The trouble with using a wheelchair

Aside from the obvious reasons why being in a wheelchair sucks like:
– I need it cause my legs don’t work too good
– It’s hard manually ridding the dam thing around (Montréal roads suck, they suck real bad)
– Getting the wheelchair to a location isn’t obvious either (it doesn’t fit in my purse!)
– being in a seated position enhances my lovely curves I’ve gotten from creating 2 humans
– Children often think I’m a grand-mother. (Screw them, I’m not old!)
And
– It can be really hard wishing I could be standing someplace as inspiring as where I’m looking at. Like on top instead of the bottom of a mountain to watch the sunset.

One of the most annoying parts is that people are looking down at you. Literally.
Sitting in a wheelchair almost everybody has to physically look down at you. This simple, innocent act eventually starts to transform into an emotional feeling that people are figuratively looking down at you. I know they aren’t, maybe they are, I don’t know. It’s certainly feels like they are because well…they are.

So when I take a picture of myself, or as you young kids call it “when I take a selfie”, I’m almost always looking down. It’s not that I want you looking up my nostrils, it’s that I want to be seen from another angle.

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What’s a girl to do?

I sold my bike yesterday.

This was a bigger deal then you’d think.
A few months back Dean innocently asked me “what are you doing with your bike? It’s kind of taking up a lot of space in the shed”, a simple question. I haven’t ridden it in over 2 years. And we do need space. The kids are growing up, they have bigger bikes and more stuff, we need more space. “We should sell it” I say.

Immediately after, I hear in my head: “because I have ms and there’s no cure and I’m not getting any better so if I can’t ride it now I probably never will.”
You see the reason I haven’t ridden it, is because I can’t. Even if I managed to get on the bike, my left leg isn’t quick enough to stop me if I started leaning to the left. Imagine no leg on the left.

A depression followed.

Such an innocent question. He had just come out of that shed as frustrated as me when I get out of that shed. And in that shed there’s a huge shiny electric red bike not moving. And if we moved it it would solve so many things. It’s a reasonable question. An obvious one I had been avoiding. One that didn’t cause but did not help me as I was going into a downward spiral. I couldn’t carry the weight of MS anymore. I fell to the ground for a while there.

The black

Months later, I’m painting in the basement and thinking about my bike. It won’t sell “how can no one want this awesome bike?!”. Should I keep it? And I start thinking about what a friend once told me after his mother passed. He said he wished his parents hadn’t given up. I don’t ever want my kids to wish that. What does giving up look like. I was selling my bike. I was saying I’ll never be better. That sounds like giving up. I can’t sell the bike!
And as quickly as I could, I go up the stairs to see Dean and the kids in the living room. I shout “I’m not selling the bike! Because I’ll use it again! Suck it! HaHa!” And with a huge smile on my face I go back downstairs (at a milder pace).

The white

After a couple weeks. I’m still thinking about my bike, I’ve used that shed a few times now this summer, it’s a pain in the ass, and we need space man. But I keep telling myself every day “I will ride my bike again, I will ride my bike again, I will ride my bike again”. Then I think about it really hard. And the answer is so clear,
I will ride my a bike again.
That’s it. I just need to change my saying! Now I can sell the bike and still be optimistic, brilliant!
“I will ride a bike again! I will ride A bike again! I will ride a bike again. I will ride a bike again!

….

Just not mine, cause I sold it to make space in my m@th3r f&$@ing shed. 🙂

I WILL ride a bike again.
I will clean up the m@th3r f&$@ing shed! (She said doubtfully)
And with the money made, I will get myself the easel of my choice and use the shit out of it. I will add layers and layers of paint to it. Making it one of a kind and absolutely mine and beautiful.

To my friend,
I hope that if you were my child, and I was your mother. That you wouldn’t think I’m giving up. And I hope you don’t think that as a friend either. I’m sorry you went through that. I won’t give up. I don’t want that to be my legacy. It was a good talk. Thank you 🙂

To the guy who bought the bike.
Merci infiniment d’avoir été si gentil pendant la “vente”. C’était beaucoup plus qu’une vente pour moi, c’était toute une histoire. Et probablement une peinture. J’ai eu des merveilleux temps avec cette bicyclette. Il y a une parti en moi avec le cœur brisé. L’autre parti est pleine d’espoir. J’espère que l’histoire de cette bicyclette est longue et éblouissante.

The middle ground – the gray

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The death of my father.

Is a blog I will write one day. Not today.

 
I painted this today.

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As I stared at this painting (I always stare at my paintings, if I can’t I know it’s bad), so as I stared and stared at this painting it eventually dawned on me that If I hang it this way, and call it “the death of my father”, it perfectly represents that moment in my life, but in color.

