Estée KlarTo Get To The Other Side

I’m wishing all of you a very Merry Christmas, and if you get caught in the snow, may a fire let you gather with those you love and warm your hearts.

It’s quite a night for me to watch this twenty years since the Berlin Wall came down. I remember exactly where I was watching a younger CNN minute-by-minute, glued, because the year before I had just been there. I visited East Berlin where the group I was with were searched, when we were escorted to the places we were only meant to see. Bullet holes still embedded in old buildings were not just the remnants of the the war, but of a regime too tired to rebuild its environment or nurture its people. For me, Berlin is also the place of Bertolt Brecht, who I studied in university:

Brecht’s Marxist political convictions led him to propose an alternative direction for the theatre that would fuse the two functions of instruction and entertainment. In this way the theatre could project a picture of the world by artistic means and offer models of life that could help the spectators to understand their social environment and to master it both rationally and emotionally. The main concept of Brecht’s program was that of Verfremdungseffekt (”alienation”). In order to induce a critical frame of mind in the spectator, Brecht considered it necessary to dispense with the empathetic involvement with the stage that the illusionary theatre sought to induce. Generally, this has been understood as a deadening coldness in the productions, but such an interpretation proceeds from a general ignorance of Brecht’s own writings on the subject. Rather, he insisted, as Appia, Craig, and the Symbolists did before him, that the audience must be reminded that it is watching a play. (Stanford University website).

And it was rather like that, my visit to East Berlin — a carefully staged tour, a kind of theatre of pretense. Yet what remained hidden remained so visible in its absence.

I’ve not yet been back since the wall has come a-tumbling down, but I’m in awe of the art installation of dominoes to commemorate this important point in our history. May all walls that separate our ideals come tumbling down with this both historic and symbolic event.

Heather Stone collects leaves earlier this week at a home where she and some volunteers raked leaves to help Stone raise money to have dental work done. Stone has raised $41 so far toward a $12,000 visit.

When I read this story I thought of Adam. How a month ago we spent another day in the hospital pulling and repairing his teeth, for indeed he, like many autistic folk, need to be sedated during this stressful experience. I am there helping hospital staff deal with Adam and in turn Adam is managing better and better every year as he matures brilliantly. I am becoming an old hat with hospital staff and they in turn seem to appreciate the calmness and information about Adam I can share. That came with time and experience.

Living in Canada, we do not pay for such visits if we have dental insurance. We do not pay for the hospital visits at all, as we are covered in Ontario under OHIP. We parents have to advocate and teach others how to help our autistic children through stressful periods like this. I hope that Heather will be able to raise the amount she needs.

I’m sure I’m not the only one on a weekend checking in with so many old friends on Facebook. And I’ve made new ones too through my work in autism and writing. And so I feel a bit of like a divorced cliche — I’m checking in with my past to re-discover who I am. Please don’t blame me — it’s kind of like my marathon running these days — no matter what we do when we get divorced, pretty much everything we do becomes a cliche. Heck, we just can’t help ourselves! I just prefer to go at it with a bit of humour, but also a positive outlook. There is a reason why we have to run marathons and cross new finish lines.

Don’t get me wrong, all this talk on grieving and looking back, you’d think I was still sad or something.  I’m not other than what’s beyond the usual healing process. I’m simply moving on, very philosophical and looking at where I’ve been and thinking of where I’m going, now, with my little guy.  These posts since I’ve archived the older Joy of Autism blog (see side margin) are much about growth and moving on. It’s why I’ll be starting a second blog in this site soon — so I can keep the focus on autism for those of you who just want to read about that, and then another blog which is just more of what I love to do, which is to write about pretty much everything.

Facebook has been a great tool for advancing The Autism Acceptance Project (I’m also working on changing this site), and keeping in touch. I’ve actually had a real-life, face-to-face conversation with some of my old friends who have reconnected with me through Facebook. Imagine that? Coming out from behind the screen!

