This is the New Story of My Life

Last January, I made a new Word document called, “This is the new story of my life.” For inspiration, I opened a journal from when I lived and worked at L’Arche, a community for adults with intellectual disabilities. During my two years at L’Arche, every morning I would try and scribble down three “stream-of-consciousness” pages at 6 a.m. I would write as I drank coffee and waited for Isabelle’s 150 mL of Peptamen to descend from the bag hanging from a pole beside her bed through the squiggly tube that led to her stomach. Isabelle’s school bus arrived and left at 7:15 a.m. Cynthia the bus driver would not wait. At 6:27, once all the Peptamen had descended, I would unhook the feeding tube and it would be time to change Isabelle out of her pyjamas, wash her armpits and change her into her clothes. Then I would lift her into her wheelchair so that I could wash her face, and brush her teeth and hair. So many days, Isabelle would remain half asleep the whole time, smiling and laughing here and there. Despite this, rarely have I felt as connected to the rest of the world than during this hour of preparation that ended with me rolling Isabelle down the ramp to meet the school bus.

On April 27, 2007, I started a brand new journal. I had about three months to go at L’Arche. At the end of each day, I would make a big X on my calendar. On the beginning of each day, I would do a countdown. 91 days left. Then I would try to figure out what date was 91 days ago and whether it felt like a long time had passed or not. Usually it felt like a very long time had passed. I was twenty-one years old, and I’d already lived at L’Arche for twenty months.

Frog and Toad Are Friends. This what it says on the cover of the journal that I began on April 27, 2007. Underneath the words there’s a picture of a fat toad dressed in pants and a jacket, reading to a longer leaner frog, who is also wearing clothes. The frog has a finger on his lips and he’s listening intently.

Frog and Toad Are Friends

Who remembers the Frog and Toad stories? My father read me all of them. All I can remember is the story called The List. Toad decided that he would make a list of all the things he had to do throughout the day. Wake up, brush teeth, wash face. He didn’t have any hair to brush. Then there was breakfast, the newspaper, and other typical obligations of toads who wear clothes. After breakfast, Frog came over and asked Toad if he wanted to go for a walk. Frog wanted to search for mushrooms or something like that. Toad said no, because it wasn’t on his list. He went about his Toad errands. Sweeping, gardening, going to the store. Then his list blew away and he had no idea what to do with himself.

That’s the trouble with lists.

Toad was the uglier one and also the smarter one. Neither of them was particularly smart, or good-looking.

On the first page of the journal, I write about a conversation I had with the assistant Paul, one of L’Arche’s many virgin saints. Paul lived at L’Arche over ten years. After that, he volunteered at our house every Thursday, to help with baths and make us supper. Paul was an exquisite cook. He used to slice the carrots in such perfect long thin lines. And he always marinated tofu for me to ensure that I didn’t starve to death.

On April 26, 2007, we talked about a new planet the NASA people had found. It was light years away. The planet can apparently sustain life. Paul thought that humans should be able to find a way to get there efficiently before the sun dies. But in the meantime, we can build bubble like structures to shelter us when we leave the earth. Kind of like the moon hotel in Charlie and the Great Glass Elevator. Charlie flew to the moon with Mr. Wonka and his parents and four grandparents. I think all of Charlie’s grandparents became obnoxious in outer space. They were nicer when all four of them shared a bed in a tiny shack. I never finished that book.

Charlie and the Great Glass Elevator

A few pages later, I wrote about a picnic on Mont-Royal. I remember getting ready in the morning. It wasn’t my turn to give Isabelle her Peptamen and get her dressed. But that would mean that I would have to make sandwiches which I wasn’t very good at. Talia, my boss switched with me. “Il faut aller où sont nos forces,” she said. We must go where our strengths are. For me, this meant not making sandwiches. Talia made better sandwiches than I did, and there was something so earnest and beautiful about her. She remains one of the great people of my life. A guru of sorts. L’Arche was full of earnest and loveable Catholics. Virgin Saints, and Nun Friends.

About halfway through the Frog and Toad journal, I learn about someone else’s spinal cord injury. One Saturday, Isabelle’s teacher Elizabeth went for a bike ride. Then she hit a bump and went flying over the handlebars. She landed on her back and now she can’t feel or move her legs. I have been terrified of spinal cord injuries ever since I knew they existed. I felt so traumatized that someone who had spent her whole life working with kids in wheelchairs would end up in a wheelchair herself. Surely, it was just a matter of time before my spine endured the same fate. For weeks, all I could think about was Elizabeth and her spine. And my spine.