I don’t think I need to explain it.

Who knows, maybe one day I’ll write the story behind it

TAOCTGFOCTA

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In December of 2001 I took a trip to Tunisia. Unknowingly to me it would be my last trip before being diagnosed with MS. I was very nervous going on this trip and the anxiety was only exacerbated when I arrived in Tunisia and they had lost my luggage. I was leaving the next morning on a tour so I couldn’t wait for my backpack. I had to choose. I chose to leave the bag behind and I ended up travelling across Tunisia with only my purse (messenger bag type purse), my CD player (and mix), my toothbrush, my wallet, my passport, my camera and some film. In the end, that’s all I needed. It was very symbolic for me. This obstacle made me stronger, it made me leave behind many types of things. My distractions, my desires, my obsessions, my safety net of sorts. I had nothing, and I was in the middle of nowhere, and I was scared, but I had everything I truly needed, I had my camera. I was so attached to it. I loved the feel of it hanging around my neck, the feel of the lens in my hand, the tranquility when I looked through the viewfinder. It’s just me, the camera and what I’m looking at. Nothing else exist.

If needed, I washed my clothes in my hotel room at night and hoped it would be dry in the morning. I saw beautiful sunsets, from beautiful locations. But what I remember most is the Sahara. Not my clothes, not even the music I was listening too. The Sahara , which I spent on top of a camel from early in the day right into the sunset. I remember endless amounts of sand, different shades of yellow, and the sky slowly changing colours. I may not have been able to fully appreciate the moment at the time (sitting on a camel is very uncomfortable), but it remains as one of the most significantly colourful moments in my life. And of course I had my camera but only a few shots left (I only had a 35mm SLR back then). So I had to make every shot count. Which I did….

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Fear, anxiety, and excitement

One day, while painting, I told myself “I’ve got to get rid of some of these paintings!”
Yes this habit can be expensive but I don’t go out much so instead of spending my money on bars, drinks, shows and fancy clothes, I spend my money on art supply.
But that’s not why I have to get rid of them. Space is getting tight, if I stare at any painting too long I take the risk of painting over it. But also in order to move forward, to be inspired, I need a white canvas in front of me. I need to leave the past behind.

So I’m having a small show so anyone interested can see my paintings in person, and to maybe let some of them go. And who knows, maybe make enough money to get myself a new easel.

I’m really excited about this, it’s giving me something to do besides chores. But I’m also extremely nervous about it. Opening up my home, letting people in, putting myself and my art in a situation to be judged. It will be the most exposed I have been in a long time. And the decision to do this didn’t come easily but I felt it necessary. I don’t know how many opportunities I’ll have to do this. From having the energy to organize it, to having a chance to say hello again to people I haven’t seen in a long time, and in some cases it might be a chance to say good bye.

Every piece in my latest collection is inspired by the colors I remember from profound memories I have. From the red rocks and blue skies of Sedona, mixed with the white sands of New Mexico. Day turning into night in the vast dunes of the Sahara desert, the sunsets over the grassy fields and dry lands of the Serengeti. The grass, the mountains, the lakes, the rain, the snow, the colored leaves of fall, the sunsets, the city, the nightlife, the calm, and the busy life lived in Montreal.
I like to remember all these moments (and more), and the people I spent them with, in color.

So for anyone interested in possibly coming to my show, send me a message and I’ll send you the info.

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I use to love cooking

Not sure what to eat? How about a head of lettuce, miam miam 😋
Throw in some cherry tomatoes for a kick!

I’m kidding and I’m not.

I rarely feel like cooking now and having pre-washed and prepped fresh veggies on hand is super helpful. It’s not creative, it’s actually quite dull, but it’s healthy and filling.

I once thought of becoming a chef and opening up a restaurant. But that seemed like lots of work so I thought of opening up a catering company instead.

That idea quickly vanished when I had kids.
Now, I don’t want to cook nothing.

I feel incredibly guilty and like a terrible mother when I say this, but cooking for kids has sucked the joy of cooking right out of me.

It started when they were babies. They obviously can’t help, they can barely get the food into their mouths, so they aren’t going to help you chop vegetables or clean up afterwards. I had to prepare their meals, 3 times a day, everyday. And it was very dull food. I’m not going to serve roasted stuffed chicken breast with a sauce of creamy digonnaise sauce reduced with white wine, a side order of sautéed spinach and crispy garlic home fries. They aren’t going to like it. Trust me I’ve tried, anything with spices and flavour they would throw back in my face. I could of kept trying, force them to refine their palate. I could of continued to spend over an hour preparing fancy meals while simultaneously taking care of kids. Exhausting myself to only have it thrown back in my face and deal with a hungry crying baby while also trying to eat my portion before it got colder. And sometimes I would get a phone call from Dean saying he’ll be late. I would sit there with my fancy meal going cold, half of it on the floor, a crying baby (then 2) and a mountain of dirty dishes and wonder “why am I doing this to myself?”

