‘Condemn me, it does not matter. History will absolve me.’ Fidel Castro

Some days I’m so consumed with jealousy of every single person who is healthy

I think about all the ways their lives are easier

Not that they don’t have struggles

As we all do

But most people’s difficulties aren’t compounded by an incurable illness

Some days I just can’t wrap my head around even having MS

5 years later and it still feels surreal

Like this just can’t possibly be my life

Some days I feel lucky to have made it this far in life

Having found a life partner and having had a career that I loved

Today, however, is not one of those days

Today is the sort of day where I feel bitter and hardened by what life has had to offer

Today is a day where I feel every single ache and pain and can’t find relief in pill, word or song

Today I can’t find a connection to a single soul out there in the universe, no matter how hard I try

So I look forward to the night

The night when I can sigh with relief that this day has finally ended

The night when I can finally lie down in bed

Surrounded by comfort and pillows and close my eyes

Not knowing what type of day tomorrow will bring

Stuck feeling somewhere between being a hopeful masochist or an optimistic dreamer

Unsure which one I want to be

Wondering which is worse

Still not knowing which will ruin me in the end

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‘I Am Not A Teacher, But An Awakener.’ – Robert Frost

Not everyone can remember the exact moment when they had their first life changing moment

I can

I was in grade two

We were gathered around on the floor waiting to meet our new teacher

Everyone was excited and nervous

A little background:

I’d gone to the same school since Junior Kindergarten

It was a Catholic elementary school

With predominantly Italian-Canadian kids like me

The teachers were mostly Italian descent as well

They were all what you’d picture elementary school teachers to look and dress like

I liked my teachers enough

I liked school enough

And then Art walked in

Right into my grade two classroom

I knew things wouldn’t be the same

My jaw dropped, along with pretty much all the other kids

It was a woman with platinum blonde crimped hair and she wore a sorta green taffeta Victorian style dress

She had thick black eyeliner and red lip stick and pointy boots

I had never seen something so beautiful before

While the other kids were murmuring to each other that she they thought she looked kinda weird

I just sat there

And thought ‘I want to be just like her when I grow up’

I was lucky enough to have Ms. T as my teacher, 3 times over the years

She was so artistic and creative

And I loved the creative writing prompts she would give us

Where I could write whatever I wanted

We would read in front of the class

Which undoubtedly gave me the confidence that I still have today, to enjoy public speaking (somewhat of a rarity for anxiety-sufferers)

I can’t even count how many times she told me how much she believed in me, even standing up for me, when it was appropriate

Me

A little girl, then a 10 year old brat and lastly a weird 12 year old unsure of her place in the world

She would often see me standing waiting for the bus after school

And would drive me home

I absolutely loved those moments

When I felt I had a special connection with her that the other kids didn’t have

I looked forward to seeing her yellow Jeep driving down the street towards me

I’d sit in the front passenger seat and chat

I left the Jeep positively glowing

Even now when I look back on my memories, it comes with a sort of magic

Which is fitting since I was sure she was a witch with her clothes, shoes and makeup

But not the scary kinda witch that kids are often afraid of

No, Ms. T was the good witch

The one that carried a little bit of magic in her Victorian lace pockets

The magic that made me love learning and writing

Sprinkling just enough of it for me to feel so at ease and happy in her presence

When I got into high school

I was already expressing myself differently

Dying my hair

And wearing all black

Later painting my eyes black

And so on

Life had shifted so dramatically

Where I once loved to learn with an amazing teacher

Now I was often being kicked out of class for not wearing the uniform to the various teachers liking

I hated English classes almost more than any

I had two different teachers

That would pick on me mercilessly in front of the entire class

About my make up

About my hair

About my jewellery

About me

I wish I could tell you it didn’t bother me

But it had a profound effect on me

I started to hate school and resent these teachers

Most authority figures too

In the dreaded math class where I struggled the most

I was kicked out so often that I got frustrated and annoyed

I remember saying to the teacher and later to the Vice Principal

That it just didn’t make any sense

To kick me out of a class that I’d needed the most help with

I grew disenfranchised and apathetic to learning

I skipped school a lot

What was the point, I’d probably get kicked out for a uniform infraction or another

