WHY I’M A WARR;OR

I wanted to remind myself of something that I so often forget

So I got a tattoo of course

It’s not just a tattoo though

It’s so much more

It’s not just a word either or a semicolon Read more about Project Semicolon

It is a reminder to myself

That although life is hard

And some days it’s all just too much

And on those days, when it doesn’t seem worth it

Even then

I am strong

I am a survivor

I am a fighter

I do not give up

I will look down at my hand and through seeing that word emblazoned on my skin

I will remember who I am

And I will keep going because that’s just what I do

I may wallow in bed and stew in self pity and sadness

But

After awhile

Somehow

I pull myself out of bed

And I just live

And that’s a choice I consciously make every day

It may not seem like much to the vast majority of the world

But to my fellow warriors

I know you get it

I am the author of the story of my life

And I choose to not end on a sad note

I’m using that semicolon after a sentence from my bleakest blog

And I choose to keep fucking living

Because I’m a warrior

And warriors don’t stop fighting halfway through the battle

Warriors battle until the end

Sure they get scarred, beaten, bloody and bruised in the process

But they do not stop in the middle and surrender to the chaos

No one waves the white flag and accepts defeat

And warriors fight to the death

‘Fights will go on as long as they have to.’

That’s the 7th rule of Fight Club

I decided that was too long to get tattooed

So from this moment on I am a fucking warrior

I feel it in my blood

I’ve got the blood of warriors

Under the layers of skin

I knew it was there

I just had to find it

And I did

‘But black roses and Hail Mary’s can’t bring back what’s taken from me’

It’s with a heavy heart that I write this blog tonight

My doctor has assessed me and has determined that I’m not medically fit to work right now

So, I’m taking a leave

I’m not sure for how long

Starting now

Part of me thinks I can never return to a place that made me doubt myself so many times

Questioning my value

Questioning my worth

I don’t care what anyone says

It was personal

It still is

And I can’t pretend that doesn’t hurt

Part of me is terrified at the prospect of starting over

Again

I’ve never had to look for a job carrying the weight of an MS diagnosis on my back

I don’t know how I feel carrying that burden into a new environment

I’m scared to go from one unsupportive employer to another

Let’s be real shall we?

Who wants to hire someone who is likely to take a lot of sick days?

Even if said person is fucking stellar…

On the days they are there

From a production point of view

It just doesn’t make sense

In their terms

I will always be a liability

And not an asset

So where do I go?

Even with certification I don’t have enough letters behind my name to start up a private practice

I’ve never really learned to do anything else

But you know talk to youth

What will I do if I can’t do that?

I’m not so egocentric as to think there won’t be others who are more skilled at engaging youth than I

And I will be replaced

As if I was never even there

Maybe just a cautionary tale for new staff

I’ll just be another adult who abandoned the kids I currently work with

All that work building trust

Gone just like me

They’ll look back on their time with me with bitterness and a reminder to never let someone get too close

And I’ll carry that guilt with me

And let me tell you kid

I fucking get it

I trusted too

I placed faith in my employer

And I’ll look back on this time with bitterness and a reminder to never let anyone see your weaknesses

After all this and I can still relate to those kids so damn much

For them, I’m sorry

I don’t know what’s next

And that is probably why my heart is beating out of my chest and my stomach is warring against itself

What will I do while I’m home?

Will I get worse with nothing to occupy my needy brain?

Will I sit around in my pjs and anxiously pick at the thoughts reverberating in my brain?

It’s okay

And I think to myself over and over again,

Not every story gets a happy ending

Not even when I’m writing it

And especially not when it’s my story

And it’s okay

It’s gonna be okay…

I want to dance in the rain

I don’t want to be that person above that sits impatiently waiting for the huge storm to pass

With tired eyes and a listless body

I don’t want to be the person that misses out on the feelings of being alive you only get while dancing in the rain

With a heavy heart and a restless soul

I don’t want to be the person that sits and sits wondering when the storm will end

I do want to be the person that makes the best of what the storm is offering

I do want to be the person that can revel in magic of the strongest storms

I do want to be the person that can revel in the beauty of the sun coming out after a dark storm

But what do you do when your body and your mind and your soul are all operating at different levels of abilities?

Your body wants to sleep

Your mind wants to give up

And your soul vacillates between wanting to run and wanting to steal someone else’s happiness

Some days my body can’t go on

And I have to call in sick from life

And I have to sleep

And I have to hope that rest will be what my body is needing

Some days my mind’s suffering is so strong

And I need to escape from life

And I need to sleep

And I need to hope that I either won’t wake up or that I’ll wake up whole again? For the first time?

