‘The Two Most Important Days Are The Day You Are Born And The Day You Find Out Why.’ Mark Twain

I was thinking how these last few weeks (months?) have consisted of me trying not to feel sorry for myself

Yet I have been failing terribly at that

Then I got a call from a former client

Who had been out of touch for a long while and had me very worried for his well-being and safety

He’s doing great and is being taken care of for the first time in a long while

Which he deserves

He sounded so…healthy

You’re probably thinking ‘how can she tell that via phone?’

After spending inordinate amounts of time with my clients

I know them like the backs of my hands

I know their painful stories as much as I can recollect my own

I cherish their achievements probably more than I do my own

And I can tell when they’ve changed

So seldom do we hear about change for the better

But this is one of those stories

Gone was that drugged-out-to-escape-reality voice

Absent was that voice that carried so much self deprecation and sadness

Instead

I heard notes of pride, happiness and the thrill of looking forward to a promising future

All the things we hope that s young person can feel

I hung up with him, feeling lighter than I have in a long while

It got me to thinking why these last few months, out of all my 36 years, have been so difficult

So full of me trying and failing to not feel sorry for myself

Full of heartache and sadness

I stumbled into realizing that I feel lost

Feeling lost looks a lot like not knowing what your place is in the world, in your family, in your career and etc

The opposite of lost is of course ‘found’

Which is defined as:

to discover, especially where a thing or person is, either unexpectedly or by searching’

So that brings me to this…

Do you believe we all have a purpose?

And what is purpose anyway?

It is defined as:

the reason for which something is done or created or for which something exists.’

So my question really is, what are the reasons each of us are here?

I don’t think of this in terms of fantastic elements like destiny or fate

More so as each of us has the power within ourselves to reach our full potential

Which in turn then meets a ‘need’

This therein becomes our purpose

However, we often fall short of reaching our full potential

Which could be a result of a myriad of reasons (none of which are pertinent right now)

Over the last several months I have learned that I am a person who needs to have a purpose

In order to feel happy

It’s just the way it is

I can’t exist in life in any less of a way

Maybe it would make my life easier if I could

In fact, I’m sure of it

But nobody ever said it would be easy, right?

I’m pretty sure that me reaching my full potential has to do with helping others

Through work

Through sharing my experiences

The method isn’t important at this moment

I guess what is important right now

Is that I need to figure out what will allow me to feel like I’m fulfilling my purpose in life

While accepting that I do obviously have some limitations

Because at the end of the day

I just need to feel like all of this

All of the pain, sadness, difficulties

All of it

Wasn’t for nothing

You know?

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‘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…

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.

‘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!