‘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

The Only Way Out Is Through

It’s been something like two and a half weeks since I lost my mind
Countless days and nights that I haven’t felt like myself
That my skin hasn’t felt like my own
Two and a half weeks since I went to two different emergency rooms
Two and a half weeks since I spent the night at a crisis centre
Two and a half weeks since I first lost my appetite
Two and a half weeks since I first started having irrational and obsessive thoughts on top of multiple panic attacks per day
Two and a half weeks since I became scared to be alone
Scared in my own home
Scared of my own mind
It’s been a week and a day since I came to stay with my parents
It’s been a week and a day and I’ve only been comfortable being left alone once for a short period
It’s been a week and a half since I told my neuro psychiatrist what I was experiencing
It’s been a week and a half since I went back to my old full dose of Paxil
It’s been a week and a half of 3-4 Ativan per day
It’s been a week and a half of nausea, grogginess, headaches, crying fits and having my appetite return
It’s been a week and a day since I haven’t went to bed in my own home
Where I haven’t seen Joey either right before bed or as soon as I wake in the morning
A week and a day since I last napped with my dogs
4 days until I call my neuro psychiatrist to let him know how I’m doing
5 days until I start paying for Cognitive Behavioural Therapy
Unknown days until I return home
Unknown days until I don’t wake up afraid of a day filled with panic attacks
Unknown days until I don’t fall asleep fearing another day of panic attacks
Zero days that I haven’t wished for a different life
Zero days that I felt like I had the strength, courage and determination to get through this
Today though…is a special day
It’s the day where I wrote
Today is the day that I got my voice back


‘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

This Isn’t An Ode To Panic Disorder…

I’ve hated you since I started experiencing panic attacks

No

Even before that

I hated you when I saw what you did to my father

How merciless you were

I hated how vulnerable you made him

I hated how scared you made me feel

When I started having my own panic attacks

I wasn’t unsure or surprised by your arrival

I was just upset

I was angry that I couldn’t fend you off

Especially after having seen first hand the damage you caused

I was frustrated

And you grew stronger

I had my very first panic attack waiting to board a plane

That sense of helplessness and feeling of being trapped

Allowed you to flourish

And you grew stronger

I got more frustrated

I became depressed

At what I perceived as my failure

Failure of what?

Outrun you of course

Break the pattern

And you grew stronger

Throughout the years and the numerous times you showed up

You stole bits and pieces from me

From my identity

From the experiences I stopped myself from having

I can’t count how many things I’ve missed out on because I was just too damn scared of you

And you grew stronger

I didn’t know that it was me who fed you

I didn’t know it was me that built you up

I vacillated between fighting you and being so terrified of you that I hid behind medications and isolation

I’m bone tired of fighting

I’m drained of the energy it takes to be afraid

I’ve been living with you my entire life in one form of another

You haven’t killed me

Yet

I was hurt because of you

The people around me were hurt because of you

But it was I, who allowed that to happen

Not you

You were never strong

It was always me that was strong

Always fighting against you

And

Hiding when self preservation took over

I used so much energy trying to not let you win

That I didn’t realize

I could end this epic battle

By waving a white flag

I spent so much time hating you

When I should have been understanding you

Because you were struggling like me

You were the outcome of the bad day, bad week, bad month that I’d had

You were what my body needed to expel to move on

I was too consumed by the symptoms you gave me

The shortness of breath, the stomach cramps, the heart palpitations, the depersonalization

To see that those symptoms came up because I dreaded your arrival

I’m sorry that I didn’t see you for what you really are

You’re me

And we’re in this together

So

If my body and mind feel like they need to have a panic attack…

Well I guess it’s ok

We will get through this

It’ll be uncomfortable

But it will pass

Just like it always has

And I promise to try not to be so hard on you

If you promise to do the same

Who knows?

Maybe one day

I’ll even write a poem about how grateful I am for your existence

I’d tell you not to hold your breath

But we both know I’d be lying

So I’ll just say this

I get it, Panic Disorder

I really do

I’m only sorry that it’s taken me so long

‘Pain Is Inevitable, Suffering Is Optional.’ Haruki Murakami

I need to stop resisting my panic attacks

I know this

From years of therapy and educating myself on panic disorder

I am fully aware that I am not in danger

I am aware that my feelings although unpleasant

Are temporary

And will pass

Yet

My natural instinct is to fight against the discomfort I feel when I experience a panic attack

Thus I remain stuck in the cycle of panic

I read something this morning that resonated with meArticle

The key take away from this article

Pain is inevitable, suffering is optional’

What does that mean?

It means that there is nothing we can do in life

To avoid pain, both physical and mental

What we can do, however, is decide what we are going to do with that pain

Do we accept the pain for what it is (unpleasant feelings)

Or do we fight against it?

Making the situation worse?

Drawing it out?

Allowing it to permeate every part of our lives?

The answer is clear

The real question is how do we accept what feels unnatural and foreign?

We have to go against our instincts

Instead of fleeing

Instead of fighting

Give yourself over to the feeling

Maybe even taunt it

Invite it into your life

This can be done through self talk

Or exposing yourself to anxiety inducing situations

I think both are helpful

I noticed during this last month

How negative my self talk is

When I need it to be the exact opposite

I’ll find myself thinking or saying aloud

‘ I can’t do this’

‘It’s too hard’

‘I’m weak’

How self defeating is that?

So I’m changing the narrative

‘I am able to do this’

‘Just because it feels unpleasant doesn’t mean I am in danger’

‘I accept what is happening right now’

The other part is inviting the uninvited visitor into your life

Come on in

Do your worst

It’s been a hard week, and maybe if a panic attack is hanging around

Let it out

Allow yourself to feel whatever it is

Without punishment

No criticism

Find a place that is comfortable

And let it roll through you like an ocean wave

You know that it will be uncomfortable but it will pass

Makes perfect sense, right?

Now

I just need to practice what I’ve gotten so good at preaching

I will not be a cautionary anecdote that psychotherapists use for future patients

There once was a woman named Angela

Who allowed panic disorder to rule her life

And became isolated and held hostage

Even though she had all the tools she needed

To live

Dear Anxiety,

You’re a thief

Always taking

Never giving

You’re deceitful

And dishonest

You’re a master manipulator

And you thrive on the fear you create

You’re a jealous thief

Stealing away happiness

And love

Even robbing old memories

Making them turn sour

You’re a callous thief

Full of pain you can’t wait to inflict on others

Desperate to infiltrate every last happy place

You’re a cruel thief

Taking away the innocence of childhoods

And destroying what should be carefree teenage years

Annihilating adulthood with haphazardly thrown bombs

You’re a cowardly thief

Preying on people in their weakest moments

Victimizing the same people over and over again

Taunting them repeatedly

You are words that haunt

You are living nightmares that plague

You’ve stolen so much

That all we can do is pull at our hair and cry in frustration

Shouting that turns into whispered pleas

To just leave us alone

Wondering what we need to do

What more we need to sacrifice

To satisfy you

Spending entire lives

Serving life sentences

Paying penance for what we can’t control

All because of you

You’re nothing but a thief…