A week downtown

February 27, 2019 / Jumbled Girl / 2 Comments

This week I was back downtown, not exactly where I use to live and love, but close enough to everything. Malls, the metro, tunnels, restaurants, the Montréal light festival, and I even saw people zipping by my window. (literally, there was a zip line set up).

This getaway wasn’t fun, it was liberating. To wake up in the morning, see it’s snowing outside and still be able to go get a tea, food, do some shopping, get a haircut, do the little things I once took for granted, and not having to worry about how I’ll get there was such a relief. I was rid of anxiety for the first time in a long time. And it didn’t hurt to sit by a fire and write, and then get back to a clean room. Fun, I don’t know. Do you enjoy going to the pharmacy? Maybe not, but being able to do it sure is nice.

My kids even passed by and I took them to the pool, to a chocolate shop, a nice dinner at Baton Rouge, and then dessert at chocolate favoris. And I never once worried about accessibility. Such relief.

But this getaway also had an unforeseen result. In that I realized I’m no longer a city girl, and just how much I have grown. For years after moving away from the plateau, I longed to be back there. In my well located apartment on prince-Arthur, surrounded by restaurants and anything else you could possibly need, and all at walking distance.

When we first left downtown to live in the suburbs, my health started to decline. For a long time I associated the two together. I blamed the suburbs for my loneliness, for my illness. Even though I knew they weren’t linked. But now I have grown to love my little community, my neighbors, my little suburban home. People dressed in their best pair of jogging pants while they shovel their driveway or walk their dog. Sometimes I even dream of living someplace more secluded. I long for fresh air, mountains, trees, and the quiet of nature.

I am not who I once was, and that’s ok. I will always look fondly on my time in the city, but I’m ready to let go of the city girl.

This getaway was meant to re-emerge myself into Montreal, but it turns out it was more of a chance to say good bye. And I’m good with that.

Brushstrokes

February 23, 2019February 24, 2019 / Jumbled Girl / Leave a comment

This winter has been hard. It snowed early and (for disability reasons) I found myself trapped in the house sooner then imagined. I have been, basically, hibernating since November.

The lack of sun, and human contact has turned me into a hermit.
I have become detached and depressed.

Last winter I painted on a regular basis and it kept me sane and content. Happy even. This year I hadn’t lifted a brush … until someone asked for an original.

This painting has been my saviour these past few weeks.
It’s like finding purpose again. A weight lifted and I stood

I’m not sure exactly what you want, but be certain lots of thoughtfulness has gone into it.

I am not ready to reveal it yet, but also anxious to do so.
So here is a sneak peak of an extremely happy, colourful, abstract painting. Shown here, in its entirety, with lack of color.

These brushstrokes
Are part of many, of thousands
Yet they stand out, they are unique
Destined and impulsive
And inspired by color.

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Freedom

February 22, 2019 / Jumbled Girl / Leave a comment

I have been somewhat trapped inside the house since about November. Venturing out only on a few occasions. Dinner with friends, or with family, and a trip to the art store.

I have a progressive disease and …. well….it’s doing what it does. It’s progressing. It feels like it’s progressing quicker but that’s probably because I have less endurance left. In the beginning I could walk / stand for hours and hours, so loosing a few seconds was barely noticeable. But those seconds have added up throughout the years and I’m down to a few minutes. I can notice the minutes getting less and less, week by week. Dean has had to carry the weight I can no longer handle and I feel like a burden, even though no one has ever complained.

I was scared (again) that I could no longer lift myself up, mentally and physically.

Of course the weather has played a major role. Every time I felt the strength to venture out, we would get another snow storm and I retreated to my safe spot. My home.

So I decided to venture downtown. To spend a few nights in a hotel linked to all the underground, snow/ice free, tunnels. To see if I can live independently again, once accessibility is no longer an issue (sort of).

I had been drowning, let’s see if I can learn to swim again.

The view

February 2, 2019February 2, 2019 / Jumbled Girl / Leave a comment

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I had this peaceful view for a very short time when we stayed at a chalet up north,

I was able to ride my wheelchair to the bottom of the hill.

Then use my cane to walk very slowly and very carefully to the end of the dock,

Where I planted my tripod and fell to my knees.

I stayed there for a while

Watching the ripples in the water, and the trees gently swaying

Listening to the frogs croak and the leaves ruffling in the wind

And then angling my camera for a shot

The joy, peace, and serenity from this time were intertwined with the sadness, fear and realization of my situation. It truly was a beautiful, thoughtful and poignant moment

….

I really hope this wasn’t my last time …

At the end of a dock

Uneven

January 9, 2019 / Jumbled Girl / Leave a comment

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 truth

November 26, 2018 / Jumbled Girl / Leave a comment

I am sick and I am scared.

When one of my children is doing something that annoys the other, I tell them “just ignore it and they’ll stop”. I have been using this reasoning with MS as well. I’m trying desperately to ignore it. And the worst I feel the more I dream. I search travel spots, I make dinner plans, I get a dog!, I plan for an MS free future. I feel both in denial and hopeful. My upbeat attitude can appear to some as “I’m doing better” and I guess in some aspects I am. I’m no longer letting MS (argh…hate those letters…back to pickles) I am no longer letting pickles stop me from dreaming, from making plans. And that is good, that is better.

But the truth of my health is I am not doing better. I am getting worst. I’m just ignoring it even though I am reminded with every step I take. My legs are stiff, so stiff. The spasms are more frequent, my balance is completely off. And the fatigue is constant. CONSTANT. It never goes away, it just gets worst. I know it is there, all I can do is nap. And I don’t talk about it because then I am no longer ignoring it. But it is there. It is the big fat elephant in the room. And I’m just hoping it doesn’t crush me.

Thank you

November 8, 2018 / Jumbled Girl / Leave a comment

I feel like I need to mention this again to my friends, although I’ve said it in person (I hope I did), but it should be in writing as well. Thank you for travelling with me. Thank you so much. Thank you for lifting the dam wheelchair for me, making it seem like it wasn’t a pain in the ass. Thank you for carrying it up stairs, thank you for helping me in & out of the pool, thank you for carrying things for me when you saw I was having a hard time. Thank you for making spots that would of been inaccessible to me, accessible. Thank you for your patience. Thank you for taking the stress of researching areas for accessibility away from me. A weight was lifted and it made it possible for me to save my energy for travel. For discovery.

One of you told me you didn’t realize just how constant my disease, my symptoms were. It is there every day, with every step, the struggle and fatigue constant. Every place I go I have to worry about accessibility. It is overwhelming for me. It makes me hide out so I don’t have to worry about it. It never stops. I was both relieved that someone understood, and scared that it would push you away. That it would become overwhelming for you as well. Travelling with me, around town or abroad, is not easy.

I wouldn’t of been able to do this trip without you. I may not have been as integrated as you thought I would of been. But I was, fully integrated, in my own way.

I don’t know how many more trips I’ll be able to do, and if this was the last, I am so happy I made this one with both of you. The wonderful memories of roaming sheep, the sound of waves, the beautiful landscapes, the great company, the window shopping, the blue skies, the starry nights, will stay with me forever.

Thank you

Journey

October 26, 2018February 6, 2019 / Jumbled Girl / Leave a comment

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 because the 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.