As long as the tool enables communication but also connection beyond the screen, I like it, but I admit to “checking in” with people on Facebook and Twitter just to feel connected.  My blackberry just went down today, and I can imagine how many messages I am missing!! I’m not connected!  A girlfriend actually CALLED me yesterday (remember that old fashioned telephone thing?) instead of emailing me, ON PURPOSE. Some of us are recognizing that it’s pretty important to hear that other voice on the end of the line.  But for every complaint, there is a blessing. Mine is reconnecting with old friends where the phonebook became out-of-date and Canada411 couldn’t find them for their changed names.

One of my high school girlfriends sent me these today ON FACEBOOK…more photos of the Estee-gone-by… as Hodel from Fiddler on The Roof (might that have been a prediction of Catholic girl turning into stubborn Jewish girl?) and Ethel Tofflemeyer in The Music Man. These were classic high school days where I spent nearly all my days rehearsing and performing. It was my real passion back in the day and where the enduring friendships were made.  And I look at that really young girl and realize that she was whole back then and she didn’t know it. She knew what she wanted and she went for it, even though she thought she wanted more. Before boyfriends and husbands, she did what she really wanted to do.

And today, it is the girl I admire the most and the fondest of all my memories, with the exception of Adam’s birth.  The girl who makes me remember what’s really important for her.  When I look at Adam, and even many adults, I also remember just how precious a young heart is. It also reminds me to encourage Adam to follow his own heart. There is a reason, I suppose, for having memories.

As Hodel in Fiddler on the Roof -- the train station scene where a stubborn daughter leaves her loving father to do what she has to do. She has to break with tradition!

Lisa, my friend who sent me this ol' pics front and centre. I'm on left in The Music Man.

Michel, an old band-mate front and centre. I am in background on right.

This is me in 1981. I’m singing at St. Michael’s Choir School Stage with our band “Maurader.” Those were the days… every weekend jamming in someone’s basement. I played keyboard and as you can well see, sang. I think these were some ditty’s from Pat Benetar….”You’re a heartbreaker….”  Now this was no motley crew. I sang and went to school (St. Mikes was our “brother school” as I went to HNM — an all girls school) with Michael Schade, now a world-renowned tenor, and Mitch himself is now a composer, among some other of my friends who stayed in music and went on to do other marvelous things. The folks from St. Mikes and HNM are a highly-achieved bunch. (C’mon friends, speak up).

Driving up North with my son Adam, the singing hasn’t stopped. Both Adam and I sing out loud to the radio tunes. The rock and roll girl still lives on some 25 years later deep inside the responsible, devoted autism mom. I dance and sing with Adam every day and he loves it. He loves mama’s spirit and mama love’s Adam’s.

Adam learns piano. He loves to sing. He loves to dance. We can never downplay the innate gifts we have to give to our children. Thanks to my old friend, Michel, who found these photos, and some of my high school friends (thanks to Facebook), I am aided in that they help to resurrect the great memories and the strong bonds we had. They awaken a side of me that I had nearly forgotten. Going through divorce makes one want to go back to one’s roots. And mine, thankfully, are strong. The memories bring me back to myself. I am painting again — Adam watches every stroke of my brush with great intrigue and attention — he particularly likes it when I paint his portrait. I bring out my guitar to see if I can remember how to play. While writing has turned into my first passion, the other artistic pursuits help move things along when I am stuck. And if it’s passion we’re talking about, I’m happy to say that one of my favourite bands, RUSH, is also going through a revival — eyeglasses, arthritis (I am just assuming) and all. (I am wearing my glasses I cannot live without recently as I write this). It’s all rather fun to rediscover in order to grow.

(This photo was the band that started it all…Xephyr. My first boyfriend on the far right — that is if you don’t count the 1st beau in Kindergarten).

