The weight…the wait…the hourglass

Anaplastic Ependymomas are characterized by a brisk mitotic rate and microvascular proliferation

Dreamscapes of late include rushing water, deep crevasses, and sliding, curiously, down mountains of shattered safety glass. I find myself swimming in a vivid sea of color and it takes little time to realize that I am completely out of my body, drifting, swirling inside fountains of brilliant light. I am ensconced within the color. I hear Hannah’s voice. I am bodiless. I am the color.

I have slid down into a valley and she is above me looking down, her face silhouetted by a bright blue sky. There is bewilderment, but, strangely, a peculiar calm. She is worried. I am afraid. But we both know we are ok. I have cut my arms and hands sliding down the glaciers of glass –  all the same small cubes of crystal blue. And the dream ends. That is all.

Have you ever been in a car accident? Time seizes up completely. Things are slow motion. Sound compresses. Centrifugal force wreaks havoc on the brain’s ability to process speed, motion, sound, sight, sensation, and smell as g-forces push the brain to and fro in nanoseconds. And then the car stops. Broken glass. Twisted metal. If you are lucky you might walk away with cuts and scrapes.

The wheels might still be spinning. The radio might even be on. But as you come to. you realize that all is not what was. Things come to a rest.

In 1993, driving a rented convertible beneath the stars, through the winding back roads of Lompoc, California, north of Santa Barbara, I was heading back to my hotel after a day’s work. Top down, of course, I was exhilarated. I believe the Cranberries were on, the Celtic-infused washes of sound filling my heart. Delores O’Riordan. Ode to My Family.

Rounding a corner, caressing the rock boundaries and brush, a deer stood, broadside, head cocked in my direction and eyes aglow. In an instant, I struck the deer, sending it soaring over my head and over the open-topped car. The airbag deployed, choking me with the talc powder used to release the device. I was able to swerve off to the side of the road, sliding along the gravel shoulder and turn off the engine before drifting into the canyon ahead. The headlights pierced through the settling dust.

There were no cars. It was dark and quiet. I had no idea where the deer went, what shape it nor I was in. Pushing aside the airbag, I stepped out and began walking around the car. The front end was battered but the car drivable. Eventually, and I don’t recall how as this was a pre-cellphone era, a police officer came to assess the damage. He found the deer and dragged it by its hind quarters, heaving the animal over an embankment. After checking to see if I was safe, he assessed that no laws were broken and shared that I was welcome to drive home with no penalty issued. Enough damage had been done. Numb from crushing the life out of the deer, sore from the accident itself and feeling as if time has been temporarily suspended, I limped home.

In another time, when I was about ten, my mother, grandmother, sister and I were heading into Philadelphia along the Schuykill River. It was dusk and raining heavily. Coming quickly upon a particularly nasty curve, the car, a Ford Grenada of the most ugly demeanor, hydroplaned and continued forward despite mom’s efforts to follow the road. We seemed to fly through the air, soaring, until the guard rail cables managed to grab the car, slowing our speed, tearing off the rear bumper. We were temporarily suspended, facing the river. The car abruptly pulled back and all stopped moving, save for the torrent of rain raging against the glass. Again, time seemed to stop. Frozen. Suspended.

Time continues to be temporarily suspended. Some days I sing with happiness, others I feel as I have just walked away from yet another car crash, occurring in a fifth dimension of time. There are “out of body” days. My sleep patterns are completely off and taking medications is nothing more than a band-aid which often leaves a sticky residue. Not being particularly fond of taking any medications unless absolutely necessary (not by any moral or political impulse but, rather, because I do not like to feel robbed of my true self, much as that true self sometimes needs a rest) I have found the cocktail of steroids (for post-op swelling), anti-seizure meds, pain killers and sleeping aids to be of little use. My entire body chemistry is seeking a new normal, whatever that will be. Such medication seems to have little effect. I do not consider this to be a detriment.

For someone who wants to know what he is going to eat for breakfast the night before, I have had to let go of a lot of my previous compulsions for law and order for a life of unknown. “Embrace the unknown” a friend and cancer survivor shared. I am trying.

What I tell close friends who wish to know more, is that some force, uninvited and unexpected has come into my life and decided to turn over my hourglass prematurely and there is no way to upright this wrong. And yet, we have no idea ho much sand is left. In many ways none of us do, we being mortal beings and quite vulnerable. It drives my engine. I have so much to do, and now, even less time for the irritants which can waste so much of our time. And yet each grain of sand seems so large and significant now.

