There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

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Stacy is a successful editor of Redbook Magazine. She begins at “the end,” she says — when her husband declares without counseling or any other clue, that “he’s done.” He leaves Stacy to piece together all the possible reasons for his leaving (over 300 of them apparently, which she has numbered), as well as the pieces of her life and very being. She is left to raise her three-year-old son Zack and learns to become a single parent, throughout trying to figure out where she belongs.

Chris, her ex, hangs around a bit, although he clearly doesn’t take a role in parenting in the beginning. With all of her obligations, her job, her type A personality, Stacy stumbles, crashes, falls, and then swims into new existence for as long as two-years post divorce. She finds she does not fit into old social networks, is struggling to keep all the balls in the air, while dealing with an “evil” house that gushes water in the basement which she must repair before selling it post-separation. The theme of gushing water runs throughout her memoir as she finds a new home for herself and for Zack. The sound of water (and she even experiences the gush in her new apartment from a leaky toilet) haunts her in her dreams even as she has moved into her new place and it serves as a metaphor for her feeling of drowning post-divorce. “I was still afraid of my not-quite-ex-husband and the way he seemed to hate me. And I still had to start over on starting over, because here I was almost two years later still stuck, still falling apart, still floundering, still drowning, goddammit. Still under water.” (p.205)

What was startling to me was to read how such a confident, capable woman, similar to most women I know, was so scared and disabled by having been left. It was striking because no matter how competent we believe we are, the dissolution of a relationship, especially one with a child, can be so debilitating and take years of recovery. It is endemic of our society that we think we can plan everything. It is this belief that we can actually be in control that leaves us standing dumbstruck at the aftermath, wondering why it all didn’t work out.

Chris, her ex, seems supportive of this book, wherein she regards his unfulfilled dreams having been one of the reasons for their divorce. “He hated me for being capable. For dealing. For buckling down and handling the stress of life. For being someone who attracted stress into our life. For being someone who liked challenges. For being the person who would step in when he had to step out.” (p. 63) For letting Stacy write this, I give Chris so much credit and it attests to his strength. It must be difficult to read about your short-comings from your ex, your unfulfilled business dreams (which I hope have since been fulfilled). Yet, on balance, Stacy lists a multitude of her own shortcomings and she has to work through the perceptions of Chris about her as well as of herself.

“At night I could feel other reasons sneaking into my head. I caught glimpses of where Chris and I didn’t see eye-to-eye, the parts to me that I didn’t necessarily even like myself, the instances in our marriage in which I had been selfish or mean or ungenerous, the moments when I had doubted our relationship. Maybe I was a bad person. Maybe I wasn’t who I thought I was. Maybe I was unlovable.” (p. 40) “Every single piece of who I thought I was was being called into question as I sifted through our shared history, looking for my answers.” Stacy talks about how he called her an “unhappy person” and “crazy,” which seems to be, as she notes later on, Chris’ issue. Yet it effects her to her very core as she tries to heal from the breakup.

In one exchange, she gathers her wits and says to Chris, “‘I am sorry that is how you see me and how you experience me. And I know that you do. But I know in my heart that I am a generous and loving person.’ It was the turning point, the moment I realized that I didn’t have to meet anger with anger, that I didn’t have to marinate all the terrible things he wanted me to feel….I could also see that Chris was lashing ot at me partly because leaving me hadn’t cleared him of his responsibilities to me and Zack, but I knew that whatever anger he was feeling about that was for Chris to deal with on his own. In that moment of vulnerability, of being open to his anger, I sensed a strength in myself that I knew I could trust.” (p. 121)

Stacy shares so much of herself and of her struggle to stay afloat emotionally for herself and her son and she learns to grow into a new relationship with Chris while letting go of the dynamic they once shared. She lets go of all the “complicated reasons a marriage starts to fray,” and reflects on her friends and colleagues need for a reason — did someone have an affair? Who was at fault? Although she was the one who “was left,” she doesn’t have a high opinion of how onlookers need to find reason or blame, and postulates that perhaps finding those easy reasons (at least easy in terms of logic) shields them from the many cracks in their own relationships. All one has to do is to look at Elizabeth Edwards and not feel terrible after what she has been through. The fact that a woman has to be blamed for “emasculating” her man if he has an affair or two is just but one example of how society wants to find a simple reason for a failed marriage. Certainly we all want to believe that we are untouchable by the possibility of breakups. We all want to believe that what happened to our friend, that politician or celebrity would never happen to us.

Stacy’s moral is that no life can be planned, and as a arch-planner, this was one of her lessons. She says, “Life is good. Life is hard. These two truths are unrelated…Everyone has pain in their life. It counts all the same.” (p. 230) The truth is, it can happen to anyone. There don’t seem to be any rules we can abide that can truly determine a successful relationship. There are too many factors in life, too many circumstances, too many turns to be able to determine a cause for either success of failure. Perhaps too, there is no such thing. Perhaps we are simply fortunate to have had a relationship at all — no matter what the duration.

While she becomes successful at learning to leave Chris’ opinions of her behind and leaves him to sort out his own issues, I once again applaud Chris for allowing Stacy to write this memoir so honestly. There is not a hint of self-pity in this book and for every one of her perspectives, I believe she is fair and she cites many of her own “faults.” It is simply an honest tale of how two people have grown apart and their need to find their own paths. In writing it five years post-divorce, she also calls her own situation “fortunate” in that she and Chris are still raising Zack together. “I think about how Chris is a much better partner now than he could ever have been if we had stayed married,” she says.

When reading her memoir, I think back to how excited I was to marry Adam’s father and how we spent our thirteen years together as a couple and all the joyous and challenging days. I think about how proud I am of having had that relationship and having Adam come from it. I had always called Adam our “love child,” as he was conceived right after our marriage. I remember the courting, the planning and how excited we were from all of that and how the whole family got involved and how important it was for me.

