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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Monday, March 13, 2006


To Live is So Startling...

To live is so startling it leaves little time for anything else --Emily Dickenson

We didn't make it to Vail. Life intervened. This time, with a flu bug and a nasty fever. Henry and Max have gone ahead, leaving Adam and I alone this week to get better and perhaps discover the unexpected.

There are a few things going through my mind -- a luxury of unscheduled, impromptu time. I am going to be 41 next week. I have two frames of mind right now about growing older:

1. I'm not really ready (or am I?);
2. Let the wind blow where it may (this thought takes a little for effort).

Children punctuate time. Before Adam, I was husband-less and free, for a time. I met Henry with four children and that stopped this nomadic existence -- moving senselessly from here to there. I could forget about obligations when the kids were not with us -- we had them only part-time. I got married and had my first child at 37. The mind-clock began here. Time is always felt most dramatically in conncection with birth and death. On Saturday, I chatted with Henry's 92 year-old grandmother. "Where does the time go?" she asks. Adam will be four in April. Where does the time go? It's been two years since he diagnosis. Where did that go? Perhaps it is good to remember that the grim reaper looms not to far off in the distance, that time is a huge train station clock hovering over our heads.

My favorite clock at Musee D'Orsay -- Henry, Joe and Max in the background. Posted by Picasa

We can measure it, forget it for a while, melt away within it, distort it, but time will keep on ticking. Time, it's the only thing we really have -- it cacoons my mother who has stuggled with two bouts of cancer, carrying her fragile body, for now, with grace. It wisps around my father whose spirit remains timeless, but peppers his blond hair with grey, freckles his Nordic skin a little more each year. It has made its first sinister introduction to Henry in his aching hands, and me, while I don't remain unscathed, untouched by time, I hear it brushing against my door, scurrying busily about the neighbourhood. I watch as it nears my bell -- all too aware that it is coming close. If time is the only thing we really have, let it be full of events, people, places, moments, and joy (we can feel joy only in the presence of its counterpart: pain). I cannot fathom a life without time framing it, without beginning, middle and end. Henry does not like to think of the end and would take the immortality pill if it were ever available. I suppose I need clearer boundaries.

I've been re-reading comments on my blog. I enjoy re-reading well-thought out comments. In my post The Lonliness, The Struggle and the Profound Joy of Autism, Lisa Fischler said...

I highly recommend the book "The Spirit Catches You and You Fall Down" which is the story of a young girl with epilepsy. The book deals with issues of how we define illness, quality of life, adequate treatment, etc. according to our cultural beliefs and practices. Many cultures don't tolerate disability of any kind, but some consider it to be part of human nature and are able to see what is special and, more to the point, human about those in their midst who are a bit "different".

Maybe it's because we are so obsessed with success that we have a hard time appreciating what is joyful and worthy in any life, even one that is painful. Westerners have an aversion to difficulty and pain, to the point where we can't understand why someone would "want" to suffer - which is odd, considering that suffering was once taken to be noble and spiritually uplifting in Western religious traditions. I personally found a lot of value in a spiritual path that teaches that we don't have to "do" or "be" anything special in order to fulfill our life's work - that just sitting and breathing, or whatever you're doing, is "enough". Being 100% engaged with life, whatever life might look like, is doing life's work. This perspective says that life is worthy when you're imprisoned or oppressed, when you're ill or dying, when you're shunned or beloved or misunderstood.

And it has always struck me as foolish to write someone off as "damaged" when I've personally worked with kids who have defied the odds. I look at Helen Keller, Stephen Hawking, Temple Grandin, and other notable examples of folks with one difference or another who've been able to rise up, and the common thread I see is that these are people who fully engage with life and somewhere along the way had people believe in them at a critical time in their development. As long as our kids have that, who knows what could happen. Not that our kids need to be physicists or PhDs - they already are who they are. Just like the rest of us.

Considering my thoughts about another looming birthday, about the journey so far with Adam, and how I see he is growing before my eyes more quickly than I could have ever imagined, I have to let Lisa's comment envelop me. I have to remember that my life, my time, is not defined by how hard I work and what I seek to achieve, but by simply being. Success and achievement serve one final function -- to remain immortal. Gilgamesh (see Epic of Gilgamesh) worked so hard to achieve immortality and it fashions the way we live today. It drives business people, authors and artists to make art, write books, build buildings with their names on them. It is a difficult construction, this immortality business, this quest for Holy Grails, for Utopias, for Ideals. It provides steam under Eugenicist movements, while at the same time, inspiration that we all have something to offer in this world. Inspiration, Aspiration, Hope and Being also have their counterparts. It is up to us what we decide to build with our blocks of time.

I wonder if I can die content with the fact that I'll just be dust in the wind -- immortal only as long as Adam lives and remembers me. He is, however, my life's work. Time will certainly get me, but my legacy will live on, if only in him.


Blogger Do'C said...

A thoughtful piece as usual Estee.
I like the famous quote from Abraham Lincoln: "And in the end, it's not the years in your life that count. It's the life in your years."

12:07 PM  
Anonymous Anonymous said...

Considering the nature of human life, few worthwhile enterprises are possible for those who will take no avoidable risks -- no parenthood, little travel, few ventures in work or play and no speaking out against injustice. Estee you have courage.
A virture indispensable to the good life.


5:08 PM  
Blogger Kristina Chew said...

The Spirit Catches You and You Fall Down is a profound book that shows how the story of disability is told and treated through many fronts, disciplines, treatments. The book is written with an incredibly generous spirit in showing how even all the best good will cannot always sidestep tragedy--a tragedy that results not from any one's party's mistakes.

8:45 PM  
Blogger Stephanie said...

Time is the envelope we're sealed in...only we can determine the package it contains. Our time may be short or long, but it's ours. How we spend it, whether we struggle or choose not to, whether we laugh or cry or bottle it all up, says about us things only others will be able to interpret fully after we are gone. Time is something we experience, and those who are too busy trying to control it or stop it get caught up in it and lose it all at once.

2:53 AM  

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