So if ever you think you’ve lost yourself in times of great change, I think it’s important to go back to the days when we felt most fully ourselves. I don’t care if someone thinks I’m a goof  for doing something because of my age, for being a little silly and taking chances will be the one thing that keeps me vital. When we are young, there are no real obligations to quell some of these risks we take to discover who we are and what we love. Growing older and more experienced in life has certainly made me wiser, but when I look back at myself I get the chance to remember an aspect that still lives strong within me. It reminds me that it’s not over — the exploration not yet complete.

While I still sing in the car, I often think of returning to voice training now that my life has cracked open again — and why should I not? I’ve sung in choirs (once with Toronto Mendelsohn), and in many other venues.  I also consider how I’ve turned my creative self towards autism and Adam and how he challenges the artistic growth within me as I also hope to nurture it in him. So, forgive me for being a little self-indulgent as I turn giddy down memory lane. Remembering who I was makes me excited of who I may still become.

Rock on.

This is Ryan Barrett. I do not know him. But he could be my son, Adam. He is beautiful. I’m sure he brought his family so much pride and joy. When I read the story that he was found dead I responded with unusual intensity. I feel as if I am looking at my own son — those vibrant eyes. I know that Adam brings so much life to me in ways I could have never imagined.

I am saddened by this story and for Ryan’s family. I do not think I could carry on without my Adam. So for Ryan’s family, I offer my heartfelt condolences on this horrible loss. See story: http://www.wpix.com/news/wpix-autistic-teen-found-dead-campsite,0,7027775.story.

Adam is learning to cycle. It is this cycling in the outdoors that keeps us alive in a time of change and confusion. It is a forward motion, it is a challenge to overcome negative thinking, the past, the things we can’t change. My cycling has become a major part of my life this month, and it must be contagious because Adam keeps asking for his bicycle. I think this is something that is going to be something Adam and I will share.

Now that may seem unremarkable for many. Yet my son, who had such difficulty coordinating his body when he was younger, who could not propel forward with his legs, let alone steer at the same time, is now able to coordinate all of those remarkable steps we take so much for granted. I can see us riding into our future together — mom and this little boy who will soon become a man before I know it. I know he will take some paths I will never take. I know one day I will have to let him move beyond me, even though I will not be far behind. But for now, I am here to help him learn and soon we will ride side by side.

Adam is still on his training wheels and I am training on hills. Yesterday, I accomplished a 35 kilometer ride on a heavy bike (I have to get a road bike). I worked twice as hard and I dug deep.

As I did, I noticed my thoughts. When I think about what’s been “done to” me, I become a victim. It’s so incredibly debilitating. But when I refuse to be a victim, I can ride like the wind. Climbing up hills on a bike not suited to them, I had to push extremely hard and it would have been easier to give up. As I rose to the crest of the hill, all my negative thoughts washed away. Divorce or diagnosis — no matter what “D” you are facing (I like to call them the “D’s” — divorce, disability, diagnosis, disease, death, depression…), we cannot succumb to victimhood. We have to instead “dig down deep,” and face the demons which only we create in our minds. Demons are negative thoughts. They are always there, wanting to take over and render us zombies.

Divorce is so much like getting a diagnosis of autism with your child.  Your world is shaken to the core; all your beliefs our challenged; you struggle with your own identity and future in the midst of an uncertain one. I can’t think of any blessing greater, actually, than being challenged to the core like this. No, it’s not fun, but I have to make it so now after ten months of grieving. It’s much easier to glide through life and it is also a blessing to have a strong relationship. But my thinking of hard times as a blessing is the way I can turn things around, for what becomes “real” is manifested by our thoughts. These are the choices that can turn our lives into something vibrant, or something that dies before its time.

So today, I will run and tomorrow I will cycle again. This, I hope I’ve conveyed, is about more than aesthetics. As a mother to Adam, I think about our future, my vibrancy, for the sake of not only myself, but for him and for others around me. I’ve lived the past seven years climbing steep hills of various kinds. I’ve glided down some great hills too, as my reward. I think that for all parents of extraordinary children, we can tend to get wrapped up in the politics, the struggle for acquiring access and services, or for some parents, the (in my opinion) negative struggle of trying to change the autistic child to become “normal.” Sometimes, we need to focus on our own thoughts and challenge our own thinking in order to serve better.

