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

Advertisements

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

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

The needle and the damage done

Hit a wall

Monthly blood work time yesterday

This is never a fun time

My veins play hide and seek when it’s time

Literally

It’s a thing

Look it up

But yesterday was a whole new bag of tricks

They think my veins in hands have collapsed and are clotting Collapsing veins

Like a fuckin junkie

So they couldn’t finish the testing

I’ve gotta go back in a few days

I felt and still feel frustrated

My hands are bruised up and sore as hell

Whatever that’ll heal in time

I know this

But

I feel discouraged

I just keep thinking

Another four years of this

What the fuck was I thinking?

‘I’m a spokesman for myself. It just so happens that there’s a bunch of people that are concerned with what I have to say. I find that frightening at times because I’m just as confused as most people. I don’t have the answers for anything.’-KC

I feel all this pressure on me to be this inspirational and motivating figure because I have MS

I didn’t choose to have this

I woke up one day and my eye was blurry

That’s it

Seriously

If I had a choice

Obviously I would not choose MS

I’m not going to give you some bullshit story that MS has made me realize so much and that I’m grateful and blah blah blah

This isn’t some made for tv special

This isn’t a televised charity fundraiser

And I am not the fucking face of hope

I am a human being

Who happened to have a lot of shitty things happen to my body and brain

I could sit here and wax poetic about how although I was dealt a shitty hand, I’m going to persevere and make life all butterflies and rainbows

But I’m not that person

I won’t pretend that I am either

So that you dear reader feel comforted

So that you dear reader are inspired by my bravery

So that you dear reader can tell your friends how amazing that woman with MS is for never giving up

My job isn’t to try to be the main character in the feel good story of the day that you pass on to your work colleagues

I’m not sorry that my honesty makes you uncomfortable

I’m unapologetic that my truthfulness is too depressing for your delicate palette to digest

I have MS and mental illness

I did not choose them

And they both bring with them burdens that I can’t even begin to express

But I have a choice in this

And my choice is to speak my mind

To lay my honest feelings out there for the world to bear witness to

Or to ignore

In a world that has made so many choices for me

It is my choice on how I wish to exist in this world

And I choose to exist on my terms

Despite what people might think

I do see the beauty in life and in the world

But the beauty I see is in the flaws

The fault lines of the world

And the imperfections in people

Beauty wasn’t meant to be enjoyed by the masses

That is neutrality

And neutral is bland and boring

My world is not just shades of black and grey

I see colours

I vacillate between them being so vivid it hurts my eyes and my heart and my breath catches in my lungs

And other times they are so dimmed that I long to remember the way a certain colour is reflected in the light

I’m sure I could find a way to stomach writing platitudes in every blog about the wonderful things MS has given me

I’m sure that might even get me noticed in the blogosphere

And I might not be able to predict the course of my illness

Or if my anxiety and depression will worsen

But I know with unequivocal certainty

That I would rather die a thousand deaths

Then live for even a second pretending that MS and mental illness are really blessings in disguise

Let’s not make martyrs out of ourselves

I’m not suffering for the cause

No

Fuck that

I want to wake up one day as a person who does not have anxiety, depression and MS

The person I’ve only ever been in my dreams