‘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…

Damaged Goods

Once upon a time

There lived a young woman who’s heart was growing on the outside

You may have heard similar stories of babies born like this

But this young lady’s story was unique

You see, she was born with her heart perfectly intact and enclosed inside her body

But when she was 7 years old, her dad left her and her mom for good

She cried herself to sleep

Every night for a month

She missed him terribly

One morning she woke up and felt a lump under her pjs

It felt like it was moving!

She ran to her moms room

Her mom jumped out of bed and ran to her side

She saw the lump moving with her own eyes

It looked like it had a heart beat

She tore off the young girls shirt

And there her heart sat

Exposed and thumping away

Doctors and hospitals and so many tests

Nobody knew what was going on

All tests showed that the girl was perfectly healthy

Her heart was strong

Except for the strange occurrence of her heart being on the outside

As the young girl began to grow into a teenager

Her heart grew with her

When she experienced emotional pain

Like when another birthday passed, with no word from her dad

Her heart throbbed and little cracks started to form at the edges

Every time it beat, she felt a searing pain and a small rip would appear

It would go away for awhile

And then something else would happen

Like the time she saw her mom crying in the kitchen

Her heart would scream its pain so loud she couldn’t sleep

And her heart ripped apart a little more

It was really bad when she turned 18 and started having panic attacks

She was so worried that her heart would completely rip apart and she would die

And her mom would be all alone

She would wake up in a sweat

Crying and her raw red heart ripping in all the wrong places

This young woman and her mom decided to try to follow the advice of a new doctor

Who recommended that every time a rip would appear

The girl or her mom should get a sewing needle and some thread made out of twine and simply sew it up

This reminded the girl of a time when her cabbage patch lost her arm and her dad sewed her back up

Good as new but with a little scar that showed someone had loved her enough to fix her

They were shocked that this seemed to help

Every time something bad would happen

Her heart would rip a little more

And she or her mom would rush to get their needle and thread

And sew it a little more

Soon, her heart looked like battered war-torn soldiers clothing

All stitched together with black twine

Crissing and crossing all over her heart and in a hundred different directions

She felt even more fragile than she ever had

The only thing keeping her intact

Were haphazardly sewn together stitches

She felt like these stitches were somehow holding her whole life together

To keep her from falling apart any further

She wondered what would be the ultimate thing that would finally pull the stitches apart and leave her heart in pieces

She knew she was damaged goods

Maybe she always had been

Broken, cracked and irreparable

Too damaged to be helped

Like the cabbage patch doll who, after her dad left, suffered too many rips and tears to be put back together

There just wasn’t enough of her heart left to piece together

So she did the only thing she could

She hid the needle and thread and found her dad’s phone number

She sat on her bed and called him up

He picked up and she felt like maybe everything would be okay

She spoke to him for a minute or two

He sounded rushed and annoyed

Suddenly she heard yelling in the background

It sounded like a young boy

He was calling for his dad, telling him dinner was ready

She felt the familiar twinge of her heart ripping apart

Her father told her he was busy and said he would call her some other time and hung up

She sat back and let her heart fall apart

One last time

Later that day her mom found her laying on her perfectly made bed

Her eyes open and lifeless with her broken and bruised

Damaged heart

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

I woke up thinking about my nonna

I don’t know why…

So I’d like to share with you a little about my nonna Concetta

She wore black for like 50 years after my grandfather passed away

She used to have really long hair

I remember being a kid and watching her in wonderment comb it and then put in a bun

She never wore it down so I felt like I had gotten a peak behind the wall

She took care of me during the school week

My cousins and I would go home for lunch and she’d be always be ready for us

It’s funny to me now

But back then she never missed a lunch

She always sat with us

She didn’t eat

I don’t know when she ate her lunch

But during our lunch time as we spoke to each other in English

She sat with us

Just being with us

I remember once my cousin was telling a story and said the word ‘stupid’ to describe someone

And she backhanded him lightening fast

Because she thought he had called her stupid

I remember hiding a grin and a laugh

One time my cousins and I took our time returning after school

We approached with a big group of friends

She was waiting on the veranda

Yelling and screaming in Italian

Putting her hand in between her teeth

I can’t explain it

It’s an Italian thing

Anyway

My cousin was so embarrassed in front of his non Italian friends

That he told everyone our nonna was a witch and had just put a spell on everyone

When no one was around she would sit on the couch and play cards on her lap

But as soon as someone showed up at the door

She’d sweep the evidence under the couch cushion

I don’t know why she didn’t want to be caught playing cards

But it always bothered me

Maybe she felt she’d be judged

I don’t know

As I got older I didn’t see her as much

I didn’t speak to her as much when I did see her

Embarrassed by my broken Italian that I had once spoken well

I’d say the usual greeting and whatnot

But didn’t really talk to her like I once had

We’d go visit her and my cousins would be there

We would sit at the table and laugh and tell stories in English

Reminiscing

And she would sit there

Like old times

Just smiling

Being with us

She got sick and older and frail

I went to the hospital to visit her

It was late at night

My cousin left to get us something from Tim’s

My nonna looked scared

I got up and went by her bed

She looked up at me and I whispered

‘Ti amo tanto Nonna’