They say one can always become fitter. And so it goes also with the mind.

I thought many of you would be interested in this upcoming conference in Europe:  The Perfect Body: Between Normativity and Consumerism. Here are the details and click here for the website: http://www.esf.org/index.php?id=5256

ESF-LiU Conference
THE PERFECT BODY: BETWEEN NORMATIVITY AND CONSUMERISM

Chaired by:

Dr. Katrin Grueber
IMEW (Institut Mensch, Ethik und Wissenschaft)
Berlin
Germany

Dr. Ursula Naue
Life Science Governance Research Platform
University of Vienna
Faculty of Social Sciences
Department of Political Science
Vienna
Austria

9-13 October 2009

The conference will be held at Scandic Linköping Väst, Sweden – 7km  from Linköping airport and 4km from the train station. Most notably,  the Swedish chain Scandic Hotel´s commitment to sustainability won the  Green Meetings Award in 2008. It is located in Linköping which is the  capital of Östergötland county, situated in the center of a vast open  farmland. It is Sweden’s fifth largest city with more than 136,000  inhabitants and has a long history as a city of learning.

Preliminary Programme

Enhancement as the improvement of desired characteristics (W. French  Anderson) means to focus on abilities, capacities and quality of life.  These categories can be viewed and defined from different value-driven  perspectives which are based upon certain viewpoints on what  constitutes “normality.” Furthermore they are framed by the concept of  autonomy. The general approach towards the issue of enhancement can be  understood in the context of consumerism – the “production” of  enhanced persons as an act of individual freedom and choice. But  another approach, which will be the main focus of the conference, is  based upon the fact that perspectives of disabled persons on  enhancement have been neglected so far. This is important as  enhancement technologies can have different societal and political  implications for disabled and non-disabled persons. The discussion  about enhancement focuses on therapy of something in need of  treatment. But with regard to disability, this debate about  enhancement in contrast to therapy and treatment has to be re-thought  and re-contextualised.

Hence, the conference takes as its starting point the view that it is  socio-politically as well as ethically necessary and important to look  at enhancement technologies from a “disability-perspective.” In the  context of historic developments and the intersection of medicine and  economy, enhancement technologies will be discussed from several  different scientific perspectives. The conference is organised as an  interdisciplinary dialogue and aims to provide an open forum for  discussion and networking. This approach towards enhancement  technologies is necessary, as the field of enhancement is an  increasingly important area of intervention into life and the body.  The conference will be the first international meeting to bring  together Disability Studies, Science, Technology and Society Studies  and Ethics.

The following are some of the questions that will be discussed:

* To what extent and in what way does consumerism influence the  current debate about enhancement technologies?
* Which problems arise from this understanding of enhancement  technologies for disabled and non-disabled persons and consumers of  these technologies?
* What are the consequences of enhancement technologies for  disabled persons?
* Is the “upgrade” an upgrade from old established norms or is a  “new normal body” created?
* Who is excluded by both starting points of enhancing the human  being?
* Do enhancement technologies carry a risk of excluding certain  groups within society, such as disabled persons?
* How can consumerism be embedded in an ethical framework?
* What role does normativity play?
* What new possible forms of exclusion and inequality on several  levels might occur as a result of using enhancement technologies?  Questions such as these make it quite clear that the conference is a  necessary and important way of approaching enhancement technologies  that already have implications for both human beings and for society.

I’m in a Starbucks because my Internet is down at home. As I check in on my email, I listen to three newbie autism moms refer to their books and talk about anxiety and autism, schools and trying to make sense of it all. They are abuzz on caffeine and worry, their voices popping in and out of each other to get a word in edgewise on a new book they are reading.

