I am well aware of the reality of MS and the unknown risks, dangers, symptoms, and limitations it comes with. I research, I hope, I struggle, I try to do everything in my power to stay informed and as ‘ahead’ of this disease as I can. The reality and the weight of this disease keeps my feet firmly planted to the ground. Almost literally as well.

But I am also a dreamer. My head is high in the clouds. I envision myself climbing mountains, crossing prairies, hiking through fields and forests. Dancing till the wee hours, and singing at the top of my lungs.
And when my legs pull me down, when I fall to the ground, when I run out of breath, I simply look to the skies. I search for rainbows, feel the rain on my skin, I imagine myself as a bird flying through the clouds, reaching the highest summits. I watch the sunsets, I see hope and possibilities in my children’s eyes. I lie in the grass to feel levelled, I look up to feel far, I drive with the windows down to feel the wind in my hair. I write to feel grounded but I paint to be free.

I may be standing still, feet planted. But it is not where my head is at.
I am not where I am

A couple people have asked how I’m doing these days, what with the new diagnosis and all, and the truth is I’m fine. I’m shockingly super chill these days. I don’t know if I’m in super deep denial or if I’m just over it.
I am pretty sick of hearing myself wine and complain about MS. I’m like the dark brooding characters from the walking dead show. (From what I remember because I stopped watching it years ago). I couldn’t take any more of their tortured lives, and I’m pretty much at the same state of mind with ms. ENOUGH!

These days my mind is just a blank and I can’t seem to focus on much. Which is good, right? No tortured miserable thoughts. No tears, no pity, no fears, just a desire to spend more time in my studio. I have appointments I’m not thinking about, I mindlessly prepare meals, I (try to) meditate while Julien complains about his homework, I don’t pay attention to the news, I shrug off the fact the fridge is empty, I stare at the trees changing colors, I’m doing puzzles like a little old lady in a nursing home, I’m laughing, I’m less self involved, I’m day dreaming of a rejuvenating vacation spot (suggestions?), I’m at peace, and I’m calm.
I’m wishing I had mastered this aloofness a long time ago. Ignorance eluded me for so long. Now it’s welcomed, it’s instinct, it’s survival.

I’ve never been very comfortable posting pictures of myself
It feels self involved and conceited. But I’m realizing now that it represents self esteem. I’m trying to be more comfortable with myself, with letting people get to know me. And one of the ways I’m doing that is by posting self portraits. I love photography and want to find a way to do more of it. Then it dawned on me that I HAVE been doing it. I’ve been taking self portraits for years and using them for sketching because I make a pretty good subject. I’m available, I’m accessible, and I know what I’m looking for.
So to “self therapize”, I’m posting them from now on.

I shouldn’t automatically think death, cancer, sadness, hurt, and pain when I think of my dad. He deserves better, and so do I. Why did I assume that if I paint about my dad, about his memory, that it should be sad. I loved him, he brought me comfort, and strength, and power, and intelligence, and love, a sense that “the world is mine, I could do anything”, I felt like I could fly, and that sometimes I was. I forgot that feeling. I must get it again in order to properly teach it to my kids.

I WILL paint about my dad, and it will be happy. I’ve found a middle ground again.

On the other hand, turning MS into a happy painting will be much harder. MS hasn’t been easy, it sucks, and it sucks more everyday as it progresses. I must focus on the good that has come since being diagnosed. Dean, Audrey, Julien, a home and the neighbourhood it came with. And although having to go on disability has been hard on my self worth, it has also given me the time to follow my dreams and to spend time with my children. It’s taught me to not put things off, to appreciate the simple things, to stop and smell the flowers, to empathize with others. It made me run to the other end of the continent and experience one the best memories I have, I went to Africa “before I couldn’t”, I took an extremely colourful trip to the south west of the US in order to find inspiration, and I get to share those memories with a guy that has shown me time and time again just how loving and thoughtful he truly is.
And it has led me to find my path again by painting, and writing. I feel like I’m way behind but let’s hope I’ve got lots of time to catch up. MS has challenged me like I never thought I would, and made me find strength I never knew I had.

