, tentative title and cover has been chosen and the words are being laid down like the bricks of a foundation. Stay tuned!
Man in a Shed
I write from my newly completed cottage, formerly a simple 10×12 garden shed. Insulated, wired, and finished with rough-hewn pine board from a local sawmill, the “Cabin,” a dream held since my days as a Thoreau-ian devotee, has been realized.
Fighting, as I already have been, with a small army of mice seeking to invade and inhabit my space, I cannot but help think of the scene in the film adaptation of Farley Mowat’s novel “Never Cry Wolf” (a favorite book and film- how I long for the Arctic!) in which Charles Martin Smith, ritualistically prepares mice for eating in a variety of ways – fried, sautéed, dipped in chocolate – to further deepen his understanding of how the wolves survive as it was assumed they were to blame for the decline of the caribou herds in the Canadian arctic. I may get very hungry and choose to win the battle of occupation not by trapping the creatures but by eating them.
The Cabin is a space to ensconce myself. To rest, dream, cry, think, not think, yell, laugh, listen, meditate, seek solace, play music and write. And write I will. And rest I must. And Be.
“There is nothing to writing. All you do is sit down at a typewriter and bleed.”
– Ernest Hemingway
“I am a drinker with writing problems.”
– Brendan Behan