They are talking about methods, what’s better, what’s not. For some of us older autism parents, this is old territory. I am listening to the mother I once was and ponder the one I am becoming as Adam grows, as I go through separation and divorce. The very fabric of our lives are changing in profound ways — in ways I am right now, too close to objectively comment on. Yet listening to new moms allows me to to consider how time changes us.

There would be nothing I could say or do to change the learning process they must go through. They are engaged and intent. They are Jenny McCarthy’s “warrior moms.” There is likely nothing that will stop them from trying to do what they can for their children. For some, it will be the anything and everything approach. It may be reading every book they can get their hands on. It may later or sooner be meeting autistic people, reading research, attending conferences….I can make a long list of to do’s that was a part of my journey. I have kept every list, every day diary, every journal I have, and every communication book on Adam since day one.

As soon as Adam was diagnosed, I began reading. He was so ill, I remember. We had our suspicions, Henry and I, and I booked several diagnostic appointments just prior to our Xmas holidays in 2003. Adam was 18 months old. We had traveled to Nassau and Florida and Max and Adam became very ill with a horrible flu. I also became very ill. I nursed and tried to help Adam as I also lay for days in my in-law’s more comfortable bedroom in Florida. I don’t think we got up for nearly a week. Adam ended up in emergency on intravenous. It was a nerve-wracking time. Still, this period began my intensive reading about autism. I started by finding books at our local bookstore and it went from there. I was hyper-vigilant and anxious. Life as we new it (or expected it) had suddenly changed, although Adam had not changed at all.

I’ll agree that early autism moms can become “warrior moms,” protective of our children and determined to get them “help.” I’ve learned to calm down. I’ve learned to respect Adam’s way of learning. I’ve learned that what I did and read and all the hard work was something that I would never and could never change. Yes, I’m on a much different path than Jenny and I’m one of her critics. Yet when she wrote “warrior mom,” there was something universal in that that I know every mom can relate to.

The more I’ve learned to accept life as it is, the more easily I can swim in it. When I hear a report on CNN about autism and amygdalas and brain size, the more I know this will be tempered by further science. Gary Taubes, as I quoted in my essay The Mismeasure of Autism noted that when it comes to science, it is the first claim that is likely to be wrong. While CNN is reporting a “finding” based on a theory, it is still not exclusive fact without further testing under different perspectives.

I have received a few queries on The Autism Acceptance Project’s website. It seems to be down, but we are working on resolving the problem and it should be up again soon.

We will be working on the website in other aspects as well.

Stay tuned!

I’ve been reading the thousands of pages of Adam’s journals I’ve written and kept track of over the past seven years. It’s a lot of tracking. I’ve tracked everything from the structure of our days, the logs of his work and progress, his first “steps” in every aspect of his development, those early ABA charts, other progress reports, my to-do lists….I still survived on severe sleep deprivation (Adam never slept through the night), life obligations, taking care of four other step children (I always felt guilty at having to ask them to quiet down when Adam came around not knowing that Adam was autistic and extremely noise sensitive at the time), autism activism and advocacy, three of my own surgeries and three of Adam’s (ear and dental), and of course, my own struggle with accepting the various aspects of the journey. I have so much paper that I am quite surprised and fascinated that I look back on those old days as no big deal. Yet, one can say that in retrospect. I could tell parents all about acceptance and the journey, but each of us has to go through the years and experience ourselves. When I write like this, I have no idea if it fully sinks in to a “new” parent. There is reading, absorbing and then there is knowing. I can see it through my notes, all the queries, all the research I did, all the intensive time I spent observing and playing with Adam. I see who I was and who both Adam and I have become.

Other than pejorative referencing of autism as illness, and of course, dangerous therapies that risk a child’s health, well-being and life, I can discuss autism with so many parents with different attitudes, which is the gift of time. I meet parents who have taken a different route, who think differently than I do, and in most cases, it’s pretty much okay (again, unless they want to describe my son as of lesser value and do not accept him, then get out of the way).  