My favourite are the days when my soul is screaming the loudest that it can’t be ignored and I have no choice in the matter

And I just live

And I just laugh

And I just love

So fully

So heartily

So fucking strongly

That I hope it will be enough to keep me going

On the days when my body and my mind are all I can listen to

And I can’t remember what the rain drops felt like cooling my skin as I danced and danced under the magical stormy sky

I want to box it up

With tape and bubble wrap

And beautiful hopefulness

I can replace my broken heart with it

I can replace my damaged mind with it

And I can live the way my soul wants me to

Never simply waiting for the storm to pass

Always dancing to the chaos of the rain drops

The only way me soul expects me to…

‘Hoping I can clear the way By stepping through my shadow, Coming out the other side. Step into the shadow. Forty-six & 2 are just ahead of me.’

I’ve been feeling like I’m at the brink of a relapse for a month or so and it only seems to be intensifying

Staring down the precipice of the mother of all flare ups

I keep telling myself to just keep going

I’m trying to look ahead

I’m starting Round 2 of Lemtrada on May 7

I just need to get to that date

Without anything major happening

But these last few days have been rough

4 day long weekend and I feel like I’ve just worked a gruelling 60 hour work week and it hasn’t even begun

I wish I could explain the type of tired that MS causes

It’s not just brain tired or the kind of tired you have when you didn’t sleep well the night before

It’s the kind of fatigue where every single part of my body from my hair to my toes is begging to be allowed to just stay in bed

Taking a bath just wipes me out

And don’t even get me started on washing my hair

Along with this crazy stupid tired feeling, every single scratch, sore or bruise on my body is taking ridiculously long periods of time to heal

This is totally a Lemtrada thing

But it kinda puts things in perspective

It reminds me of all the little cells in my body working so hard to replenish themselves while still protecting and fighting for me

Against infection

Against illness

And I’m thinking no fucking kidding I’m so damn tired

My body is using all its energy to build my Lymphocyte count up

It’s not resting

It’s not relaxing

It’s working hard

Like me, I remind myself

It doesn’t matter what other people think

It doesn’t matter that I’m struggling to work four days a week as my employer keeps reminding me

Struggling to take one more step

Struggling to keep fighting against the invisible but very real forces of MS

Struggling to stay relevant in this world I barely seem to inhabit outside of my bedroom

Struggling to just keep being me

Before MS takes that from me too

Some people long for a place they’ve never been to

But not me

I’m nostalgic over the feelings that the places I’ve been to evoked

The memories of feelings those days evokes

I don’t know how to explain it in a any less of an abstract manner

I can only paint a picture of what my nostalgia allows to remember

All of this because I met with a legend of 1980s Toronto

Crazy Joe the drapery king

I sat and listened while he regaled me with vivid stories of all his years in the business

Usually I do anything to avoid the banal back and forth chatter of strangers

But that’s the very reason why I sat and listened so intently

It was anything but unoriginal or boring

And it reminded me of a different time

I miss when the Crazy Joes of the world were all around me

The ones with whom you could sit down and haggle good-naturedly

And reminisce about a Toronto that was messy and vibrant

Like my dads old fabric store in Chinatown or Crazy Joes drapery shop

Filled to the brim with fabrics and with treasure waiting to be unearthed

Bursting at the seam with stories and jokes and hard bargaining

A Toronto that doesn’t exist anymore

A Toronto that is now turning out mass produced everything

Processed and easily digestible to anyone (and everyone’s) sensitive palette

I miss the days of wandering through Graffiti Alley

With its dimly light hallways and shops smelling like burning incense

Or rifling through clothes in Black Market trying to find that perfect piece while the comforting smell of old clothes permeated my nostrils

If I close my eyes and concentrate I can conjure up those very same smells of vintage clothing, incense and enchantment of exploring unique places

I wish that everyone could be so lucky as to experience my Toronto that way

A Toronto that was just so real you were unsure if you were stunned by its beauty or shocked by its mess

And although I’m sure some of it has to do with the rose tinted glasses of youth

I am certain there was more to it than just exploring unchartered territory

Because I went to the same places over and over again

And it wasn’t the newness that left me enchanted

I don’t know

I can’t explain it

Maybe it was just magic

But all these years later

And I would do anything to get that feeling back

To wrap myself in those same emotions and luxuriate in them

But this time

I would not take it for granted

And I’d steal some of that magic to keep it with me when the memories just aren’t enough

A typical sick day in the life of a youth worker

I woke up after being text messaged and called by one of the youths in the class.

