I have been very sick the last 4 years.
My health seems to be declining at a quicker pace.
From years apart, to months apart, to weeks apart, ... I feel worst.
I am anchored, disconnected, and numb.
I want to fly, to soar, to roam, to rise and fall, freely.
I want to live as I was meant and profit from my strength.
I want to belong.
It’s been difficult for me to manoeuvre to a location in order to get the photo I want, So I’ve had to do some adjusting to the pictures I can get. I like to call these adjustments “playing with photographs”. This turns out great since it’s something I’ve enjoyed doing since high school. Of course back then I used scissors, glue, and actual prints (printed by me using different colors, contrast, and brightness). And now, with the help of modern technology, I can actually do this from my bed. That is just awesome!
Playing with photographs has helped me turn a negative into a positive. Or at the very least this has taught me to find value in unfortunate events.
I have lost many parts of myself.
And I am trying desperately to hold on to what remains.
I am going on another bucket list trip soon. And already I am sad because I know there will be so much I won’t be able to do. My limitations are much clearer the closer I am to anything.
Not being able to walk upstairs feels terrible when I sit, in my wheelchair, at the edge of a staircase. Or just a step. And not being able to walk down a beach will be harder to bare when I am right next to one.
So I am excited for my next trip. I’m excited to give this gift of wonderful lifelong memories to my family. But I am also mourning broken dreams.
I will cry, and I will smile.
These bucket list items are turning out to be a mind f#$k
But it’s an important journey for me. They are moments of anger and acceptance. Of joy and sadness.
They are making me stronger as I get weaker.
As mentioned previously, my health has been declining. Because of this, and because I need to recharge, I am closing my studio doors.
I’m not giving up the arts. I’ll focus on photography, I’ll sketch, I’ll write, perhaps I’ll use acrylic on smaller canvases. I will adjust. I will just practice the arts on a smaller scale. If I can’t squeeze oil paint out of a tube? Fine, I’ll use pastels. I can’t lift a canvas? Fine, I’ll use a sketch book. I’m adapting, I’m processing, and I’m obviously grieving.
But I’m ready…
I have been preparing for this. I have gone threw all my paintings and touched up anything that needed it. I used every bear canvas I had lying around. to finally arrive at this moment, the moment I use every last drop of oil paint I have on the biggest canvas I have ever used. Although planned, the result was impulsive, smeared with thought, tears, and hope.
Until I’m ready to open the doors again,
Peace out studio
As time passed
My legs, eventually, could no longer carry me forward,
I could barely keep my fingers up when I lay them on a canvas
And, at times, the weight of my camera pulled my arms down.
I sank into a depression
I became overwhelmed by simple task, by the mundane, by my weaknesses.
I was lost, broken, and scared
I was reaching out, I was gasping for air, I was drowning in plain sight
I felt alone, crowded, invisible yet on display
Tortured by pity, by expectations I couldn’t carry, by my inability to focus,
by winter taking up too much of whatever time I have left
I had fallen, so …
I clawed words on paper,
I smeared paint on canvas,
I played with photographs,
Until I got myself back up
I thought about
my friends, my kids, my hopes,
my purpose, my motivations, my desires,
my weaknesses and my strengths,
About life and about death
And I searched, as I am still doing,
for meaning in unfortunate events
The medium to which I like to express myself changes from time to time
Revolving around the same elements.
Paint, camera, pen
Currently I’m in the pen stage.
I have been writing lots, but barely
Snippets really, yet there is no content
I am unfocused and it is deafening
Thoughts
They are random, and jumbled
Yet some clear as day
Fleeting, pointless and at times difficult
I have been numb, lethargic, and out of focus
Feeling like I should be happier, but also sadder
I am a scrambled egg, broken yet whole
I am a blank page and the resume on the back
I am a boulder in the middle of rapids
I am where I should be after many wrong turns
I am wearing pyjamas with running shoes
ready to rest, and ready to run
I am drawn by the light in the dark
I feel found and lost
I’m making plans, but not too far in advance
I am exhausted but I make myself stay awake
I feel both too young and too old
I am overwhelmed by the weight of responsibility
It is both too much, and not enough
I am a branch, among many
Strong and Brittle
I am reaching out while disconnecting
I am …. detached and uneven
The purpose of this trip wasn’t simply to spend time with friends. But also with myself.
To discover who I am, to find parts of who I was, and to be who I wish I had been, even if just for a brisk period.
It was a journey about finding strength within. Even though I have people surrounding me, I am alone in this journey, in this body, in my mind and soul. I needed to find the strength within to lift myself up, to push myself forward even when it’s hard, when it hurts. I needed to find purpose, I needed to find that voice in my head that tells me not to give up, to keep fighting, I needed to find some glimpse of independence when I feel myself fading.
Lately I have been inspired by the dark, or rather the dim light within. I feel myself grasping at what little light I can see, at what little hope I feel, at what little strength remains. So on this trip, on this journey, it was no surprise that I found myself spending most nights starring at the stars, the moon, the roaming clouds, at the dimmest of lights.