During a weekend off, I went to have beers with Tom, one of the volunteers. We both drank four delightful Keith’s in his bachelor pad near Guy Concordia metro. I had such a huge crush on him, not knowing that he had a girlfriend. As I left his apartment ready to bike home, I made a nervous joke about paralysis. He said that I would probably live until I was ninety-three years old, and none of the horrible things that I’d imagined will have happened to me. I’ll be jogging with all of my legs. On my death bed, I will count and feel all of my limbs, and it will be an immense relief. I wonder where Tom is now.

There were a bunch of cards inside the journal, and a photo.

The photo is of Simon, my ex-boyfriend who jumped off a building. When I started, “This is the new story of my life,” Simon was still alive. I used to think of Simon every time I started a new creative project, and it was going terribly. I still do. In the picture, Simon is smiling, posing for the back of his book cover, or for his application to be in some movie. His teeth look very large and his eyes seem kind of manic.

Simon thought I was really fucked up and hopeless, but that I had some talent for writing.

I’m pretty sure the Boatman doesn’t think I’m fucked up and hopeless.  He thinks I’m an okay writer.

Maybe one day all this will be an excellent novel. For now, it stays between the covers of my Frog and Toad journal, and here. One of the cards in my journal has a baby gorilla on it. I’ve always had a thing for primates, and this card is from my mother. She wrote it for me when I was in the psych ward in Kingston, having overdone it on the Ex-lax.

Let’s transcribe the whole card. My mom can have the last word.

“Dear Erica

                 You are a very special and

                Beautiful person.

                                I love you as do many many people.

 Remember to love yourself for all the wonderful little things that are you.

When you were a baby I could never get over the way you would lie on the bed with your feet and hands waving and how you would giggle and gurgle and laugh from deep in your little belly. You would have us all giggling.

Don’t forget that your smile can be no one else. You don’t have to do anything else but be our Erica.

Love Mom.”

The End.

Mother, Sister, Me.

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Not Separate From All That Is

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A Broken Body is Not a Broken Spirit
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Happy

“2-9 it is today. Somebody’s birthday. I don’t know them.”

Jadwiga used to announce this every morning at breakfast as she stirred milk into her coffee in the mug with the cat on it.

“B-b-b bir-day, shanana nana. Cococococa.” Cococococa was Marc's name for me. Whether or not it was my birthday, Marc liked to chant B-b-b bir-day, shanana nana. Cococococa this all day long. On the toilet, while he was shaving, and while he was slicing his breakfast banana. Birthdays were a big deal at my L’Arche house where I lived with five adults with intellectual disabilities. Weeks ahead of time, Nathalie, our head of house, would make sure the L’Arche workshop was preparing a beautiful homemade card for you, along with a Happy Birthday banner. You got to invite your favourite people, request your favourite meal and pick the kind of cake you wanted. My favourite food is Indian, and from her years living with Muslim families in Madagascar, Nathalie knew how to make it from scratch. Homemade samosas, papads, chana masala. Eight, nine years later, I can still remember how delicious it was.

Before cake, it was L’Arche tradition to have a birthday prayer. If you weren’t into Christianity, then they wouldn’t read anything from the Bible. But at the time, I was trying to get a thing going on with Jesus and I didn’t mind. For my twentieth birthday, Nathalie picked a verse from the Beatitudes, in the Gospel of Matthew. The line went, “Blessed be the pure in heart, for they shall see God.”  Since my twentieth birthday, I have definitely drowned myself in cynicism, negativity and self-deprecation for days, weeks or months on end. During such periods, it is nice to remember that somebody once looked at me and decided I had a pure heart, and that I would see God.

After the bible verse which was short and sweet, Madeleine read a poem that Judith, one of our assistants had helped her write. Madeleine came to L’Arche when she was in her early fifties. Coming to L’Arche, she had all these big dreams. She wanted to learn to read and write, and maybe get a boyfriend and learn to take the bus by herself. Whenever we went to church, she would hold the hymn book open and concentrate so intently on the words, dying to be able to understand. It took her a long time to accept that not all her dreams would come true. Still, she wrote really wonderful poems.