I SHOULD be able to create some sort of happy painting from that.
But I can’t….I can’t help but think I could of had all that without the MS. It simply slowed me down and taken away more then it has given me.
I need to keep working on finding the middle ground with that one.

I’ll be ok. Ive got lots of happy memories to paint regardless of MS.

I was contemplating basing my next collection on moments again, but hard moments.
Difficult painful moments in order to create some truly inspired paintings. But I changed my mind. If ever I’m in a terrible mood maybe then I’ll go into my studio and release some pent up anger and sadness onto a canvas, but I’m not going to go out of my way to seek out those feelings. Although good and bad moments have shaped who I am, I prefer to focus on and remember the good, to close my eyes, remember happy moments and smile. I prefer to look at a painting and feel warmth. Cause I don’t want to give MS any more of my time. I’ve already given it too much

What inspired this decision? Doing homework with my son.
I joke about how painful it is to do homework with this guy. This truly amazing, funny, charismatic, charming, handsome, full of potential, thoughtful guy who absolutely HATES homework. But it’s not funny. The last two weeks since my show has passed and we’ve fallen back into the boring school routine have been difficult to say the least. We’ve already had to meet with his teacher (that is not typical for Mid September). I now find myself in the midst of another depression (or revisiting the last one). I am not qualified to teach children. Especially this stubborn, young, impatient, energetic kid. I don’t want to traumatize him. On a couple occasions I had to lock myself in the bathroom and have a good cry. Meeting with his teacher helped. I felt guilt for his homework looking the way it does, or being incomplete. Like I’m not doing my part. Me and the teacher, we’re suppose to be partners. She was so calm about it, she welcomed the unfinished homework if it meant peace between me and Julien, as well as my sanity. That’s what she’s paid for she reminded me. If he’s just not doing his part at home, simply close the books, put them away and she’ll deal with it at school. Typically missing a couple recesses fixes the issue in kids. Merci Mme Josée!

Anyways….

My point is I don’t want to be depressed, it sucks. These last two weeks have sucked so bad. I was on such a high after the show, after spending so much time in my studio redefining and getting to know myself again, getting a life! And then to have great weather to boot. But the darkness of homework … HOMEWORK can so easily demolish me. I can only imagine what painting about my fathers death and being diagnosed with MS would do to my psyche. I’m going to paint rainbows instead.

Have I ever mentioned that MS messes with your ability to handle stress? I didn’t know the meaning of stress before. Stuck in Tunisia with nothing but my camera, what ev. 14 hour days in computer programming classes, no biggie. Top of my class! High work load, bring it on! Incredibly dangerous ride on top of a train, awesome! Almost being bit by a scorpion in the middle of the amazon, whoop-dedoo, can I go back to sleeping on the dirt ground now? Diagnosed with ms…mmm’k.

And now, art show induces vomiting. Homework with Julien, panic attacks in the bathroom. It’s not who I use to be. It’s not a personality trait. MS sucks on so many levels.

So watch out for paintings of happy emojis and bright happy colors.
And if ever you see a dark painting, check on me to make sure I’m doing ok 😉

And to Julien
I want you to care about something, and then try to be really good at it.
You are …. so amazing.

It would be nice to see into other dimensions in order to see which choices had the biggest impact on my life. Perhaps choices I agonized over only played much smaller parts then I imagined in shaping who I am. And a seemingly insignificant choice of looking left rather then right is a what made the biggest impact.

Perhaps my health is worse is other dimensions. Perhaps I am making good choices, maybe it’s not my fault I’m sick. Perhaps there was nothing I could do to change the outcome, and I’m sick in every dimension. For some reason that thought brings me comfort.

I want to be well, but I could settle with being sure it’s not my fault I’m not.

