‘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

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‘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

“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

—–

Life-changing article: Read this!

‘There is always some madness in love. But there is also always reason in madness.’ Nietzsche

I used to lament

How we would have had an epic love story

If it weren’t for my fucked up life getting in the way

It’s kinda messed up

How everyone loves the deeply flawed broken man in a romance novel

But nobody writes a story where the woman in the relationship is the one who is beautifully broken

Our story is nothing like a romance novel

I know I don’t need you to survive

This isn’t a story about a damsel in distress

Maybe I would even find a way to be happy without you in my life 🤷🏻‍♀️

The thing is

I don’t want to have to try

I want you in my life

In my darkest hours

In my darkest moments

I see you at the other end

Looking for me

Waiting for me

You read me affirmations when I’m too anxious to read them myself

You encourage me when my depression steals my ability to do that for myself

This isn’t a fairytale

It’s real and gritty and honest

And sometimes I’d rather be alone

I know it’s not easy

Sometimes, when I’m not consumed by own mind

I see how hard it is for you

That makes me far sadder than I could ever put into words

I still think how different your life could have turned out

If we hadn’t of met

I probably always will

I used to think that our love story was ruined

That it didn’t have a chance to flourish

Because of me

That my own story is filled with too many plot twists

To have a happy ending

But I was wrong

You are the plot twist

You’re the one I didn’t see coming

In a million years

I never would have guessed

That we’d be here

Together

After everything

All the hard times

All the sad times

Ive said before that I wouldn’t try to write something

That someone else had already written

And written so eloquently

This

Exactly

All of this:

And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”-Kiersten White

‘You can’t help getting older, but you don’t have to get old.’ George Burns

The first of October means it’s my birthday.

It means I’m 37 years old.

It means I’m a year older.

It means I’ve survived another year.

There is a reason I fight so hard and it is because I love life and want to enjoy it to the fullest.

I didn’t do the Lemtrada and the Paxil change for no reason.

I did it because I want more.

I want to die, wrinkled, tattooed, scarred and with no weeping at my funeral telling one another that ‘it’s a pity, she had such a hard/sad life.’

Nah, I want people to remember the life force that I was, the zeal I shared and the hunger I had for more.

I know it’s not always on display.

Sometimes other things take over but it’s always in there.

Sometimes it’s just hiding.

I’m like the comeback kid, I’ll always bounce back. I will this time too.

Here’s to 37 and making it count!

Thanks for all ❤️

‘But It Is One Thing To Read About Dragons And Another To Meet them.’ Ursula K. Le Guin

I have Panic Disorder What is Panic Disorder?

From my very first panic attack to my most recent this morning

They all share the same premise

My fear is that I’m going to go crazy

Which to me looks like

Being stuck in a permanent state of panic attack

Where my breath is not deep enough

Everything sounds too far away

I feel nauseous and queasy

My mind is racing

My heart beating too fast

My tears won’t stop coming

I feel afraid

I feel discouraged

And I feel like it’s all never going to end

I know people say shit like this all the time

But I truly wouldn’t wish this on anyone

It’s such an overwhelming feeling and sensation

That it just takes over every part of your life

Life becomes all about navigating panic attacks

What can I do to avoid them?

What triggers them?

What makes me feel better when I have one?

When will they stop?

Why me?

I won’t lie

I get really stuck in the last two

I’ve been thinking the same thing since I was 18

What the fuck did I do so badly that I had to get stuck with this?

Negotiating on what I can do better to make them stop

Its actually kinda funny that between MS and Panic attacks

I’d actually rather have MS

I’ve never thought about that before

Even writing it out sounds preposterous

But it’s the truth

MS with all its pain, difficulties, uncertainties and tribulations

I’d rather be stuck with you

Then experience even one more panic attack

I’m sure to people who’ve had the good fortune to never have had a panic attack

That sounds silly

But here’s the thing

While MS certainly fucks with your vision, your mobility and so much more

It does not trick you into believing your worst nightmare

It doesn’t dupe you into thinking you’re dying

It simply is what it is

Your immune system attacking your myelin

It’s as scientific as it is shitty

It’s not curable but it’s explainable (altho the exact reason why it occurs is still a mystery)

Panic disorder on the other hand

Is a lying, manipulative, twisted motherfucker

Who will do whatever it takes to fuck with you

Yeah maybe that’s giving it too much power

But how can I not when it’s been responsible for so much negativity in my life?

In my own father’s life?

Growing up I saw the hold it had on my dad

I saw how much he tried to resist it

How he couldn’t

How he still can’t

Sure people tell me I’m not like him

My doctor included

But we have this huge struggle in common

The one he couldn’t defeat

The one that feels like it’s defeating me

The one that feels like it has a chokehold on us

Maybe our stories are linked

If he defeats it

Then I can too

Or maybe one has no bearing on the other

But I promise

If I can slay this dragon

It’ll be for us both