‘At Times, Our Own Light Goes Out And Is Rekindled By A Spark From Another Person.’ Albert Schweitzer

Dear David (from Gerstein Crisis Centre)

It’s taken me four days to finally be able to compose this letter.

Not because I didn’t care to but because I became too emotional whenever I thought about your kindness towards me during my short stay at Gerstein.

You were the first person during my ordeal who did not see someone who was ‘weak’ and ‘needy’ but instead you saw someone who was tired of fighting so hard.

Someone who just needed a safe place to land.

You gave me that.

From the very minute I stood in front of the office doors as a crying hot mess, until we had talked long enough for me to enter a sleep-like.

state.

You threw me a lifeline.

You listened.

You talked.

You joked.

You laughed.

You related.

You made me feel heard and understood, and there are not simply enough words in the English language to convey my complete gratitude towards you for that.

So from one panic attack sufferer to another…

In words I know you’ll understand best.

I’ll just say:

I’d lay down in the snow with you, until your panic attack passes. 😊

Forever grateful,

Angela

PS if anyone knows him or how to get in touch with him let me know

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‘If I Could Start Again. I Would Keep Myself. I Would Find A Way.’ Trent Reznor aka GOD

I watched Birdbox the other night

With difficulty

Anyway

It’s a post apocalyptic film that is more unsettling than scary

The characters apparently ‘see’ something that is so troubling, distressing or terrifying that it makes them kill themselves instantaneously

The only way to prevent this

Is to be blindfolded effectively eliminating the chance to ‘see’ anything and that in and of itself is probably the scariest aspect of the film

Spoiler alert

The characters flee to a safe place which happens to be a home for the blind

Although in the book

This sanctuary is comprised of people who have voluntarily blinded themselves

Which I must say

Is a far creepier ending than the somewhat optimistic one the movie left us with

Regardless

This movie left me with a lot of thoughts

Two of my fears just happen to be the end of the world and going blind

😬

The former because of a weird experience I had with magic mushrooms when I was something like 16 years old

And the latter

Well that’s pretty self explanatory

What the movie gets so right though

Is capturing the fear of the unknown

Seeing the monsters always takes out some of the scare factor

Leaving them hidden

Allows us, as the watcher to assume the worst

Creating our own separate and distinct versions of the scariest creatures possible

And then this got me thinking about Multiple Sclerosis

Because these days, what doesn’t?

That very reason

The unknown is why people with MS tend to have high rates of anxiety and depression

When we are left to conjure up visions of our futures

We think of worst case scenarios

Each of us coming up with what would be the most horrific outcomes possible

Based on our individualized dreams, aspirations, loves, passions and etc

So how do we move forward?

When there is no way to accurately predict the future

Or even an adequate idea of what you want your future to look like

Even with scientific facts and doctors and MRIs

Several years ago, after a particularly bad period in my life filled with panic attacks

I attended a cognitive behavioural therapy group for panic and anxiety sufferers

One of the techniques they taught us to cope with our panic/anxiety

Was the use of exposures

Another was challenging negative self talk

At the time, I was struggling with my panic attacks occurring when I felt trapped

So I did my exposures in locked closets and on long subway rides through tunnels

I challenged all of the ‘I am going crazy’ and ‘I am a failure’ negative self talk

And replaced it with things like ‘I’m experiencing a panic attack, not going crazy’ and ‘having a panic attack does NOT make me a failure.’

The 14 week program was probably the biggest reason why my anxiety for the next several years was manageable

Until Multiple Sclerosis came along with its lesions and inflamed optic nerves and steroids

And literally upended my entire world

But what if I could use similar techniques to cope with MS?

Like my anxiety, it’s not going away and is a part of who I am

What if I imagined the worst case scenarios of MS? Like really felt and experienced what it would be like

And survived?

What if I challenged all of the painful thoughts that float in my head so many more times a day than I care to count?

Would it make this more bearable?

What if I accepted the unknown future and made a promise to myself that I could still bitch and hate and moan about it but ultimately roll with it and move on?

What if I accepted that I can’t finish my Bachelor of Social Work?

What if I accepted that I probably won’t be able to work full time?

What if I accepted that I will likely continue to struggle with my vision and the pain it brings?

