‘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.

‘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.

‘Time And Health Are Two Precious Assets That We Don’t Recognize And Appreciate Until They Have Been Depleted.’ Dennis Waitley

And I thought to myself

Not for the first time

Just how much

Health really is wasted on the healthy

Since they don’t have a fucking clue

How lucky they are

I wish I could say that I’m not jealous

I’m happy for them

But those would be nothing but lies wrapped in nice sentiments

The truth is

I’m jealous of every person whose body isn’t attacking itself

I’m bitter towards every person who doesn’t know the fear of not knowing if tomorrow they’ll wake up paralyzed or blind

I’m resentful of everyone who doesn’t appreciate their healthy mind and bodies

I fall asleep sometimes

With the unfairness of it all sitting like a weight on my chest

Making my breathing laboured and coming out more like puffs of fire

I wake up some mornings and before I open my eyes

I wonder if this is the day I won’t be able to see anything

I kick myself for not appreciating the last things I saw before going to bed

For not staying awake longer

Taking in as much as my eyes would let me

I can’t pretend there aren’t moments where these thoughts don’t consume me

Sometimes the moments are fleeting

But I catch myself before I get swept away

And sometimes it’s too damn late for me to realize a moment has stretched into a day

And a day into a week

And the only way I’ve noticed how consumed I’ve become

Is by looking at a calendar

And not being able to remember anything distinct about all of the days gone by

But I know they must have passed because I’ve drawn a big red X on them

Like I’m marking them off

Counting them down

Checking them off

For what?

I’m still not sure

Maybe just to prove I was here

‘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

‘Pride Comes Before The Fall’

I like spooky things like Halloween in Salem

And even though I don’t really consider myself a ‘believer’, I like going to psychics and mediums

While in Salem for Halloween and on a boat cruise, I had a free reading done

I sat down and after shaking hands and making introductions

He motioned to a pin on my jacket of a broken heart stitched together

He said it represented me well

I’d been broken hearted

Not by love in the traditional sense

But by the world

I laughed a little nervously and my curiosity was piqued

It was a short reading and I can’t stop thinking about something he said during it

He told me that I always felt like I didn’t fit in

He said that maybe that was okay though

Because some people aren’t meant to fit in

Some people are meant to make a difference

He said that in my work I was trying to make a difference for people

That I’m a healer and a powerful empath

I can’t stop tracing those words in my mind

I continue to think about it and where that leaves me

Which is apparently on long term disability (after finally being accepted a month ago)

In that time period, I feel like I should be doing something

Only I don’t know what

This isn’t new though

I’ve never been someone who had a clear path or knew what they wanted to do from a young age

I went to several different schools and tried on different hats

The only one that fit reasonably well was the last one I wore

Working with youth

I knew even though

That it wasn’t the perfect fit

The school restrictions, the politics, the employer

But it was so close

And then in the blink of an eye

Like things in my life so often do

It didn’t feel right anymore

My direction was blurred

Just like my vision

I only knew I couldn’t go on like that

And it had nothing to do with the youth

It had everything to do with how others made me feel like I wasn’t doing good enough

My pride was so deeply wounded

That I can feel it

Like rubbing salt on fresh wounds

Just thinking about my job, those kids, that work, those people, that job

And I feel it all over again

Every single burn

All the pain

Pride is funny like that

It’s with you during some of your happiest moments and accomplishments

It can carry you through some of the toughest times

And then bury you just as easily

‘What Matters Most Is How Well You Walk Through The Fire.’ Charles Bukowski

Sometimes life just seems so hard

I know

That seems so angst-y

It just that it seems filled with pain and sadness and so much heartache

That sometimes life just doesn’t seem worth it

After all what’s the big reward?

It’s supposed to be in life itself

Isn’t it?

But what if, it’s not?

What if you don’t reap the rewards?

Sometimes life with MS and anxiety and depression feels like this

It feels like all effort

And no great pay off

Maybe it’s just me

I don’t know

Maybe I can’t find happiness in the little things

Or maybe the happiness just isn’t enough

It doesn’t matter

What does matter?

‘What matters most is how well you walk through the fire.’

It matters if you can find the strength to persevere in spite of it all

It matters if you can find the courage to keep going when it feels like there so many more bad days than good

You matter even when you feel like you don’t

And that’s probably the hardest thing to remember

Especially when you keep trying to douse the flames from burning up around you

Instead of walking through them

(A picture of happier days 😏)