Madeleine’s poem began with, “A twentieth birthday is a special day, and you are a very special person.” I will keep it forever. Another L’Arche tradition during birthday prayers was to pass a candle around the table. When it was your turn with the candle, you gave thanks for the things you loved about the person. Some people gave thanks to God, and some people just gave thanks. It all sounds so cheesy and yet, it ended up being pretty perfect.

Madeleine always gave a big speech that was similar to her poems. And thank you, Erica for taking us to the library. And thank you, Erica for that time we walked all the way from… Usually we had to tap her on the shoulder to get her to wrap it up.

Jimmy, a new L’Arche member liked to make speeches too. He was obsessed with Power Rangers, and with me as well. At every birthday, he made fun of me about the time I was having dinner at another L’Arche home and I stuck my hair in my mouth. “Remember, I asked you if you wanted ketchup? I have to tell your mother about that.”

“B-b-birday, cocococoCA, shanana-na-na,” Marc would say a few times. Then he would take my hand and whisper, “Cococococa,” one more time.

Isabelle loved Jesus and prayers. She was the same age as me. Born with cerebral palsy, Isabelle doesn’t move or talk that much, though she laughs and smiles a great deal and says yes and no with her eyes. At my birthday, Nathalie held the candle in front of her face and she broke into hysterics. Over and over again, her eyes looked up.

No matter whose birthday it was, Jadwiga said just about  the same thing. "Awe, what should I say? Same as Madeleine. Happy birthday. Keep up the good health. Keep up the good work in L'Arche."

 

These days, it seems like some of the cool people don’t like birthdays. People are too cool for such frivolous celebration. Oh well. Too bad for them. I’m still alive and I’m happy.

 

When it was a child’s birthday at Montessori school, we put a brass sun in the middle of the Circle time floor. Polishing brass is one of the Montessori activities. The children polished the sun with diluted all natural licorice -flavoured toothpaste.  Sometimes this made the sun shiny and other times the sun became encaked with greenish chunks. In any case, the child with the birthday took the painted globe and carried it around the sun.

“Isaac is one year old,” we’d say when he completed the circle.

“Isaac is two years old.” The child would walk around the circle as many times as the earth had rotated around the sun with him on it.

“Isaac is five years old." Then we would sing happy birthday in as many languages as we knew. English French, and Spanish.

More than once, I teared up as I watched a child walk around the sun. What a surprise.

In Halifax, I picked up on a tradition of doing the same number of sun salutations as the age you are turning. Some people also do this many backbends. I tried this tradition for a couple of years and it was fun. Here in Mysore, you can hardly expect the crowds to wait for you as you whip off your age in sun salutations and backbends. But although there is no official birthday tradition, Mysore is just one big birthday party anyways.  In most cases, I would advise you that not everyone is as happy as they appear on the Internet. And yet, here I am, and my face and the insides match.



Fake Rebellious Yoga Selfie I

The joy is real.



Fake Rebellious Yoga Selfie II
Some of the joy must be attributed to the Fanny Pack.
Also to the Spiritual Pants.
 

And to my dear friends
Got this from the Boatman this morning. It's our friend the moon.
The Boatman is going to be the moon for Halloween.





Wish you were here, Babe.
Otherwise I am the luckiest girl on Earth.

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Lizzie

One night while my friend Lizzie was sleeping, a bookshelf fell on top of her, and she died. The bookshelf hung on top of her bed. When it fell down, Lizzie couldn’t breathe and she couldn’t escape. 

A few months after Lizzie died, her sister came over to my last shitty apartment in Montreal.  She brought a book and a lamp and a photo.  The lamp was blue and was given to Lizzie by the people with intellectual disabilities that Lizzie once worked with in France.  Lizzie used to work for people with disabilities until arthritis attacked the joints in her spine and she got a disability too.  Sometimes I worry about this happening to me. Like the lamp, the book Lizzie’s sister brought is also blue.  I’d lent it to Lizzie for some English course she had to take. Volume I of the Norton Anthology of English Literature.  From Beowulf to King Lear to Gulliver’s Travels. It stopped before “A Vindication of Rights for Women.”  They started vindicating women’s rights in the next volume.  The book was pretty heavy.  I hope it wasn’t one of the books that fell on her.  I wouldn’t be able to bear it.