A friend of mine once blogged about how she can be misperceived as a bitch or uncaring. She too is an introvert and she described how at work she was so consumed by her work that she totally didn’t noticed someone trying to talk to her. This turned into a complaint to her supervisor and a complete shock to her. As an introvert I can completely relate to how that must have made her feel. Introverts are often misunderstood. Sometimes a long pause means we are trying to come up with the perfect non insulting caring thoughtful empathetic response possible. Then the moment passes and nothing was said. Introverts are typically quite empathetic so to think you might have hurt someone’s feelings can cause lots of anguish. Sometimes I let my guard down, I’m with friends, we’re laughing, I start to open up more and not thinking threw every response with a fine tooth comb. But then the next day I replay everything I said over and over again wondering if I insulted or hurt anyone or possibly said the wrong thing. It can be agonizing. And to think that she might be feeling like somehow she’s not a good person really made me feel bad. We have been friends our entire lives. We always got along (probably because we understand each other) and I have always thought of her as an incredible, thoughtful, creative friend. I would call her a sister but sisters fight and we don’t. So I’m thinking about her agonizing, possibly feeling guilty, about this small act that happened at work. And all I could think is that she has done small acts that had a huge positive impact and how I just want her to know that, because she probably doesn’t.

I will never forget it.
My father had passed (I was 11). I’m not going to go into too many details at this time about that but most of that week was spent with me sitting alone in a chair watching my mother being comforted by loved ones, and me being told to go play with my cousins and to be strong for my mother. At the end of the week, at the end of the church procession, standing alone near the church steps watching my fathers casket being taking away, watching my mother being comforted and trying to be strong. My best friend walked up to me and gave me the strongest, longest hug I ever got. I broke down, she didn’t say anything just held me. It is the most compassionate moment I remember from that time. One small act had a huge impact. And that is how I think of her. Compassionate, thoughtful, strong, caring friend. And an amazing artist to boot.
Always have, always will. I couldn’t tell her that because it would be lame, but I can write it, hope she reads it, and probably never speak of it again.

It’s done

I opened my home, my art, my heart this weekend….in person!
It was scary, exciting, difficult, rewarding, humbling, liberating, exhausting to the point of vomiting, and a success. I sold a few pieces, I saw friends, neighbors, old and new acquaintances, I chatted up a storm, I broke a rib, I ate some brownies and had a glass of wine and ended the event puking in the bathroom. No more brownies and wine for me. Even with the less then ideal ending I call it a success. Why, because I set out to do something and I did it. And the fact that my friends were by my side made it perfect. Some of you might think this is a normal thing for me (flattering) but this was the first time I have ever opened myself up like that. Kudos to me.

I was worried (about a lot of stuff) that after this event, after I completed this project I would be left feeling empty. That I would have nothing left to look forward to (especially with winter coming). But I feel great. Well not really. I’m physically and emotionally drained, but in a good way. So I’m resting and taking the week off, sort of.
I’m enjoying the wonderful weather, I’m slowly putting all my paintings away, I’ve got projects lined up in my head, I’ve got my sketch book out already (my right arm isn’t happy about this, its still pretty sore), I’ve got a painting I’ve been commissioned to do (it’s going to be hard working off of someone else’s inspiration. But I’m ready for the challenge), and I’m thinking of my next collection.
I know what I want to do, but I’m not sure I should. This latest collection (honestly, I hate calling it that but that’s what it was so…) was about happy memories. Places and colors, and memories that brighten my day, my thoughts. This next collection is going to be smaller for one (3 or 4 pieces), and much darker. I was going to focus on hard memories. Bad memories. They have made me who I am, they are … inspired, but they are sad. So I’m not sure, do I want to go to a “dark place” for a couple of months? Is it worth it for “art”? Will I even be able to look at the pieces afterwards? Will it be cathartic or gut wrenching? Am I over thinking it. Will the fact that it’s winter help with the inspiration or will it be a dangerous combination.
I could stop now, end on a high. Or I keep going, see where my inspirations lead me.

