‘Sippin on Chemical Cocktails. Alive to the Universe. Dead to the World.’ Allen Ginsberg

Welcome to today

A toxic wasteland

Once upon a time, beautiful skies now covered in thick layers of smog

Politicians waxing poetic about illegal aliens, poverty and guns

People lining up with arms outstretched hoping to get a handful of something

Plastic celebrities famous for nothing more than their celebdom, and no one will care in a hundred years

Youth huddled in groups with silence stretched out between them the only sound the tap tap tapping of their fingers on their phones

Children losing their chance at an idyllic childhood to YouTube or Snapchat or or or

Crying babies born brought into a world that gives them no other choice but to cry from the beginning

Adults consumed with the need to consume more of everything

The elderly forgotten and dismissed as foolish because they don’t know how to exist in this crazy messed up universe we’ve created

People all around walking so aimlessly, more intrigued with their handheld devices than the meteor showers of chaos happening all around them

Roads and lanes and cities and towns bursting at the seams with people and need and urgency for hope

Losing sight of what’s important

Even with reminders from the enlightened that we’re destroying the earth, humanity, kindness and losing everything pure in this world

Put down your phone

Look around

Blink

And

Before you know it

It’s already gone

And

You can’t remember a time

Before

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‘And sometimes, against all odds, against all logic, we still hope.’

Do you ever think to yourself ‘I just need to catch one break, and then I’ll be okay’’?

The odds seem favourable

Out of the 365 days of the year

How hard could it be to find one good day that will make up for all the rest?

It doesn’t even need to be an entire day

Even one good thing during one day would make everything seem manageable

One day to make the other 364 days worth it

The problem isn’t in the numbers

The problem is that one thing always seems to be just out of reach

It’s illusive

Yet

Still

Somehow

There’s hope

Hoping every night before sleep

That tomorrow will be different

Hopeful that it will be the one day out of the 365 that will make all of this worth it

And so every night before you close your eyes

You take that piece of hope

You immerse yourself in it

You wrap your wish in hope

Tie it neatly with a big bow

And you wish so hard that when you wake

The new day won’t be anything like the last 13,140 days

and counting

“We looked for the easiest way out: a separate reality.” ― Paulo Coelho, Veronika Decides to Die

My hair is falling out

My eyes hurt

And I’m trying to remind myself why I did this fucking treatment

This weekend passed by in fits of long naps

When I’ve been awake, I feel tired and irritated

This is the stuff no one tells you about chronic illness and the shit you do to your body to ‘get better’

I’m almost two months post Round 2

I did my blood work

With much greater ease

The first month of the next five years

There’s so many thoughts rumbling around in my head

And even trying to make sense of them in writing isn’t doing the trick

I went to the optometrist and while my vision hasn’t gotten worse she was concerned over my eye pressure and appearance of optic nerve

She said it didn’t have anything to do with my optic neuritis episodes

Glaucoma?

Being sent to ophthalmologist for more tests

I went to the group again on Friday

The topic was the difficulty in decision making

Funny since I’m struggling with this long term disability decision

I came home feeling understood

Something that’s always evaded me

It was a wonderful feeling

That I’m trying to hold onto

But it’s just out of my grip

Like the Banksy art on my arm

I’m reaching for it but it’s just passed my reach

MS and the world around me

I went to my first MS support group on Friday

It took me five years after being diagnosed to take the plunge

I was always hesitant to go

I was afraid of what my future might look like

It was a small group of 8 people

With different types of MS and in different stages of the disease

3 in the group had wheelchairs

A few had canes

Everyone welcomed me right away

The topic was ‘Why I’m glad I have MS’

I winced

Ugh this is gonna be brutal

We went around the table

Many described how having MS forced them to slow down

To reevaluate their life and priorities

To focus on the important and forget the small stuff

No one ignored the hard days

One described it as ‘the rabbit hole’

And seeing it open up

But not plunging into the darkness

They talked about fear, sadness,pain, love and hope

I sat quietly until my turn

And I spoke honestly

I told them I couldn’t find anything to feel glad of

Yet

And I couldn’t imagine a time when I would

But I was grateful for the resource of a group such as theirs

I explained to them how I thought I’d finally accepted having MS

Only to realize that I only was acknowledging having it

Acceptance was still a long way off

It still is

I talked about how I was going through a particularly dark time

I told them I was having difficulty reconciling my current life with what I thought my life would look like at 36 years old

I looked around

They were nodding their heads

I didn’t see the same sympathy that I see so often in my friends and families eyes

I saw real understanding

The kind that only someone who’s been there can provide

And I realized it’s been five long years since diagnosis and I’ve been doing this all wrong