I’m half asleep and he hears it in my voice and asks if he woke me up. When I answer in the affirmative he asks if I’ll be at school.

When I say no he gets sucky that I won’t be at school today.

I tell him I’m glad he’s going to school though and I futilely try to explain that I’m sick but he’s already telling me the reason for his phone call.

There’s bad shit brewing between one of the boys and the only girl in the class.

My sleepy brain can only comprehend the words picture, Snapchat, cops, arrest. I sit up now but the kid’s taxi has come to take him to school.

Of course I’m wide awake now, so I attempt some damage control with a member of my team in the classroom.

It’s like a potential war zone in there and we gotta be prepared for catastrophes at any minute.

Okay he’s been forewarned, I feel better about my absence.

I can’t get back to sleep now because all I keep thinking is what the hell was that kid talking about this morning?

Wait did he say cops?

Shit I think he may have mentioned something about a charge.

I head downstairs I need coffee stat.

I finally hear back from the kid who fills me in on the entire story and all the gory details.

I won’t share, you’d thank me if you knew what I was leaving out.

The kid is talking to me from the class phone but he’s in the hallway. Even from home I tell him to lower his voice so he doesn’t get into trouble.

As he fills me in detail by excruciating detail I’m already planning how the problem solving will go.

I need to get in touch with my team. We gotta be preemptive in this. Gotta get ahead of the chaos.

Before I let him go, I make sure he’s got food at home.

He does but he gets distracted because the bell between classes has rung and he starts talking about all the cute shorties in the halls.

I remind him that I’m his youth worker not his homeboy.

He laughs and says he knows but I’m his closest (albeit) only youth worker.

He keeps talking about the shorty at the locker so I ask if he’s still trying to win back his girl, he doesn’t see the connection.

I tell him I’ll see him tomorrow.

I call my team one by one to fill them in.

Unlike you all, they aren’t exempt from hearing all the details.

I don’t even stumble over my words when I give them the inside scoop. They like me aren’t surprised by where this story has gone.

We predicted this outcome but no one really listened.

We tell each other that tomorrow we will detail with it all.

We work out a bit of game plan.

We hang up telling each other that tomorrow we will be there.

That we will do what we have to do to get through the morning classes and our afternoon meeting.

I hang up and I start thinking about my job and this little team of mine. And how we are all so isolated from our respective coworkers.

No one else really gets it like my team does.

It’s like some kind of platoon back from the war, you tell people the shit you’ve seen but they just don’t get it.

But your little team, well there’s a mutual understanding that if we don’t laugh at some of the shit that goes on, we’d go mad.

So anyway this triad of mine, they’ve got my back and me, theirs. And tomorrow we’ll suit up to face another day in a contained classroom with these kids that sometimes love us, sometimes hate us and sometimes just want us to shut the fuck up so they can go home.

And those sentiments, I am quite sure we have each muttered to ourselves on any given day.

Another day, another💲

11 months and an eternity

I have just received word from the MS one to one nurse that I have been medically cleared for Round 2 of Lemtrada!

I got this just as I was getting ready to go back for my monthly blood work after my failed attempt last week. And I survived it. ✊🏼

I will likely be doing treatment at the end of April. Its been a long hard year but I’m still here. I certainly never thought I was strong enough for something like this…but I did it, didn’t I?

And I can’t believe I’m saying this but I’m fucking ready so bring on round 2 motherfuckers!

Stay tuned,

A

I’ll leave the forgiveness up to your choice of god

A fellow MSer and blogger recently wrote about forgiveness (check it out here https://fightmsdaily.com/2018/03/17/forgiveness/) and it got me thinking

Forgiveness is such a complex topic

So often we tell ourselves and others that we have forgiven

But what does that even mean? And what does that open ourselves up to?

Is forgiveness merely acknowledging that the offending event occurred and then accepting it?

But what happens after the acceptance?

Do you simply ignore the feelings that come along with the event that precipitated this act of mercy?