It saddens me, however, that we still, in a liberal day and age when we are learning to get along in many different familial configurations, that divorce can still become so acrimonious, and how it can end so abruptly. It is devastating for so many people — family and friends combined. While anger is natural, it is just but one stage in the process of divorce. It was this paragraph by Stacy that I liked that I feel could help people heal better, in order to honour a partnership so significant:

“I believe there has to be a better, more connected, more compassionate way to help people around us honor the end of one of life’s most beautiful leaps of faith.”

And that is what marriage is. It is a beautiful leap of faith against all odds, and like Stacy, I’m still glad I did it. By being glad, by honouring the time we spend with someone, we permit ourselves to move forward with evermore hope and joy in our lives. It seems that both Chris, Stacy and Zack have been able to do just that.

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When I think of my youth I feel sorry not for myself

but for my body. It was so direct

and simple, so rational in its desires

wanting to be touched the way an otter

loves water, the way a giraffe

wants to amble the edge of the forest, nuzzling

the tender leaves at the tops of the trees. It seems

unfair, somehow, that my body had to suffer

because I, by which I mean my mind, was saddled

with certain unfortunate high-minded romantic notions

that made me tyrannize and patronize it

like a cruel medieval barn, or an ambitious

English-professor husband ashamed of his wife –

her love of sad movies, her budget casseroles

and regional vowels. Perhaps

my body would have liked to make some of our dates,

to come home at four in the morning and answer my scowl

with “None of your business!” Perhaps

it would have like more presents: silks, mascaras.

If we had had a more democratic arrangement

we might even have come, despite our different backgrounds,

to a grudging respect for each other, like Tony Curtis

and Sidney Poitier fleeing handcuffed together,

instead of the current curious shift of power

in which I find I am being reluctantly

dragged along by my body as though by some

swift and powerful dog. How eagerly

it plunges ahead, not stopping for anything,

as though it knows exactly where we are going.

—–
– poem by Katha Pollit (winner of the National Book Critics Circle Award)

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Much like how we view people and autism — that there is a goal that must be reached — that only one end result is desirable or feasible — we forget the journey and the process as the greatest creation of all. When all is said and done and the product is finished perhaps a few people will read our work, perhaps fewer will remember it (or as Elizabeth Gilbert and J.K. Rowling will attest — sometimes there is “freakish” success). But that does not make the doing, the making, any less significant. An act of creation is no waste of time. It pains me sometimes when I watch a culture so invested in the end result that we continue to churn out less creators and more factory-line producers in business administrators and lawyers (but let us not forget that there are wonderful creators in these professions as well). I have a real issue with “professionals” being churned out of universities, as I find that those without such degrees can be equally, if not more competent, in business. I believe university is an opportunity to receive the Universal Education – not a place to learn a trade. It’s not that I do not appreciate trades and craftsmanship, for I have great respect for it and also believe we undervalue true craftsmanship. I believe learning a craft is equally as important as learning philosophy, literature, art, and the sciences. My real point is, life is more than the products we produce. It is the intricacies, decisions, confusions and the work in between that is often more meaningful and interesting to us in the end. The “wax on, wax off” of the Karate Kid was more important than the rush to learn Karate.  If the process of our lives wasn’t important, we wouldn’t be writing and producing biographies of people and their private lives — we just wouldn’t be that interested in them. We always need and want to know the story behind the creator.

I like to think of writing a book or a blog as a process as important as writing the Book of Life. As I went to a funeral last week, the Rabbi concluded that the “book of [the person's] life had now ended.” Our lives are complex narratives. We are reluctant to put the book down. When reading, we have been so invested in the journey. If this is not testament to how important a process is, I don’t know what is.

It was listening to a number of authors last week talking about process that I realized we are not a culture that appreciates it very much while it’s underway. We have our eyes on the prize.  One author even stated that there is no such thing as a failure in writing. We must have many of them. In this sense, there is no such thing as a failure.

I’m still writing and doing a lot of research now that the bones of what I want to write seems to be constructed.  The research is so much a part of my journey that I can see how some writers may not want to stop. Yet certain chapters have to be written. Some have to end. There is always something new to write about. There will be an ending to mine soon. But until someone reads the last sentence in my own Book of Life, I’m going to try and continue to relish the process.

I hope it need not be mentioned that this post is a metaphor for all of life, and for our autistic children with whom we place so much stake on performance and end results. It seems a bit of a let-down to have to spell it out.

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I have to admit I’m dreaming of a little white cottage on the beach by the sea. For some reason, I think I’ll just be pumping out the writing there. Isn’t that how we all dream it will “happen,” without the reality that it just takes daily effort and practice? But ah, the dream…. For now I settle for handwriting when traveling. I wrote a novella during my last trip Paris in the coffee shops where no real Parisian would dare to be seen writing. It’s what labels me a true foreigner there, apparently, alongside how I order my coffee and what kind of coffee I order at any particular point in the day. Yet I didn’t care. I loved every minute of it.

I’m interested for all you bloggers out there, when it’s the best time and place for you to write. I’ve got my little white office and I stare out at the street through two thinning pine trees.

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What does it mean to “be seen?” I mean, out here in Miami there is no lack of men and woman stripping nude, or nearly nude, wanting to be seen. Hair coiffed just so, a pair of trendy sun glasses and a spray-on tan, and off they go into the public to show off with their heads held just so –  pretending as if they are not aware that others are staring. These people may want to be seen all right, but they want us to pay attention to what they want us to see. It is a far cry from being seen.

If you think this post is about relationships it certainly could be. This is the meaty stuff of what makes or breaks many of them and why life is so hard sometimes. In his book Double Take: A Memoir, Kevin Michael Connolly travels to more than seventeen countries and captured 33,000 photographs along the way about the way people see him. Born without legs, “being seen” takes on a whole new meaning.

