Long Term Disability 😒

I’m tired and don’t feel like disguising what I have to say in a poem

For those of you that know it’s been a long week

Few weeks

Months

Entire 2018 really

Maybe more

I don’t know

I heard from my employer

I don’t even feel like cutting and pasting with my smart comments interjected

I’m standing at a precipice in my life

That I never thought I would be wavering on at 36 years old

Yet here I am anyway

Long term disability has been brought into the mix

I’ve been on Sick Benefits since April as my employer doesn’t have short term benefits

I now have to decide what’s the best decision moving forward

The key points are:

-My shitty attendance

-The unpredictability of MS

-The realization that my mental health has probably caused more lapses in employment than anything else

-Will anything change?

I’m under no illusions that having the best of intentions doesn’t equal being employee of the year

Nor does being an above average employee on the days you do show up

I get it

From an employers perspective

I’m more hassle than what I’m with

It’s always the same

Angela is amazing at her job

When she’s here

I’m tired of hearing that

Like I think my soul seriously can’t handle hearing that another time

Or feeling like I need to defend myself

Defend the ‘chronic absenteeism’

So long term disability is an option I’ve never wanted to pursue

For the following reasons:

-I fear falling into a depression being home

-I’m too young to be off of work

-I still want to work

-There are still so many kids I never had the opportunity to work with (even typing that had me ugly crying)

-I will feel embarrassment and shame at being off of work (that was difficult to admit but there it is)

-If I’m not a youth worker, what am I?

Some of the reasons may seem trite to you but it is what it is.

On the other side of the spectrum…

Reality of returning to my current employer:

-I will be under hard scrutiny

-I have no faith in an organization that has none in me

-The way I’ve been treated (though perhaps legal) has been insensitive, ignorant and disrespectful, nothing will change that

-They are holding the power of where they will place me and will continue to send me to the doctor for more medical documents until they get what they want

-As soon as I get a ‘pattern of absenteeism’ they’ll can me

-The stress of this will have a negative impact on me

The reality of finding a new job:

-Things will be great for awhile

-Once the honeymoon period is over and they notice my absences, it will start all over

-This isn’t about being negative this is about accepting my reality, and there will be absences. Lots probably.

-During a 6 month probationary period I can be canned easily

I’m curious as to how other people have come to the decision to stop working. Or hear from anyone who is off of work and their experiences with it. In other words, any feedback would be appreciated.

Advertisements

What is it about a death that makes you evaluate and question everything?

I think it must be the finality of it and the possibility that each of us might pass away before we’ve done/said/felt something we have determined to be important.

And if we fuck it up

That’s it

There’s no take backs

No do overs

There’s this one chance at life

Yet, to fuck up is inherently human

We make mistakes

Sometimes we learn from them

And sometimes we keep making them over and over again

And yet to say at the end of your life (however long that might be)

That you have lived and will die with no regrets

Is kind of a beautiful thing

A lie undoubtedly

But indeed a beautiful thing

Much in the same way that fairy tales are beautiful

Or heavenly tales of the after life

Each of those beautiful in the way that can never be true

Real life stuff isn’t beautiful in such an edited way

It’s messy

And it doesn’t play out in such a fantastical way

There’s not a before

Not a once upon a time

Not a singular event that changes us

And then an after

Not in such a seamless order anyway

There’s lots of before moments

Lots of events that are detrimental to who we are

Lots of events that are completely insignificant in the greater scheme of things

But there’s not one final culminating scene in which the fairy tale closes

We don’t know when it will end

We don’t know when our life is over

And so we live it the only ways we know how

We segment this great big life into days and weeks and months

Not knowing when we will run out of them

We go on this way

Until we simply have no days left

And the story ends

Sometimes abruptly and with a bang

Sometimes quietly and with a whisper

And each of us never knows how the story ends

Up until that final moment

What will be replaying behind our eyelids as we take that last breath?

Will it be relishing our own versions of the happily ever after we lived?

Sprinkled with some regrets but overjoyed with all the things we did do

Or will it be filled with visions of a life that we never really lived?