She smiled weakly

Eventually she got better

She went home

I visited again

I got a text from my cousin

Saying la nonna had died

It actually autocorrected to the nonna had died

That stood out then

Like she was the only one

She passed away at home

I went to see her one last time

I went to her room

Where she laid in her bed

She looked so small

So frail

So unlike the strong woman I’d looked up to my whole life

There was so much I wanted to say

So much I wanted to thank her for

Time had run out

But it didn’t matter

She knew

I just didn’t realize no words were needed for her to understand

She always did

Ti amo tante e per sempre

‘Expectation is the root of all heartache.’ Shakespeare

I’m starting a program tomorrow at my local hospital

It’s teaches coping skills for people with anxiety and depression

It is half days on Tuesdays and Fridays for 12 weeks, with a minimum of 5 Thursdays

It is a group format, run by a Social Worker, Registered Nurse and Occupational Therapist and overseen by a Psychiatrist

I’ll have a primary worker and access to the Psychiatrist during the program

At first, I was really intrigued and almost hopeful

Until I went for the info session

It was a few weeks ago

It was run by the OT who was jet lagged and seemed like she hadn’t a clue in the world of what she was talking about

I felt some of my balloon of almost hope deflate

I then went for an assessment last week with the RN, who sat impassively while I cried as she asked questions from her computer

I felt foolish and disappointed when I found out she would become my primary worker

I was accepted into the program and given a start date

Tuesday March 26

Tomorrow

I’ve promised myself that I will give it an honest open-minded try

After all, everyone has bad days and all that

And it would be reckless to throw away an OHIP covered 12 week program off of two measly meetings

Right?

Tomorrow, I’ll be there at 8:45 AM to start my first day

So maybe my balloon of almost hope won’t inflate

But maybe my ballon won’t pop either

And maybe

For right now, that’s good enough

‘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

‘At Times, Our Own Light Goes Out And Is Rekindled By A Spark From Another Person.’ Albert Schweitzer

Dear David (from Gerstein Crisis Centre)

It’s taken me four days to finally be able to compose this letter.

Not because I didn’t care to but because I became too emotional whenever I thought about your kindness towards me during my short stay at Gerstein.

You were the first person during my ordeal who did not see someone who was ‘weak’ and ‘needy’ but instead you saw someone who was tired of fighting so hard.

Someone who just needed a safe place to land.

You gave me that.

From the very minute I stood in front of the office doors as a crying hot mess, until we had talked long enough for me to enter a sleep-like.

state.

You threw me a lifeline.

You listened.

You talked.

You joked.

You laughed.

You related.

You made me feel heard and understood, and there are not simply enough words in the English language to convey my complete gratitude towards you for that.

So from one panic attack sufferer to another…

In words I know you’ll understand best.

I’ll just say:

I’d lay down in the snow with you, until your panic attack passes. 😊

Forever grateful,

Angela

PS if anyone knows him or how to get in touch with him let me know

‘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

‘Every Day Is Exactly The Same.’ NIN

Sarah laid in bed for what felt like the hundredth day

She hadn’t been feeling well

And there wasn’t anyone around to distract her

Oh sure

Some days friends or family would call her or text her

But it was mostly out of obligation

Anyway, she didn’t want to be a bother

So she kept to herself most of the time

Although today she wondered

If it were more to protect them or herself

Sarah tried to distract herself with game apps on her phone

Matching colours and finding candy

Eventually she grew bored of them

She fell back on the bed and stared up at the white ceiling

It was strikingly white and in dark contrast to her blackout drapes covering her windows

There was a thin crack in the middle of the ceiling

How had she never noticed that before?

The more she stared at the crack

The longer it seemed to get

The longer it got

The more she wondered what would happen if the ceiling cracked wide open and collapsed on her

She laughed out loud

Picturing first responders rushing to the scene

And finding her still in her Hello Kitty pyjamas at 3 in the afternoon

What would they think about her?

Would they wonder why a 45 year old woman was home in the middle of the afternoon

In bed and wearing pyjamas of a cartoon cat

Staring up at the ceiling

With her tightly drawn blackout drapes to protect her from the outside

Or the outside from her

But her ceiling wide open

With the sun and the sky and everything else staring her down

Would they too see the irony in any of it?

With that in mind

Sarah finally got out of bed and walked to the window

And opened her blackout drapes wide

If there was going to be a great collapsing ceiling tragedy

She didn’t want it to include an ironic anecdote that the paramedics told their friends

Absolutely not

She thought resolutely

For this

She would risk inviting the outside world in

Even if it meant there was now only a thin fragile glass barrier between her and the outside world

She shuddered and went back to bed

And stared up at the crack in her ceiling