In the photo, you can see that Lizzie is wearing a light turquoise button-up shirt with a collar.  She has pink cheeks and brown eyes.  Her eyes are just a little bit bigger than eyes you might call bird-like.  Lizzie used to complain about her nose being too big.  I guess it is a little big in proportion to the rest of her face.  You can’t see it in the picture, but at the back of her head, I know that her hair is scuffed and falling out from the friction between her head and her wheelchair.  You can’t see her wheelchair either. Sometimes Lizzie could stand up by holding onto her wheelchair or her walker.  Or a table, or a bookshelf. 

Maybe Lizzie is happy in the picture – I think they took it on her fiftieth birthday party. But to me, she looks worried and kind of uncomfortable.  Sometimes that happens when people smile with their teeth and the photographer takes too long to take the picture.

The professor that Lizzie and I had during our second year at Concordia was adamant that we shouldn’t write about what we knew or else we’d be in trouble.  He made Lizzie cry once.  She’d written a story about a little girl who’d found her grandmother’s vibrator and her mother, the grandma’s daughter-in-law, felt awkward.  The story wasn’t terrible, but it read as though it had been written by someone who didn’t own a vibrator.  A little inhibited.  But Professor Fraser Richman attacked Lizzie who sat in her wheelchair at the back of the class full of twenty year olds, and Lizzie cried.

“Where do you want to go with your writing?  Is it just an outlet to express your feelings?”  asked Professor Fraser Richman. Lizzie’s eyes fluttered and she didn’t know what to say.  She was a pretty inhibited person.  In class, Professor Fraser Richman used to make us play games to help us to know our characters.  One of them was called “If you were a fruit, what would be?”  We’d go around the table and make up questions like “if you were a drink,” “if you were a car,” “if you were a kitchen appliance... what wouldya be?”  And everyone would have to answer for their character.  A martini, A coke, Earl Grey Tea.  A Volvo, a taxi, a Mercedes.  A toaster, a microwave oven, a hand blender.  The Magic Bullet.  Lizzie could never come up with anything.

“Gee,” she’d say, her eyes blinking rapidly, her cheeks and forehead blotching red. She’d push her glasses up her nose.  “A car?  Gee, I don’t know.  You’ll have to come back to me. Sorry.”  My knees hurt whenever I watched her.  Just say something, I thought, it doesn’t matter. I always sat in class with my legs coerced around the arms of my chair, frozen into an excruciating lotus position.  If you were a tree, a country, a dessert…  What would you be?   Lizzie never knew.

“Think too much and you’ll be in trouble,” Professor Fraser Richman warned us.  We were doomed before we even started.  When Professor Fraser Richman stacks up all his published novels, they stand taller than he does.  The summer after our class ended, I set out to read the complete works of Fraser Richman.  I got bored after the first chapter of – I don’t remember what the book was called.  The trouble with stacks of books is that they can topple over and kill you.  3-2-1, and you’re dead.  The suckers and the fuckers.  Professor Fraser Richman used to warn us about swearing in our stories.  We risked drawing too much attention to ourselves.  The writer is supposed to be silent, yet brilliant.  Like God.  He also said that writing about dreams (you know, the kind you have when you’re sleeping), though they may strike the right chord, was somewhat of a copout since real writers succeeded at weaving the subconscious into the narrative inexplicitly.  Well, shit fuck Jesus Christ, I think I’m in trouble.

I Cop Out

by E. J. Bodhisattva

A few nights ago, I had a dream that I was in a movie about Lizzie.  The woman cast as Lizzie was tall and thin with dark red nail polish and shiny, perfectly smooth straightened black hair that went down to the middle of her back.  Together we rode up the elevator to where the filming would take place.  When the doors opened on the sixth floor, Lizzie walked in.

“Lizzie,” I said.  “You’re here.”

“I think I fit the part better.”  She wasn’t wearing her glasses.  I told the shiny black haired actress that we wouldn’t be needing her anymore.  She got off the elevator on the ninth floor.  Lizzie and I rode to the top.  Lizzie wore a pink blazer.  Her face was less blotchy than usual and her small brown eyes which normally darted back and forth, remained still.
“You’re here,” I said again.

“Yes,” she replied, her voice unwavering and wise.  On the top floor, there was a beach of red sand like in Prince Edward Island.  A little girl was playing in the sand with a bright red vibrator.  I knew that it belonged to her grandmother.
“My grandma’s dead,” the little girl said, pointing to the ocean.  Upon the waves, an old sinewy silver-haired woman lay on a lime green surf board paddling with her arms.  “That’s her.  She’s dead.”