The photos in his book titled The Rolling Exhibition (named after his rolling around on a skateboard: “This Is A Legless Guy’s Skateboard. Please Please, Don’t Steal” he writes upon it), have been featured at museums and galleries around the world. They are taken from his perspective, low to the ground, (he is lying on his back when he takes some of them) with people staring down at him, which of course has a pent-up meaning in itself when talking about disability and the way people stare. They are passer’s by, whisking past him and he has caught their fleeting yet loaded glances. How could one describe them? Curiousity? Fear? What does it mean to be a subject of a stare when you have not intentionally invited it, unlike those plastic Miami boobs?

(Interesting to go off on a tangent here to recognize that those fake boobies are in the same sense a prosthesis that we admire rather than fear. Of course, we have the same curiousity and sometimes repugnance at the fake boobie because we understand that some person has intentionally gone under the knife and altered herself to make her more attractive for sex and they don’t look quite real. So we stare to make up our minds, or stare because we are just so darn curious. Aimiee Mullins, who has designed for herself a series of gorgeous looking prosthetic legs that can make her various heights has also noted the lack of difference between her legs and the many prosthetics men and women now use by choice in order to alter their appearance).

Like the performance artist Petra Kuppers, who with her disability stages performances that also investigate the stare, in fact invite it, Connolly has invited it by his being born with bilateral amelia (meaning born without limbs). It’s an unintended invitation, like being born into royalty with paparazzi following your every move. You don’t ask for it; it’s just sort of a birthright and a burden, whichever way you look at it — they seem to go hand-in-hand.

What I love about the camera is that it’s like staring back.  Being a photographer means you are like a voyeur, capturing other’s most private moments. One simple glance or expression, as they saying goes, captures a thousand words. Connolly has taken the stranger’s stare and turned it back on them. It’s rather empowering to turn the investigated into the investigator.  If I were Petra Kuppers, I’d be performing. If I were Estee Klar, I’d be writing. It’s what people who need to express a point, do. The camera captures private moments the way people stare at many disabled people who cannot fend off the stare. Often, we are intrepid lenses unwelcome in private moments. Yet Connolly, like all people who put their expressions out into the world has a conscience as he reflects in Sarajevo:

“What’s wrong,” [Beth] asked softly, her hand on my back.
“I don’t think I can shoot this anymore.”
“Why not?”
“I think I’m hurting people.”
“How?”
“People think I’m a beggar of someone who was hurt here.”
“Well, yeah. Maybe some people. But that doesn’t make you any more of a beggar than you were a month ago. You and I know who you are, so don’t let it get to you.”
“Yeah, but I’m using them for the photos.”
“So? It’s not as if their entire day is ruined or anything. You’re getting too wrapped up in everything. If you stop shooting and just quit, you’re going to hate yourself forever.” (p. 198)

It’s a question of art to a certain extent — this idea of truth-telling and who and what moments we use as subjects. When we take our personal experiences and use others to reflect a truth, are we doing unto others as they do unto us? The discussion about staring at people who look different or disabled is a sensitive one, and the more others can see themselves, the more we all can understand the effects of what we do everyday — those things we think are harmless like taking about an autistic person like they are not present, or criticizing the family, the parent, or autistic individual who needs to fight for things that come automatically to other families like access to education, services, and just acceptance into our communities without having to talk about autism, acceptance and the like. From a personal point of view, although I have to end up talking about it, I don’t want to talk about it everyday. We want (and deserve) to live our lives with autism as does any other person who wants to live their lives in peace, without having to justify the reason why they deserve to be here — why they “have” autism, where it “comes” from, or why they should have access to that school or that aide.

As a writer who likes to write about certain instances in our day-to-day lives — from the person who stares at Adam’s wildly flapping hands, to the friend whose account I once used about, when I was new to autism writing and the idea of “normal,” her desire to change the appearance of her child’s ears (I used the story about our quest to make our children appear indistinguishable and in Adam’s case, it’s simply impossible) — it’s really difficult to write about these real-life events. Yet there is a need for many of us to write, or make photographs and art, about them. It seems that everyone is sensitive, but the context in which these accounts are written are important. The consciousness of  not wanting to hurt other people, seems to me, is a must in the making of art, not that the hurt won’t be there. In the world of black-and-white autism politiking,  there is a need for education through thoughtful literature, memoir, art projects like Connolly’s. These projects help us understand life from a different perspective, and because it has been “done to him,” Connolly has a need to state his sensitivity. The outcome of his work is worth it. Like art and writing, the poignant point is made when it is evident that the artist has weighed the cost and the benefit of telling true stories.

In his Epilogue, Connolly reflects how the looks, no matter how experienced or hardened we become, still effect him:

“As these pages show, my lack of legs has generated a lot of strange looks. Those stares still get to me sometimes. Sometimes I wonder if I should explain myself to the people who shoot a sad direction in my direction. Maybe, if it would relieve that moment of guilt or pity from their lives, it would be worth it. But most of the time, I let those stares slide off my back. A lot of times, I don’t want to talk about my lacking legs.

Maybe it’s because dialogue has a tough time blooming when it’s about negative space. There’s only so much you can discuss about something that isn’t there, and isn’t forthcoming. And rather than try to make a bad riff on a Beckett play, I’d prefer to end this page with what I do have…

So maybe the reason I’ve been so frustrated at times by the question What the hell happened to you? [what caused your son's autism? -- my interjection here] is because it’s simply the wrong one to pose. It focuses too much on a physical circumstance based on a singular point in time, rather than on all of the influences and characters that followed.

Perhaps Where the hell did you come from? is what we all should be asking.” (pp.226-27)

I would agree. It would be nice to be asked that question rather than “what happened” to us, even though autism is certainly a part of our lives. The question is, Do you see me? For Adam and I, and Kevin Michael Connolly, it seems, it means the whole package.

—-

Kevin Michael Connolly, Double Take: A Memoir, New York: Harper Collins, 2009.