We are all on the same route taking different paths. Many of us see things differently. There is still work that needs to be done; questions on the nature of what it means to be human and a full acceptance of our children by and in every facet of society.  I do not think that our kids need to change themselves in unnatural ways (an autistic person will always be autistic) in order to fit in, for being a part of this world is a constant compromise, but one should never compromise one’s true nature. As a woman going through a divorce who has made enormous compromises, this resounds so strongly within me these days. Being a woman in this world somehow draws me closer to others who need that strong sense of acceptance and belonging. I know I write as a woman in a particular circumstance, but there are dads out there too who are going through the same journey. I do not want this post to sound this is for women-only. We can only belong when we first accept ourselves.

I think I’ve survived it all so far pretty well, maybe even more than “pretty-well.” Yes, I have feelings, and no, it’s really not easy. One doesn’t have to pretend to be strong in order to be strong. Strength comes from not being afraid to talk the truth — in not being ashamed of being sad, weak, in need of help, in finding the humour in things…

Divorce, cancer, autism, stigma, and I’m still standing. Adam is still happy through it all because mom doesn’t believe that anything less than fortitude, truth, and a positive attitude is warranted in this world. Mom believes that Adam is good enough as he is, and now, as a single person, that she is more than good enough as she is. She expects Adam to clean up after himself, go to school, continue learning and contributing to the world. I expect no less of myself — of fulfilling my own purpose. Everyone, no matter what challenge, can press on. We all have a purpose in life that needs to be fulfilled. It is our hope, our inspiration, and our difficult, yet still inspiring, mountain to climb.

I don’t mean to rain on your Easter Parade. Or for that matter, your Matza Brei. It is another religious holiday again and I wish everyone peace and happiness as you celebrate with your friends or families. Also, I would like to think of the vast majority of people who have no place to go today, who have no friends or families, or at least have not been invited by them to eat at their tables.

Religion and holidays tend to make me question everything that has to do with religion. I have seen and experienced unjust things on the “holiest” days of the year, for man cannot, by his very nature, live up to these expectations created not by God, but by man — the leaders of religions. I listen to people who won’t eat pork, but will eat a cheeseburger or shellfish, when their religion bans it. I am very interested to listen to the concept of “observance,” and “tradition,” but am equally interested at how individuals modify practice in order to suit their own needs. Religion has come to be something we consume and like all consumption, it eventually leaves us empty.

So what is it that we hang on to under the religious umbrella?

I can think of one thing: family and friends. We all want to be connected to each other. Religious holidays can sometimes force us to do it. But when the holiday is over, then what? I am concerned that what we lack is not religion, but connection and spirituality. That last word is so overused. It is sold on video tapes and spirituality is often tied in with some aspect of “becoming successful,” in a monetary sense — get in touch with yourself and the money will follow, and usually you can find some book that links in getting in touch with yourself and success in business in seven easy steps. But spirituality it isn’t concerned at all with money, achievement, success. It is concerned with love. Sometimes the money will follow and sometimes it will not. But even if it doesn’t, one can feel so filled and complete by doing the things we love. Love is about connection, a deep connection to everything around us so that we realize we are never alone.

“The Hindu-Moslem-Christian-Jewish-Buddhist believe about ultimate reality is beautifully summed up in the first epistle of Saint John: ‘Let us love one another, for love is God and everyone that loveth of born of God and knoweth God.’” (From Bell Hooks, All About Love: New Visions, p. 75).

Religion is the most segregating and alienating aspects of human life. And that is my humble opinion. It does not urge people to act out of love, but instead act out of pity. It says you will have a place in God’s kingdom if you do “good acts,” even if you just throw money at someone or some cause. Yet, it is the most selfish way to act. Instead, if we view God as a power within us, the power of love that transcends us, we are living in the here and now, fully, with dignity, love, and respect for all life. It means that when we love others as ourselves, we try to engage with them.