I’d see other girls often not even in uniform, and they’d make it through, completely unscathed

Over the years I’d still run into Ms. T and she always made me feel just as special as that kid who got rides in her Jeep

I couldn’t understand how she could be in the same profession as these other teachers who seemed to care more about deterring young women from figuring out who they were than of any real learning

In grade eleven, there was a new Principal and she hated me on sight

There was a meeting held

I think my father came

I can’t remember much of it

I hated school

I didn’t want to leave my friends

But I couldn’t keep doing this

The meeting had a lot to do with the school urging me to change my ‘look’

Or face the consequences

Not change my behaviour

Just the way I looked

I’d been told by my family numerous times

That it would be so much easier if I could just change

I knew they were trying to help what was becoming a horrible situation

I just couldn’t do it

I remember once my best friend and I swapped outfits as a joke

She wore my ripped shorts and flannel with a band tee and I wore her neatly pressed button up blouse with dressy shorts

I felt like my skin was crawling

I don’t know how else to explain it

I felt fake

I felt like everyone could see me without my clothes on

To have changed my outward appearance was simply not an option for me

I left the school

I went to an alternative public school

Which was the polar opposite of what I was used to

In every imaginable way

I still stood out, it just wasn’t a big deal

I wish I could say I was able to get back what I’d lost

That love of learning

But by this point I just wanted to graduate and never look back

I missed my friends most of whom I’d known since elementary school

I missed being around kids of the same culture I’d grown up in

It was kinda a culture shock

I remember urging my parents not to attend graduation

Fearful of how much they would stand out in a sea of waspy parents

Ironic right?

Sure I was lucky enough to have awesome teachers once again

Even one who let me focus my entire Independent Studies in Anarchy as a political ‘structure’

I still smile at that

Unfortunately, I never enjoyed school the way I had previously

I look back at my life of the years

Of course I think maybe it would have been easier if I’d somehow chosen on a different path

But it just never felt like a choice

Truthfully, I cannot imagine it any other way

I don’t think I really even want to

And I’m certain that Ms. T walked into my classroom and changed the trajectory of my life in the best way possible

I hope she knows for that, I will always be grateful

Through the difficulties, through it all

I can unequivocally say that the one thing I’m completely comfortable in, is my own skin and who I am as an individual

Which so many people, never seem to achieve

More-so, I’m confident in who I am

I owe it to Ms. T

After all, she steered me clear of becoming anything but boring

‘If you expect the world to be fair with you because you are, you’re fooling yourself. That’s like expecting a lion not to eat you, bc you didn’t eat him.’ Unknown

With all this time waiting

I’ve done little else

But think

Thinking of what I could do if my application for Long Term Disability is denied

Thinking of where I could feasibly work in that case

I know I have a propensity towards the bleak but I just don’t see an alternative working environment aside from being my own boss

Try as I might

I just cannot envision a supervisor being understanding about my ‘chronic absenteeism’

Having never been in a managerial position (shocking, I know) I can’t say how I would be if one of my employees was like me

A good worker but with a spotty work attendance at best

I don’t know how many people would be understanding when it actually came down to it

In theory, everyone can be a Mother Theresa

Reality as we know it

Is a very different story

I think the premise behind this is what led me to becoming a youth worker

The world can be hard

The world can be cold and lonely

And I wanted to give the youth I worked with, a soft place to land

While giving them truths and not sugarcoating life for them

I would create a space where they could count on being supported through mischief, behavioural issues, criminal activities, mental health struggles and in just being themselves

I know coddling isn’t an answer

Nor was it my objective

It was, however, my goal to create such a space they could make mistakes while being in

Getting the support and assistance from me while they were there

I won’t pretend that I was a proud momma every time a youth did something negative

I wasn’t

I’m sure I doled out plenty of lectures and rants and get-your-shit-together-kid lines

But they knew I’d still be there for them in the end

I like the thought of that so much

That I sometimes fantasized the rest of the real world is like that

Not fairytales and butterflies

Real with disease and pain

But with support from all sides

Maybe this is why I’ve struggled so much with work, the health care system and so on

