‘Feel the hollowness inside of your heart And it’s all, right where it belongs.’ Nine Inch Nails

I wrote this :

http://FUCKMS.CA/2018/03/21/A-TYPICAL-SICK-DAY-IN-THE-LIFE-OF-A-YOUTH-WORKER/

A year ago today.

My heart hurts

Looking around at my life

I still can’t quite accept that this is actually mine

Then I get mad at myself

Because that’s probably why I can’t move forward

I miss who I could have been

I miss who I should have been

I miss who I almost was…

‘Oh Angela It’s A Long Time Coming.’ The Lumineers

It is both heartwarming and difficult to look at these pictures of me.

I can see innocence and hope and so much zest for life in her expressive eyes. When I look in my eyes now, 35 plus years later, I see sadness that changed who I was to become.

I don’t know if that funny little girl with the big doe eyes is still around…but to her..I’m sorry…I wish I had done better

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.

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

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…

‘Hope Is Being Able To See That There Is Light Despite All Of The Darkness.’ Desmond Tutu

It’s an exciting time of year

It’s back to school time for a lot of people

Kids going back to school

Teachers and support staff heading back to work

A time for newness

Opportunity

Change

And me

Well I’m still home

Still

I don’t think I like that word anymore

It has such negative connotations

Like something is dragging on

And I guess this is

It’s sort of like living in purgatory

In between two worlds

….

I had to stop writing

I can’t seem to think about the kids or work without feeling so sad

The kind of sad where hot tears escape your eyes

Where it feels like you just picked a scab

And it’s red and raw and bleeding all over again

But it hurts so much more than the initial cut

Ugh

This isn’t where I want to still be

Still

Again that fucking word

Haunting me

Reminding me

I want to look back at my work memories fondly

Not with this gaping hole in my heart

Intellectually I know that I needed this time off

That I still do

There was and is a lot going on

That doesn’t

However

Stop me from wishing it didn’t have to be this way

I miss the kids I worked with

I miss the ones I haven’t even had the opportunity to have met yet

I miss getting to know them

Learning their stories

I miss finding ways to help them become better, stronger versions of themselves

It’s not entirely altruistic though

I selfishly miss seeing myself through their young admiring eyes

Looking at me like I held all the secrets to life

Looking at me with hope

Hope

I never managed to have much use of it

For myself

But always

Always managed to find even the smallest droplet for them

In this purgatory I find myself stuck in

I don’t belong in the work world

I don’t belong in the sick world

I don’t belong with the hopeful

I don’t belong with non hopefuls

I’m stuck lingering in between all of these worlds

With hope seeping out of my open wounds

Without a hope of saving a drop

But for those special kids in my heart

I’ll find a way

To save and keep a droplet of hope locked up tight

Just in case you need it…