‘The Happiest Place On Earth.’

Today is Joey’s birthday

Last year at this time

I was living with my parents

My mental state was super fragile

We had cake for his birthday at my parents house

I remember trying hard that day

To put a smile on my face

To be brave

To not be selfish

For Joey

Because he deserved so much more than what he got

Because I always felt like we could have been so great

If not for all the obstacles

My challenges that have disrupted our life together

But today

One year later

We are celebrating his birthday at Disney in Florida

Joey gets to be happy

I feel good

Maybe sometimes magic happens

Maybe the universe and planets align

Maybe I worked my ass off to get to this point

Whatever

It doesn’t even matter

Bukowski wrote: ‘What matters most is how well you walk through the fire’

And I did

I walked through the fire

And survived

Sure I have the scars to prove it

But who doesn’t?

I’ll be in Disney this afternoon

Indulging my inner kid

She deserves to have some fun

Even if it’s a moment

I’m going to close my eyes really tight and try my best to savour the moments

I deserve it

So does Joey

PS. Happy birthday Joey 🖤

‘To be calm is the highest achievement of self’

Today is my anniversary

Notice I didn’t write ‘ours’?

Because this one

Well it’s entirely mine

Today marks exactly one year since I would rather have died than continue to live in the state of panic I was in

It might seem dramatic

I don’t know if I can explain the pain I was in

I remember my mom talking about how I was then

And she winced recollecting the sound of my crying

It was without a doubt the worst time of my life

That’s saying something

Since I’ve been through so much

Its strange to some people

That I would pick Multiple Sclerosis and the unknown

I would pick ITP and the biweekly bloodwork

I would choose those things in a heartbeat

I would choose those things if it meant never having to go through a mental health breakdown

Today

As I write this I’m in a much better place

Both literally and figuratively

I’m not freaking out at Humber’s unequipped emergency department

Pleading

No

Begging for someone to help me

Today

I will not focus on what I couldn’t do then

No

Today,

I’m at my home

That I share with my husband of 12 years

My two dogs

Vinnie and Benny.

I woke up this morning

I brushed my teeth and washed my face

I had coffee and breakfast

I rearranged some furniture

I did some art

Now I’m writing this blog

It’s all so unexceptional

And I am so fucking grateful

‘Change Is The Only Constant In Life’

The streets were empty, grey and tragic

It was early morning

Raining gently

After everything had happened…

The shops and houses were in ruins

She could see the inside, the guts of what remained

Wondering mindlessly downtown

What was once such a bustling metropolis

Now deserted

Except for her

She wasn’t sure what she was doing

Why she was even here

She had walked here

After everything…

She thought what was once the heart of this city would hold some answers for her

On what was next

But seeing it like this

Empty and desolate

Only made her think that nothing would ever be the same again

She continued walking

Stepping over large cracks and tattered remains

She made her way to what had been her favourite place

An oasis in the city

Once upon a time anyway…

To read, to listen to music, to people watch

Now it was just a blank canvas

She stood in the middle

Where a fountain had been

She circled around

Examining everything from that formerly central spot

It was quiet and sort of peaceful actually

It was never peaceful

Even back when she would sit around on the benches

There had always been a low level hum of noise

Of a city on the verge of erupting

Now there was just…nothing

A thought occurred to her

She quite enjoyed the nothingness

After so much chaos, it was a balm for her shattered nerves

She headed to where the grass had once been

Laid down across scorched earth

Put her hands behind her head

Felt the gentle pitter patter of rain on her skin

Looked up into the wide endless sky

The clouds were clearing

She peered upwards

Fixated on a spot where a brilliant blue began to spread

She closed her eyes

She felt a change in the air

A shift within herself

Somehow she knew

This was just the beginning

And then in what surely must have been the first time in months

She smiled…

What I wish you understood:

I get tired really easily

The heat is unbearable for me right now

It’s hard for me to work up the energy to go out

I’m terrified that you will forget me

Right now I can’t do the things I used to

I want you to talk to me

I don’t want you to feel sorry for me

I want to be the old me

Even though I can’t really picture her

If you can

Maybe you could help me remember her…

‘And here you are living despite it all’ Rupi Kaur

There is something infinitely terrifying about needing any type of replacement for your blood

When the doctors first told me my choices were steroids or a hemoglobin infusion, I felt panicked

Immediately stories of tainted blood flooded my brain

I became very aware of my own mortality

Catastrophic possibilities of bleeding in my brain

Or bleeding to death

Were all I could think of

I also thought of everything I would be leaving behind

Joey

My parents

My sister

My nieces and nephews

I thought of all the things I might never get to see

Maybe I’ll miss Lisa getting hitched

Or my nieces having boyfriends

I’ll just miss out

On life

I thought about Joey

And how it might be easier for him without me

But then I thought of him moving on with someone new

Someone not sick

It was soul crushing

He’s mine

I thought

We’re supposed to grow old together

To retire in a hot place

And I broke down

I ugly cried

Hard

I’m not ready

It’s not my time yet

Then I thought of 6 months ago

About how many times I said I would rather be dead than dealing with my panic disorder

Maybe I jinxed it

Maybe I brought it on myself

Maybe I put a challenge out to the universe

But see

The thing is

You can’t be held responsible for things you say under duress

I wasn’t myself

I didn’t mean it

I was scared

So many factors

But I did wish it

So many fucking times

And I did mean it

It was so painful

I remember thinking death has to be better than this

Anything that makes it stop

You know?

That was 6 months ago

Today

I’m an artist who has shows planned

Today

I am a wife who wants to live out her future with her beloved

Today I am a daughter and daughter in law who wants to spend time with her family

Today I am a sister and sister in law who wants to share more laughs together

Today I am an aunt who can’t wait to see her nieces and nephews grow up and become who they were meant to be

Today

I want to live

Through the pain

Through the sadness

Through the blood tests

Through the infections and fevers

Today

I am going to fight

Because I want to

‘Okay, you made me scared, you did what you set out to do And I’m not prepared, you really had me going there for a minute or two’ The Tragically Hip

Scared is different from panic

Panic is unwarranted

Panic is your body misinterpreting signals

Panic is reading everything as danger

Scared is a reminder of what we have to lose

Scared is a prayer on our lips

Scared is being alive

It’s okay to be scared

Sometimes it’s even expected

Sometimes I struggle to sort out in my mind what is ‘normal’ fear and what is my panic disorder

Yesterday I felt my heart beat fast and I felt panicked

Surely it meant something was wrong

Maybe I was bleeding in my brain

Maybe I was going to feel the way I did last week

Maybe I would receive bad news

Today is different

Today I am scared that my blood levels won’t improve

Today I am scared that this could turn into something worse

Today I am scared to miss out on anymore of my life

And tomorrow

Is another day

That I can’t be afraid of

Just yet

‘What else should I be? All apologies’ Nirvana

I wanted one week

Where I could pretend to be like everyone else

Where I could pretend to be the wife you deserve

Where I could pretend to be the person I always wanted to be

Instead I got a day here or there

I was too greedy when I wanted a week

I should have known better

I should have asked for a moment

Maybe two

But a week of unadulterated happiness

Just wasn’t meant for me

And so you had to suffer too

Because once upon a time you were unlucky enough to fall in love with me

This is what your life will be like

What it has been like

Hospital visits

Stomach aches

Crisis centres

Tears

Panic

And so many sorry’s that just get stuck in my throat

Making me choke

On nothing but apologies and regret

Sorry’s that your ears will never hear

Because to utter them might make you wonder the same thing I always do

‘Why the hell is he still here’?