“Me too, I am dead,” Lizzie replied.  Further up the sand dunes, a man in a navy blue Speedo sold blueberries under a yellow tent.  In each corner of the tent there was a video camera.  Beside the tent stood an empty motorized wheelchair.

“I’m hungry,” said the little girl.

“I’m dead,” said Lizzie.

I took the vibrator from the little girl and led her by the hand to the blueberry stand. Lizzie followed us.  As the little girl and I examined the cartons of fruit, Lizzie sat down in the wheelchair.

“It will be sandy,” the little girl exclaimed.  I tasted a blueberry.  It tasted blue and juicy, but it was neither sweet nor sour.

“I hate water,” the little girl declared.  I bought a pint of blueberries and turned around to walk back to the ocean.  Lizzie was already ten metres ahead of us.  She drove the wheelchair over the sand and all the way into the water, until she disappeared underneath the surfing dead grandmother. 

“I hate the water,” the little girl repeated.  “I’m not going swimming.”  I slid through the sand without lifting my feet.  “I wanna go home,” the little girl whined.  She grabbed the vibrator from my hand, ran to the edge of the water and threw it out to sea.  It landed just beyond her surfing dead grandmother.  By the time the little girl came back, an elevator had risen from the sand. “I like elevators,” she said. We entered and descended.

The End.

This is the lamp.
The other day when the sun came up, I yanked it out of the wall and sparks flew.
The Boatman said that we can probably repair it, although we are typically quite terrible of dealing with that sort of thing.

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The Boatman came back from art camp where he helped the worms draw deeper lines into the clay sand.

Actually, they are miniature shrimp.

I like to say that at art camp, the Boatman got an infection from the worms. But the infection didn't come from the worms. It didn't come from the miniature shrimp either. The infection is going away. The Boatman will be fine. 

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Rumplestiltskin

Still Me 

Soul Fucking

 

Fan Mail

Several weeks ago, I was all set to write a post about my fool-proof plan to sync my menstrual cycle with the new moon. Then I got an email asking me to please moderate some comments on mobtreal.com, a comedy site that I used to occasionally write for. Logging in, I came across a comment from last March that I'd never noticed.

It was from Danny Woodburn, an actor I'd met while I was working as a lifeguard during my last days in Montreal. Danny played Kramer in Seinfeld, and was playing a dwarf in Mirror, Mirror, an adaptation of Snow White. Danny wasn't very happy about my writing. Here's what Danny wrote.

BODHISATTVA:(in Mahayana Buddhism) a person who is able to reach nirvana but delays doing so out of compassion in order to save suffering beings.

And yet your accounting is rife with objectification, mockery and catty derogations, to say nothing of its falseness. You know the word is objectionable yet you still say it–for effect? I remember you saying how you worked with the disabled. This thought has now me horrified, seeing who you are in this story.

Gross.  I forced myself to click on the post he was referring to. There was an image of the seven dwarves surrounding Snow White in Mirror Mirror, and a picture of Kino Macgregor balanced on her hands in a backbends, with her feet hovering over her head. there's a quote from my piece, "soul fucking," which describes me doing a drunken version of the pose at a bar, with the assistance of Ronald Clark, one of the other actors who also played a dwarf in Mirror, Mirror. The post linked to my three-part series called, "Small Regrets." I'd titled the post "The Objectionable-word-beginning-with-M Phase."

I called the Boatman in tears and read him the comment.

"I'm a horrible person, and shitty writer. I should just delete everything. I'm not even famous. This is not worth it. I suck."

The Boatman told me to calm down and read over the posts before rashly deleting my entire online identity. He read them over too.



Snow White and the other stars in "Mirror, Mirror"

 

Snow White and the other stars in "Mirror, Mirror"

In Part One, "Snow White," I describe meeting Danny Woodburn at the tiny hotel swimming pool I worked at the Westin in Old Montreal. We make small talk and I'm highly excited that a celebrity who also happens to be part of a rare population. When the next customer comes into the pool, I can't wait to announce that the little guy from Seinfeld was just here. I untactfully use the m-word. This next customer turns out to be Danny Woodburn's wife.