Weighed down with regrets that could have been chances if not for the fact we didn’t take them

Once upon a time I knew how I wanted my story to end

But my head got stuck somewhere along the way

And I’ve become stilted by some life altering events

And now I can’t reimagine a happily ever after

That includes me

Let alone

One that stars me

The Cowardly Lion’s Great Lie

The cowardly lion

Wanted nothing more than courage that he didn’t believe he possessed

He joined a rag tag group of travellers

Searching for a magical cure for his allusive cowardice

Together he and his fellow travellers

Fought through witches and flying monkeys and haunted forests

Hoping and fighting to find the one thing he wanted more than anything

In the end, the lion learns that he always had courage

He just needed to find it within himself

Like the scarecrow and his brain

The tin man and his heart

It was always right there within themselves

The story ends and they all happily walk down the yellow brick road of life

Each of them happy and content they’ve found the things they’ve so long desired

The audience smile and titter amongst one another

That this is a story from real life

One just needs to believe in themselves

But I wonder what would have happened

If the cowardly lion learned he would never find his courage?

This mysterious thing was never to be attained

The courage he yearned for would continue to evade him

Mocking him cruelly

The lion that should be so brave and strong

Is nothing but a great big disappointing coward

Just like when we disappointedly learn that the wizard is nothing more than a regular human pretending to be something he will never be

The lion will be forced to continue to wear his warrior costume

The whole world watching

All the while the lion knowing he is nothing but a fraud

The scared cowardly lion just waiting for the entire world to find out what he’s always known

That he can dress it up

And make it look real believable on the outside

But if there’s nothing inside him

The facade will all fall apart

And he’ll always be remembered as that scared cowardly lion

Who couldn’t, no matter how much he wanted, live up to what he was meant to be

To what he always wanted to be

The courageous lion that doesn’t exist

‘Courage, above all things, is the first quality of a warrior.’

All I can see is the empty space where my ‘motivational’ affirmations once hung

All the words I thought I’d need to get me through this dreaded Paxil withdrawal

Now discarded and out of my face so I don’t see the glaring reminder of another failed attempt

But it’s likely I didn’t stand a chance even before I started

I hadn’t had a full blown panic attack in a long time

Until today, that is

All week I felt it coming

Making me irritable and antsy

But I proceeded forward with my Project Paxil Taper

Each day I told myself I didn’t feel worse

I didn’t feel anxious

It was fine

I was fine

But I was lying to myself

I don’t know if it was the anticipatory anxiety that got me or the effects of decreasing Paxil

I don’t think I’ll ever know

I reached out to professionals

Asking for help and support in this withdrawal process

But again and again I was met with lack of resources and ambivalent sympathy

Today it was too much

I closed the blinds in the condo

Tried to distract myself with audiobooks and tv and music and extra long hot showers

And all the while I could feel it’s suffocating grip on me getting stronger and stronger

Making it harder to think and breathe

I laid in bed and tried to utilize the skills I’ve been taught

But none of them worked

My stomach hurt

I felt nauseous

I could feel the grip getting stronger as I grew weaker

Clammy and sweaty and cold

My headache hurt like it did all week long

And then when I couldn’t hold it off anymore

It overpowered me (like it had done so many goddamn times before)

And just like that

I felt helpless all over again

Like the fucking victim I never wanted to be

I took more Ativan to help it go away faster

Joey was home and tried to quell the rising panic

And the crying

All the fucking crying

But nothing works

My crying louder and harder to breathe

The only thought clear in my brain

Is how this is never going to stop

I will always be at war with myself

My natural instinct is fucked up and no matter how many times I’ve tried it just doesn’t change

It doesn’t matter how tired or how many good days, weeks or months I have

When I’m at my weakest

It rears it’s ugly head

And I’m powerless to defeat it

So all this bullshit warrior can do is cry

Not in sadness

But with pain that comes from deep within me

Because I know

That at the end of the day

Not even 4mg at a time

Not even with support

Not even with CBT and all the other therapies

That I still can’t beat this

It won’t matter if I cover my body in quotes and reminders

It won’t matter how much I want this change

How determined I am

All that matters is that I’m still so afraid of my own goddamn mind

I’m afraid of the panic it can conjure all by itself

The derealization, the depersonalization, the heart racing, nausea, can’t breathe feelings that come at me full force

And I just can’t see, no matter how hard I try (and trust me I so badly want to see it)

A time in which those feelings are not a part of the landscape of my life

And that is the most terrifyingly hopeless thought I have ever had

My doctor said to me on Monday he could see a happy ending after all of this is said and done

I won’t lie, I carried that home with me and placed it under my pillow and wished on it every night since

But not everyone gets the happy ending that they want

Maybe this really is as good as its ever gonna get…

The task is in deciding if that will ever be enough

I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe

‘But black roses and Hail Mary’s can’t bring back what’s taken from me’

It’s with a heavy heart that I write this blog tonight

My doctor has assessed me and has determined that I’m not medically fit to work right now

So, I’m taking a leave

I’m not sure for how long

Starting now

Part of me thinks I can never return to a place that made me doubt myself so many times

Questioning my value

Questioning my worth

I don’t care what anyone says

It was personal

It still is

And I can’t pretend that doesn’t hurt

Part of me is terrified at the prospect of starting over

Again

I’ve never had to look for a job carrying the weight of an MS diagnosis on my back

I don’t know how I feel carrying that burden into a new environment

I’m scared to go from one unsupportive employer to another

Let’s be real shall we?

