‘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…

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Unknown

It’s so ironic how in the click of a ‘send email’ button, your mood can change drastically

I was feeling decent

Dare I say optimistic (I know, my first mistake)

I met with a social worker at the MS clinic yesterday

And after my awesome group on Friday

I was able to put so many of my thoughts into words to express to the social worker

We discussed numerous things including my difficulty attaining acceptance and my work woes

We discussed my worries with applying for LTD

With not having a job

Not having it be a part of my identity

Of what people would think

And most importantly how I would see myself

The social worker told me to listen to my body

I woke up today with a plan

I would email my employer requesting an application for LTD

In the event that at my next doctors appointment, I was ready to make a decision

So I did

And I got an email back quickly

Refusing to provide me with an application until my doctor provide them with those five questions they requested

Painting me as non compliant and difficult

The questions in case you’ve all forgotten are:

‘1. A description of any medical, physical or other restrictions which may result from your medical condition and which may impact on your ability to perform your job duties and attend work on a regular, full-time basis, meaning five days per week. (Please note that we are not asking for any diagnosis or details of your medical condition, other than as they relate to any restrictions it may have on your ability to perform your workplace duties and ability to attend work regularly.);

2. A prognosis from your physician as to the likelihood that your medical condition might improve, such that any current restrictions and/or modifications might not be required in the future, or may be required to a lesser degree;

3. A prognosis from your physician as to the likelihood of your ability to achieve regular, full-time workplace attendance (i.e. five days per week as opposed to your current average of four days per week) in the reasonably foreseeable future;

4. Alternatively, if your physician determines that it is unlikely that you will be able to achieve regular, full-time attendance in the reasonably foreseeable future, whether it is also likely that your attendance will tend to decline in the reasonably foreseeable future; and

5. Any suggested accommodations or recommendations your doctor may have for employer to allow us to better accommodate your situation.’

I wonder how many of you non MSers think these questions are no big deal

Easily answerable

But to someone with MS, these questions are repetitive and lack insight into what a chronic illness is

I jotted down my own answers beside each question:

1. Chronic fatigue, visual impairment and pain, anxiety and depression (both of which are physiological symptoms of MS), chronic pain and headaches and nausea

2. Unknown. Chronic illness is unpredictable and incurable

3. Unknown. Chronic illness is unpredictable and incurable

4. Unknown. Chronic illness is unpredictable and incurable

5. Possibility of patient applying for LTD if you ever send her the fucking form.

I asked again for the application and she refused.

Bah. I’m tired now.

‘I don’t know who I am or maybe I do know who I am and I just don’t want to be her anymore.’ -G.F

Feeling a little lost

I know

Nothing new

Since stopping the Paxil project

I feel like I have little purpose

I’m still off of work

Which basically means

I’m sitting on my ass doing a whole lot of nothing

My return to my role in the Section program is still unclear

Work has had my medical documentation for over a month but I haven’t heard anything on that end

Not a ‘get well soon’

Or ‘are you still alive?’

All that aside the million dollar question is what will happen if and when I return

I don’t know if they think I’m capable of returning to my position

They have the authority to move me into a different position

That’s weird isn’t it?

I’ve been made aware that it’s within their legal rights

But I no longer have a say where I work

Somewhere along the way

I no longer have control over a huge part of my life (my career)

I don’t know if it’s MS that I owe that to

Or my ongoing struggles with mental illness

Or an amalgamation of all the above

Each taking a little piece of my ability to be a ‘good’ employee

Of course there’s an option to leave this job and look elsewhere

But I would only be kidding myself

If I were to say that it would be different in another job

I mean

At first it would be

I do well in interviews

Maybe they’d hire me

Things would go well

I’d exceed their expectations

And then

The sick time would start accruing

And instead of them looking at me like I’m some slacker

I’ll explain my illnesses

And then

They’ll understand

For months or maybe even a year

But eventually

The rhetoric remains the same

Angela is an excellent worker…when she’s here’

Call me pessimistic

But I think it would make a memorable epitaph on my grave

‘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…

When it rains, it pours. Oh the irony

Letter from HR to my union. My notes in italicized bold type

‘Please note, Angela has since put in a request for a medical leave of absence, beginning May 1, 2018 for one or two months. We will need to address this request separately.

