‘Armed With Skill And It’s Frustration. And Grace, Too…’ The Hip

It might look a lot like weakness to the outside world

Maybe even to inner circles

But there is nothing weak about the daily struggles that it takes to survive through a mental illness

I repeat

There is nothing weak about it

There is nothing weak about me

Yeah I get it

Maybe you see someone who is fragile

Someone who is broken

Maybe you see someone who is crazy

Fuck

I don’t know who or what you see

I know what I see

Every single time I pass my reflection in a mirror or window

I see a fighter

Someone who has spent their entire life fighting

Fighting to live

Fighting to find happiness

Fighting to find peace

What an oxymoron

I read somewhere once that,

Fighting for peace,

Is like fucking for virginity

I get it

But its the truth

I fight tooth and nail

I dig in my heels

I scratch

I claw

Anything

To make my way back from the war that is constantly waging in my own brain

If you’ve never been there

You’re blessed

Truly lucky

That you’ll never understand how totally terrifying it is to not feel safe with just you and your own thoughts

You’re lucky that you don’t have to wonder when it will all come crashing down around you

Again…

I’ll never be grateful for having mental illness

I won’t lie and pander about how its taught me so much about myself

About the world

Trust me

There are things I’d never wanted to learn

Like what Paxil withdrawal can do to your once functioning brain

Like how food can cease being appealing to a die-hard ‘foodie’l

Like what the inside of a single room at a crisis centre looks like

I could have happily gone through two lifetimes not caring to know any of those things

It hasn’t made me wiser

Or kinder

So I can’t find it in myself to express gratitude towards something that has stolen so much from my life

From my family

From my father

From me

What I can unequivocally state

Without any doubt in my mind

Is that anyone surviving with a mental illness

Must want to be alive a whole hell of a lot

To be persist

To continue

To just keep going

To anyone who doubts it

You have no fucking clue

The strength and determination it takes to do it all over again

Tomorrow

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‘The Jealous Are Troublesome To Others, But Torment To Themselves.’ William Penn

When your world feels small and your life seems shitty, and you see the people around you…people you love or like a whole lot…living their lives, happy and maybe not perfect but pretty damn good

How do you cope with that twitch of jealousy in your heart?

The one you don’t want to experience

And the one that it pains you to admit to

How do you feel happy for them…

And still long for your own

Without that green-eyed monster taking up permanent residence in your heart?

-Asking for a friend 😳

‘Putting up with means withdrawing from panic in panic; adding panic to panic, hoping that panic will go away quickly and not come back; it means avoiding people and places that bring on panic so that one’s horizon becomes narrower and narrower unit it is finally bounded by the front gate…It means continued illness.’ Dr. Claire Weekes

I’m feeling frustrated today

I consider myself a pretty smart person

Also someone who is more self aware than the average person

I’m well versed in all things anxiety and panic related

I feel like I graduated with a masters in this shit

I can recite all the therapy talk

More so

I actually believe in what I’m saying

I am perfectly aware that nothing worse than the panic attack itself, will happen to me

And yet

Every morning I wake up, heart pounding, mind racing

In fear of the next panic attack

Those same panic attacks I’ve been having for over two decades

Those same panic attacks in which what I’m most afraid of, does not come true

In fact

It never comes true

So what the fuck is the problem?

I think my own fear is greater than my knowledge

So I give in

Day after day

Even with the meds I obediently take

I watch life pass me by

Feeling less and less like it’s even my life that I’m missing out on

That’s how far out of reach things like dinner out or going to my sisters house seem

I can’t seem to stop from being hard on myself

I feel like yelling at myself:

AFTER ALL OF THIS, WHAT THE FUCK DO YOU STILL NOT GET?!

HOW MUCH MORE TIME WILL YOU WASTE BEFORE YOU FINALLY MOVE ON?!’

I’m sitting here shaking my head

Because, after everything

And I still don’t have the answers to any of that

‘There Are Moments That Mark Your Life. Moments When You Realize Nothing Will Ever Be The Same. And Time Is Divided Into Two Parts – Before This and After This.’ Nicholas Kazan (Fallen)

I had an a-ha moment today in my support group. We were on the first step which is:
1. We admitted to ourselves that we are powerless over our disease. That our lives had become unmanageable.
I got to go last…which meant I got to listen to 3 MS veterans. All having been diagnosed more than 15 years ago.
One spoke of feeling comfortable in being alone on Xmas day.
Someone else spoke of being okay with their sometimes self-imposed isolation. Another spoke of being aware of their limitations, without being self-deprecating.
I sat back and listened.
One in a wheelchair.
One in a scooter.
One with cognitive symptoms.
And I felt envious.
Of them.
Me,with my mostly mobile body.
Me, with my mostly cognitive functioning brain.
I felt jealous of each of them.
I felt jealous of the comfort and grace each of them had come to possess upon accepting their illness.
I sat there and reflected over the last 6 years since diagnosis.
The ups and so so many downs.
The relapses.
The symptoms.
The steroids.
Treatments.
Injections.
Sleepless nights.
Crying fits.
Raging fits.
Anxiety.
So much fucking anxiety.
All of it, having led me to this moment.
Waiting for my turn to talk in a 12 step support group.
Their eyes looked to me.
My turn.
I looked around the table.
Less than a year ago, they were nothing more than three strangers. People I would have passed on the street, without a second glance.
Now we share this inexplicable bond.
This illness we all have.
Referred to often as the ‘snowflake’ disease, since symptoms vary so much from person to person.
These three people who now know more about my feelings and thoughts than most of the people in my more immediate circle. These strangers not so different from this lifelong outsider, after all.
I told them I thought that I had accepted having MS.
6 years ago. I heard the words coming out of my Doctor’s mouth and thought to myself ‘okay….so now I have MS.’
I thought that was enough.
I thought that meant I had accepted it.
But it wasn’t until that very minute that I realized, I would never be able to accept MS, until I had also accepted the negative impact its had on my life.
That meant accepting the change in my job status.
The permanent damage to my eyes.
The toll all of it has taken on my already fragile mental state.
Taking all of that in…and still being able to say that while I won’t succumb to it, I have come to terms with having MS in my life. That I’m OKAY with it.
I’m not there…
Not even close.
But I found hope in looking around me.
Which for someone as chronically hopeless as myself, is a fucking lifeline.