I hope we can all decide not to hide behind the matzah and the Cross, but come out and treat others with love and kindness. Seems to me the world and all its creatures are so in need of this action, above all else, for John says, “‘anyone who does not know love is still in death…’ All awakening to love is spiritual awakening.” I know this to be true as far as Adam has awoken something very special within me.

If someone is suffering in not being accepted by a person or a religion, or is experiencing extrication of any sort, let us all try to listen and share. Act out of love, not to save ourselves a place in heaven. For ultimately, we ARE each other’s pain, suffering and struggles. We are all one.

I went to Boston. My step-son studies film in Boston. I love Boston. Here, I do not talk about autism. Autism is, perhaps, indirect — I am a mom of an autistic person looking at things a little differently. Maybe the way Adam looks at things has inspired me to look a little more closely. Here are my impressions of Boston:

Under A Boston Sky:

Boston Reflections:

Boston Form and Repetition:

Read the rest of this entry »

I’ve been to London
I’ve been to France
(this is not about your underpants)
Yet there’s nothing better than rigorous dance
With arms flailing
Joy assailing
Down the river of happenstance

The dance ends
Begins again
Like sun and storms
Asunder

I’ve traveled near
I’ve traveled far
In clacking trains
And humming planes
A hope of something Other.

But home I always do return
to warmth like beacon fire;
cracking, hissing, fluttering,
This we all desire.

We live with misery and content,
yet the latter we do yearn,
this ordinary life cannot be bent,
for all it does is burn.

I took this photo a couple of days ago. The park where Adam frequented in summers, it is desolate and gray now with the promise of spring as the snow melts away. I went out on Sunday and began taking photos of that which I will miss when we move from our home. I admit, with so much loss, I can really be queen-of-the-mopers. I can walk around and feel the woe is me deep down in my bones. No, I don’t pull out the booze and talk about what’s wrong with the world. I don’t go that far. It doesn’t mean I’m a sad or depressed person. It just is what it is.

I know I’m not the only one. To deny your moping is just that: denial. The difference between a down-right serious depression and this, is that I think I can measure the space in between loss and happiness. In other words, by writing, painting, taking photographs, whatever, it creates an awareness so I do not become lost in it. I can feel both within the span of a day (no, that doesn’t mean I’m manic). I don’t feel that running away from my feelings of alone-ness will heal me or make things better. Instead, I take photos of it. When I need to dive in, I just do it.

A few months ago, I read that most women suffer from “bag lady syndrome.” It was in the Globe and Mail last fall as well and I remember the story well. Searching on the Internet, there are a deluge of stories on it. No matter how affluent and successful a woman is, she still worries she’s going to end up in the streets. So deep is this affliction, I decided to wallow right in because facing fears is the only way to to minimize them.

“Bag-lady syndrome plagues, puzzles and, in more extreme cases, paralyzes women who want to get a better grip on their financial lives, according to Olivia Mellan, the author of The Advisor’s Guide to Money Psychology and a Washington, D.C., therapist who specializes in money psychology. Lily Tomlin, Gloria Steinem, Shirley MacLaine and Katie Couric all admit to having a bag lady in their anxiety closet.” (MSN Business).

As I did this day of photography, I suddenly came across this bright yellow shopping cart in our neighbourhood park. What struck me is how bright yellow it was (I’ve got a bit of tweaking to do on this photo to bring that out). It’s owner, I imagine, must be some wonderful imaginative bag lady leaving it for a while to find food or objects, for it was not there at the beginning of my walk, but only here at the end of it. The cart is empty, sitting there, an entity waiting to be filled up.

Is that what we are? Just a bunch of numb people waiting to be filled up? As a woman now “on my own,” this is exactly what confronts me. It’s not that I haven’t created ventures and done and accomplished many things. It’s just that when you lose your partner in life, desolate feelings arise within. I am not trying to diminish the value of partnership here by suggesting that it is bad to have a partner in whom you trust to take over aspects of your relationship. Connection should fill us up. It is natural for partners to assume different roles. It is a fact that when your partner leaves or dies, life can be scary and bag lady fears can come rolling in. We have this fine line between being comfortable and confident in ourselves and appreciating even the fleeting reality of connection between people.