(And yet here it is)

1. What is your specific concern with regards to staffing the program?

This program is designed to provide in classroom support for the students and the staff. That requires that a staff person is available for the entirety of the time in class for the days on which class is scheduled. In other words our employee schedule is depending on the school calendar and timelines. In short, 5 days a week/for any days the school is open. Holiday, vacation and other time off are to be scheduled in accordance with the school calendar, as outlined in our Policies and Procedures.

When an employee is unable to attend class 5 days a week, employer has an on call roster of employees that can fill in on short notice, however, this backup process is intended to manage one off absences, not a continuous number of them.

In Angela’s case, as you will see, her absenteeism has resulted in a significant drain on our on call roster resources.

(There has been no coverage for the bulk of this year so how could their possibly be a drain on resources?)

2. What particularly has the impact been on the program on account of Angela’s absences?

The impact of Angela’s significant absenteeism has been many. On the front end there has been the impact as described above on the drain on our limited on call resources to fill the day in the event of an absence. Secondly, the point of the program is to provide on-site support to the staff at the school and to support and provide monitoring to the students in the program. Absenteeism means that the on-site support to the staff and the student support and monitoring don’t happen, leaving the on-site staff with more to manage, when coverage is not available, putting a strain on school resources as well.

Additionally, as the Counsellor for this program, Angela is expected to develop a rapport and relationship with the students and their family on-site in the school environment. If she is not able to be in class regularly it is difficult to establish, develop and maintain solid relationships. Finally, we have been approached by the school and program supervisors, clearly indicating that her absenteeism has been a strain in their staff and the program and cannot continue.

If employer cannot manage the situation, we could potentially be at risk of losing the program, and the funding, resulting in layoffs.

(I’ve been repeatedly told by my direct supervisor and collaterals that my ability to build rapport and engagement with these youth is superior bar none. That seems very contradictory given the above statements. Furthermore could it be that school admin is upset as a result of being notified about my absences when they have never been in the past?)

4. You’ve remarked on Angela’s level of absence from work over the past two years, yet there has been no acknowledgment from you of the fact that she was on a modified work schedule during most of that time; please substantiate these statements you have made with detailed analysis of absences for the last two years, as we would like to see a comprehensive listing please.

I have appended a summary of Angela’s attendance records for 2016, 2017, and 2018, plus some brief notes on her reduced work for 2015.

You will note that even when on an accommodated reduced hours work schedule, which we acknowledged, Angela has demonstrated that she has not been able to attend work for 5 days a week with any consistency, such as to address the issues that have arisen as a result of the significant amount of time off.

I trust this provides sufficient background and information to understand our position requesting medical as it relates to Angela’s ability to attend work 5 days a week to meet the requirements of the program.

(‘Even while on a accommodated work schedule Angela has demonstrated that she has not been able to attend work for 5 days a week’ . Does anyone else see the pure ridiculousness of this comment? As that would have been the point of needing the accommodation no???)

 

I look forward to your response and the medical that has been requested.’

What an awesome and unusual way to hit me while I’m down. 👍🏼

And I feel super supported not at all stressed, embarrassed and I definitely don’t feel like this is contributing to my extraordinarily shitty health at the moment!! Thanks!

A typical sick day in the life of a youth worker

I woke up after being text messaged and called by one of the youths in the class.

I’m half asleep and he hears it in my voice and asks if he woke me up. When I answer in the affirmative he asks if I’ll be at school.

When I say no he gets sucky that I won’t be at school today.

I tell him I’m glad he’s going to school though and I futilely try to explain that I’m sick but he’s already telling me the reason for his phone call.

There’s bad shit brewing between one of the boys and the only girl in the class.

My sleepy brain can only comprehend the words picture, Snapchat, cops, arrest. I sit up now but the kid’s taxi has come to take him to school.

Of course I’m wide awake now, so I attempt some damage control with a member of my team in the classroom.