Read back to what I just wrote

Ignore the feelings

You didn’t choose the event that occurred

However you choose to allow yourself to remain ignorant

You know what happened

You know what that person did or said

And yet you turn a blind eye to what happened

After you’ve let said person off the hook

So that persons guilty has been appeased

But you

The forgiver

Have now placed yourself in a very vulnerable situation

Like sitting with your back to a door

You’re the very fodder of know better stories we recount to our friends

Tsk tsk tsking

You’re the person in cautionary tales

Don’t be like so and so

X did that to her and she forgave them

Only giving them the opportunity to do it once again

Poor ignorant so and so

I’m not saying to never forgive

However be aware of what the motive is

Forgiveness is for the other person

You on the other hand

Are forever changed

And now you must proceed at your own risk

That first time

Is enough of a warning for me

I choose to be unmerciful

I choose to be angry or hurt

I choose to never allow someone the opportunity to come back for seconds

I choose myself over making you feel better

Fool me only once

I couldn’t bear the thought of sitting down to dinner when a youth told me he had nothing to eat at home

He said not to worry he could wait until tomorrow

Brampton is so out of the way for you, he said

I brought him fast food

A bandaid to temporarily cover a much bigger wound

He is 16 and living without the care of parents to monitor that he eats and goes to school

I find it miraculous that he even attends school most days

Even if it’s just for some cereal and a chat

If not for his circumstances,

This kid could have been on a sports team, getting good grades at school and eating a home cooked meal every night

Instead his father is dead and his mother has disappeared with the guy that tried to beat this kid up

Yeah sure he gets some money from the system

The system that is built to see him fail

After his rent is paid, he has two hundred and some odd dollars left for the month

And he’s 16 remember

So he doesn’t know how to budget

Hell, I don’t either

Sometimes he spends his money on stupid shit

Like we all do

This month is cheque hasn’t come in yet and he’s too proud to ask for help

Even from me

So I ask him if he’s eaten the night before and his answer is hesitant

But it’s always the same

There is no food in the house

So he eats at school

And then often he gets sick because his stomach isn’t used to the food

His doctor said his stomach has shrunk from malnutrition

This is where we live

This is Canada

This is where we are so proud to call home

Cheering on Olympian’s

While kids go to school with nothing in their stomach

And the whole system knows about it

In fact it always did

From children’s aid societies to educational institutions to income supports

This kid has been in the system since birth

He never had a chance did he?

Does it make you uncomfortable?

To think that tonight while you sit down with your kids…your partner, there’s a kid somewhere out there

Not too far from you in fact

Who is willing to go another night without food

So that his youth worker doesn’t have to drive out of her way

It should

Make you uncomfortable

It should make us all uncomfortable

There is an entire population of kids like this

Who are falling through the cracks of a society that only pretends to care for them anyway

This is unacceptable

This is not a society that I want to be a part of

We must do better

I want to be a part of a society that looks after its weakest and most vulnerable members

I do not want to throw them to the wolves and let them fend for themselves

Because the circumstances of their lives were unlucky

I want to be proud of a country that looks after youth who’s parents stopped caring for them a long time ago

I thought I was already part of a country like that

I was wrong

Oh Canada

It’s time you do better

A very wise friend said to me today ‘If the term ‘MS’ was replaced with ‘Cancer’ would the reaction be the same?’

It’s baffling how in a country with the highest rates of MS in the world

Approximately 100, 000 people living with it

I know it doesn’t seem like that many people in the grand scheme of things

And maybe that’s why

So few people understand the depth of its disease

And the suffering and difficulties that people with MS encounter daily

Family doctors don’t often have a lot of knowledge around MS and are often little help as nice as their intentions can be

So we are often left to educate them

Can you even fathom that?

How scary and lonely a road it is when you’re the one who has to educate your doctor?

I won’t even begin to describe how little the average person has an understanding of Multiple Sclerosis

Your spouse, your kids, your siblings, your friends

You have to be the one to explain to them all the little nuances of a disease that you yourself don’t even fully understand

Employers have zero understanding of a disease that is listed as a ‘disability’ under the Canadian Human Rights Code

Baffling

It’s brutal to think of all the times people have reminded me that ‘your employer is just doing their job’

So like that wise friend of mine said

Imagine this whole ordeal of mine with work

Picture it in your mind

The HR person

The supervisor

The member of management

And you

And change all the times I’ve said ‘MS’ and replace them with ‘Cancer’

You have ‘Cancer’

The person at the centre of this whole debacle is fighting against ‘Cancer’

How much does the situation change?

Does your employer still question your ‘capabilities’?

Blame you for an undefined negative impact your attendance has had on the program?

Does your employer harass you?

Send you multiple emails on your sick day?

Constantly whip out your attendance stats over the last two years as ammunition?

Two years that you’ve been battling ‘Cancer’?

You’re in a fight for your life with a disease that is taking over your body

You want to go to work

And do the job you love doing

And now you have to fight against the people that sign your paycheque

The very people that question your capabilities

Can you imagine this?

But wait

You just have Multiple Sclerosis

And now

No one cares anymore

After all

You don’t ‘look’ sick