The villain and the victim

Some days my skin is like heavy duty armour

The kind that is simply impenetrable

Enemies fire at me and it just pings and ricochets away

I can fire back with the weapons I’ve made

On those days

I am strong

A real warrior

Then there’s days like today

Where I’m certain my skin is nonexistent because I seem to absorb everything

Every hurtful word

I look down at my body to see where my armour is

But it’s not there

I have no weapons either

Nothing to keep the bad things at bay

A withering glance causes me to crumple like a piece of paper

The worst days

Though

Are the ones

Where there is no enemy

It’s only me

And I am the worst villain I’ve ever faced

Those days I am both the villain and the victim

And I am uncertain which one is worse

For me becoming blind is an inevitability that I can’t just brush off..

As you may know I have MS and have had a few bouts of optic neuritis

While optic neuritis doesn’t last forever and your vision usually returns, it does take away a little bit of it when it leaves

I’ve recently been diagnosed with something called Macular Telangiectasia (Mactel type 2). It’s a rare eye disease that affects the blood vessels and your central vision.

Upon hearing this diagnosis, I was speechless

Which doesn’t happen often

But I sat there, wavering between some weird surreal reality where suddenly everything felt too real

The ophthalmologist asked if I had any questions and my mind went blank

I think I asked how this happened or something

I don’t really remember

I just remember thinking

How can this much be wrong with me?

If someone else was telling me this I would think they were surely making it up

Some type of hypochondriac or something

But it wasn’t someone else

It was me

And I wasn’t making it up

Or imagining it

This was one more thing to add to my health file

And it brought me just that much closer to the possibility of becoming (legally) blind

I’m sitting here typing this into my phone with its enlarged font and darkened screen

Thinking about all the what if’s

It’s a rabbit hole I can’t afford to go down

Again

So for now

I’ll leave it open ended

A possibility

A very real

Tangible

Possibility

And I’ll have to find a way to become okay with that

Too….

One day

One day

One day, I’ll be brave she thought

One day, I’ll be strong, she thought

When I grow up

She thought she could grow into it

Like she grew into her sisters hand me downs

Like she grew into a teenager

One day I won’t be scared, she thought

One day I won’t be weak, she thought

She thought she could leave it behind

Like she left pieces of her childhood, scattered on the lawn

A bike, a skip rope

Like the shedding of a skin

Becoming a woman

One day I’ll be brave, she chanted

One day I’ll be strong, she chanted

Maybe it wouldn’t be today

Today had too many demands already

She had things to do

She thought if she said it enough she could wish it into being true

As if the next day, she’d awake

Instead, she woke up an old woman

Her bones creaked getting out of bed

Her slippers too shabby to be comfortable anymore

She looked at herself in the mirror

A face she no longer recognized

She mouthed the words

Too tired to speak them

One day

One day

One day…

‘And as I hung up the phone, it occurred to me. He’d grown up just like me. My boy was just like me’

I thought being a teenager was the hardest part of having a parent with mental illness

The fighting, the lack of understanding, the fear and the unpredictability

It wasn’t though

I’m 38 years old and the hardest part is right now

When he’s 74 years old and he’s too scared to leave the house

Too scared to drive

Too scared to be home alone

Too scared to go anywhere

It’s hearing the fear in his voice when he asks you to call him bc he’s going to be alone for a few hours

It’s seeing the anxiety manifest in his body movements and in the tightness of his face and wringing of his hands

It’s the pleading in his voice to go to the hospital where he hopes they’ll find something, that is not anxiety

It’s hearing and seeing him lash out in anger because he’s frustrated and helpless in his life

It’s knowing that he’s missing out on life because of this thing he’s battled for over 40 years

It’s coming home after seeing him

And crying uncontrollably

Because you still can’t help him

You still can’t save him

You still feel like the scared kid who’s home alone with him when he’s having a panic attack and you don’t know what to do

You still feel like the teenager whose angry and pissed off at a world that lets this happen to anyone

It’s knowing another day will go by and he won’t have conquered his anxiety

His illness wins again

It seems like it always fucking wins

And I’m afraid that mine will too…

The Great In-Between

I hate the period of the ‘in between’

It can be anything

Transitioning from jobs, schools, homes etc

To me it’s a period of unrest

A feeling of general unease takes over me

I feel unsettled

As if my feet are not firmly grounded

And I’m at great risk of just floating away

Never to be heard from again

Or maybe spotted somewhere over the Pacific

Aimless and untethered

The ‘in between’ is the start of the unknown

The anticipatory anxiety of what comes next is excruciating

My frazzled mind jumping from one thought to another

And none of them with happy outcomes

I long for this period to be over so that I may feel the firm ground beneath me once again

