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.

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‘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

Someone Like Me

One more day to go

Tomorrow is my first day of Round 2 Lemtrada treatment

Today is my prep day

I am prepping meals and snacks for the infusion days

And dinner meals for the week

I need to take the dreaded Prednisone this afternoon to help my body get ready for the infusion

I have a roster of family coming with me on each of the three days

I feel ready

More than that

I want it to be done already

It’s kind of like putting your life on hold for a minimum for one year

With the possibility of extending that

This year has not been kind to me

And I’ve had difficulty in dealing with everything from work to my health to my finances and personal life

What doesn’t kill you…right?

Having said that I do feel better prepared for around 2

I know what to expect and what not to expect

And I now know that nothing good ever comes without sacrifice

So if it means another year of my life on hold to make the next several years hopefully better…

So be it

I have discovered I am the type of person who needs something to look forward to

A purpose

A goal

A reward

I find it motivating and challenging and I like overcoming challenges

I thought it would be helpful to me if I made up a list of things I am looking forward to

It makes this more tangible

And it makes this feel worth it

Here goes:

  • I want to go to Salem for Halloween this October
  • I want to go to a beach somewhere this summer (sorry Ontario, with an ocean)
  • I want to plan a trip to a place I’ve never been like Ireland or Portugal within the next 6-9 months
  • I want to find a job where I feel valued and where I feel like I’m doing something goodI want to become reacquainted with the city I love by exploring different neighbourhoods or rediscovering old neighbourhoods
  • I want to take up photography as a hobby and incorporate that into this blog
  • I want to make this blog into something…more
  • I want to see and spend time with the people I love and who make me smileI want to spend my nights sharing stories with J. where we can laugh and look forward to the future that is open for usI want to make my body and mind healthy for the first timeI want to remove unhealthy toxins from my life and body (looking atcha Paxil
  • I want to get a tattoo to immortalize this experience as is the biggest challenge I’ve ever faced

And this last one, is probably the most difficult and simultaneously the most important one to me.

  • I want to feel at peace in my soul. In my mind and in my body. I don’t expect happiness 24/7 but I want to know that it is attainable even for someone like me…

In the chaos of moving and health shit, life keeps throwing curveballs my way.

<Below is response to my employers email demanding I complete the medical documentation regardless of being on a leave (that they not ‘properly authorized’ and with treatment approaching which will hopefully change my physical health>

Hello Employer,

Thank you for your email. I am  seeing my doctor on Thursday and will request that he fill out the forms. However I would like to note that I feel that having him complete the forms when I am obviously currently unfit to work is a waste of time. As of right now he has clearly indicated that I am not medically able to work. So any medical documentation done right now will be inconsequential and disregards the purpose of my treatment which is to get better. Regardless of my personal opinion and his professional one, I will ask that he fill out the paperwork again.

As EMPLOYER have been aware of since last year, I have treatment coming up very soon and it has been insensitive and has showed a lack of compassion in demanding that I do this before my treatment has occurred. EMPLOYER has repeatedly reminded me of my contractual obligation while showing no insight to the obvious difficulty that a long time employee of EMPLOYER is undergoing, while attempting to embark on a second round of chemotherapeutic treatment for the sole purpose of improving their physical health. The forms EMPLOYER have demanded ask questions that show no clear understanding of what Multiple Sclerosis is and how it affects its sufferers. 

I had hoped that an agency I loved working for and hoped to continue to work for a long time would have showed me more compassion and empathy instead of making me feel like a burden and drain on their resources. At this time all I can say is I’m disappointed with EMPLOYER, which as far as a contract goes, I understand means nothing. I have learned my worth as a result of having several years of experience in this field and as such have a thicker skin than most, however I hope in the future EMPLOYER can show its employees more understanding and sensitivity than it has shown me, because having a chronic and incurable illness is hard enough. Once again, I will request my doctor complete the forms EMPLOYER is asking for. 

Angela Gagliardi

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