‘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

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‘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

‘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 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 😏)

‘No Dress Rehearsal. This Is Our Life.’

11 years ago

October 27, 2007

We got married

Still a few years shy of 30 years old

We thought we had it all figured out

How little we knew

We had yet to learn a lot

To experience so so much

We thought we knew it all

Life, predictably knew better

And yet

Even though

It was never perfect

It was occasionally heartbreaking

It was often difficult

It was filled with laughter

It was sometimes chaotic

It was sprinkled with passion

It was usually me needing help

It was intermittently explosive

It was frequently unexpected

And it was always…

Always…with you

🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤

Throw back 11 years ago