‘If I Could Start Again. I Would Keep Myself. I Would Find A Way.’ Trent Reznor aka GOD

I watched Birdbox the other night

With difficulty

Anyway

It’s a post apocalyptic film that is more unsettling than scary

The characters apparently ‘see’ something that is so troubling, distressing or terrifying that it makes them kill themselves instantaneously

The only way to prevent this

Is to be blindfolded effectively eliminating the chance to ‘see’ anything and that in and of itself is probably the scariest aspect of the film

Spoiler alert

The characters flee to a safe place which happens to be a home for the blind

Although in the book

This sanctuary is comprised of people who have voluntarily blinded themselves

Which I must say

Is a far creepier ending than the somewhat optimistic one the movie left us with

Regardless

This movie left me with a lot of thoughts

Two of my fears just happen to be the end of the world and going blind

😬

The former because of a weird experience I had with magic mushrooms when I was something like 16 years old

And the latter

Well that’s pretty self explanatory

What the movie gets so right though

Is capturing the fear of the unknown

Seeing the monsters always takes out some of the scare factor

Leaving them hidden

Allows us, as the watcher to assume the worst

Creating our own separate and distinct versions of the scariest creatures possible

And then this got me thinking about Multiple Sclerosis

Because these days, what doesn’t?

That very reason

The unknown is why people with MS tend to have high rates of anxiety and depression

When we are left to conjure up visions of our futures

We think of worst case scenarios

Each of us coming up with what would be the most horrific outcomes possible

Based on our individualized dreams, aspirations, loves, passions and etc

So how do we move forward?

When there is no way to accurately predict the future

Or even an adequate idea of what you want your future to look like

Even with scientific facts and doctors and MRIs

Several years ago, after a particularly bad period in my life filled with panic attacks

I attended a cognitive behavioural therapy group for panic and anxiety sufferers

One of the techniques they taught us to cope with our panic/anxiety

Was the use of exposures

Another was challenging negative self talk

At the time, I was struggling with my panic attacks occurring when I felt trapped

So I did my exposures in locked closets and on long subway rides through tunnels

I challenged all of the ‘I am going crazy’ and ‘I am a failure’ negative self talk

And replaced it with things like ‘I’m experiencing a panic attack, not going crazy’ and ‘having a panic attack does NOT make me a failure.’

The 14 week program was probably the biggest reason why my anxiety for the next several years was manageable

Until Multiple Sclerosis came along with its lesions and inflamed optic nerves and steroids

And literally upended my entire world

But what if I could use similar techniques to cope with MS?

Like my anxiety, it’s not going away and is a part of who I am

What if I imagined the worst case scenarios of MS? Like really felt and experienced what it would be like

And survived?

What if I challenged all of the painful thoughts that float in my head so many more times a day than I care to count?

Would it make this more bearable?

What if I accepted the unknown future and made a promise to myself that I could still bitch and hate and moan about it but ultimately roll with it and move on?

What if I accepted that I can’t finish my Bachelor of Social Work?

What if I accepted that I probably won’t be able to work full time?

What if I accepted that I will likely continue to struggle with my vision and the pain it brings?

What if I accepted that I will never have the life that I thought I would? That I hoped I would?

Would I then be able to finally end the chapter on all of that?

That chapter which has been left on a permanent ‘to be continued’

Which feels more like a permanent hostage situation

So what if I could erase that last line

And start a new fucking book

With all of my ‘defects’

With all of my broken pieces

With all of my changed dreams

Could I burn that old book filled with my past and all of my hopes for a future that isn’t really mine anymore?

Could I do it and just start over?

Not knowing what the ending will look like

Not knowing what will fill the table of contents

Knowing that a piece of me will burn with it

I have a tattoo I got years ago which reads ‘Tabula Rasa’ which translates into ‘Blank Slate’

I got that because I liked the idea of being able to start over

At any given time in our lives

To stop the story

And start something new

I think it’s been somewhat of a motto for me

When I didn’t like school or work

I called it

And started anew

So maybe that’s where I’ll start this new year with

My tabula rasa

My slightly broken

Slightly defected

Slightly damaged

Perfectly

Blank slate

‘When The Soul Suffers Too Much, It Develops A Taste For Misfortune.’ -Albert Camus

On a shitty day, I’ll gamble with myself

‘ If even one good thing happens to me today, I will be okay.’

At first glance it seems the odds are stacked in my favour

Only I’m not a very good gambler

And I find myself on the losing end of that bet more often than I’d care to admit

One

Good

Thing

It doesn’t seem like much

Nor does it seem like something that would be hard to come by

But when you’ve stopped working

Your world becomes frighteningly small

Leaving you with less possibilities for something

And there’s only so many times you can count your dogs something good that happened

Without starting to feel like you’re lying to yourself

Maybe it’s the combination of illnesses that I carry

That make it harder and harder to be on the winning side of that bet

Maybe it’s luck

I don’t know

I think I’m one of those people that can lament that if it weren’t for bad luck, they’d have none at all

So I like calling it a bet or a gamble

Because when you’re calling it hope

And you lose….

It’s just so much more disheartening