Part Two is called "Other Dwarves." In it, I ramble away about the other actors playing the dwarves in Snow White. Somehow I can't stop myself from wondering about what a little person's penis looks like and comparing myself to the famous Erica Schmidt who is married to Peter Dinklage. I consider all the penises I have seen in my life and flesh out a very unnecessary scene from elementary school, which I am ashamed to have included.  In scenes from the swimming pool, I sit on the deck, my legs contorted in bizarre positions beneath very short shorts. I chat incessantly with Ronald, another actor from Snow White. He used to be a personal trainer. Now he rescues pitbulls on TV. He asks me for a private yoga class. 

Part Three: Soul Fucking. It was about my last crazy night in montreal and it turned out to be the only decent writing out of the whole thing. The minister who baptized me read the story and gave me a thumbs up on Facebook. He said it kept his attention the whole time.  Maybe I did made too big a deal out of the vague possibility of sleeping with Ronald and the fact that he was a little person.  At the time, it felt like an unusual and intriguing opportunity. But I went a bit overboard and shouldn't have used the m-word.  

I decided to delete Snow White and other dwarves, and the summarizing post the m-phase. As for Soul Fucking, I took out the m-word and tried to change the story so that it became more about the last night I maybe could have fucked someone other than the Boatman but missed out. Also, I tried to take out anything that would objectify Ronald more than I would objectify any other potential source of sexual gratification. Note that the first paragraph of “Soul Fucking” describes the Boatman’s bloody penis, from the first time we ever had sex. Maybe I’m unoriginal and immature, but I love writing about all kinds of sex and all kinds of body parts.

The private yoga class I gave Ronald before going to the bar probably objectified his body, however, I feel like I would have described anybody else's body in this way.  It's not often you get to be in a celebrity's hotel room and watch the celebrity do yoga.  Even so, I've deleted all of my posts on mobtreal.com in a fit of self-consciousness.

I sent a thorough apology to Danny Woodburn which I can understand if he didn't read or open.  For once, I felt relieved that I never became very famous, for the Small Regrets posts or any others.

The whole ordeal left me traumatized. Although it has never been my main objective to be tactful, I hate to be written off like that, especially after years of sincere and dedicated work with people with disabilities.  I'd like to think that if I'd taken a bit more time to consider my material, I would have made better choices. That said, it's interesting that nobody else besides Danny called me on these posts.

A couple of months ago, I wrote a review of Dan Savage's show at the Spatz theatre. To try and make things interesting, I included a couple of anecdotes about a blind woman who attended the show with her German shepherd. We had just lost the big black dog and so I made the awkward comment that I wish I could have my dog with me all the time...  It was sort of like the time I first met Danny Woodburn. Me saying something awkward. I meant to make fun of myself. The woman and her dog sat in the balcony and the woman yelled a bunch of things at Dan Savage which was mildly entertaining. I guess this is making fun of her. The moderator of montreal.com took out everything about the blind lady, but called my m-phase series amazing.

So why are little people okay and blind people aren't?  Is it because if you are already a regular size you'll never be a little person, but any one of us could become blind over the course of our lifetimes?

I recently saw someone post on Facebook that the circus in town was hiring. They were looking for -insert word I will never again type for the rest of my life. 

People don't encounter adults of shorter stature and I don't think that we are all familiar with the politically correct terms 

I read somewhere that the m-word is akin to calling black people the n-word. Wish I'd read that earlier. When I first heard the term, "little person," I thought it was a bit a bit vague and made me think of a child. But children are called children. Perhaps my excuse was lazy. Some of the other actors who I met at the swimming pool said they were comfortable with the word, "dwarf," a medical term referring to atypical shortness with a degree of disproportion. This, however, has perjorative connations for some people and is phasing out of the medical field.  Recently, I discovered that some people use the term "short statured" which to me sounds less ambiguous and more neutral. 

Regardless, being politically correct often remains vague and sometimes even inaccurate, as in the case of Canadian African Americans. I once worked in a group home where you couldn't write in the reports that someone peed on the floor. Instead you had to say they had a void accident. If they were yelling and screaming at night, you had to write they "used loud vocals." If people used too many loud vocals, they got medicated. I found this to be both bizarre and disturbing.

During my years L’Arche, a community for adults with intellectual disabilities, there was not an enormous emphasis on appropriate language choices. It was in Quebec, and many of the highly devoted caregivers I met there used the term, “personnes handicappés” regularly. The people with disabilities themselves said it. And yet, it was a much more respectful and empowering environment than the group home where I wasn’t allowed to say someone was screaming in the night.

