‘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

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“In the midst of winter, I found there was, within me, an invincible summer’ -A.C

Round 2, Day 1 Down of Lemtrada treatment

The day got off to a rocky start as I woke up at the crack of my ass (aka 4am)

After taking the dose of Prednisone, I started experiencing intense leg cramps or spasms

Aside from that, Joey was my first guest to join me today and we headed out to the clinic around 745AM

I was disappointed to find that Sharmela was off on mat leave but was sooo grateful to have the awesome Amanda in her place

Amanda was a straight shooter and her calm demeanour aided my own to chill the fuck out

There were a few glitches in the beginning with a faulty line in that just spurted some fluid and has left a grotesque and slightly painful bump on my hand

Second shot went in fine

Did the usual Solumedrol dose

Yippee more steroids

And then an hour later onto Lemtrada which is delivered intravenously over 4 hours

Lunch was a tough sell and my appetite was wonky at best

There were a few scares

Namely my high blood pressure and accelerated heart beat

And the muscle cramping in my legs was at some points unbearable

But my good nurse doped me up and got me through it

We stayed for the roughly 2 hour observation time afterwards to ensure no major reactions occur

And thankfully they didn’t

Amanda wrapped me up and left the port in for easy access (😬) tomorrow morning

But all I feel is like the warrior I am wrapped up and ready for more battle

We got home around 530PM this evening

It was a long ass day and we were both proud of ourselves for having pre made dinners to be heated up over these next few days

I’ve now eaten a bit more at dinner taken more antivirals and can honestly say I rocked the fucking shit out of this first day

I was tired, cranky and spastic and I still made it through (blood splatters, trapped IV tube blood and all)

Yay fucking me

I want to leap on trees and scale gates and scream so loud that I lose my voice because I discovered something in me

Maybe only a mystery to me

But

I know I can fucking do this

I’m going to take more drugs cause I ain’t no hero and like Samuel L Jackson urges your damn kids to do, I’m gonna take his advice and ‘go the fuck to sleep’

👊✊🏼✌️

The mind is a terrible thing to taste..

It’s too much

It’s too hard

It hurts too much

I’m too weak

I’m not strong enough

It isn’t worth it

You’re too sensitive

You’re too moody

You think too much

You need to let things go

They think I don’t try hard enough

They think I do it to myself

They think I should just get over it

They think I always feel sorry for myself

Mostly they’re right

I don’t want to feel like this forever

I can’t keep doing this

I’m so tired of all of this

I’m too weak for this shit

I’m just so tired

I wasn’t made out for this

Maybe if I didn’t spend as much time as I do battling the thoughts in my own head

Maybe if I wasn’t so hard on myself

Maybe if I didn’t compare myself to others

Maybe if I didn’t get lost in this sea of maybes

I can’t even imagine telling the youth I work with the same things that I tell myself every single day

And if they told me they were having those very same thoughts

I’d help them tear down every last one of those deceitful thoughts

I’d tell them that sometimes their minds play tricks on them

But that they have the power to change their way of thinking

By using evidence to prove those thoughts wrong

I’d say ‘you say you’re not strong

But you survived x, y and z’

And they’d look back at me not believing a word

And then I’d say

‘You say you don’t want to feel this way forever

What are you doing to change the way you feel? ‘

They’d hang their head, and reluctantly answer that they’re not doing anything to change their feelings

I’d respond with ‘You know it won’t happen over night

Sometimes the things that will make you happiest, take time and a lot of effort to get’

They’d look back at me

And I could see in their eyes

The minute

The second

That it clicks for them

That they get it

And they know that I’m right

That they have the power to change their lives

They hold it in their hands

They’ve always had it

They’ve just got to find it

And yet

Even after all these years

And all this time

And still

I can’t

For the fucking life of me

Find it in myself

Truth Be Told

https://www.facebook.com/TruthBeToldMS/
A lovely new friend of mine started a podcast about life with MS. You don’t have to have MS to appreciate Marie’s story and her awesome sense of humour (or how her Scottish accent peaks through sometimes 😬). Marie was diagnosed in the 80s, long before I was but the feelings we share after diagnosis are the same. Have a listen and step into her shoes for a moment. 

