‘Deep in the heart of my soul, I’ll feel so glad to go.’ The Smiths

Disclaimer: I write this blog as a form of release. It’s cathartic. Please don’t tell me my feelings are wrong. This isn’t the place for that.

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What if this is as good as it gets

I keep replaying that in my mind

My heart doesn’t want it to be true

It lies to me

It tells me that it’s gotta get better than this

It weaves stories of a made up future that doesn’t include pain and sadness

And most certainly doesn’t include a disease as fucked up as Multiple Sclerosis

It knows just what to lure me with

It doesn’t bother with lies about riches and fame and fortune

My heart shows me a future that is serene

Days filled with thoughts that don’t make you feel like you’re going crazy

Nights slept through instead of worrying obsessively about what will happen next

It shows me a calm that I have never known in this world

It shows me a future that I instinctually know will never be mine

My mind is always there to remind me of what I already know

The heart doesn’t listen

Like they say

The heart wants what it wants

And so that traitor continues to beat

Thump thump thump

Sometimes the pounding is so loud and it reverberates through my entire body

Callously letting me know

That it’s still there

My mind always racing

To catch up to the beats of my heart

Ensuring it’s repetitive voice isn’t lost

So I continue

Another day filled with my heart and mind at war

Another day spent fighting and trying to drown out the noise

That nobody but me can ever hear

Still I wonder if it’s easier

To fight battles that exist outside the walls of your own skin and bones

So now I imagine a future

Without the lies of harmony and calm

With an enemy on the outside

My heart and mind finally calling a truce

And letting me Rest In Peace

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‘Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.’ Maya Angelou

I was on the phone with my caseworker from my private insurance who will be in charging of making a decision in my claim for Long Term Disability

We were on the phone for over an hour

An hour in which I often felt I had to defend my illnesses

An hour in which I often felt the need to justify my request

An hour in which I stumbled over words that would have once come so easily to me

An hour in which my body ached and my eyes felt tired

I’m stuck between an employer who tells me I’m not capable and an insurer who tells me I’m not sick enough

I’m stuck between wanting to work and wanting to be off

I’m stuck between wanting to fight and wanting it all to just be over

So here I sit

Yet again waiting for someone else to decide my fate

While I wait

With my heart in my throat

With my stomach in knots

Without hope for a better tomorrow

Without any hope

The Pincushion Queen

I’m filling out a self exploration journal

It asks me questions that make me think

I mostly like it

Until it stumps me

It wants to know three thoughts that made me smile

I sifted through the ashes of the day that was coming to an end

Searching for the remnants of a smile

Surely there had to be something

Instead I walked through empty hallways in my mind

Like an old home

Abandoned

There were cobwebs where laughter should have been

There were dusty corners where smiles should have hidden

I felt frantic in my search

It had to be there

Hidden under the tarps

I needed to find the right moments to erase the sadness in my heart

From room to room

Floor to floor

I searched

For something to hold onto

I looked around at a strange home that I’d never been to

But like all empty dilapidated homes

The previous owners had taken the memories with them

Maybe tomorrow

I’ll get lost in my old home

I’ll find all the smiles and laughs

That have gone missing throughout the years

Maybe tomorrow

I’ll write it all in my journal

Hoping it’ll fill up the emptiness in my mind

Wishing that my heart will be so filled to the brim

That the sadness won’t have any place to slither in

And I can tape the pages of my journal

All around my broken bits

Covering the seams to keep all the happiness locked inside

‘False Hope Is Just A Game Of Russian Roulette, I’d Rather You Just Open Fire.’ – K. Piper

I had a brief moment the other day

Where I felt like I was going to get answers and help

The solutions to persistent eye pain and nausea seemed just within my reach

I fell asleep last night feeling relieved and excited

About finally getting some help

I was almost giddy

If you can imagine that…

I woke up and got ready with my stomach in knots

I felt nervous and apprehensive

Unsure what to expect

See and herein lies the problem with hope

It hurts when it gets snuffed out like a candle

It hurts more than the very reason you needed hope

The ophthalmologist didn’t hesitate to shut down a plausible explanation for my symptoms

Without suggestion as to where to go from this point

I left the clinic

Dejected

I came home

Closed the lights

Crawled into bed

Remembering why hope is a nothing more than a dangerous game of Russian roulette

And I’ve never liked the odds

‘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

‘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

Disclaimer:

I write because it feels good. I write because I have stuff to say. I write because I like seeing my words laid out in front of me. I write with myself in mind as the audience. I don’t write for compliments or pity. I don’t write to see how many likes or follows I get. I write the way some people need a cigarette to relieve the tension. It needs to come out. And it will. One way or another. This just happens to be the more positive way for it to do so.

I’m in a mood

The kind where I’m starting to doubt whether or not the treatment was even worth any of it

I’m approximately 2 months and a week post Round 2 of Lemtrada

I’m really tired

I don’t think I’ve made it past 10pm more than a few times

I’m nauseous more often than not

My eyes hurt

Back and leg pain

The laundry list could go on

I’m tired of feeling shitty

I’m tired of complaining

I’m frustrated

I’m irritated

And I’m sad

The me in my head

Isn’t this person

She’s out there living life

Not holed up in her condo

Hiding from the oppressive heat

Writing and feeling sorry for herself

That makes me so angry and disgusted with myself

Like I don’t even know this person anymore

I want to shed this old skin

This body

This mind

It clearly has been dysfunctional from the very beginning

Hell even upon being born

I couldn’t go home with my mom

I had to wait in an incubator

As if to prepare me for the outside world

That too

Clearly didn’t work