Lately, I have been replacing “Bag Lady Syndrome” with The Little Match Girl Syndrome. The story was written by Hans Christian Anderson. Do you remember her? The little girl sent out to sell matches? I bet many people born after 1970 don’t know her at all. With no shoes in the stark cold, she dared to light some of the matches she depended on to make income to keep her warm. In her desolate state, the world buzzing around but ignoring her, she crouches in a corner and begins to imagine a feast, the warmth of her grandmother, a lovely Christmas tree. Her imaginings bring her enormous happiness.

“She hastily struck a whole bunch of matches, because she did so long to keep her grandmother with her. The light of matches made it as bright as day. Grandmother had never looked so beautiful. She lifted the little girl up in her arms, and they soared in a halo of light and joy, far above the earth…”

Of course, by morning, the little match girl is found in that corner, frozen-to-death, passers by only making mere mention of it “she must have frozen-to-death,” they utter. On the last page, which is an illustration without words, the sky shines now two stars, which we imagine to be the little girl reunited with her grandmother.

It got me to thinking more about happiness. In this case, the little girl’s imaginings were necessary for survival. If I were starving, I might pretend to have a big feast if it would make me feel better. If you have access to a computer, I doubt you are one of those people freezing in the streets. You are probably dabbling through your day, in and out of your busy tasks, watching the stock market and drinking a cup of coffee perhaps intrigued by this notion of happiness. Who wouldn’t be?

So I lead to a question here: do you read your children the story of The Little Match Girl? Do you read it as some sort of pity story about poverty and how we have to help the poor? Or do you avoid the story because it contains too much pain? Or do you read it as a story of not only social responsibility but of happiness? What are we really teaching our children about happiness, pain and suffering?

It stuck me when Adam’s assistant picked up the book and read it to Adam (she did not know the story). As she was reading, she felt she had to censor it for Adam’s sake because it was “too sad.” This, a children’s tale! A Hans Christian Anderson tale! Never mind the Brother’s Grimm. I mean, these tales do not have proverbial happy endings. Happiness is not just an ending, its a means and an ending.

Nietzsche said “the measure of a society is how well it transforms pain and suffering into something worthwhile. Not how a society avoids pain and suffering — for Nietzsche, a deeply troubled man…knew that was impossible — but it transforms it.” (The Geography of Bliss)

Aristotle believed that how we pursue happiness matters more than the goal itself. “They are in fact, one and the same, means and ends. A virtuous life necessarily leads to a happy life.” (Ibid).

Perhaps there is something missing when we pursue happiness in things and avoid the pain, the struggle and the “failures” of life. It is missing when we suggest that a goal in autism, even is to make people “normal” or “indistinguishable” because, let’s face it, it will make many parents (not necessarily the autistic people in question) “happier.” If we think it will be easier, we believe it will make us happier.

Everything is tied in to our view of happiness and how we shape and live our lives and how we think we and other people should be. Instead of enjoying the journey, embracing the struggle as if it were a natural part of our existence and an intrinsic part of our overall happiness, we want to avoid it at all costs in favour of something over there — over the rainbow — something better (even if we don’t really know what that is).

Right now, my happiness is in writing, reading, taking photographs and thinking about life itself. It is in my early morning cups of coffee and the luxury (and necessity) of reflection. Happiness right now, is sublime. I suppose with all that life has brought me thus far, the good and the painful, I am not a person to run away. I don’t believe we find happiness in other people, except that connections with other people do bring me much joy. I believe happiness and imagination are so deeply entwined. We make our own happiness.

While these objects stand alone in a desolate landscape (about to turn into a spring), they are in and of themselves entirely beautiful. It brings me happiness to travel to the depths of my feelings about what’s happened in my life lately.

As the woman walks away down the well-known path to her, we know she will yet go someplace else.