“If I live the life I’m given, I won’t be scared to die.” Avett Brothers

“I don’t think any of us even knew what we were doing here and why we decided to come. I mean, we were all having a blast and all, it was probably the best day of some peoples lives. Maybe even mine, but I can’t really remember which was the best day of my life or if I’ve even had it yet.

Do we know when it is when it’s happening, or just looking back on it? I don’t really want to have the best day of my life though because then I’ll know that that was it, nothing will ever be better than that, and now the moment’s gone. I guess I would just get all depressed after it happened. I don’t know really, but I didn’t get depressed after this day, I just couldn’t stop thinking about it and smiling.”

My daughter, Elizabeth “Libby” Green, age 13, on participating in the Annual Coney Island New Year’s Day Polar Bear Swim, January 1, 2012

It has been some time since I have jotted out musings vis-à-vis this funny sounding medium called a “blog.” The word to me sounds onomatopoeic. Perhaps the sound of a frog when it has indigestion after slipping too many dragonflies into its stomach. Or rather, the name of a mythical creature from the swamp, emerging from the murky deep and devours small children with a gaping mouth and massive drooling bicuspids?

In a promise to myself to keep putting pen to paper, or rather applying my awkward yet adaptive style of hunting and pecking with both forefingers (I never learned to type and my handwriting is horrid) here I am. Oh yes, the book. Yes. The book. The. Book. Yes. So much to say. Stories to share.

What has gripped my thoughts of late with talon-like efficacy among the many torrential downpours of emotion, has been a very strange and unsettling convergence of recent events involving the ongoing aftershocks of living with brain cancer, the celebration of my great-aunt Sarah Willdorf’s 100th birthday in Stamford, Connecticut, and the mind-numbing massacre in neighboring Sandy Hook, Connecticut.

Lives threatened, lives extended beyond the norm and lives stolen far too soon to even comprehend. Tucked within these events I cannot help but seek, but what? Meaning? Truth? Or is all just what is? I think Libby was writing of the same question. Darkness and light. Tears and laughter. Love and pain. Just what are we doing here and is this best we can be?

“It’s a fool who looks for logic in the chambers of the human heart.” – Ulysses Everett McGill, O Brother Where Art Thou

I feel as if I am about to embark on a very important journey. I cannot explain anything more. It’s just a feeling. I know it is sparked by some new fires being lit in my heart, mind, body and soul. I sense a nascent enlightenment, catalyzed by years of self-inflicted pain which I must shed. The tracks of my ice skates are finally cracking the fragile surface: risk evolving into recklessness, caution to the wind, carefree-ness translating sliding into impulsiveness. I do not seek perfection in this journey, only progress. If our best qualities are also our worst, I seek to make the best better and the worst fall away and slip beneath the ice into the… deep. icy. cold. blue. waters.

A friend, also a cancer survivor, shared that cancer does not make whatever challenges you had going on in your life disappear. To the contrary, whatever you had going on in your “pre-cancer-state” eventually bubbles to the surface, like an underground geyser, often with more intensity. Depending what those things are, this can be either blindingly beautiful or catastrophically upending. And geysers are hot and powerful. Scalding steam thrust from the earth’s core. A violent earthly purge.

I am unable to reference much in the world of popular film, art, music and literature about cancer. There is surprisingly little given the numbers of those with the disease. Sontag, Hitchens and Solzhenitsyn of course are a few which come to mind. There is a series called the “Big C” I have not seen and the film 50/50 which was “meh.” The scene of Elizabeth dying of cancer, George Clooney’s wife in The Descendants, was more irritating than moving because I resented my emotions being manipulated, the camera seemed to linger over her dying body much too long. The Cancer Ward, Illness as Metaphor and Mortality are good starts anyway.

The sublimely executed Emperor of All Maladies: A Biography of Cancer by Dr. Siddartha Mukherjee is a must-read. And, sadly, but gratefully, there are the thousands upon thousands with cancer or who have endured the loss of a loved one, who write, paint, draw, sing, play, sculpt, sew, cook, and otherwise express themselves as an outlet not only for their creativity but as a way to process pain and fear. All that anger, fear and sadness must be managed and translated into something good, if possible, in some fashion.

Others are inclined towards the physical: participating in competitions, running, walking, hiking, bicycling, swimming, etc. towards a cure relishing in the esprit de corps and camaraderie. Or just for the sake of exercising, no cause attached. Some take part in the political process, lobbying, writing letters, visiting their representatives, working tirelessly to press the cause and seek more funding and more research. And many chose to endure their cancer quietly, privately. Each follows the path that is right for them.