What if I accepted that I will never have the life that I thought I would? That I hoped I would?

Would I then be able to finally end the chapter on all of that?

That chapter which has been left on a permanent ‘to be continued’

Which feels more like a permanent hostage situation

So what if I could erase that last line

And start a new fucking book

With all of my ‘defects’

With all of my broken pieces

With all of my changed dreams

Could I burn that old book filled with my past and all of my hopes for a future that isn’t really mine anymore?

Could I do it and just start over?

Not knowing what the ending will look like

Not knowing what will fill the table of contents

Knowing that a piece of me will burn with it

I have a tattoo I got years ago which reads ‘Tabula Rasa’ which translates into ‘Blank Slate’

I got that because I liked the idea of being able to start over

At any given time in our lives

To stop the story

And start something new

I think it’s been somewhat of a motto for me

When I didn’t like school or work

I called it

And started anew

So maybe that’s where I’ll start this new year with

My tabula rasa

My slightly broken

Slightly defected

Slightly damaged

Perfectly

Blank slate

‘I Regret Those Times When I’ve Chosen The Dark Side.’ -Jessica Lange

I always thought I was a ‘no regrets’ kind of person

Did the things I wanted to

Things I loved

With minimal regrets

I told myself that’s why I got tattoos

Why sometimes I could be impulsive

It now seems so childish to think you could live an entire life without regrets

It’s an impossibility

Sure maybe you took that trip you wanted

Or you told that person you loved them

But we each carry some type of regret over something we wish we could have done

Or just done differently

Sometimes it doesn’t take ones deathbed to look back over your life

Sometimes all it takes is a really restless sleepless night

And suddenly regrets pop up faster than you can search for the sleeping pills

So you’re stuck

Staring into space and reviewing 37 years of a life you’d thought you had lived regret-free

I wish I could wax poetic like Sinatra did

About admitting to having had regrets and yet having had too few to even mention

But it’s nearing 4 am and I fear I won’t be able to get some rest until I lay them out there

So here are some (in no particular order)

Regrets:

◦ Not getting my degree when I was younger

◦ Wasting time with forgettable people

◦ Not spending enough time with memorable people

◦ Not reading a book in every spare minute I had

◦ Giving up my job (this one haunts me)

◦ Selling a home that I felt instantly connected to

◦ Not telling off a former boss (or two)

◦ Some coworkers too

◦ Not speaking my mind when I knew I should have

◦ Declining certain invitations from the aforementioned memorable people

◦ Allowing some people to make me feel less than

◦ Every time I felt embarrassed for not knowing something

◦ Not showing or telling some people how much I care(d)

◦ All the time I spent wishing instead of doing

◦ Not relishing the enjoyment of watching a movie or tv show

◦ Not relishing the enjoyment of reading a book

◦ Not relishing every single peaceful moment

There are more

Of course

I’m sure I’ll add new ones to this list as well

Although I’d much rather say from this moment on, there would be none

But that would be a lie

And I’m too tired to pretend with myself

——-

I did fall asleep about two hours after writing this but it didn’t give me the relief I was craving

Instead I laid in bed crying about my job

Feeling sorry for myself

Feeling sorry for Joey

Feeling sorry that there are kids out there that I just know I can help

But that I won’t be able to

And that last one

Just fucking guts me

My tears now feel hot and painful as they roll down my face

My chest and stomach hurt

And I’m overcome with feelings of guilt, sorrow and that same fucking regrets

So it seems that exorcising your regrets isn’t the same as having none in the first place

Who knew? 😒

‘Weeds Are Flowers Too, Once You Get To Know Them.’ A.A. Milne

There are literally billions of people on this earth

What does it matter if there is one less?

He wondered to himself

As he left the office, late one rainy night

A car raced by him, splashing him

Making him shiver now that he was drenched in muddy rain water

He thought a split second too late

How he could have easily jumped in front of that asshole’s car

Ruining that fucker’s night

And effectively ending his own

Two birds

One stone

In this case,

Two strangers and one pretentious oversized car

He rolled his eyes

Not for the first time that day

What was it with him lately?