I’d chosen to go at this alone

Seeing other 36 year olds living their life

Other 36 years who don’t have MS

And comparing my life to theirs

And coming up short every single time

The people in this group weren’t sad and pathetic

They were living their lives

Enjoying their lives

Maybe they adapted their lives to work around having MS

Maybe their life plans changed

But they didn’t stop living

That’s true acceptance

After I left

I felt a sense of relief

At having done something I’d put off for so long

I also felt hopeful

For the first time in a very long time

Not hopeful for a cure

Or that tomorrow I’d wake up without MS

But that one day I too would be able to finally accept that I have MS

With all that it includes and with wherever it might lead me

And I’ll be okay

I’m not there

Yet

Not even close

But I want to be…

It only looks hopeless when you can’t see an alternative

No matter how hard you try

Even trying on a different perspective for size

Still the hopelessness persists

This is what scares me

I remember during the height of my worst moments with anxiety

Thinking to myself that the rest of my life would be filled with days of panic attacks and days where I waited for the panic to attack

It would never end

That thought still haunts me

Part of the crux of my anxiety is the feeling of being trapped

Not necessarily in the physical sense of the word

But even where situations feel like I cannot control the outcome

Where I cannot extricate myself

Like a panic attack itself

Or being drunk

Or high

Apparently my depression isn’t much different

The darkest cloud hovers when I cannot see a way out of an empty thought, moment or situation

What starts as a fleeting worry morphs

And I begin to think in terms of ‘always’ and ‘forever’

It’s frightening because it feels like even the sanest part of your brain cannot conjure up a tidbit of hope to tide you over

Not even a little breadcrumb for you to follow towards hope

Life is funny that way

It gives you this stadium of life

And throws these curveballs at you

But it doesn’t provide you with the bat, the helmet or protective gear

Sometimes I scratch my head and wonder how some people win

I question the authenticity

Maybe they cheated

And everyone knows

That the games been rigged in their favour

And I’m just not in on the secret

‘I don’t know who I am or maybe I do know who I am and I just don’t want to be her anymore.’ -G.F

Feeling a little lost

I know

Nothing new

Since stopping the Paxil project

I feel like I have little purpose

I’m still off of work

Which basically means

I’m sitting on my ass doing a whole lot of nothing

My return to my role in the Section program is still unclear

Work has had my medical documentation for over a month but I haven’t heard anything on that end

Not a ‘get well soon’

Or ‘are you still alive?’

All that aside the million dollar question is what will happen if and when I return

I don’t know if they think I’m capable of returning to my position

They have the authority to move me into a different position

That’s weird isn’t it?

I’ve been made aware that it’s within their legal rights

But I no longer have a say where I work

Somewhere along the way

I no longer have control over a huge part of my life (my career)

I don’t know if it’s MS that I owe that to

Or my ongoing struggles with mental illness

Or an amalgamation of all the above

Each taking a little piece of my ability to be a ‘good’ employee

Of course there’s an option to leave this job and look elsewhere

But I would only be kidding myself

If I were to say that it would be different in another job

I mean

At first it would be

I do well in interviews

Maybe they’d hire me

Things would go well

I’d exceed their expectations

And then

The sick time would start accruing

And instead of them looking at me like I’m some slacker

I’ll explain my illnesses

And then

They’ll understand

For months or maybe even a year

But eventually

The rhetoric remains the same

Angela is an excellent worker…when she’s here’

Call me pessimistic

But I think it would make a memorable epitaph on my grave

The Cowardly Lion’s Great Lie

The cowardly lion

Wanted nothing more than courage that he didn’t believe he possessed

He joined a rag tag group of travellers

Searching for a magical cure for his allusive cowardice

Together he and his fellow travellers

Fought through witches and flying monkeys and haunted forests

Hoping and fighting to find the one thing he wanted more than anything

In the end, the lion learns that he always had courage

He just needed to find it within himself

Like the scarecrow and his brain

The tin man and his heart

It was always right there within themselves

The story ends and they all happily walk down the yellow brick road of life

Each of them happy and content they’ve found the things they’ve so long desired

The audience smile and titter amongst one another

That this is a story from real life

One just needs to believe in themselves

But I wonder what would have happened

If the cowardly lion learned he would never find his courage?

This mysterious thing was never to be attained

The courage he yearned for would continue to evade him

Mocking him cruelly

The lion that should be so brave and strong

Is nothing but a great big disappointing coward

Just like when we disappointedly learn that the wizard is nothing more than a regular human pretending to be something he will never be

The lion will be forced to continue to wear his warrior costume

The whole world watching

All the while the lion knowing he is nothing but a fraud

The scared cowardly lion just waiting for the entire world to find out what he’s always known

That he can dress it up

And make it look real believable on the outside

But if there’s nothing inside him

The facade will all fall apart

And he’ll always be remembered as that scared cowardly lion

Who couldn’t, no matter how much he wanted, live up to what he was meant to be

To what he always wanted to be

The courageous lion that doesn’t exist