But in popular culture, certainly the day-to-day coverage, little is shared about the havoc the blanket of cancer covers. A cyclone of financial, physical, emotional, sexual, spiritual and psychological mayhem. Thank goodness there is a dearth. A reality TV show about cancer would be dreadful. There is no such thing as reality TV. The whole notion is oxymoronic. Reality TV is not real, it’s television. Pixels carefully manipulated for maximum effect with no regard for anyone or anything but the voyeuristic, salacious and often profoundly sad, exploitative nature of such shows. And of course, ratings and revenue.

Stories of heroism and courageousness are another matter and are important for cancer’s storyline. They offer hope, inspiration and faith. That I will take. But they often belie the struggles behind the scenes. It’s sort of like the ironic lie of a family photo album. When was the last time you saw a family photo album where all the pictures were of the unhappy times? What if you had an album capturing every family blow-up, each domestic argument? The tantrums. The accidents. The foot in the wall. The spaghetti tossed to the ceiling. The burned dinners. That would not be very much fun now would it? (actually, it might be) A real cancer story would be difficult to achieve in a thirty-minute segment with commercial breaks. Thank goodness for public television and independent film.

—–

I have left The Putney School, a place very dear to me, but most happily have joined the terrific team at Accelerate Brain Cancer Cure, based in Washington, D.C. I can now honestly say that I have quite literally dedicated my life to the cause of finding treatments and cures for brain cancer, currently an incurable disease with very few options. The moving story behind this small but effective organization can be found here. I do hope to carry Dan Case’s legacy forward and beyond as I spend part of my time working from home in New England and part of my time evangelically pursuing avenues of funding for the cause. I have miles to go before I sleep!

—-

Living with cancer is like:

Awaiting Jack Nicholson as Jack Torrence in The Shining to smash his way through your door with a fireman’s axe screaming “Heeeer’s Johnny!”

Being served a birthday cake with trick candles that don’t ever blow out.

Swimming in shark infested waters.

Having a hornets nest nearby at all times.

That said, when timed get tough, I think of what Teddy Roosevelt would say: “Bully!”

Or perhaps Winston Churchill: “The pessimist sees the problems in every opportunity. Whereas the optimist sees the opportunity in every problem” “Never, ever, ever, give up.”

I just spent a lovely holiday break with my daughters in Quebec, nordic skiing at Mount Sainte Anne and celebrating New Year’s in Quebec City. Nothing like being surrounded by an historic fortress with French-Canadian folk music blaring from a frigid stage and everyone as happy as can be. The Quebecois are fun-loving people no matter what the temperature.

At the ski center, gliding along a single-track trail with nothing but a canopy of snow-covered evergreens above and the soft snow under my skis, I often paused to take in the cold air in as deeply as I could. My heart, mind, body and soul were one. I was happy. I was at peace.

The journey has already begun but I have new mountains to climb, trails to ski and many rivers to cross. Happy 2013!

Great Aunt Sarah Willdorf at 100

Great Aunt Sarah Willdorf at 100

IMG_1628

Willard!

IMG_1636

Great Uncle Morris and Great Aunt Sarah at their camera shop on Madison Avenue. Jacqueline Kennedy Onassis was one of their favorite regular customers

IMG_1665

Nutrcracker Ballet in Boston

IMG_1689

Quebec w Eric Aho

IMG_1737

Chalet Morency

IMG_1738

Bliss. Photo by Libby

IMG_1739

Photo by Libby

IMG_1740

Warming hut. Photo by Libby

IMG_1775

Timers have a different meaning now

IMG_1778

Vieux-Québec w Libby, Roo and Hannah

IMG_1786

Night View from the Boardwalk overlooking the Saint Lawrence

Advertisements

About moosevt

earth air water fire aether wind rain snow sun see hear smell taste touch
This entry was posted in Uncategorized and tagged , , . Bookmark the permalink.

4 Responses to “If I live the life I’m given, I won’t be scared to die.” Avett Brothers

  1. Ken Brautigam says:

    Thanks for writing, Mark. Thanks for the infusion of courage, thoughtful
    musings, gentle rage, courage, poetic imagery, deep sharing, courage,
    determination, humor, and courage. You’re one in a million. No — a
    zillion.
    –Ken

    • Alli Lubin says:

      I couldn’t say it better than Ken did, Mark. Thank you again and again. We’ll find out today if my mom has bile duct cancer….living day to day, hour to hour with the anguish. Your words and photos are a salve for my spirit, mind and soul. WIth love.
      ~Alli

  2. Patrick says:

    Very well written, you have captured beautifully what we are going through. Hope you are successful at your new job so that brain tumors, just like so many other conditions, are managed through simple solutions. Best luck!

  3. Jean E. Brown says:

    Mark – so beautiful – so evocative – thank you – jean

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s