‘In The Depth of Winter, I Learned That There Was In Me An Invincible Summer’ Albert Camus

You know how every winter when it gets below zero

You think to yourself

‘This is the problem with Canadian winters, it just drops and you don’t have time to get accustomed to the cold temperatures.’

Well

That’s kinda like having MS

In one day

In one minute

In one nanosecond

You go from being just another random person

To be a person with Multiple Sclerosis

Maybe you lose functioning of your right hand

Or your lower half goes numb

Or you’re like me

And one day there’s a blurred spot in your vision

That no amount of lens cleaning

Will get rid of

The fucked up part

Is that with relapse remitting Multiple Sclerosis

Every relapse is kinda like reliving that first one all over again

Yeah sure you have your symptoms

But you’ve grown used to them

You’ve figured out a routine

A method of getting shit done

And then bang

Boom

Pow

Out of nowhere

Your leg stops working and you fall

Or your speech gets slurred and you sound intoxicated

Or you’re like me and you can’t stand to have your eyes open for another fucking second

So yeah

MS is kinda like that

And every time I think I’ve gotten the right equipment

And my coat is warm enough

And my snow tires are on

Then it changes in a flash

And now I’m standing outside in a T-shirt and it’s minus 30 Celsius weather

And I don’t remember a time when I ever felt warm enough

And I can’t remember what the sun’s gaze feels like directly on my face

And I certainly can’t recall what I was like before I turned into ice and shattered into a million pieces

Or who I was before MS blew into my life like a fucking snowstorm on steroids

…..

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‘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

‘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

‘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

‘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