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…

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‘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’?

‘Yes, they’re sharing a drink they call loneliness But it’s better than drinkin’ alone’ Billy Joel

I never thought that finishing a mental health group program at a local hospital

Would remind me of a challenge I’ve often faced in my life

It’s called ‘loneliness’

One I’ve struggled with throughout my life

‘Loneliness is often defined in terms of one’s connectedness to others, or more specifically as “the unpleasant experience that occurs when a person’s network of social relations is deficient in some important way”.’-Wikipedia

I can’t recall the first time I felt lonely

I remember watching home videos of me as a kid at a birthday party

I was standing by the wall

Watching as all the other kids played and ran by me

I wonder know if that little girl felt lonely

Even in a crowded room with other kids laughing and playing

The last time I can clearly remember not feeling lonely was when I was a kid and I had two cousins who would sleep over for days at a time

Even during the school week

We went to school together too

But it was over too soon

Because when I became a teenager everything changed

Adolescence was a fucked up time for me

I felt like an outsider who didn’t really belong anywhere

And I don’t think I ever really found my niche

Until recently that is

Until the group that I was in at the hospital

The misfits

I wasn’t alone in the group

Even lost in my own thoughts

There were people beside me

Who knew

Who understood

There is nothing as intoxicating of a feeling as being understood

Of course we exchanged numbers with promises to stay in touch

But promises don’t always last and we all forget

Anyway that the group is over

And I’m not working

I find myself alone a lot

Being alone isn’t a bad thing per say

But it does give me too much time to dwell in the feelings that being alone brings

It’s empty and hollow

Like a cave

And sometimes I just want to leave this cavernous space

And be around people who get me

But I’m sort of stuck in this time and place

And I’m worried that if things don’t change

That lonely small little girl who watched the world go by

Will become a lonely sad old lady

Who is watching the world go by…

‘Armed with skill and it’s frustration. And grace, too.’ The hip

There’s something about the sight of my hands covered in paint or glue

Chipped nail polish and stained fingers

It’s the look of hard working hands

It shows the world that I’m a hard worker

Valuable

A member of society

Even though I don’t feel that inside

It reminds the outside world that I still exist

It hints to the world around me that I’ve gone through my share of battles

Battles I still go through

It allows me to feel purpose

Even though most days I’m walking through life without an idea of why I’m still here

And yet I still feel pride in my tarnished hands

It’s similar to how I feel about my collection of tattoos

It illustrates to the whole world

That I was here

That I’m here now

That I’m alive

That I’m still surviving

The only difference is now I’ve got the battle scars to show it

‘In the blink of an eye, everything can change.’

Sometimes I’m scared to blink

Im afraid that this current edition of my life

Will suddenly morph back into the one I was living 4 months ago

Although living seems like far too grand of a word for what I was doing

Existing maybe

Barely

So now even going to sleep is a gamble

Which version of myself will I be when I wake up?

It seems like far too big of a risk to take

And I’m not that much of a risk-taker

Not with my life

I don’t want to lose this stranglehold I have on my life right now

I’ve worked too hard

Struggled and fought too hard

To lose it all

In the blink of an eye