So the meals got simpler, quicker, plainer, kids would eat, no tears were shed (most of the time) and I fell into a routine where I just cooked for the kids very dull and boring palate. Everyday, 3 times a day. Sometimes (if I had the energy) I would also make something for the adults to eat. Something fancier, more flavourful, something you could actually crave. I would try and get the kids to try it, sometimes they would and spit it out, sometimes they wouldn’t even try it. But it got tiresome. 2 separate meals, piles of dishes, a floor and kids to clean. So in order to conserve my energy I almost never cooked anything I actually craved. Meal time became something I almost loathed.

As they got older they would accept more ingredients into their repertoire. After 10 years Audrey is much more adventurous. But my desire to cook has almost completely dissolved by now. I’m exhausted, mostly from coming up with meal ideas. You want to know what it’s like to be in a relationship/family. It’s wondering every day, multiple times a day, what people want to eat. I miss not having to worry what everybody else wants, and just doing or eating what I want. Eating paleo doesn’t help either.

So I grab some romaine lettuce, some baby carrots and just stuff my pie hole.

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Let me tell you this crazy story

So I’m swimming in the sea with the kids. We’re at a beach in Bathurst New Brunswick. We’re having fun in the waves, you know, splashing around.

When all of a sudden I feel something on my leg, like a huge sting. I look down and there’s a fucking shark attached to my leg. A shark! On my leg! In New Brunswick! Not a great white but like a blue shark. Maybe 4 feet long.

So I’m standing there obviously in shock, the shark let’s go and backs up a little. The water starts to turn red. I start to snap out of it and look at the shark. Then I turn my head and look at the kids. I look back again at the shark just as it darts towards us. Then before I know it I leap towards the shark and grab it by the neck and start punching it the face. I yell “GET OUT!” To the kids. With such force they know to listen. The shark wiggles free from my “neck grip” and darts back for my leg, it smells the blood I imagine.

This is a sharks basic instinct to eat, to live, versus a humans basic desire to survive, a mothers instinct to save her kids. It bites, I punch, it shakes, I bite into it’s fin while I wrap my arms around its neck again. I look back, kids are still getting out of the water, so I look back at the shark and just punch it over and over again. I’ve never felt such strength. It’s so powerful, awakening. The shark wiggles a bit, still in my arms, I look back again at the kids and they’re out of the water, finally! I start dragging this thing to the sand, he’s fighting really hard and he’s so heavy, but I’ve got him. I’m out of the water, I throw the shark further down the beach with more strength then I’ve ever had, I watch it wiggle in the sand a bit, I look at the kids safe on the beach, they look shocked.

I look at my bleeding leg, flesh, blood, skin hanging, bad, very very bad, I fall to my knees.

I look at my kids, I look at the shark, he’s no longer moving.

I look at my kids, they look sad.

I look at my leg, I’m sad too because I know what this could mean.

I look at my kids, they’re holding each other, perfect, they’re there for each other. My leg, so red, so much blood.

I’m so tired that I fall unto my hands, I try to hold myself up but I fall into the sand. My face is turned towards the kids. They’re crying and moving closer.

I stare up at the blue skies, I hear the faint sound of waves and nothing else, I look at  my kids, I imagine them having BBQ’ed shark for dinner, I smile. And then I close my eyes…..

Would you rather hear that or…

I have MS

 

Over the years now I’ve been asked many times, by many different people, some form of question about what’s wrong with my legs. Were you in an accident, did you get hurt, what happened? I can only imagine that they were somehow expecting some exciting story about either a car accident, a plane crash, falling down the stairs or me taking part of the humans versus robots war. Because every time I tell someone I have MS they look disappointed.

I don’t mind talking about it, I’ve come to accept it. To me it’s not a downer, IT ISN’T FUN, but it doesn’t get me down. It’s like telling someone I have a kitchen table. It’s incredibly dull. But It is very hard seeing the look of disappointment on their faces every time. I can’t blame them. I can’t imagine anybody telling me they have a degenerative progressive incurable disease and not being sad upon hearing this. But I also don’t want to be rude and say nothing. And I’m not comfortable with lying. It has come to a point where I’m really anxious, almost fearful about meeting new people, because I know I will eventually become the downer in the room. The total buzz kill.

So after years of racking my brain about how I should answer this inevitable question i believe i have come up with a comfortable answer …

“let me tell you this crazy story”

I like to imagine I would look like this if ever I had to tackle a sharkIMG_3744

But truth is I would probably look like thisIMG_3745