‘Only In The Darkness Can You See The Stars.’ Martin Luther King Jr

Its been three weeks since I slept in my own bed

It’s been one month since I went to the first emerge

It’s been four weeks and two days since I spent a night in a crisis centre

It’s been four weeks and one day since I went to the emerge in Collingwood

It’s been three weeks and two days since I sat in my neuro psychiatrists office crying and begging for help

It’s been three weeks less a day that I went back on 40 mg of Paxil

It’s been three weeks of good days, bad days and horrible days

Its been one day since I saw my neuro psychiatrist again and he upped my dosage to 50mg of Paxil to get me through this ‘crisis’

It’s been one day since he told me there was a significant gap in the mental health system which is why my wait for OHIP covered CBT is taking so long

Its been one day since he gave me the info of a private clinic

Its been thirteen hours since I started my new dose

It’s been thirteen hours with my stomach in knots

It’s been thirteen hours of fears, what if’s and so much more hope than I ever thought I had

One day at a time never felt quite so long

I know I’m not patient

But I’ll keep waiting if it means I get even a small fraction of a happy ending

I’ll keep waiting if it means that the last month hasn’t been in vain

I’ll wait as long as I can keep finding shards of light in the darkness

I’ll wait even it’s just a flicker

I can’t help but worry

I can’t help but wonder how long the world will wait for me…

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‘I Have Loved The Stars Too Fondly To Be Fearful Of The Night.’ Sarah Williams

Three weeks ago

I felt scared

I felt panicked

I felt unsure

I felt lost

I felt alone

I felt weak

I felt crazy

Three weeks later

I feel strong

I feel empowered

I feel courageous

I feel a little invincible

I feel like a conquistador

I feel proud

I feel brave

Tonight

I want to bottle this feeling

Memorize this moment

So that I can take it out when I need a reminder

Of who I am

Of what I’ve overcome

Someday

I want to look back on this

Without regret

Without sadness

Without bitterness

And only feel proud

That what I endured

Didn’t break me

It didn’t shatter me into millions of sharp pieces

Instead

A fire within me was ignited

Inflamed by my struggles

Emboldened by my heartache

It burns so bright and so fiercely

That I wonder if the stars above will take notice

Unsure if I’m beckoning them

Or trying to outshine them

We’re the same though

The stars and I

We’re both exploding from our depths

And illuminating what would have been total darkness

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


‘That Which Does Not Kill Us, Makes Us Stronger.’ Nietzsche

Mornings and late late nights are my worst

So far, I’ve made it through 7 mornings and 6 late late nights

Though it felt more like months of both

My body is tired

From ingesting little more than diabetic meal replacement drinks

And the occasional PB and J sandwich

I never thought it could get so bad

Correction

I never thought it would get this bad, again

Although it feels new to me

In many ways I’ve done this before

From calling crisis centres to emerge visits and drinking meal replacers and med changes

I guess I should say

I hoped it would never get this bad again

I know the old adage of ‘that which does not kill us, makes us stronger’

But I think I’d be fine not being tested for the millionth time on my strength

I think I’d prefer something like

‘You’ve been through the worst, it’s all sunshine and meadows ahead’

Shit

I’d even settle for something like

‘Way to go Angela!

It’s all overcast and fields of manure with the occasional sun shower ahead.

Yeah

I could settle for that

‘A person with panic disorder may experience symptoms such as severe feelings of terror, rapid breathing, and rapid heart rate. People with panic disorder may experience these attacks unexpectedly and for no apparent reason.’

One week

That feels more like a year

One week

That will go down as the worst in my life

I’ve lost count of how many nights I’ve woken Joey during the night in a sheer panic

Two emergency rooms

Two emerge doctors whose kindness I won’t soon forget

A private inpatient facility

A crisis line

Two triage nurses

Anyone who would listen

Even the ones that didn’t

Two psychiatric nurses

One psychiatrist who cared more about ‘stepping on the toes’ of my neuro psychiatrists than helping me through a crisis

One night at a crisis centre

One night where I never thought I could ever end up

One staff member who was my lifeline

One 37 year old who needed her mom to get through the night

One nine hour wait in an emergency waiting room

One road trip to Collingwood

Another half hour wait in an emergency waiting room

Countless nurses and doctors who looked right through me

As long as I didn’t kill myself

No skin off their backs

One prescription for Diazepam to get me through another scary night

Several messages and emails left for my neuro psychiatrist and to my family doctor and to anyone else I could think of

Two more days until I get to see my neuro psychiatrist

Thousands of hugs and kisses and words of encouragement from Joey and my mom

Countless messages of support from my friends, family and Facebook peers

One persevering warrior

Who is trying her absolute fucking best

To not give up

One day and night

Where the first and last thoughts aren’t about panic attacks

Would be nice too…

‘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