The Perfect Storm

I’ve been thinking a lot lately

Thinking about people…society

Thinking about being a ‘sick person’

About having a mental illness

I struggled long before my MS diagnosis

I struggled for years because of anxiety and depression

Even with treatment, I still struggled

Like MS, there is no cure for my mental illness

There is no quick fix

Even the medical treatments for both come with explicit warnings and precautions

So it seems like there a lot of similarities

Except for one major difference between my mental health and MS:

The way society perceives both

While many people don’t understand or really know what MS is all about

There is more empathy for people with MS than there is for mental heath sufferers

People seem to acknowledge that nobody would choose to have MS

However with mental health, people place a huge amount of responsibility on the individuals shoulders

Especially with mood disorders like mine

‘Snap out of it’

‘Be positive’

‘Exercise..it’ll make you feel better’

I’m sure I could fill countless pages with similar pieces of unsolicited advice

Not just from friends and family

But also from the medical field

It’s almost funny how after I found out about the MS

There was a certain credibility that I was awarded

My mental illness wasn’t enough to warrant unbiased compassion

But MS…

That’s different

Or maybe it’s the combination

Like your mom’s handwritten recipe for human compassion

While I’m grateful it’s awarded me more understanding in some avenues of my life

Something about it also strikes me

It must mean that I’ve become something like the perfect storm

‘Freezing slow time, away from the world’ 38 Years Old, The Tragically Hip

I received a call about my application for Canada Pension Plan

(Canada Pension Plan (CPP) provides disability benefits (disability pension and post-retirement disability benefit) to people who have made enough contributions to the CPP and who are disabled and cannot work at any job on a regular basis. )

My insurance forced me to apply

I was accepted

I will receive benefits until I am 65

I should be happy

It means there is no more need to provide ‘evidence’

I get the money I am entitled to

Instead I burst into tears after getting off the phone

You probably don’t understand why

Allow me to explain

Everyone tells me I could go back to work

Maybe part time

Or for another organization

I’m too young to not work

Be realistic now, who the hell would hire me?

I would have to explain my limitations

And I am all too aware of what happened the last time

I’m not naive

I understand I’m a liability

I cost more than I’m worth

So when I heard the news today

I didn’t feel happy or relieved

I felt heartbroken

Because it’s not just my employer who doesn’t find me fit to work

It’s the government too

And now I think they are right

I just celebrated my 38th birthday

I have 27 years ahead of me of what could have been my ‘working’ years

But now when the topic of work comes up or people ask what I do

I answer

Once upon a time

I used to be a youth worker

I was really good

I helped make a difference in young people’s lives

And now

I just exist

‘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’?

‘The Bravest Thing I Ever Did Was Continuing My Life When I Wanted To Die.’ Juliette Lewis

It’s the eve of my graduation

Tomorrow I will graduate from the Taking Charge Program at Humber Hospital

Where I’ve been going two to three times a week for the last two months

I remember in the days leading up to the start of the program

I had no hope that things would improve

I had no hope that I would learn anything or experience anything life changing

I was so wrong

In this program I’ve had the fortune of meeting people

Who are like me

Something I’ve not experienced often, if at all

Sometimes one of us will be talking and I’ll look around and see others nodding their heads

Or we can finish each other’s thoughts

It’s uncanny

How a group of totally diverse strangers could share such intimate details of their lives

And bond in such a way that makes me wonder what I’ll do when I don’t get to see them so often

Often the stories are sad

Or frustrating

Or disheartening

Or just too fucking familiar

But there’s this weird sense of comfort in all of it

The comfort you feel when you’re just completely understood

Even in the midst of all your fucked up-ness

I’m proud that I made it through this program

I’m glad I forced myself to talk, share and listen

Even on the days when I wanted to remain curled up in bed

I’m honoured to have been part of this wonderful group of misfits

I didn’t think I could learn more about myself

Having been through this so many times

But I did

I learned about myself

I learned that in the end

Even after all the shit and hurt and pain

I can still be in such awe of life

And I’m still willing to do whatever it takes to do more than simply exist

I want to live

‘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