It’s like a potential war zone in there and we gotta be prepared for catastrophes at any minute.

Okay he’s been forewarned, I feel better about my absence.

I can’t get back to sleep now because all I keep thinking is what the hell was that kid talking about this morning?

Wait did he say cops?

Shit I think he may have mentioned something about a charge.

I head downstairs I need coffee stat.

I finally hear back from the kid who fills me in on the entire story and all the gory details.

I won’t share, you’d thank me if you knew what I was leaving out.

The kid is talking to me from the class phone but he’s in the hallway. Even from home I tell him to lower his voice so he doesn’t get into trouble.

As he fills me in detail by excruciating detail I’m already planning how the problem solving will go.

I need to get in touch with my team. We gotta be preemptive in this. Gotta get ahead of the chaos.

Before I let him go, I make sure he’s got food at home.

He does but he gets distracted because the bell between classes has rung and he starts talking about all the cute shorties in the halls.

I remind him that I’m his youth worker not his homeboy.

He laughs and says he knows but I’m his closest (albeit) only youth worker.

He keeps talking about the shorty at the locker so I ask if he’s still trying to win back his girl, he doesn’t see the connection.

I tell him I’ll see him tomorrow.

I call my team one by one to fill them in.

Unlike you all, they aren’t exempt from hearing all the details.

I don’t even stumble over my words when I give them the inside scoop. They like me aren’t surprised by where this story has gone.

We predicted this outcome but no one really listened.

We tell each other that tomorrow we will detail with it all.

We work out a bit of game plan.

We hang up telling each other that tomorrow we will be there.

That we will do what we have to do to get through the morning classes and our afternoon meeting.

I hang up and I start thinking about my job and this little team of mine. And how we are all so isolated from our respective coworkers.

No one else really gets it like my team does.

It’s like some kind of platoon back from the war, you tell people the shit you’ve seen but they just don’t get it.

But your little team, well there’s a mutual understanding that if we don’t laugh at some of the shit that goes on, we’d go mad.

So anyway this triad of mine, they’ve got my back and me, theirs. And tomorrow we’ll suit up to face another day in a contained classroom with these kids that sometimes love us, sometimes hate us and sometimes just want us to shut the fuck up so they can go home.

And those sentiments, I am quite sure we have each muttered to ourselves on any given day.

Another day, another💲

The mind is a terrible thing to taste..

It’s too much

It’s too hard

It hurts too much

I’m too weak

I’m not strong enough

It isn’t worth it

You’re too sensitive

You’re too moody

You think too much

You need to let things go

They think I don’t try hard enough

They think I do it to myself

They think I should just get over it

They think I always feel sorry for myself

Mostly they’re right

I don’t want to feel like this forever

I can’t keep doing this

I’m so tired of all of this

I’m too weak for this shit

I’m just so tired

I wasn’t made out for this

Maybe if I didn’t spend as much time as I do battling the thoughts in my own head

Maybe if I wasn’t so hard on myself

Maybe if I didn’t compare myself to others

Maybe if I didn’t get lost in this sea of maybes

I can’t even imagine telling the youth I work with the same things that I tell myself every single day

And if they told me they were having those very same thoughts

I’d help them tear down every last one of those deceitful thoughts

I’d tell them that sometimes their minds play tricks on them

But that they have the power to change their way of thinking

By using evidence to prove those thoughts wrong

I’d say ‘you say you’re not strong

But you survived x, y and z’

And they’d look back at me not believing a word

And then I’d say

‘You say you don’t want to feel this way forever

What are you doing to change the way you feel? ‘

They’d hang their head, and reluctantly answer that they’re not doing anything to change their feelings

I’d respond with ‘You know it won’t happen over night

Sometimes the things that will make you happiest, take time and a lot of effort to get’

They’d look back at me

And I could see in their eyes

The minute

The second

That it clicks for them

That they get it

And they know that I’m right

That they have the power to change their lives

They hold it in their hands

They’ve always had it

They’ve just got to find it

And yet

Even after all these years

And all this time

And still

I can’t

For the fucking life of me

Find it in myself