‘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

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‘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

‘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

‘There Is More Evil In The Least Sin Than In The Greatest Affliction.’ T. Brooks

Some days my damaged eyes feel as weary as my burdened soul

Some days it feels like I carry the world on shoulders that are tensed with anxious thinking

Some days the world feels as chaotic and unpredictable as the disease discarding lesions on my brain

Some days I feel so jittery that my nerves feel like they’re fraying and uncovering more than just damaged myelin

Some nights I lay awake not able to sleep even though my days are consumed by an overwhelming fatigue

Some nights it feels like electricity is coursing through my limbs and extremities

Some nights I feel like not waking up in the morning still wouldn’t be enough to get rid of all that’s wrong

Sometimes there are moments when I think that even a lifetime isn’t enough time

Time to shed all the broken and irreparable pieces of me

Time to start over

Time to begin again

Or maybe a lifetime is all it takes

To be gifted a new body and mind

And leave all that affliction behind

In the past

Where it belongs

Buried and covered

In someone else’s grave

‘Nobody Told Me There’d Be Days Like These.’ John Lennon

There’s a song by John Lennon

It’s called ‘Nobody Told Me’

I can’t even begin to count how many times I’ve used the lyrics to update my Facebook status

Or to caption my Instagram pictures

And most definitely whispered under my breath

It’s not particularly mind blowing

But it pretty much sums up an average day in my life

In the life of someone with mental illness

In the life of someone with a chronic and incurable illness

I wonder sometimes

If someone had told me that days like this could happen

Would it have prepared me better

Would it have armed me with the tools I need to make it through that day

Would it have given me the weapons I need to face another day

Part of me thinks so

Maybe Lennon was on to something when he lamented that he wasn’t warned for what reality would become

Because that’s the thing isn’t it?

Once upon a time in his life

In my life

Maybe even in yours

It wasn’t this way

Maybe yesterday

Maybe a long long time ago

It was different

Maybe if someone had told me

I would have appreciated it then

Or maybe I could have preserved it better

Like a photograph that keeps life frozen in time

But now I’m stuck in the present

Facing each day blind

And now I’m here

On nights like these

That nobody told me about

With only the song lyrics of a long dead rockstar to keep me company

‘Nobody told me there’d be days like these…

Strange days indeed’

“What if all that keeps you trapped in that invisible boxing ring is the belief that you have to keep fighting in order to win?… What will happen to your opponent if he suddenly has nobody who will fight him?” Courtney Perry

Once upon a time

I started having panic attacks

I hated them so vehemently

That I swore to fight them at all costs

I swore to do whatever I had to to to win this battle

So I trained

And so I won many battles

But eventually I grew tired

I grew tired of always fighting

Being on guard 24/7 was crippling

And life was becoming one giant battlefield

One day

The panic attacks came back

They had grown stronger than before

I shrank my world to fit in my condo

Hoping if I stayed off the battlefield

The panic attacks would see I was no longer in the fight

They’d turn around and walk away

And leave me alone

Instead, they found me there

In my safe place

Banging on my doors and windows

Rattling me to my very core

I was so afraid

I hid in the darkness and shrank into the corner

Days passed this way

I could hear them getting louder and louder

And just when my door sounded like it was going to break apart

And my mind was going to snap into a million pieces

I sprang to my feet

I frantically threw open the front door

And yelled for them to fucking do their worst

I screamed that I wasn’t afraid of them

I didn’t like them

They knew that

I never would

But I had grown so tired of living in a constant state of fear

That I realized I’d rather come face to face with them

And if they destroyed me

Well

Then at least it would be over

The funny thing was

That when I opened the door

No one was there

The hall was eerily silent

I was stunned

I looked around

Sure that they were just hiding

To catch me at my most vulnerable

I looked in corners and under crawl spaces

Still I was alone

I was bewildered and shaken

I sank to my knees in the quiet hallway

And I started to cry

Big fat tears rolled down my face

I wasn’t crying because I was afraid

Not this time

This time was different

I was crying because all of this time

All of these years

I had expended so much energy and strength

I had used up so much of myself

When all I had ever needed to do

Was to open that fucking door

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