Wednesday, June 01, 2011

‘To’ instead of ‘From’

“Coward: A person who lacks the courage to do or endure dangerous or unpleasant things”

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?


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.


Neil said...

You're back? The "you" of which you speak was never gone, dear. It was hiding behind other things, waiting to be rediscovered.

While we're busy with other things, we sometimes forget who we are, but we'll remember eventually. As you say, we sometimes see what we "were" and are embarrassed; perhaps because we think that what we were was unattainable, or silly. But if it's worthy, there's no need to be embarrassed.

I see you as a teacher, Beth. Yes, you were a professor of English, but you're still teaching, through this blog, and through your dealing with the medical profession. I only hope that the ineffective quacks and frauds you've had to deal with have learned from you, and have become better doctors, nurses, and technicians.

We're all moving "to" the same thing; you're a little closer to it than most of us, which is unfortunate for all of us, but I am still learning from your viewpoint. And yes, I'm still inspired by you: I'm inspired to be Me.

Thank you, Beth.

Love and zen hugs,

Vanessa and the gang... said...

I am so glad to see you. Whenever there is darkness we all wait with bated breath, silent prayers, and clenched hands for you to come out on the other side. :) I'm glad you did.

Linda McClung said...

Hmm, if I had to spend my time, post death, with relatives, I think I’d have an easier time than you.

This is a very thought provoking post. For one thing, it reminds me to keep down the walls and instead run to you and embrace the experience.

The other thing that really was a look in the mirror was your questions “When did I lose my passions and vocation? When did my life reduce to a focus on not dying…?” As a caregiver those questions also ring true. Have I lost my passions and vocation? Is life just caregiving? I am really thankful that you support me in my pursuits and encourage me to get out of the house and go exercise at the YMCA.

I hope you are able to spend more of your time living as opposed to dealing with one health crisis after the other. Get some quality and fun in your life instead of just drudgery.

tilmon said...

Hi, Beth! It's me, commenting from the one blog account I still actually update!

I don't think you are a coward, or have ever been one. But I can see what you mean by not running toward something. Sometimes, though, hunkering in the trenches is the best, the only sensible thing, to do. But then there is the time when you have to move forward, even though moving forward still has great risk. I'm glad that moment has arrived for you. I am delighted that you are able to push yourself in your own chair that far now!

The fear of being re-united with "loved ones"--that really made me chuckle. That's a pretty fearsome hell to avoid!

Elizabeth McClung said...

There is a great gap between being dead and being too ill to blog or too weak or not having enough hand function. Indeed, likely the hand function will go before I die. It is just now are those experiences where before others would believe that death comes before this, but actually, there are many indignities and downs and ups and down again before dying. Sometimes that takes two weeks or three, sometimes six months, or nine, it is difficult to say. But to be able to blog to the end itself is rare. Right now, blogging is an deliberate act of living, not an excess of time or energy. To do a post requires planning and saving of energy, sleep and the schedules, then the writing itself and then the recovery. It is like spring cleaning, hard but satisfying when I have completed the task in the end.

Linda: I think that the unemployment kept both of us scrambling, but I hope that you can bring your hobbies, passions and vocations so that I can see them, be part of them too. It is good to see you pushing yourself, like uphill biking on bike to work week.

wendryn said...

I'm glad you are moving towards something again. I have never thought you are cowardly. Sometimes you are just focusing too hard on surviving to be able to move forward.

Raccoon said...

That is a very interesting question.

Personally, I've met Death. Once. She was the most beautiful woman... She told me "not yet." I wonder if I'll be as willing, next time.

If you're running from death (notice the lack of capitals), do you keep looking over your shoulder, and tripping over things in front of you? Focus on Linda, in front of you. Focus on the "oneness," on her love.

Still here.

SharonMV said...

I'm glad you have hopes. goals & big dreams again. I have been just holding on, Dennis & I scrambling through employment & financial problems. He has had to do more & more for me, while I could do less & less. What we faced is not as difficult or scary as what you & Linda went through, but I got a taste of it. I feel I am coming back too. I saw my immunologist a couple of weeks back & he increased my IVIG dosage back up (he's the one who cut it last year) so I'm hoping to reverse the decline and the complications. Even before, I started planning a new venture, my mind teaming with ideas. And thinking about getting out for something other than a medical appointment. I think it started when I made 400 flower stickers. Now, I wonder where I'd get the inspiration to do something like that?

Linda is an exceptional woman, beautiful (of body & soul). And so are you,Beth.


Kate J said...

Glad to have you back - mention of those 'medical issues' made me fear the worst, I have to say.

You sound as if you've got something to look forward to, and I'm certainly looking forward to seeing pics of you wheeling and whirring again in the near future... but Beth, a coward? Never! Bravest gal I ever met, I reckon. And while I don't, personally believe in an afterlife, I reckon if there is one it'll be your real loved ones you meet up with, is. those you love and who love you, not some old relatives who find fault and probably didn't love you much anyway.

And last, but most important, your description of Linda running towards you... you both are running towards life, embracing it with everything you've got. You inspire me to live my own life more positively, with your example, and I mean both of you. And I hope you're able to keep running towards life for a long, long time yet.
Love & peace

Baba Yaga said...

Oh, glory, are we required to be with our families in our afterlives? - I'd better outlive Methuselah, then!

Running towards is much more how I see you than running away. You can't run towards anything, though, if you're dead!

Fear is not cowardice. Immersion in survival is not cowardice. It's just immersion; and you've surfaced many a time, maybe not for long enough to show your (passionate, insanely striving) self to *you*, but certainly to show yourself to us. She never went away, she just had more urgent things to attend to.

Liberty to run towards, to aspire, to scheme and pan is *much* more fun than mere survival, though.

Here's to more of that for both of you - all of us!

cheryl g said...

This post has given me a lot to think about. I had never considered viewing my life from the perspective of running towards something or away. Upon reflection I realize I’m not running at all. I am hunkered down, too afraid to move in any direction.

I am humbled by the efforts you and Linda make to run towards things, to choose life and to strive to live it fully. I find myself wondering if I have lost my dreams and my ability to live and grow. Am I so caught up in surviving that I have ceased to truly live?

Once again, you teach me and open the way for me to examine my life and work towards growth. That is a great gift you continue to give me. Thank you.

I really like that last picture you posted too…

Tina Russell said...

Yay, Beth! I’ll be cheering for you. It’s wonderful to have goals like that for yourself, things you can do one at a time and make you feel really badass.

Rick said...

Very fortunate in that you have someone who cares so much for you.

I also ask myself how I got to the same point. No huge disease like you at some early age, but looking back at my past, I had so many opportunities to do positive things with wonderful promises for the future.

Looking back now, I can only conclude that I was quite mad and believe it all started with a wounded ego that descended into self-loathing.

I recognize the same retiring from life in my own behavior (haven't played the guitar for over a year ...... something I used to do everyday) ....... from no longer camping and horseback riding to a general feeling of "what's the use" in leaning new things (perhaps because I am now in my 60's).

Perhaps your insights can inspire me.

I am grateful that you are doing better.

Olivia said...

I'll say welcome back Beth, but I agree with Neil, you were never gone. Others have also alluded to your reference to 'loved ones' waiting for you in the afterlife - don't think that means the same thing as relatives!

Elizabeth McClung said...

Most of the people I'd like to talk to are here, this is where the action is, unless BBC is making new series in the afterlife (do my favorite TV shows have more seasons in the afterlife? Do I get cable?). I think I'd rather stay.

Weak, but steady onward.