I planned a lot for this trip, I thought long and hard about, if I only had a few moments left, how would I want to spend them. Trying, fighting, living is what came to mind.
So when I noticed online that our villa had a path down to a beach. I knew I was going to hike down this path, I knew months before I ever did it. I knew I had to. And I did. It was a humbling, empowering,frustrating, prideful, angering, beautiful and awakening moment.
Of course I took my wheelchair with me, I couldn’t see any other option. But becausethe road was so rocky I couldn’t use it as it was intended and instead used it as a walker, the weight of it dragged me down. And on the climb back up I had to push it with all my might. I swore, I sweat for the first time in years, I struggled, I took my time, I carefully placed my right foot forward as I dragged my left and I found my balance with each step. I found my inner voice, I told myself that I wasn’t going to let MS beat me, I told my wheelchair “you’ve carried me on many occasions, now it’s my turn”. And most importantly I didn’t give up.
That descent, the climb back up was a metaphor for my struggle with MS, a metaphor for life. Don’t quit…
Even though my legs are sore and broken, even though my balance is off, my soul is at peace.
As for the rest of the voyage I woke to the sound of waves and wind. To the sound of sheep and cow bells. To a voice telling me a new day was beginning. That new opportunities lay ahead. I would open my eyes and be greeted by light.
This moment, this journey, completes me. I would not be who I am without it. I was guided there and it spoke to me. I can breathe again.
Physically, I am at the worst I have ever been
And mentally I am at the best
I feel like a flower as it blooms
Inching closer to the warmth
Taking in the light, the energy
I am painting
I am sketching
It’s what I dreamt of when I was younger
And now I’m doing it. I’m an artist
I don’t make much – and I give more then I sell
But it’s never been about the money
It’s about the love
My kids are at a great age.
I can see passion, kindness, love, and strength in them
I am proud
Dean is …. amazing
He is always there for me, no matter what
And he has taught me so much
I am a much better person because of him
I have great friends. I don’t see them often, and when I do it never feels like enough. But I know they’re there for me. If ever I decide to open up. They’ll be there.
I don’t get enough sleep, I don’t have much energy, and I may be wilting
but I am still pointing up
I’m an artist, a mother, a friend, a BEST friend, a partner, a wife,
a dreamer, a tourist, a photographer, a traveller,
My soul is happy
I am alive, and I love
In 2002 I was diagnosed with relapse Remitting Multiple Sclerosis.
It was….life changing.
And on October 16th 2017 that diagnosis was changed to secondary progressive MS.
I was shocked and wondered if that meant I had to change my medicine, or add new ones to the already long list I have. Perhaps I would need more physiotherapy? Or perhaps some blood test. I don’t know, what now I wondered?
So after shedding a few tears I asked “what happens now?”.
The neurologist answered “well as you know with MS, we can’t predict what will happen. There’s no way to know how long it will take before you’re bedridden”
What?
Not the answer I was expecting.
Then I noticed that you can see a glimpse of Mont-Royal from the window.
The trees were changing colors on the mountain and it was lovely.
I didn’t hear a word after that.
I just focused on the colors, and have continued to do so ever since.
I’m going to ignore whatever was said after I uttered those three little words “what happens now?”
I don’t know, nobody does
I want to be blissfully unaware of what the future may bring.
And it’s ok if you don’t know what to say, don’t know what to do. If you feel helpless.
I’m in the same boat. But if it helps, here are some things you can do:
Go for a run
I wish I could run sometimes. Quick enough for my hair to flow and to hear myself breathing. A deep heavy breath because I’m taking in so much air, instead of feeling like I’m not taking in enough. Just, do a really good cardio work out. Outdoors! Film it, let me hear your breath and see nature. I want to see what you see. Be my eyes and my lungs ….. and my legs…..
Scream
Scream REALLY REALLY REALLY loud. I feel like I need a good scream but I just don’t have the lungs for it anymore. I’m also way too shy and introverted.
So I need somebody with a good set of lungs and the guts to stand on the top of something and yell as loud and as long as they can. Channel the anger you imagine I’m feeling and scream. Just let it out, let it bring you to tears… or until a baby pops out of you. (The last time I had a “good” scream was while in labour with Julien). Let it be cathartic.
Don’t try to cheer me up.
I’ll get there. I need to be allowed to mourn. I need to let the anger fuel me to fight. Like a wise man told me, acceptance is not an option.
Go for a hike.
Hike somewhere out of the way. Hike far enough that you HAVE to stop and sit and take in the fresh air. That’s what I wish I could be doing. That’s why I’ve been depressed. Not because I want to die, but because I want to live.
So have a moment you’ll remember on my behalf.
Other then that I want to focus on today.
Today, I want to open up an art gallery on prince Arthur street.
Today, I want to take a trip. Perhaps eat a baguette in Paris or see the hills of Tuscany.
Today, I want to live
Today, I see trees changing colors and it’s inspiring
Today, I look outside and see the world ahead
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 shark
Caro 