‘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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‘There Are Moments That Mark Your Life. Moments When You Realize Nothing Will Ever Be The Same. And Time Is Divided Into Two Parts – Before This and After This.’ Nicholas Kazan (Fallen)

I had an a-ha moment today in my support group. We were on the first step which is:
1. We admitted to ourselves that we are powerless over our disease. That our lives had become unmanageable.
I got to go last…which meant I got to listen to 3 MS veterans. All having been diagnosed more than 15 years ago.
One spoke of feeling comfortable in being alone on Xmas day.
Someone else spoke of being okay with their sometimes self-imposed isolation. Another spoke of being aware of their limitations, without being self-deprecating.
I sat back and listened.
One in a wheelchair.
One in a scooter.
One with cognitive symptoms.
And I felt envious.
Of them.
Me,with my mostly mobile body.
Me, with my mostly cognitive functioning brain.
I felt jealous of each of them.
I felt jealous of the comfort and grace each of them had come to possess upon accepting their illness.
I sat there and reflected over the last 6 years since diagnosis.
The ups and so so many downs.
The relapses.
The symptoms.
The steroids.
Treatments.
Injections.
Sleepless nights.
Crying fits.
Raging fits.
Anxiety.
So much fucking anxiety.
All of it, having led me to this moment.
Waiting for my turn to talk in a 12 step support group.
Their eyes looked to me.
My turn.
I looked around the table.
Less than a year ago, they were nothing more than three strangers. People I would have passed on the street, without a second glance.
Now we share this inexplicable bond.
This illness we all have.
Referred to often as the ‘snowflake’ disease, since symptoms vary so much from person to person.
These three people who now know more about my feelings and thoughts than most of the people in my more immediate circle. These strangers not so different from this lifelong outsider, after all.
I told them I thought that I had accepted having MS.
6 years ago. I heard the words coming out of my Doctor’s mouth and thought to myself ‘okay….so now I have MS.’
I thought that was enough.
I thought that meant I had accepted it.
But it wasn’t until that very minute that I realized, I would never be able to accept MS, until I had also accepted the negative impact its had on my life.
That meant accepting the change in my job status.
The permanent damage to my eyes.
The toll all of it has taken on my already fragile mental state.
Taking all of that in…and still being able to say that while I won’t succumb to it, I have come to terms with having MS in my life. That I’m OKAY with it.
I’m not there…
Not even close.
But I found hope in looking around me.
Which for someone as chronically hopeless as myself, is a fucking lifeline.

‘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

‘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.

‘In 3 Words I Can Sum Up Everything I’ve Learned About Life: It Goes On.’ R. Frost

Multiple Sclerosis

I didn’t even know what it was until after I was diagnosed

I had heard about it

Montell Jordan

How sad

And all that

But I had no clue what it actually was

It’s amazing what you can learn when you have no choice

Multiple Sclerosis is an autoimmune disease of the central nervous system

The central nervous system is comprised of the brain and spinal cord

An autoimmune disease is when your immune system mistakenly attacks itself

There is no definitive answer on why someone’s immune system would turn on itself

Nor is there a definitive answer as to what causes MS

There is obviously speculation to both

Some people speculate that the environment or genetics could be the cause

MS attacks myelin

Myelin is the protective coating of nerves which causes inflammation and can be damaged

Those damaged areas are lesions on the brain or spinal cord

Myelin is responsible for the transmission of nerve impulses

Without myelin doing it’s job

Communication is damaged between nerve cells

Therefore the body doesn’t get instructions to perform necessary functions like walking or seeing

It sounds so complicated and scientific on paper

But all it really means

Is that your body stops working in the ways it’s supposed to

It’s stops listening to basic control functions that it once took for granted and did without thought

MS triggers a state of uncertainty

In being diagnosed

You have an answer as to what is happening

But you have no clue as to why it is happening

Nor do you have any idea as to what to expect later today, tomorrow or in the far off future

You hear stories and see campaigns which declare Canada as having one of the highest rates of MS in the world

But you have no knowledge as to why that it is

You are constantly told that the brightest and most successful people are looking for cures, treatments and answers

But it has no bearing on your daily life

What you do learn very quickly

And understand with absolute certainty

Is that your life will never be the same again

Your life goes from reading and working and going out and travelling

To daily injections, sharp eye pain, bone weary fatigue and a total lack of outside understanding

A lifetime of not knowing

In the blink of an eye

Angela, I’m sorry…you have MS

And the words that were already printed in the book of your life

Disappear and all that’s left are three little words

Life

Goes

On

And I can’t think of another sentence that conjures up feelings of hope and complete terror

‘I Dream My Painting And Then I Paint My Dream.’ Van Gogh

So I did something today

That I hadn’t been able to previously accomplish

I finished an audiobook

No big deal there

That happens very frequently

I should clarify

I finished an audiobook where the main male character has Multiple Sclerosis

I know it might not seem monumental to you

There was no forewarning about his diagnosis in the description of the book

Because in all likelihood

I wouldn’t have given it a listen

I hate to admit that in the past I’d been unable to continue to listen when I got to the point in the story where a character was revealed to have MS

In that instance

I stopped cold turkey

Right then and there

This time around

I had two hours left in an eight hour book

It wouldn’t have been strange for me to not finish listening

There have been many times

Where the romance audiobook character said the word ‘gosh’ too many times

And with only minutes left

I just couldn’t do it and ended that listen lightening fast

Anyway this time

I got to the part where it is revealed the character has MS

I paused the audiobook for a minute

Maybe more

I called Joey to come into the room

Explained the situation

Made him listen to the line

And then

I did something unlike myself

I kept listening

There may have been some tears

The female characters

Not my own

Well

A little my own

But whatever

More importantly

The story kept going

It didn’t end there

With him in a hospital

Talking medical shit with a doctor

The story continued for two hours

Two hours where I continued to listen

I could have stopped

Deleted it

Found something else

And yet I listened to the whole story

Sometimes with tears

Sometimes not

I kept going

I listened until the very last second

I listened until the credits rolled and the audio went silent

And honestly

I can’t think of anything more fucking poignant

‘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