For now, I’ll focus on resting and motivating myself to open that very heavy box that came in the mail today. I’m so excited because It’s my new easel, but it looks like it will be lots of work to put together and my right arm is begging for a break. So maybe I need to motivate myself NOT to open it. Rest Caroline, I know you feel like time is limited but it will be more pleasurable if you aren’t crying in pain while putting the easel together.

Alright, Caro out (for a few days)

I’m 50 % / 85 %

Almost 16 years ago I heard terrible news, I had MS. It came as quite a shock. I had never had any major health issues, I took care of myself, I exercised, and I lead a fairly healthy lifestyle. So I fully expected to be given a prescription for my symptoms and be on my way that day I went to the hospital for a sore wrist and a numb arm. Instead I was told I had to stay at the hospital for a few days in order to run more test because they suspected I had “MS”‘. What the hell is that I thought to myself, they are out of their minds.

The diagnosis was confirmed a few days later.

Since then my feelings on the subject have been a roller coaster. I’ve been through the stages of grief on many occasions. When I was first diagnosed, when confronted by my limitations as a mother, when feeling the loss of who I wanted to be, and then realizing the deterioration of my body years later. I seriously thought I would be one of those people who had one attack and never have any again. I wasn’t. I am not, I don’t want to be, a sick person. It’s a personal struggle everyday from needing to accept my condition and not wanting to be sick. I don’t know how to not be angry when the anger is what fuels me to fight. And I don’t know how to keep fighting, how to keep digging myself out of this hole when all I’m doing is building a bigger wall around myself, which makes it impossible for me to see what is going on around me.

It took years for me to realize the damage MS was doing to my body. Seconds were taken off my tolerance on a daily basis. A few seconds a day didn’t seem like much, but 15 years later and you’re down to being able to walk for maybe 10 minutes and BOOM it hits you in the face and you break down crying on the sidewalk. Why me, what am I doing wrong, this is not who I am. I am not a sick person. I am an active, optimistic, healthy person. Get me out of this fucking body!

My name is Caroline and I have MS.

I use to window shop with friends for hours in downtown Montréal, I’ve ridden a camel in the Sahara, I’ve watched wild animals in the plains of the Serengeti, I’ve danced till the sun rose, I swam from one island to another, I’ve walked the beaches of Cuba, the Turks and Caicos, Santa Cruz, Tunisia, and Bathurst, I’ve hiked, slept and felt the rain on my skin in the Amazon, I’ve ridden on TOP of a train through the Andes, I’ve trekked around the Grand Canyon, I’ve swam in the ocean, driven to California and back from Montreal, I’ve gone white water rafting, mountain climbing, rock climbing, running, horse back riding, hiking, I took the stairs rather then the elevators, I would park in the furthest spot at the mall, I drove to Quebec City at 3am so I could watch the sunrise over the Plaines d’Abraham, I walked to far away gaz stations when I’ve been stranded by my reliably unreliable beat up car, I travelled (less then I would of liked), I felt ambitious and driven, I partied, I stayed up too late and woke up too early, I sought new adventures, I tried new things, I felt alive, I had a fire in me, and most off all I never wondered “can I do this?”, I lived

And now, on a good day, I might go grocery shopping by myself.

I should start referring to myself in fractions, as in two numbers because I feel torn in two.
Torn between the person I would of been, and the person I am because of MS.
I hope I will get better but fear I will get worse.
Knowing that my worst day, might also be my best day going forward.
I have scattered thoughts running through my head, they are lingering yet unfocused.
My feet are firmly planted to the ground, yet my head is in the clouds.
I feel the need to control my emotions yet I desperately want to let them go.
I am healthy and sick. I am happy and sad. I am broken yet whole.
Everything is so clear, but I feel such confusion. I know I am here but I am lost.
I am strong yet oh so fragile. I am alive but I am mortal.
Part of me wants to talk about it, the other half doesn’t at all.

This blog is my middle ground.