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Over the past ten years, I’ve written two books, both incomplete and yearning to come together. At the Humber College for Writers and The University of Toronto, where I’ve attended writer’s conferences in the past, I was told that one’s first book takes about seven years to accomplish. Other writers have told me ten to fifteen years, which had me scratching my head at the John Grishams of the world and how on earth could they churn books out so fast. With my extraordinary impatience and harsh self-judgment, a difficult year has introduced me to some gentilité with myself and with others. So please “God,” this just has to be my year.

Thanks, John Baxter,  and his punctual rendezvous avec moi in front of Les Deux Magots, and avec Flannerie along Rue de Bonaparte and Rue Jacob, taught me a little bit more of the Paris that once belonged to Hemingway, Fitzgerald, Joyce, Miller and Gertrude Stein, among some other great literary figures. Thank you for also letting me hold a letter from Anais Nin to Jean Fanchette. I have come to realize why I became a curator but to understand the importance of preservation and memory.

I would recommend anyone out there to read John’s memoirs from Paris. He has written a series of that help describe the underbelly of and life in Paris.

It was not difficult to be alone in Paris and John’s paragraph caught my eye when I ran across it: “For a woman, Paris is a good city to be alone…Most of the expatriate writers who, since the turn of the century, created our image of the city — Edith Wharton, Jean Rhys, Janet Flanner, Nancy Mitford, Mavis Gallant, Dianne Johnson — were laureates of loneliness, who, even though sometimes married, preferred to live and work by themselves.” (page 137, Harper-Perrenial edition, 2005.) So here I was, a “ready, set go” decision to go to Paris, meet John, Leda and write. Another “laureate of loneliness,” but with no complaints.

Which leads me to also thank profusely, my long-time friend and pianiste extraordinaire, Leda Perac, who is another laureate living in Paris. I studied and became great friends with Leda in Germany fifteen years ago in colder, hungrier circumstances, nevertheless playing and singing our way through it all with Tori Amos. This time, having dinner in Le Châteaubriand with my face, she noted, visibily drawn from flight-fatigue, and undoubtedly the weight of a difficult year, she presented all of the letters I had sent to her in German when I returned to Canada in 1995 and 1996. Reading them between courses of poisson and some flirtatious chitter-chatter between myself and our exceptionally handsome waiter with the beautiful smile, I required her to translate the some of the very words I had written fifteen years later, to my chagrin. Leda, you helped bring back memories that remind me of who I was, who I am, and maybe more importantly, why I am.

And thank you, Paris. You gave me Adam, love, and fifty-two good pages. I’m ready to really begin.

Vive la présentation et le préservation.

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After listening to La Vie En Rose, I booked a last-minute ticket to Paris. I leave next week to meet my girlfriend, Leda, who I became friends with while studying in Europe fifteen years ago. Leda is a pianist and her father is a well-known composer from Zagreb. I mention this because I need my artist friends. I need to be around them like I need food or else the daily ups and downs of markets confines the spirit to downward spirals only waiting for outside influences to send them up again. Art puts everything into perspective and reminds me that its wonderful to be a part of the human drama. Perhaps because of our foreignness in a foreign country — we were both struggling to be part of German life in a town called Frieburg – and because we shared Croatian roots, and maybe just because we both loved music, Tori Amos and lots of laughter, we became good friends.

I met Leda again in Paris while I was married a few years ago. Our visit was too short. My ex was not that interested in listening to our memories, which made me feel pressured to cut my visit short with her as most of us do when we know someone is waiting. Thanks to email and Facebook, I’ve reconnected with many of my friends and I decided at the last minute to meet her next week.

I don’t know if it’s part of the divorce process – that bucket list of things we’re going to do only because we are not married anymore. Or perhaps it’s due to the sheer desperation to find and become something new, someone different, and the best way to begin is with a list. Like a compass, it can point you in any direction. All you have to do is choose.

It’s difficult, though, to travel with a child waiting for me at home. A child who knows poignantly when I am not with him, with his few but precious words, I am told, says “mama…mama…” and who is visibly missing me. If Adam only knew the sickness in my stomach that I feel every time I leave him for just a few days. I hate that he misses me or thinks I am gone forever and I worry about it until I’m nauseous. It stopped me from taking many long trips my ex otherwise wanted me to take with him. When your child cannot talk easily with you about his feelings or over the telephone, the worry plummets deeper. So I only booked myself away for five days.

In the earlier days when I knew Leda, when we were younger but not less hopeful, I would have booked several months away under similar circumstances and I would challenge myself even more. It’s like teetering on the edge of an old and new life like standing on the Prime Meridian in Greenwich, which I actually did once at The Royal Observatory. Real and imagined, even with five days, I am crossing a line. While I always hate leaving Adam, I still feel a rush of excitement about going to the airport, which despite the relative ease and economy of travel these days, and with delayed flights, packed airports and flaring tempers, still elates me and I might as well be back in the 1950’s traveling as far and foreign as Asia. I feel excited watching all the people getting ready to go to their destinations – people who speak different languages. I will fiddle with my bag, dig out my book and sit beside strangers knowing that just one conversation can change a person’s life. I love the smell of engine fuel and the sound of them revving before lift-off, the movie selection and bad airplane food and the struggle to sleep because tomorrow will be well underway when I arrive.

As I prepare by launching into a temporary state of transformation, I listen to Parisian music. I have booked a full schedule of concerts, literary walks and dinners with Leda when I arrive. I will bring my journal, put on red lipstick and pearls, and smear my coffee cups and wine goblets with red stains, and find a good pen to buy. I can almost smell the Marlboroughs in the air, and hear the echoes in skinny lane-ways on the Left Bank of lovers talking and giggling and the sound of my feet behind them like Anais Nin’s as the night clears the air. In Tender is the Night, F. Scott Fitzgerald describes the phenomenon of people changing and becoming like the environment they visit. While witnessing a group of Americans in Paris he describes them as “undergoing a sea-change, a shifting about of atoms to form the essential molecules of a new people.” Travel, he implies, changes us and I yearn to be changed, if only for a week in time.