Using the appropriate politically correct terms isn’t enough. And writing with the sole intention of not offending anyone is terrible for creativity and honestly pretty boring. A truly “Exuberant Bodhisattva” would be able to write in a way that both entertained and relieved all the suffering of sentient beings. Unfortunately, my online persona, “the Exuberant Bodhisattva” has always been somewhat of an ironic joke.  The title came from this short story I wrote in university. Danny Woodburn is the second person to find it more hypocritical than funny. It may be time for a more fitting screen name.

Please leave your suggestions in the comments below.

The End.

Another thing I learned about the Small Regrets Ordeal is that you should cut down everything you write by at least 66 percent. In this post, I did not apply what I learned. Maybe next time.

 

Mirror Mirror Pool Friends, with Danny Woodburn and Ronald Clark 4th and 5th from the left.

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I Let Go, self-help book by Erica J. Schmidt

Soul Fucking
Cardboard Box
Not Separate From All That Is

 

"A broken body is not a broken spirit"

Ever since I knew they existed I have been terrified of spinal cord injuries.  Having been active my entire life, I cannot imagine ever not being able to move or feel any part of my body.  One of the most traumatizing events that ever happened to me was someone else’s spinal cord injury.   I was 21.  It happened towards the end of my second year living and working at a l’Arche home, where people with and without intellectual disabilities shared their lives together.  At L'Arche, there was only one woman who had a physical disability as well as an intellectual disability.  Her name was Isabelle, and I’ve written about her a few times before.  Isabelle didn’t have a spinal cord injury, but she was born with cerebral palsy, a condition that comes in all sorts of manifestations.  For Isabelle, it meant that she was mostly paralyzed and needed help eating and changing her clothes and brushing her teeth.  She always sat in her wheelchair or lay on her bed with her hands held out to the side, her fists clenched and her  forearms forming 45 degree angles with the sides of her body.  Sometimes she said, “aaaa-aaa-aaa,” and often she laughed and smiled looked up with her eyes.  Looking up with her eyes meant “Yes.”  Looking down to the right-hand corner of her eyes meant, “No.”  She hardly ever said no.  Most of the time she was smiling and laughing and looking up. 

Isabelle at the river

It was easy to make Isabelle laugh and smile and look up more.  I knew all of her favourite songs.  I think everyone thought they did, though we were always singing different songs to her. Her very favourite was the ABC’s but she also liked Puff the Magic Dragon, Joni Mitchell’s “Both Sides Now,” James Taylor, the Beatles, Christmas carols all year round, and anything about Jesus.  Isabelle also liked it when you talked about her friends.

 Her favourite friend’s name was a like magic word.  If you talked about Elizabeth*, Isabelle would squeal and laugh, squeeze her hands close to her sides and look up with her eyes, over and over again.  "Yes, Yes Yes."  Elizabeth was a teacher at the Montreal School for the Blind where Isabelle went to school.  For around thirty years, she’d taught children like Isabelle, taking them swimming, singing them songs, reading to them, and helping them to communicate and gain as much independence as possible.  Though Isabelle had been in her class a number of years back, Elizabeth made the effort to keep in touch, stopping by Isabelle’s classroom regularly and organizing visits to Isabelle’s home.  During her visits, she’d drink tea and eat cake, take Isabelle for walks and read her poems. Elizabeth also recorded Isabelle tapes of her reading stories and poems.   She had a soft voice and lovely British accent.

“Hi Isabelle,” the tapes would begin.  “It’s Elizabeth.  I’m going to read you some poems.”  Isabelle loved Elizabeth's voice and she loved everything that rhymed.  One of her favourite Elizabeth tapes had Elizabeth reading William Blake’s songs of innocence and experience.  At the lines, “Tyger Tyger Burning Bright, in the forests of the night,” Isabelle would crack into joyful hysterics. 

Back when I used to live in the home, Isabelle cried about once a year, when all her friends went home from her birthday party.  All we needed to do to make her feel better was put on the Elizabeth tape. 

One Wednesday evening in the spring, I biked back to the home in pouring rain at the end of my day off.  Nathalie, my Francophone house leader was washing the dishes in the kitchen. “Quick,”  she said. “ Read the letter on the fridge.  I don’t know what it means.  It’s about Elizabeth.”  In my soaking wet clothes, I ran to the fridge. Over five years later, I have the letter memorized. 
 