I was hoping that the support I provided to youth

Would somehow be the support I in turn received

Not because of some karmic balance

But because I still believe that people are inherently good

I hoped

That through dark and cold times

I would know there was a support system behind me

Not just made up of prayers and well wishes

But of doctors who would ask questions

And ophthalmologists who would look for answers

Maybe with neurologists that would care about how the disease they’re so focused on, also affects my daily life

Perhaps that’s why I’m chronically disappointed and hopelessly let down

If I, an underpaid Youth Work and Univerisity dropout, could find it within myself

To still care

Years after hearing so many sad stories from youth day after day

Along with my own messed up mind

I guess I just don’t understand why someone who at some point got into their field to ‘make a difference’ just stopped giving a shit about the people behind their diagnoses

I know it’s not easy

With insane caseloads, and not enough hours in a day

Not to mention family and kids and taking out the garbage and just life

I really do get it

And yet I’m still left wondering why I’m not enough to care about

At the end of the day

How do you just close up shop and ignore that person you just saw

Who cried from the depths of their soul and whose desperation for help surely must have hung in the air

Like cigarette smoke on a cold winters morning

Long after they’d gone

When you walked back into the office the next day

Smelling the acrid air

Did you think about them?

Or did you just open a window?

To usher my haunted remains out

And let in your warm sunny day

‘False Hope Is Just A Game Of Russian Roulette, I’d Rather You Just Open Fire.’ – K. Piper

I had a brief moment the other day

Where I felt like I was going to get answers and help

The solutions to persistent eye pain and nausea seemed just within my reach

I fell asleep last night feeling relieved and excited

About finally getting some help

I was almost giddy

If you can imagine that…

I woke up and got ready with my stomach in knots

I felt nervous and apprehensive

Unsure what to expect

See and herein lies the problem with hope

It hurts when it gets snuffed out like a candle

It hurts more than the very reason you needed hope

The ophthalmologist didn’t hesitate to shut down a plausible explanation for my symptoms

Without suggestion as to where to go from this point

I left the clinic

Dejected

I came home

Closed the lights

Crawled into bed

Remembering why hope is a nothing more than a dangerous game of Russian roulette

And I’ve never liked the odds

‘Don’t tell me the moon is shining; show me the glint of light on broken glass.’ Anton Chekhov

It’s weird how everything can be going along decent enough

And then

Not like a boom but with dead silence

You just fall apart

Like a single glass into a million shattered pieces

All over the kitchen floor

Bits scattered like broken glass

Shards you can’t see yet but know you’ll be picking up pieces of, even months from now

You wish you could contain the mess

The fall out from this devastation

But there’s no way of stopping it, once it’s lid has popped off

There’s no rhyme or reason

Why this time and not the million times before

Exhausted, all you have the energy to do is to fall into bed

Promising yourself that tomorrow you’ll have the strength to clean the mess

But you wake up the following day

And the shattered glass has multiplied

And it’s more like the disaster of an entire glass building

Completely shattered

The destruction of which

You’ve never seen before

You leave it all there

Too overwhelmed to make a plan of how to clean up

You give up

Not caring of all the ways the sharp tiny pieces will hurt like hell

When you forget they’re there

And walk over them

Again and again

‘Sippin on Chemical Cocktails. Alive to the Universe. Dead to the World.’ Allen Ginsberg

Welcome to today

A toxic wasteland

Once upon a time, beautiful skies now covered in thick layers of smog

Politicians waxing poetic about illegal aliens, poverty and guns

People lining up with arms outstretched hoping to get a handful of something

Plastic celebrities famous for nothing more than their celebdom, and no one will care in a hundred years

Youth huddled in groups with silence stretched out between them the only sound the tap tap tapping of their fingers on their phones

Children losing their chance at an idyllic childhood to YouTube or Snapchat or or or

Crying babies born brought into a world that gives them no other choice but to cry from the beginning

Adults consumed with the need to consume more of everything

The elderly forgotten and dismissed as foolish because they don’t know how to exist in this crazy messed up universe we’ve created

People all around walking so aimlessly, more intrigued with their handheld devices than the meteor showers of chaos happening all around them

Roads and lanes and cities and towns bursting at the seams with people and need and urgency for hope