I am ready walk out into my life again in my little black dress — of rediscovering myself and perhaps who I will become. And I am discovering myself also as a single parent to my son who, even while schlepping to parent-teacher meetings, Adam’s team meetings, O.T., SLP and other like meetings in her Honda, enjoys her red lipstick and Coco Chanel. Discovery is a wonderful thing, and we can be many things to ourselves and to others. But most importantly, the best kind of travel and adventure is the kind where I know I still have Adam to come home to.

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There are some things that silence me for a few moments. The death of a child, the poignant line. Vicki Forman’s This Lovely Life: A Memoir of Premature Motherhood does both. About the premature birth of her twins, the death of one child and the survival of her son with multiple disabilities, Vicki must navigate life’s toughest challenges. Just the first paragraph alone will be enough to make you gasp, sit silent and want to read the rest of her book:

“I learned about grief during this time. I learned that no matter the true temperature, grief made the air crisp and cold; that it caused me to drive slowly, carefully; there was very little I could eat. I learned that I didn’t notice things until they flew out at me and that most stories and books and news articles were unreadable, being accounts not of the events themselves, but of me. Of what I had lost and would never have again, of what I had once allowed myself to want, the things I used to love. Of small consolations no longer available. I learned that my heart could stop and start a dozen times a day and that my throat felt so sore and tight I often had to swallow air simply in order to breathe. The world receded; everything took place in slow motion and was viewed as if down the wrong end of a very long telescope. So much was unfamiliar that if I was asked my name, I had to think for long moments. ‘Grief is a visceral process of disengagement,’ a friend said. In my grief, old versions of disembodiment became a cruel joke. You thought that was bad, not being able to walk into a roomful of strangers without disassociating or turning remote and distant? That was nothing. Try this. Try heart-stopping, immobilizing grief.” — Vicki Forman, This Lovely Life, Houghton Mifflin Harcourt publishers, 2009.

Tom Bissell, who writes the forward describes Vicki’s journey well: “She does not claim she is always correct; she sometimes expresses anger at certain doctors, and she occasionally behaves in ways that some readers may find appalling. But just as this is not a depressing book, it is also not an angry book. It is a book filled with love and wonder — enriched by the kind of grief that those of us who are not parents cannot imagine and those of us who are will not want to.”

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As Adam grows older, I’m interested in books that have meaning for us without hard-boiled moral endings. Books about the dentist are good. Books about doctors — good too. The books I come about autism and friendships are okay but the majority are made with the intention of raising money to cure the child which minimizes the purpose of not only the message, but the complexity of it.

Remembering the Wild Boy of Averyon, I decided to purchase the children’s version by Mordicai Gerstein.  When found in the wild living among the animals, the “Wild Boy” was brought to Paris.  He was found living successfully in the wild. Yet trying to “civilize” him in Paris was a challenge. The boy, never having been socialized with humans, could not talk. His sensory system was different (he could survive in the cold winters without clothes). He was observed and stared at as a strange creature, and written about in the media to the fascination of all who read about him. Because he didn’t listen they determined him to be deaf and mute. Of course, the boy tried to run away back to his woods, but he was captured so that scientists and scholars could study him.

He ignored the sound of guns shooting next to his ears, but not the sound of a cracked walnut in the next room. “He loved walnuts.” He would not eat the food civilized society gave him, but only nuts, potatoes baked in the coals. He didn’t seem to feel pain as they pinched him. They could not get his attention with toys and after weeks of examination.

“‘The boy’s behavior,’ they said, ‘places him below all animals, wild or domestic. He is hopeless.’ Then they lost interest in him.”

Until John-Marc Itar, a young doctor cared for him and decided to teach the boy he named Victor.  He began to learn the things Dr. Itar taught him, but he could never learn to talk.  Then,

“One sweet spring morning, Victor woke and, without thinking, ran off to find the woods. He became lost in the suburbs of Paris and spent the night hiding in a park till the police found him.” They brought him “home.”

His hair was combed, he could set the table, he was proud of himself when he could solve difficult problems. “He wasn’t wild anymore.”

“But he did remain silent, and could never tell of his wild life. And something of the wild was always in him….The sound of a rising wind, or the sight of whirling snowflakes or the sun bursting from behind a cloud made him tremble with excitement and wild joy.” Victor would gaze every night at the moon and the doctor would wonder what he saw there.

—–

Mordicai Gerstein, The Wild Boy, Sunburst Edition, 2002.

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The mother always has to think twice. More like a thousand times a day. A mother has to wear a shield around her so she does not upset the children she loves so much. A mother has to be solid, grounded — a monolith MOTHER as described on the tombstones in Mount Pleasant Cemetery in Toronto where many of us Torontonians walk and run through every day like Central Park. I know, it’s a more melancholy park, you’re thinking. But it’s truly spectacular for it’s scale and landscape in the centre of our city. I walk by stone angels here almost every day. “Beloved wife of,” “Mother of.” That seems to be our legacy — and while it is an important one, it is peripheral and lonely. I am reminded of Margaret Laurence and her Hagar.

MOTHER – it describes everything and nothing out here in the cool fall air. If I were not a mother, I’d be pining to be one, envious of the epithet. If you don’t know me, now you do in part. I wanted a child so badly and had I not had one, I’d be crying now. I walk among the stones reading them, picking up brown oak leaves that smell fragrant as they decompose, wondering what my stone will read. I gather the oak leaves in my hand because that’s what I do when I go out on my walks. I collected my first three four-leaf clovers this year after looking for the previous forty-two of them. I would look for hours as a child. I’d search within the thick bush of clover knowing that one day I’d find my luck, but all I found were the common three-leaved variety. The rich green mass became too overwhelming to continue the search, and mother called me in for dinner. I found three this year when I wasn’t looking, and in the nick of time. Going through a separation while recovering from cancer surgery was the worst event of my life, so someone wanted to tell me something, I figure. Now, I pick up four oak leaves because the oak tree symbolizes strength and courage and you must know me — I’ve got a lot of that.