And I feel that there is anger, percolating, simmering beneath the surface…famed psychiatrist Elisabeth Kübler-Ross was a brilliant woman and became well-known for her mapping stages of grief. In many ways, and for millions, it has been simply a guide. A road map for the yet to be traveled emotional highway. Of course many victims of trauma and tragedy will go through (and back through) various stages of grief. But she set the stage and deserves credit for helping people understand that grief, loss, suffering is a plastic, ever-changing evolution of the mind, body and soul.

Funny thing is, I am not quite sure what I am mad AT. I do not wish to unleash my frustration towards anything or anyone and know that physical exercise and music are beneficial salves. But I am also trying to seek a path towards acceptance of this anger and channeling it. Naming it, owning and letting it burn off, like some lit fuse. I find myself reflecting on unfinished business. Scarred friendships. Actions or inactions regretted. Things I wish I had said or had not said.  It’s enough to drive one mad. Or make one mad. But I also know, deep within, I have to let it, whatever “it” is, go. But where, when and how?

Today I finally cursed this rare, deadly cancer’s name. I was screaming as I walked into the forest behind my house. I wanted to smash windows, throw rocks, break things. But I didn’t want to hurt anyone or anything. I just needed a release from the mounting pressure of living with a disease for which I did not prepare nor invite. I resent the time away from friends and family, from my physical pursuits, I have a deep desire to get back to work and raise millions of dollars for a school I dearly love and believe in. But being mad at something which will not express any response is in of itself an exercise in futility. It has been helpful to speak with friends who have experienced similar trauma, to know that these waves of frenzied emotion are all natural, normal and, dare I say, predictable.

In addition, there is the weight of the wait – that’s the worst part of it all. It amounts to a form of permanent torture, really. A spiritual water boarding. The need to know but not knowing.

Anger is a funny thing because it’s a deceptive emotion. Actually all emotions can be guilty of deceit. Being heartbroken by someone you love may very well be about being hurt, but the tendrils of despair are long and intertwined within our past relationships, our current situation and our fear or worry of the future. I truly and fundamentally believe that if the following equation for emotion was analyzed, dissected and somehow implemented in domestic relationships, foreign policy, etc, the world would be a better place:

If one understands, at its core, that ignorance breeds fear and fear breeds hate and hate brings violence and violence brings death physical, emotional and spiritual, there would be less fear, hate, violence and death if we can launch an all-out assault against ignorance.

I do not accept, on any level, racist, sexist, homophobic, classist, xenophobic, anti-human attitudes. But I understand its existence, because at the root, it is predicated on ignorance and fear. Certain political parties are quite deft fomenting and fermenting this fear. It wins votes but at great cost. It should be another interesting, maddening and sad political season. It’s already started, or rather, it never seems to end.

So how do I both embrace and fight this cancerous invasion of my most sacred space, my brain? After all, the brain is us. It is who we are. I am trying to understand as much as I can about this illness and use this as a tool, even a weapon. Knowledge truly is power.

“Anaplastic ependymoma (WHO grade III) is a malignant glioma of ependymal origin with accelerated growth and an unfavorable outcome, particularly in children. Incidence data vary considerably. No specific genetic alterations for this tumor are known. Prognostic correlations between histology and clinical outcome have been inconsistent. In a large series, no correlation between survival times and classic histopathological findings of malignancy were observed.”

“WHO Grade III tumors are also known as anaplastic ependymomas. Incidence data varies based on reports, with only relatively small series of patients included in each of the publications. The definition of the microscopic characteristics that distinguish a Grade II from a Grade III tumor are currently being refined. Evidence of active cell division (mitoses) and formation of new tumor blood vessels (neovascularization, a component of angiogenesis) are typical findings in the Grade III tumors.”

“Overall, in surveys of adults with ependymomas, 10-year survival rates of 45 percent were reported.”

What I do not understand, I fear, and what I fear I loathe. With this brain cancer, I am trying to understand, trying to harness and channel the fear and push the loathing to the side, or into the abyss. And I do this as I wander, endlessly, into the unknown…armed with knowledge, hope, 21st century medicine, and most critically, most essentially, love from friends, family and community.

I’m a lucky man.


About moosevt

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One Response to The weight…the wait…the hourglass

  1. Nina Ryder Lynn says:

    Mark, your words are so poignant, so moving and so very brave. You are in my thoughts and I look forward to reading more of your artful prose. Nina

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