So that I’m rooted

In place

And somehow finding comfort in being unmovable

Sturdy

Stable

Like a 100 year old tree with roots spread so far apart and deeply ingrained in the earth

I should like that

Very much

After all a 100 year old tree can’t just up and fly away

Not without a serious fight

‘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…

‘Even a happy life cannot be without a measure of darkness, and the word ‘happy’ would lose its meaning if it were not balanced by sadness.’ Carl Jung

I think I could write a story about my life

With a tongue-in-cheek name like ‘The Measuring Spoon of Life’

It would be about a little girl who would carefully measure her happiness by how many nights a week her favourite cousins could sleep over

She would use teaspoons and tablespoons to represent her happiness

When she was a teenager, she learned to measure happiness in dimes and grams

She would use scales and dime bags to symbolize her happiness

As she grew into a young adult, her happiness amounted to how many days in a row she got to spend with her love

For that she used cell phone pictures depicting laughter and text messages filled with flirting

Then when she hit her late 20s, she would measure her happiness by how long she could remain in public without having a panic attack

She would use mood journals and diaries to interpret her happiness

Later in her mid 30s, her happiness was measured by milligrams, and how many Ativan’s she’d had to take

Pill bottles and prescriptions were the perfect illustrations of how much happiness she’d been prescribed

Throughout the story the landscape changed

The young girl grew into a teenager and then an adult

But her objective in life remained the same

The pursuit of happiness

She learned very early on

That happiness only came in small doses

And because of that, it should be treasured dearly

She would think to herself

Maybe it’s so people don’t overdose on happiness

It’s far too sacred to be given an abundance of

In the story of the young girl, she learned early on

That happiness is not going to stick around forever

So she learned to cherish the nights with cousins, the recklessness found in the dimes and grams of youth, the lucky days spent with lovers, the little successes during rough patches

Like all great stories

It comes with a life lesson

Using the girl who measured happiness with spoons as an example

The story warns that if she had so much as blinked her eyes

She might have missed one of the small measured capsules that happiness would hide in

But that little girl was smart

And she knew that one day she might need a dose of her treasured happiness

She knew it would help her

To get through all the hard times that were waiting up ahead

The story ends with that little girl as an old woman now

Suffering through pain of illness, loss and disease

She looks so old and sad

She opens up a memory box

And empties it all onto the bed beside her

Out comes the spoons, the scales, the pictures, the journals, the diaries, the prescriptions

The old woman looks at her life laid in front of her

Instruments of measured happiness

And she’s so grateful

That she held onto all of those small doses of happiness

She thinks to herself

How much she needed to see it, to feel it all over again

She smiles for the first time in a long while

She can’t even count how many times

Those small doses of happiness that she’d held onto

Saved her life

Maybe a thousand times already

And once more

‘…In A World Of Ordinary Mortals, You Are A Wonder Woman.’ Queen Hippolyta (Wonder Woman’s Mom)

Struggling to get through today

Hour by hour

Minute by minute

Each second more excruciating than the last

Skin crawling

Head pounding

Eyes straining

This is the part in the movie where the poor guy reaches for his drug of choice

Where the sad woman guzzles her beloved bottle

It’s the climax in a novel

Where emotions soar to dizzying heights

Where nothing can possibly survive at such intensity

Like a car reaching peak speed

Like an addict reaching the height of their high

The moment is suspended in time

When the audience knows a turning point is coming

Watching for the pivotal scene in which the hero sheds his old skin

Where the heroine finally emerges

That’s what happens in movies and books

In real time nothing is ever quite so profound

The moment goes on and on

Stretching uncomfortably long

The hero remains sheathed in weary skin

The heroine hides in her shadows

There’s no audience waiting with bated breath

Rooting for the breakthrough moment

Instead

There’s only a woman looking at herself through a mirror

Waiting

Watching

Begging for a glimpse of the heroine to change the narrative of this story

From another unhappy ending

To one in which she finally gains her superpowers

I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe

Road map

I was 18 years old

I had just gotten my very first tattoo

In Montreal with my good friend

I got a tiny little fist

It took maybe 15 mins

And then we walked to a park

And I had my very first panic attack

This picture was taken when I walked away not really explaining myself to my friend

I don’t remember ever experiencing a feeling quite like that

Yet I instinctively knew that it was a ‘panic attack’

I grew up seeing my father have them

Almost daily

The knowledge didn’t help not comfort me

Somehow I made it through that first episode

I can’t really say how

And all these years later

And that tattoo

Of that little fist clenched in a show of power

Is still bumpy to the touch

Like a warning of the struggle up ahead

But I’d rather think of it as a tangible road map of what I’ve been through

And survived