We are born into this life, a blank slate of possibilities and stories to be written. The stone that remains is a summary. The men in this cemetery typically get some interesting descriptions – heroes and veterans particularly so. I look for the mothers and wives, thinking that, like the sullen ambrosia of the leaves and earth, our time here is short but never lost; the earth and leaves beneath my feet are the smell of life that goes on forever. Dust to dust indeed — our fragrance is sweet.

Among phallic monuments erected to the family name or patriarch of the family, I’m particularly drawn to a modest stone laid just before it on the slant of a gentle hill. Sitting low to the ground, an older worn stone with the block letters spelling MOTHER. She is modest there in front of the huge piece of marble pricking the empty sky.

Underneath the “monolith,” the woman’s world is rich and wrought with things some children will never know. Why is it that men do not hide their desires as well? Why do they live out loud? Why do they get to?

It’s a problem, really, as a writer. I could dress her up in fictitious clothes – a universal mother, woman with desires and unmet dreams, who has been hurt, who has stories that can never be told, or if they are, told carefully.

I write around and around her like a rubber tube spinning so much harder and faster than the centre of the rim. The core that stands so open, awaiting the spear of the archer’s arrow, or my pen. Yet it compels, so to want to get to know her. I wish I could grab a cup of tea and look through her photo albums, have a woman-to-woman chat. I bet she shared her life with many of her friends. I bet she has a great story that should have been told. I bet it would have helped my own.

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Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his “Rinse the mouth – rinse the mouth” with the greeting of the Deity stooping from the floor of Heaven to welcome us – when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.

From “On Being Ill,” by Virginia Woolf. First published by the Hogarth Press, 1930.

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She said it after I pulled out the fishbone from my throat – about an inch and a bit long. I did it outside, after they said the meal was on the house, choking next to the kitchen asking for help quietly.

“You should have seen your face,” her eyebrows furrowed with worry, “it was going red.”

It was my usual fish – the filet of sole that I always ask to be de-boned. We were enjoying an evening out, two single women — admiring, being admired and that’s enough for the soul to ride on after a long swim in the dark. Just opening up can be enough. Opening my mind, my world, my eyes and the whole world smiles with me.

Until…I choked.

On a fishbone.

Almost choked to death as we headed to emerg.

Emerge.

And then I pulled the little bugger out, giving the term “dig deep” a whole new meaning, there, outside on the sidewalk away from the people, wondering if this little fishbone “was it.” This little soft bone the thread between air and breathlessness.

“We can never take for granted the little miracles that happen every day,” she said again, shaking her life-affirming head and pursing her lips. “You better frame that thing.”

Perhaps I should as the little reminder of being one step away from floating with the fishes.

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It was your idea,
your invitation
upon the podium I stood.
You wanted words of hope, I thought -
Of the little engine that could.

Lauded once and quoted some
for better and for worse.
There I learned but also burned
A scorch within the wood.

Shaded once by gilded trees
like cold metal – forlorn.
The artifact, the word, the thought
A dropped seedling in the dirt.

Cut it down, say no more,
words of love be gone!
Do not remind us, this plight we lead,
or of dreams – you cling on.

Be gone you feckless writer!
Just who do you think you are?
If we smite you and apprise you,
You can go — afar.

Of books, of words of thoughts and form,
some mold and shape and bend.
With exaltations and deflations,
An artist’s life is spent.

— by (me)

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Tomorrow, I’m going to write on one. Pretty much everyone understands how writing by pen, on the computer or on a typewriter can lead to different kinds of writing. I write my journals in ink. They feel sensuous and intimate when I write that way. The computer is great for blogging and writing articles, and yes, I’ve written a few chapters on the computer and I tend to type very fast. Yet there are just too many distractions here on my computer — Facebook, Twitter — man, I’m a pro. Yet other than the social aspect of this media, who really cares what song I’m listening to? To use the media wisely is to get out the word about the work we wish to promote.

So tomorrow I will see how writing like writers used to write feels like. The only bug may be that the tape might be out of ink and I’ll have to go hunting for some down on Queen Street.

And, if you are into distractions and procrastinations, here’s another site to distract you NaNoWriMo writers that I found today (while I should have been writing, of course — thanks Vicki Forman). I’ll keep you posted when I figure out how to download it.

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There sure are a lot of ideas and words in that book. Like NaNoWriMo, I can claim my 50,000 words and then some. But as lovely as the weight of words feels in my hands, they are not woven together.

Weaving together is the art of writing. I can draw the perfect picture in my mind, and even watch my hand create it, but when it comes down to getting down to it, one just has to keep practicing. It’s never as easy as we believe in our minds, for what’s being created in our minds cannot be expressed as easily when we have to coordinate our bodies. There may be the will to create, even an idea, but the act of doing is much more difficult.

As a curator of art I was always mortified when some bloke would try to get under my skin and proclaim of a Barnett Newman painting that “I could do that at home.” I suppose some people believe that artists are sometimes pulling “a fast one” on us, but I think it’s a lot more complicated than that. There are a lot of “notes,” run-on sentences, thoughts and other bodies of work before the final product is complete.

If I could sift my writing (as in a Barnett Newman painting) and get it as tight as a few poignant lines on an otherwise empty canvas, that, for me, would be an accomplishment.

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It is a pleasant coincidence that November happens to be Novel Writing Month at Nanowrimo and I decided to join (partly to become part of the community again). Nanowrimo requires 50,000 words by November 30th, but it’s the end product I want by next year.