He was becoming the grumpiest 28 year old man that ever existed

He remembered what Catherine had said to him before she ended things with him two weeks ago

‘You’re miserable. Miserable with life, with me and with yourself.’

He rolled his eyes again

Shit

He had to stop doing that

It’s become too reflexive

She was right though

He was miserable

He felt so…dissatisfied with everything

His job, his friends and most definitely with her

He just been going through the motions with her

Really, he was surprised she hasn’t broken up with him months before

But he knew why she had stayed

They looked good together

On paper and on the outside looking in

They looked like the it couple

She with her long red hair and perfectly fake smile

And him with his dark good looks and shadowed eyes

She had loved how her girlfriends envied their relationship

She got off on the times they had told her how jealous they were that she had found ‘someone like him’

As if he was a real catch

This time he stopped himself from rolling his eyes

At first he didn’t mind the way she would play up their relationship in front of others

Hell, it was easy to just smile and keep his hand on her waist

But eventually

Even standing beside her

Grew exhausting

And he couldn’t wait until he dropped her off at home

Making excuses why he couldn’t stay the night

She’d started dropping hints that she was unhappy

Complaining that he never took her anywhere

Or that he acted too indifferent around her friends

Through it all

He couldn’t bring himself to bother to care even the slightest

So when she’d told him she was through with him being miserable

He cut the call, tossed his cell and slept like a baby that night

He wasn’t miserable per say

And yet here he was

Thinking of jumping in front of some asshole’s car

Out of equal parts spite and desperation

He went home that night and drank too much whiskey and passed out in front of the television

He woke up with a brutal hangover that would surely stick with him all day

After showering and forcing down a few Tylenol

He dressed and headed to the subway

Hoping it would be a quiet morning and that when he made it to work

He could just hide out in his office

The subway platform was packed and he felt that same old irritability starting to infiltrate every part of his whiskey soaked brain

The alcohol from last night hadn’t done much to put a damper on his chronically bad mood

He rolled his eyes

Fuck

That hurt

The subway sped into the station

Everyone surged forward

Social etiquette failed to exist in these self serving moments

He hung back

Not caring if he made it onto this train

Maybe he could wait for the next train

Maybe he’d jump in front of it

But there was room

So he moved forward and walked and without paying much attention

He sat in the first available seat and let his head fall back

A few stops later

He felt someone’s eyes on him

He could tell without even opening his own

He took a deep breath, opened his eyes and looked up

And locked eyes with a woman standing directly front of him

He felt a jolt through his entire body

Effectively waking him up

How had he missed her?

While she stared at him

He looked her over

Seeing her black clothing in stark contrast to her pale skin

Her ripped up jeans that led to old school sneakers that looked like they were well worn

He made his way back up and this time the shock of her electric blue hair caught his attention

It was so bright and stood out in the sea of conformity around them

He looked back at her face

And saw that she was looking at him with a strange expression on her face

He should have looked away

It was the polite thing to do

But then a whisper of a tattoo design peaked out on her outstretched arm that held the pole in front of her

Her jacket having ridden up her arm

He couldn’t tell what it was from the little he saw

But could tell it wrapped around her wrist and extended up into her jacket sleeve

He looked back at her

Her face filled with concern

He looked away from her and down at his phone in his hands

What was that look for?

Trying to focus on the note he was trying to type out on his phone

Struggling to find words that would explain everything without blaming anyone

He wouldn’t look up

He must have misread the expression on her face

He would not look up

Most people looked at him with intrigue

He looked up

And she was looking down at him

She still had that concerned look on her face

As if she knew something

Her bright eyes looked directly into his eyes

Searching for something

She shifted her eyes but looked back quickly

Imploringly

She opened her mouth to speak

And in a voice as captivating as her blue blue hair

She said

‘It’s gonna get better you know. One day, it won’t feel like this.’

What the fuck?

He struggled to find something to say

‘You’re gonna be okay’

She whispered

What was she talking about?

As they entered a tunnel, the lights cut out

It was pitch black

He started breathing shallowly

He felt pressure on his hand

Then a graze of his cheek

It felt cool like a salve on his overheated skin

He knew it was her

He could feel the intensity of her words touching him

Seeping inside his skin

Past the bone and muscle

And into his heart

Which started beating rapidly

It was like it was being kick started after a long period of inactivity

The lights came on suddenly

The subway ground to a halt

The doors opened

Beeping loudly

And she was gone

He stared down at his phone

The note application still open

All the words he’d written

Gone

All the apologies

Erased

All the explanations

Deleted

All that was left were 6 little words

That he hadn’t typed

I made it. So will you.

