I endure, but only because I fear something worse. I am a coward. I don’t want to die.
If I spend life only being afraid or avoiding fears then that life isn’t mine anymore. I may be skilled at surviving, and I may sacrifice choice and dignity or endure what others fear, but for what purpose?
And so with a cowards’ cunning, I am skilled at surviving, sacrificing what others don’t consider, evading, plotting, and above all, keeping a few heart beats or breaths away from what I fear the most: death. I said to Linda, “’To be with loved ones’ post death, that’s my nightmare,” I shuddered, “Ug, spending eternity with Grandmother ‘helpfully’ ripping my actions and decisions apart to tell me what I did wrong with my life in detail”
In ‘Ne Le Dis a Personne’ (Tell No One’: the winner of nine film awards) the protagonist Alex gets an email at his pediatrics office eight years after the murder of his wife Margot. The email only opens at 6:15 pm, and shows a CCTV camera atop an escalator. A woman stops and looks around, then stares for two seconds into the camera. She is Margot. Alex, a man who has a job, a car, an apartment, everything but what he grieves. As he searches for what, why and most of all how with this and other emails, he is framed for murder with the police closing in. But Alex believes he is close to finding about Margot, and has an appointment that might mean seeing her. So he runs.
In watching this grand French chase scene, I about how different a person looks when they are running toward something than when they are running from something. Alex did not scramble, did not waver, and did not look back. He was running towards love, towards the dream of reunion and end of the long grieving. How could a criminal, a coward, thinking only of evading, match that?
What about me, am I running towards something or away?
Away.
I survive, but in not dying I am running from living and I don’t know how that happened.
When did I lose my passions and vocation? When did my life reduce to a focus on not dying, no more hospitals this week or delaying degeneration? Maybe it happened during the 15 months of scratching by, the fear that sets in when there are days and then weeks without all the medications, or even the important ones. Or was it because we kept running out of food, juggling money to keep the power on. Or did I lose focus in the two years I didn’t have a GP: or the twenty months without pain control? Pain is like the water which cuts through stone, as it erodes you day by day, smoothing your life into a hazy drudgery.
At some point I sacrificed the freedom to dream. Yes, I’m alive, but without the aspiration beyond simple survival.
People describe their goals and dreams in different ways: some speak as if it has happened, some speak soft and shy, lest it scamper out of their life, some talk boldly, their defenses already up, guarding the hurt inside. And then, over time, that description changes, until it is mentioned with an embarrassed laugh, when and if it is mentioned at all. Others talk about it with a smile because they found something on that journey of aspiration that was worth stopping and building around: stumbling into unexpected contentment, which have us repeating with wonder, “This is my life.”
But ‘this’, a collection of medical emergencies or things I do to avoid dying isn’t my life. It just happens to be the situation I exist within.
Linda, in her generosity of kindness, devotion and compassion gives me the security and comfort of our home serving as my ‘care home’ (for whether it is public, private or other facility, my disease now requires near full time care in a controlled environment). She also gave me, as a birthday gift, the grace of choosing to dismantle the emotional wall of protection she built over the two years of hospital trips, emergencies, specialist who gave up, and the conversations with ‘white coats’ about the specifics of my death.
Nothing I am or have done deserves her gift. MY life is better because she is with me, not just physically, but as ‘one flesh’. Linda’s choice to grieve with me, to wound with me, and live without emotional defenses with the person she loves most of all as I experience the late stage pain and degeneration. She bears this in order to share the joy, tedium, frustration, compassion, spontaneity, kindness and humor fully as my partner, my lover, my friend, my companion. She is running towards me.
What am I running towards?
There is no going back to ‘before’, not for me or for anyone, you grow forward, not backward. Neither we or this planet can ever stay still, the only things captured in amber are those long gone.
Langston Hughes in the poem ‘A Dream Deferred’ asks what happens when our dreams are deferred for us socially. But what about those who spend too long getting beat down just in order to survive?
Medically, I have hopes that one of the greatest medical problems from the last year is now in relapse. And if that stays true, then I will enter this summer with more energy to ‘do’ instead of just ‘be’. I don’t get any more energy or time, but in teetering stability, I will have my energy and time to spend elsewhere.
I have goals, barely visible. For example, I’d like to qualify for the Boston Marathon. I figure no reason not to dream big.
In order to qualify I have to be able to wheel a marathon first. And that means I need to wheel a 10K before that. So I am aiming to wheel a 5K. And I have an agreement that if I wheel more than two 5K’s before late autumn then we will look at renting a racing wheelchair again. And to that end, I have been wheeling outside by myself once a week. I can do 1.5 km now.
It takes a lot of planning and ‘doing’ to reach a dream.
I am tired of surviving. I want to live, and that takes risks, both emotional and physical. Even now, exhausted and in pain from my 70 minute workout at the Y yesterday, I want to shake my brain like a snow globe and see what dreams become clear as the rest of stuff that clutters life settles into background. Curious to start living.
Yeah, I’m back.
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