Who wants to hire someone who is likely to take a lot of sick days?

Even if said person is fucking stellar…

On the days they are there

From a production point of view

It just doesn’t make sense

In their terms

I will always be a liability

And not an asset

So where do I go?

Even with certification I don’t have enough letters behind my name to start up a private practice

I’ve never really learned to do anything else

But you know talk to youth

What will I do if I can’t do that?

I’m not so egocentric as to think there won’t be others who are more skilled at engaging youth than I

And I will be replaced

As if I was never even there

Maybe just a cautionary tale for new staff

I’ll just be another adult who abandoned the kids I currently work with

All that work building trust

Gone just like me

They’ll look back on their time with me with bitterness and a reminder to never let someone get too close

And I’ll carry that guilt with me

And let me tell you kid

I fucking get it

I trusted too

I placed faith in my employer

And I’ll look back on this time with bitterness and a reminder to never let anyone see your weaknesses

After all this and I can still relate to those kids so damn much

For them, I’m sorry

I don’t know what’s next

And that is probably why my heart is beating out of my chest and my stomach is warring against itself

What will I do while I’m home?

Will I get worse with nothing to occupy my needy brain?

Will I sit around in my pjs and anxiously pick at the thoughts reverberating in my brain?

It’s okay

And I think to myself over and over again,

Not every story gets a happy ending

Not even when I’m writing it

And especially not when it’s my story

And it’s okay

It’s gonna be okay…

Worlds Worst Employee

Chronic absenteeism

Those words keep repeating in my head

Sick days

Can’t get out of bed days

Anxious days

On and on

I can’t even use Multiple Sclerosis as an excuse

It started way before that

Somewhere in between my first real job in the industry and getting married

There were so many bad days

I wish I could say I know why it all happened

I didn’t know then and I don’t know now

It’s embarrassing when a supervisor calls you into their office to talk about your frequent absences and not the quality of your work

I can’t remember what I disclosed then

I was naive and thought people in positions of power cared

Especially in a field such as mine

But chronic absenteeism isn’t forgivable even in the best circumstances

I found that out quickly

I had a boss once who understood me

I can’t say enough about her

She didn’t judge me or make me feel less than

But then she was replaced

And when she moved on, she left a note for the next person in charge advising them to overlook the absences because in her words I was ‘worth it’

It got worse after I was diagnosed with MS

The chronic absenteeism, that is

I had a few supervisors that tried to understand

Or maybe they just overlooked it because they too thought I was ‘worth it’

That’s my wish

But I don’t know and can’t speculate on the why

There were some uncomfortable conversations where I hung my head with guilt and embarrassment weeping from my pores and tried to explain my life

In words that didn’t sound like excuses

Even though I’m sure that’s how they sounded

I know they did

Because my own ears heard it that way as well

Here I am now

10 years post finding out struggling with mental illness isn’t a valid reason for missing work

5 years post learning that adding MS to that equation doesn’t add up to stellar employee record

Decades after my father stopped working for similar reasons

Now at 36 years old I’ve built up a track record that includes words like ‘chronic absenteeism’ coupled with sentences like ‘when she’s there, man she’s good’

Where does that leave me?

With an ultimatum of having my doctor evaluate me and my frequent absences and ask for a modified work schedule which would likely lead to my relocation to another program (if possible)

Or quitting/going on long term disability like my father did so many years before me

Tackling the latter; quitting would leave me in a precarious financial situation

Going on long term disability would mean I’m off of work at 36 years old with a brain that doesn’t do well left to its own devices

Trust me, I’ve seen what it did to my father

The alternative is going to my doctor with forms and chronic absenteeism on my tongue

And that would leave me in a state of limbo

Where my fate is left in the hands of an employer that I have lost all faith in

For them to decide if they can accommodate me

Really for them to decide if I’m worth accommodating

Or to find another program to stick me in

Like a dirty little secret

Where the powers that be will dump me onto the unsuspecting supervisor

I wonder what their track record included for them to have gotten stuck with the likes of me;

The Worlds Worst Employee