Let the writing begin.

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Chicken coming soon.

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—-

We are all storytellers. The only difference is that some of us write things down. The other difference is that some writers are also artists — able to craft a work in order that bigger ideas are suggested, open-ended, and not written as if to strike a blow to the head. In other words, it’s much more effective to create the sublime message in a work of art in order to convey an impactful message, oftentimes, than simply stating the message itself. Art is the bridge to understanding humanity.

In my last post Why Do We, As Parents, Write? (see several posts down), I mentioned that I was trying to respond to a series of self-inflicted questions. Several of the questions all have generally to do with the consequences and benefits of writing about children with the additional peril of writing about disabled children — usually children who cannot speak for themselves.

As I’ve noted, I have numerous reasons for raising these questions at this point in my four-year blogging history. Firstly, I am going through a divorce. I hesitate because the story I would tell would still be influenced by my being too close to be self-deprecating, no matter what the circumstance. I tend to think that all great memoir writing about difficult life circumstances has this element in it: the ability to see oneself and one’s on imperfections even if the action towards you was unjustified, as well as the ability to be compassionate to characters who have done unjustifiable acts. In what I believe to be interesting narrative, everyone has their reasons which leaves out judgment. To understand others and their motivations is the foundation of all good writing and formulation of interesting characters. Of course, I am, as they say, still “too close” to write about my personal life, if ever I do at all. I will likely have more interesting things to write about.  In order to tell really good stories of truth or fiction, we need to understand our perspectives and assumptions at a particular point in time. Without dissecting them, our writing and characters remain flat.

One concern I have is for my son to read what I write about him. I want him to feel that I was real and wrote about him with truth, compassion and dignity. Compassion is the key to telling true stories, I believe. I want him to think that I was a good artist who didn’t have to expose every detail, but got the bigger point across. So, I have made a commitment to him and to myself to write when I feel I can truly step away from things that are still emotionally charged. It’s not that I want to be emotionally distant – indeed my emotions are a full part of my experience and they need to be written.  It’s the manner in which I’m able to write about them that matters. It is the art and the craft of writing that can elevate a trite piece of writing to a piece that lives long after we’ve moved on.

The next issue I am having is one of revealing details about my son at this point in his development, perhaps influenced also by a divorce process (and thankfully both mom and dad are doing an excellent job as parents, still) as the vulnerable need not be made more so. This is my paranoia as his mother and I realize I am supposed to think about such things. It is my job and obligation. Even if he is resilient and strong (as we parents generally come to realize about our growing children), we are on our guard nonetheless. Writing about the vulnerable – be it children, disabled children who can’t speak for themselves, disabled adults, the aged and so forth, requires us to think much more deeply about how we write.

As I see Adam develop, my attitude has changed and softened significantly than at the time of his diagnosis. I think there is a huge urge of many parents to write about the diagnosis because there is narrative tension that is still interesting to the outsider. This is when most writing about autistic children really gets done. We read perhaps too much now (just think that a few years ago there was very little), on that D-Day or “diagnosis day.” There is a lot of interest from new parents of disabled children to relate to the pain and conflict of early diagnosis. Little is written about learning how to live with a disability in the sense that the worry dissipates. Mostly, what we read are memoirs about how parents seek to cure their children instead of learning about themselves as parents in a world that is filled with different kinds of people. Donna Williams remains the top of my list of autistic writers who not only write beautifully and artistically, but tell a story that goes beyond childhood. The tension is still there, but the story isn’t sensationalized for the sake of selling books.

Let’s face it: our lives are not like everyone else’s, which is why so many of us need to write.  “Suffering has always animated life-writing,” says Arthur Frank who has written about his own illness. Indeed that familiar theme of finding peace, a spiritual awakening, an appreciation for life itself, is a kind-of triumph-over-struggle theme that appeals to most of us in a challenging world. I think of Audre Lorde and her cancer diaries and poems that I devoured after my two cancer surgeries last year. Her honesty and artistry helped me see myself as fully human even with my stage of dwindling self-image and pain.

Yet what is especially disturbing to me is when that theme is diluted into a sugar-coated story, only telling of the good stuff — you know, how all our children are “angels” kind of rhetoric.  To my chagrin, I’m afraid that much of the “acceptance movement” has turned saccharine and in it a fear to acknowledge the challenges and the pain as well as the joys.

Conversely, when all a parent does is complain about how horrifying their disabled child is and disruptive to their lives, without qualification or deep circumspection, is equally if not even more disturbing, for we get a sense that we are not being told the whole story, or perhaps a story with a particular agenda and worse, we are being told that disabled children are a blight and burden on society thus threatening their right to exist. So in order to write a good memoir, and how we define what is good if not ethical life writing is what’s at stake here.

Frank says, with regards in how to respond to illness and disability, “what is done within the body, what happens in relationships and how existential and spiritual attitudes change – is presented as a sequence of choices. The writer’s identity becomes crucially implicated in how she or he makes these choices: a person’s responses are a measure of his or her character.” (p. 174 The Ethics of Life Writing).The stories we choose to tell and how we tell them in the case of writing about our children, is therefore an indication of our character.

Somewhere along the road to raising children, either at the time of birth or later on, our expectations were thwarted. That in and of itself has been enough to warrant many people to approach us and say, “you should write a book!” But how good of a book? To what end? What are we trying to achieve?  My soon-to-be ex husband even came to me regarding the circumstances of our divorce stated “if I were you, I would write a book about this.” What an invitation!! Not that I will necessarily take advantage of it for my own personal gain, for that is not the point here.