Losing sight of what’s important

Even with reminders from the enlightened that we’re destroying the earth, humanity, kindness and losing everything pure in this world

Put down your phone

Look around

Blink

And

Before you know it

It’s already gone

And

You can’t remember a time

Before

‘Do not follow where the path may lead. Go instead where there is no path and leave a trail.’ Ralph Waldo Emerson

Once upon a time

There lived a young woman

She grew up always knowing she was different

Like the odd one out

From being a little child, to a rebellious teenager and now as a young adult

She felt alone a lot

Always feeling like an outsider

One morning, she woke and before opening her eyes

She knew something had changed

As she rose from bed and opened the drapes

She sensed things would never be the same again

She looked outside

The neighbourhood sat in front of her

Nothing seemed out of sorts

She changed and readied herself for the day

Not bothering to look in the mirror

She knew what she looked like

She always stood out

No matter what she wore, or didn’t wear

Walking outside, she looked around

The people around her walked alongside her

Everyone else blended in so easily

She envied them for that

She’d tried once

To blend in

It all just felt so wrong

Like she’d put on someone else’s skin

She made it to work and went to the restroom

She looked at herself in the mirror for a long while

Nothing appeared to have changed

She was still herself

That both made her feel relieved and disappointed

She heard the toilet flush and someone came to stand beside her

In front of the mirror

When she looked beside her

The other woman standing there looked totally unlike her

No similarities at all

That wasn’t unusual

She never had much in common with others

The woman was bland

The type of person you’d forget about as soon as you looked away

The other woman’s reaction was unusual however

The stranger didn’t even seem to notice her

Didn’t bat an eye

The young woman thought maybe she’d seen this person before

Often when new people met her

They stared in shock, in awe, in disgust, in well something

She looked at her again

Trying to remember if she’d met her

It was hard to tell, she thought

The other woman looked like so many others

The young woman straight ahead

Staring into the mirror

And when she caught sight of herself

Beside the other woman

She gasped

And that’s the only way she could determine who was whom

Through the mirrors reflection

Standing there

Looking straight ahead

She saw two women

Identical in their unimpressionable appearances

Her hand fluttered to cover her mouth

So did the plain woman in the mirror

This couldn’t be, she thought to herself

The other woman washed up and left the restroom

The young woman stood there staring at her solitary reflection

Now that she had seen it

She couldn’t stop unseeing it

All the sameness between her and the other woman

Another person entered and came over to wash their hands

The young woman looked over

Again noticing how plain the new woman looked

She reluctantly looked into the mirror

Her stomach began to churn

She raised her arm

So did the woman in the mirror

The other plain Jane in the room

She settled her arm by her side

The woman beside her finished up and left

The young woman thought back to her previous night

Had something happened?

She remembered coming home from work

She remembered feeling annoyed

She had taken public transit

She remembered how everyone had made her feel so uncomfortable

They stared unabashedly

Some talked to their friends about her

Right in front of her!

This wasn’t anything new

It happened whenever people saw her for the first time

A memory crossed her mind

She’d gotten home, feeling frustrated, lonely and like a social outcast

She’d drawn a bubble bath

Sighing as she got in

She wished not for the first time

That she could be just like everybody else and feel content about it

The young woman stared at herself in the mirror again

Seeing the reflection that stared back at her

Noticing nothing about her

She looked like every other person she was used to encountering

Out of everything missing

What she noticed most

Was the absence of the spark she used to have in her eyes

She felt her hands begin to tremble

Had she somehow put this in motion?

Had she wished it too many times?

Had she gotten what she wanted?

The young woman began to cry

In an instant memories flooded her mind

With every occasion someone mentioned how special she was, in her different-ness

Every instance someone remarked at how unique she was

Every single time she had wished herself away

What had she done?

She collapsed to the floor with a loud thud

People came running

Someone yelled ‘call an ambulance’

‘She’s collapsed’

As the ambulance came to take her away

Her coworkers stood around

The young woman didn’t open her eyes but she could hear everyone murmuring

Someone said

‘Who was that woman?’

Another person replied ‘Never seen her before.’

The young woman wanted to yell at them

She was the same person who’d worked there for years!

She heard someone say her name, they were worried that no one had seen her that day