On Saturday afternoon Elizabeth Freeman went for a bike ride and somehow crashed.  She endured several jaw fractures, but more important, was injured to the spine.  She has already had several operations and although it is too soon to make a prognosis, she may have done permanent damage.

For weeks, this letter was all that I thought about.  Why would this happen to someone who had devoted her life to empowering children who use wheelchairs?  Why would she have to be in a wheelchair too?  It was too absurd, too ironic.  I was devastated for Elizabeth, but also terrified for the fate of my own spine.  I rode my bike every day. It was just a matter of time before I would become injured to the spine too. 

 A month or so later, Isabelle was graduating from her school, since all the students graduated the year of their 22^nd birthday.  We’d prepared cake and a thank you song for all of the teachers.  It rhymed and was to the tune of "Puff the magic dragon."  The teachers were touched and delighted.  Isabelle had been a big star at the school.

Still at the rehabilitation hospital, Elizabeth hadn’t been able to make it.  But she made Isabelle a tape for Isabelle to listen to at her party.  I have the words of the tape memorized too.

 “Hi Isabelle,” she said.  You could still hear her British accent, but her voice was a bit muffled.  As soon as she heard her voice, Isabelle started smiling and looking up.  “If I sound a little funny, it’s because my jaw is stuck together with wires and an elastic band.  As you know a little while ago, I had a bad, bad bicycle accident.  I was riding long and my bicycle hit a bump.  I went flying over the handlebars and landed on my back.”  Matter of factly, she went on to say that she couldn’t feel or move her legs.

“So like you Isabelle, I have a wheelchair.  And the people here use a lift to get me out of my bed and into my wheelchair.  It was scary at first, but I’ll get used to it.” She said that her arms got tired from pushing herself in her wheelchair, but that too she’d get used to.  Then Elizabeth said that she was sorry she couldn’t make it to Isabelle’s good-bye party, and that they’d have to get together sometime soon.  Isabelle laughed and looked up.

“Yes, Isabelle,” Elizabeth said. “Some day when it’s really nice outside we’ll get together and we’ll go for a walk.  I don’t know how, but we’ll manage some way.” 

Since that party, Isabelle and I have had several visits with Elizabeth.  She’s truly a delightful woman. At one point there was hope that the swelling in her spine would go down and allow for more movement and sensation, but that window of possibility has probably passed. 

“Of course, I would love to walk,” she said to me.  “But I know that people can have valuable and enjoyable lives in a wheelchair.”  Then she looked over at Isabelle.  “Right Isabelle.”  And Isabelle laughed and said yes with her eyes. 

A couple of times, Isabelle, Elizabeth and I went swimming.  Elizabeth was lowered into the water on the chair lift first.   Isabelle went next and I waited to catch her in the water.  Before her accident, Elizabeth had taken children like Isabelle swimming so many times.  She would have loved to help Isabelle swim again.  But how could she if she couldn’t make her feet touch the bottom? Elizabeth didn’t complain, but I just thought of all the other people in the world who would never think of taking Isabelle swimming.  It wasn’t fair. To this day, I might be less accepting of the whole ordeal than Elizabeth is.

After I moved out of the house for people with disabilities, I started to practice Ashtanga yoga every day.  Although having the opportunity to practice was a total grace, I remember feeling immensely conflicted about it.  Headstands, backbends, all this was meant to take me deeper into myself.  But how could they be that important when other people couldn’t walk?  How could these postures relieve my suffering when wonderful, giving people like Elizabeth were stuck in wheelchairs for the rest of their lives?  What will happen when I fall off my bike and everything goes to shit? 

Over five years after beginning a daily yoga practice, I try to be grateful for my life and my body as it is right now.  Despite this, I often feel frustrated by my body’s trivial limitations, and terrified that all of its abilities will be taken away.  And I feel guilty for feeling all this, because it seems shallow and not very spiritual. 

Yesterday, I came across this beautiful TED talk by Janine Shepherd, an Olympic hopeful who was severely injured during a training bike ride.  

 
I highly recommend that you watch Janine’s magnificent story.  Her talk is called, “A broken body is not a broken spirit.”  It's a really good reminder.
 
The End.

*Name has been changed for privacy.  If you meet Isabelle and would like to know the real magic word, let me know and I'll tell you.

Isabelle looking angelic.
A broken body is not a broken spirit. And what does broken mean anyways.
 
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