‘There Was A Time In My Life When I Thought I had Everything…Now I Struggle For Peace.’ Richard Pryor

This morning I read about Richard Pryor and having Multiple Sclerosis

Now I’m pissed off at myself

Because I allowed it to fuck with my head

All day

I kept seeing Richard Pryor towards the end of his life

In a wheelchair

His head sort of lolled forward

Frail and sickly

As if that image wasn’t sad enough

The word ‘invalid’ is stamped onto the backs of my eyelids

That’s how his widow referred to him in an interview after his death

When he became an invalid’

Something like that

That word taunted me all day

Haunted me

Invalid

It’s the opposite of valid

Which means

An idea or thought that is sensible

Or

Something that is important or serious enough that it is worth saying or doing

And that’s what got to me

Because at the end of his ‘battle’ with MS

He was reduced to a word

Irregardless of his willingness to fight and stay positive and be strong and every other trivial motivational one liner people throw at us

He was reduced to a word that literally meant he wasn’t important

That his life didn’t matter

And quite honestly

I cannot think of anything more heartbreaking

Than to be thought of

As nothing more than just inconsequential

‘Every Day Is Exactly The Same.’ NIN

Sarah laid in bed for what felt like the hundredth day

She hadn’t been feeling well

And there wasn’t anyone around to distract her

Oh sure

Some days friends or family would call her or text her

But it was mostly out of obligation

Anyway, she didn’t want to be a bother

So she kept to herself most of the time

Although today she wondered

If it were more to protect them or herself

Sarah tried to distract herself with game apps on her phone

Matching colours and finding candy

Eventually she grew bored of them

She fell back on the bed and stared up at the white ceiling

It was strikingly white and in dark contrast to her blackout drapes covering her windows

There was a thin crack in the middle of the ceiling

How had she never noticed that before?

The more she stared at the crack

The longer it seemed to get

The longer it got

The more she wondered what would happen if the ceiling cracked wide open and collapsed on her

She laughed out loud

Picturing first responders rushing to the scene

And finding her still in her Hello Kitty pyjamas at 3 in the afternoon

What would they think about her?

Would they wonder why a 45 year old woman was home in the middle of the afternoon

In bed and wearing pyjamas of a cartoon cat

Staring up at the ceiling

With her tightly drawn blackout drapes to protect her from the outside

Or the outside from her

But her ceiling wide open

With the sun and the sky and everything else staring her down

Would they too see the irony in any of it?

With that in mind

Sarah finally got out of bed and walked to the window

And opened her blackout drapes wide

If there was going to be a great collapsing ceiling tragedy

She didn’t want it to include an ironic anecdote that the paramedics told their friends

Absolutely not

She thought resolutely

For this

She would risk inviting the outside world in

Even if it meant there was now only a thin fragile glass barrier between her and the outside world

She shuddered and went back to bed

And stared up at the crack in her ceiling

‘No One Here Gets Out Alive.’ The Lizard King

Each of us knows the truth behind those words

We know life is fleeting

Have seen it with our own eyes

Lives gone too fast

Lives taken too young

Life is nothing but a numbers game

By a certain age

We all understand this

And even still

We waste so much time

Time consumed by what others think of us

Time devoured by people who won’t stick around in the end

Time exhausted from living over and over again in the past

Time eradicated by worrying about the future

A future that might never come

Maybe it’s human nature

To waste

We waste food and the earths resources

So why wouldn’t we waste something as precious as time

It’s human nature not to know the true value of something

Until it’s gone

Or about to be gone

How selfish is that?

As if simply because we want it

It will last forever

Making it all the more devastating

When we begin to realize we’re running out of it

I understand that quote now

That youth is wasted on the young

Because they won’t be able to appreciate the beauty of being young and free

Until that too is gone

And like all good things

It’s over far too fast

And once it’s only once it’s really gone

That you truly understand why it even matters