‘New beginnings are often disguised as painful endings’

I crawl into bed

Close my eyes 

And the first thought that comes to mind 

Is that I am happy tonight 

My heart that usually feels so heavy yet so empty feels like bursting with vibrancy 

My eyes often so tired and strained feel the satisfaction you get after a rigorous workout

My body equal parts listless and pained feels like it’s tingling with anticipation 

My mind cavernous and sometimes chaotic is eager for what might come next

I want to capture this exact feeling in this moment

In the only way I know how

Immortalizing it with words and reflecting it back into the world 

Maybe someone might just be looking back

In this moment I want to just let go and feel sure that the world will catch me 

So secure and safe I feel tonight unlike nights where my muscles tense with fears of what was once and what’s beyond

I want to wake up and bask in the leftovers and soak up the remnants of this moment 

I’ll close my eyes

And wake up in the morning 

And without opening my eyes, I will just know that this morning is different

With the beginning of a new day carrying only hope and possibilities 

And not another fucking curse

And she lived…

So as some of you may know MS has caused ongoing vision problems for me

I’ve had optic neuritis several times

Each time it has stolen a piece of my vision 

Only to return it scarred and less functional

I used to be an avid reader

‘Used to’ 

It makes me sad to even write that

I would devour books so quickly and effortlessly

I took that ability for granted

I never thought there might be a time when I wouldn’t be able to

I can still read

But it causes pain and irritation in my eyes 

So I started listening to audiobooks

But it’s different now

For some reason the books of before

Don’t hold my attention through listening 

So I listen to fluff

I listen to romance audiobooks 

With happily ever after endings

The old me would have snorted and scoffed with derision at this shit

But anyway

That’s what I listen to these days 

A few days ago I started listening to an audiobook that had tons of positive reviews 

People wrote that it was sad and beautiful and romantic and they cried

So I gave it a go

The story progressed nicely

The hero and heroine met and fell in love

The heroines sister was ill and eventually passed away

I thought to myself ‘that was pretty sad’ and was glad I’d moved past the sad part in the story 

And then

There was an incident in which the hero ended up in the hospital 

And his nurse said he’d likely have to start a round of Solumedrol 

Shit

I thought

I know what that is

It’s a steroid for inflammation

Don’t let this go there

I kept listening 

The heroine had heard of that drug before as well since her sister had battled Huntington’s disease 

The hero and heroine looked at each other and the heroine asked, with tear filled eyes if the hero was sick

The hero, with great trepidation and a heavy sigh (that only someone with a burden knows too well) states that yes he has a disease

Shit

I thought

Don’t let it be what I’m thinking 

He says he has Relapse Remitting Multiple Sclerosis

Pause

For me anyway

I don’t know what the heroine said

I don’t know what the hero said

I stopped the audiobook

I guffawed

Seriously

I fucking guffawed

I got out of bed

I turned on the lights

I got annoyed

So fucking annoyed 

Why did this guy have to get MS

MY kind of MS

What kind of fuckery is this?

Who fucking gets MS in a romance book?

I felt cheated

I passed the sad part of the book

I wanted the happy ending

I needed the happy part where everyone is happy and safe and healthy and the hero and heroine get their happily ever after

I did not want to relate to the fucking hero’s sad shit

Full stop

I got annoyed and irritated when I found out I had MS

When I learned that it was MS causing the blurred vision 

Then after learning about MS and the possible course of the disease

I felt fucking cheated

This was not supposed to go this way

I conquered anxiety

I manage my depression EVERY damn day

This was supposed to be MY time

Even though I wasn’t reading romance books then 

I’d read enough books at that time to know

That every great heroine has to overcome a battle

And I did

With great difficulty

With a lot of pain

I was ready for the happy ending

I expected it

Where was my happy ending?

I don’t mean the drivel with the love eternal and the wedding bells, 2.5 kids, house and a white picket fence

I mean the part where I get to live out the rest of my life in peaceful contentment

Feeling like a heroine 

Cause I’d slayed my beasts

And then it came to me

This is why I’m so pissed off with MS

So angry so much of the time

Because I don’t know how this story ends

I don’t know that the heroine is happy in the ending

I don’t know how she’ll live out the rest of her life

It’s like living in a perpetual cliffhanger 

I don’t know how MY story ends 

I know how I WANT it to end

But MS came and put a big huge ‘WHAT IF’ across the page 

I don’t want to worry about the what if’s 

I don’t want to lose sleep over the what if’s 

It’s too many blank pages 

Some might say that’s the same for everyone

But that’s bullshit 

We know the most people will not lose their vision

Most people won’t be wheelchair bound 

(My two biggest fears)

I want to hit play on the audiobook 

And accept that the hero does have MS

But I want to hear that the hero wins

I need to hear that the hero 

gets his happily ever after

But what if he doesn’t?

What if I don’t?

So I’ve left it on pause

To be continued

It’s a picture of time frozen in place after which the hero and his love are together and he happens to have MS

And I’ll leave it there

An epic and everlasting ‘to be continued’

Nothing bad has happened yet

And everything is a possibility

That’s my happy ending