I did, in the past, write about many encounters with friends and family regarding discussions about autism and their reactions to Adam to which I was angry (an honest emotion), but used as illustrations of a day-in- the-life of an autistic family. I felt that these examples were especially important to illustrate how our society has been trained to react and respond, no less treat, disabled people. Those encounters in mere blog posts were enough to achieve that tension. In as far as maintaining relationships is concerned, some managed to stick by me and support the purpose of the posts, and others couldn’t handle seeing themselves within the narrative. I once received an email from a friend’s husband referring to my writing as “getting things off my chest,” thereby diminishing my feelings, our significant experiences and my writing. Yet, I write and express to get things off my chest, that’s for certain. It’s just that I hope not to sound pathetic doing it. I hope the writing transcends the individuals to illustrate the more important points –  and the point that we all have much to learn.

But isn’t that what writing, gossiping, telling stories is all about? I am making a general assumption here that all gossip is negative, which isn’t necessarily true. I will also suggest that gossip, for the most part in my view often has the sole intent of denigrating another person. So in telling true stories, intention matters.

Telling stories, it can be argued as parents of disabled children, is still important. It is especially important that we as parents write  well — truthfully and with dignity. I cannot say that I have accomplished to my satisfaction, the “writing well” part. To accomplish this, it takes great deliberation and like anything, practice. To live with disability in the family, as in any other oppressed minority group, is to also live politically whether we like it or not. This adds another sensitive dimension to our writing.

Many parents of typical children will not experience this to the same extent, if at all. For me to tell those stories during those early stages of Adam’s development were exceptionally important in navigating our way through ignorance and understanding it – my insecurity about such statements admittedly came of a place where I was also in their shoes, that is the shoes of the ignorant – completely unaware of the full extent of disability itself — meaning the community, the politics, the meaning and history of disability, the lives. Should I keep these stories to myself or do they benefit not only myself in my growth as Adam’s parent, but also others who are on the same path? Would those people still be my friends if I hadn’t of told those stories?  What is friendship anyway if we cannot be honest? Right…? (I am happy to report that the really great friends still hang around even if rigorous disagreement or debate is involved). Of this I would emphasize that the intention is important with regards to telling our stories. It might just be difficult after all, to be a writer.

In her essay, Friendship, Fiction and Memoir: Trust and Betrayal In Writing From One’s Own Life, Claudia Mills  discusses the risks of writing about one’s family and friends and seeks the meaning of friendship as her guide. Using Aristotle and Kant — “we seek the good for the other for his own sake and not our own,” (Aristotle) and “The strictest friendship requires an understanding friend who considers himself bound not to share without express permission a secret entrusted to him with anyone else,” (Kant)   –Mills painfully deliberates, as if her conscience is eating at her: “What contexts are we primae facie justified in sharing the stories of our most intimate associates with others?”

She suggests that she couldn’t have relationships if she couldn’t talk about them – that we benefit from talking about them and notes how secrecy can be “corrosive and damaging.” Yet there is a difference between talking or writing at someone else’s expense, as I said, in order to hurt them. While telling the truth may be hurtful to others, or be outright embarrassing, it is this shame that is the most costly to our peace of mind. There is nothing more liberating than living your life out in the open. But living mine out in the open does not necessarily mean I have the right to live Adam’s out in the open for him. So we must choose our vignettes and words carefully, without over-editing which also takes away from the authenticity of an interesting story. Mills takes the easier route and chooses to write fiction, even though her family and friends seem to recognize themselves in her stories.

For parents with disabled children, this writing can be a cathartic process and a way of breaking down the reductive view of our disabled children. Arthur Kleinman, in The Illness Narratives, suggests that people who are ill are reduced as people in terms of their pain and debility, or their illness. That proverbial medical view of the disabled person as a mere patient instead of a complex individual remains a part of the demoralization process. Instead, Arthur Frank turns it around. He calls his personal narrative a “remoralization process,” an act of telling a counter-story to the ones that we see all too often in the news and Hollywood and much of literary media where disabled people are used in the background like bridges to the “real” characters. In looking at narratives like Michael Berube’s Life As We Know It, and Thomas Murray’s, The Worth of A Child, and Cranes’ Aiden’s Way, among other parental narratives, Frank points out that we as parents write in order to break down the assumptions – that our writing can be “acts of justification” as we write to justify our children’s right to exist.

As I continue my writing and work to become a better, more artistic writer (I am hopeful with much more work), I am aware that to summarize Adam as a series of impairments, to finalize his character in the narration, is what the medical community already does. So I want to avoid this at all costs. “[Reflexivity] is moral work, since what’s at stake is personhood and its entitlements.” Most of us are all too aware of society’s rush to categorize our kids, to judge them, reduce them instead of viewing them as people with a right to be included in everything.

This is a great risk that we undertake as parent-writers — this act of finalizing our children, defining them  and thus imposing identity that has really not yet been fully formed.  As Frank notes about the writers of the exceptional memoirs cited above, “They resolve this dilemma, and keep a dialogue open, by refusing to say any last word about their children. The child’s future – his or her horizon of possibilities – is kept open, though this requires nothing less than redrawing the horizons of human possibility itself. These writings become teachings in the morality of respect: not principles of respect, as in Kantian respect for persons, but practices of respect, which the writing not only describes but reflexively exemplifies.”

I hope in my next post about writing about children, I will be able to compare the recent writings of Jenny McCarthy and Temple Grandin’s mother’s older book A Thorn in My Side, in order to illustrate what I consider to be problematic in the name of our children’s dignity and telling our true stories.

As for my story, it’s easier to dance around it than tell it at the moment during my set of current circumstances. I am only left with the deliberations of what and how to write next.

References:

Credit for the term “narrative tension” goes to Arthur Frank in his essay, Moral Non-Fiction: Life Writing and Children’s Disability, from The Ethics of Life Writing.
Claudia Mills, Friendship, Fiction, and Memoir: Trust and Betrayal in Writing From One’s Own Life, from The Ethics of Life Writing, edited by Paul John Eakin, New York: Cornell University Press, 2004, pp. 101-120
Ibid, p. 102 & p. 110-111.

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