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…
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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

What about my right to ask for accommodation when I feel I need it?

Email from employer:

Your email does not address the essential point of my February 22 email to you, which was a request for medical information. I believe my email to you was quite clear in advising you that BLANK requires medical information from your physician, not only so we can determine whether BLANK can take any steps to accommodate your situation, but also because BLANK requires the medical information so that we can understand whether you are going to be capable of regular full-time attendance in the future. Your email states that you have not requested an accommodation. Nevertheless, and even in the absence of a formal request for accommodation from you, BLANK has a duty to accommodate any employee with a disability. We are trying to do so, and that is one of the reasons we are requesting medical information, along with a secondary reason for the medical information, so that we can assess our ability to adequately staff the Section 23 program and meet our program obligations.

Whether you have specifically and formally requested an accommodation from BLANK or not , the fact remains that BLANK is entitled to have medical information from you to justify your pattern of absence from work. Furthermore, while you have not formally requested an accommodation, you have done so indirectly by , in essence, requesting that you be allowed to continue to maintain your full time position, when you have a two year pattern of less than regular full time attendance .

As I mentioned in my February 22, 2018 email to you, we acknowledge that we did receive a medical note from Dr. dated February 8, 2018. However, as I mentioned previously, it appears from His medical note that Dr. may not be aware of the extent and frequency of your absences.

It’s is BLANK view that Dr. has not correctly characterized your current ability for full-time work. Dr. states that, generally, you are capable of full-time work with regular duties. However, your attendance record has not demonstrated this. Instead, over the past two years and two months, you have been capable of only irregular attendance, working an average of four days per week. Full-time work is five days per week and your attendance record demonstrates that you have not been capable of full-time work. As mentioned above, we do understand as advised by you, this is due to your medical condition. Your doctor’s opinion that you are generally capable of full-time work is not consistent with your pattern of absence.

In any event, the medical you provided dated February 8, 2018 does not provide BLANK with sufficient information for us to assess whether you will be capable of regular full time attendance in the future, and what your prognosis might be. Therefore, we request that you return to Dr. for a follow up appointment and specifically obtain the following medical information in written form from Dr. and then provide it to us:

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 BLANK to allow us to better accommodate your situation.

Angela, please note that we require the above information from your physician so that we may assess your workplace restrictions, needs and any requirements for accommodation, as well as our ability to ensure that we meet program needs, which are five days per week.”

You have stated that you are unclear about what BLANK is trying to achieve by highlighting your absences from two years ago.

Let me try to clarify . What we are trying to achieve is to obtain an understanding from your physician about your pattern of absences, and in particular we are trying to determine whether you will be capable of regular full-time attendance in the foreseeable future. That is why we have requested that you provide to your physician a copy of my February 22 email, so that your physician can answer the five questions BLANK has asked, as well as complete the form we have delivered to you. To repeat, BLANK requires this medical information from your doctor so that we can understand any accommodation issues or obligations BLANK may have toward you, AND ALSO so that we may understand whether you will be capable of regular full-time attendance in the foreseeable future. BLANK is entitled to that information and you are contractually obligated to provide it.

We have referred to your absence pattern for the past two years because it is a critical fact in our decision-making processes. Review of your attendance records, has identified that over the past two years, you have been unable to attend work 5 days a week consistently. BLANK has a right to expect that its employees attend work on a full-time basis regularly. Your record demonstrates that you have been unable to do so, and you are therefore not in compliance with your contractual employment obligations. As I mentioned in my last email, however, BLANK does understand that you have a medical condition which is preventing you from regular full-time attendance, as you identified in our meeting in January 2018. We are not faulting you. Nevertheless, BLANK is entitled to know whether this absence pattern is going to continue, or whether it will improve or get worse. We need this medical information to assess our staffing and meet our program needs. Currently, your attendance pattern is negatively impacting AYSP’s ability to meet its program requirements.

After we receive the requested information from your physician, BLANK will review it, and BLANK will then be in a better position to understand the likelihood that you will be capable of regular full-time attendance in the foreseeable future, or not, and we will also be in a better position to assess our staffing needs in order to meet our program requirements.

I requested in my February 22 email, further medical, which you have yet to provide. Please re-attend at your physician as soon as possible and obtain in written form, the medical information we have requested. Please advise me when your next scheduled medical appointment is so that I may have an understanding of when BLANK can expect to receive the requested medical information.

I trust that the above information, together with my email to you of February 22, 2018, have clarified BLANK position, and has explained why we are requesting medical information. We look forward to receiving that medical information as soon as possible.

Finally, we are sorry that you are feeling stressed. However, I can assure you that we have no intention to pressure or discriminate against or harass you. We do not feel it is pressure, discrimination or harassment to require that you provide us with medical information that you have a contractual obligation to provide.

That last part just feels like a slap in the face.

Amidst the chaos of my life

I remembered that unlike so many I like change

I’m not afraid of change

I like to take chances

My school transcript is a clear indication of that

I remember my dad once, while driving me around

Said to me ‘I respect that if you don’t like something you leave it’

I was surprised never thinking that he would have such an open mind

I’ve done it with jobs too

It’s never been the job that I loved in the first place

Instead it’s the kids I’ve been lucky enough to work with

Unfortunately sometimes the job steals your soul and the right thing to do is move on

The only thing I miss when I leave a job are the young people I met

Anyone who knows me

Know only too well that I change my hair very often

It has nothing to do with the superficiality of needing a new ‘do

I like the feeling of reinvention

The feeling of starting over

The newness of something

Before it can get fucked by life

I think it’s what adrenaline junkies feel when they do extreme sports

The feeling of being alive

It makes me feel alive

Some days

Most days

Life is colourless and bland

I go through life medicated to ‘control’ so much of the chaos in my brain

It’s not to say I don’t feel things

I do

Probably still more intensely the most people

Even with the numbing of the drug cocktails

But it becomes like a life line on a machine

You can see the ups and downs and it’s got a pattern to it

Until

A change is approaching

Then it stirs everything up

The pattern dissolves into chaos

And chaos is a good thing

A great thing even

It’s the very thing that occurs before a great change is made

The possibilities are endless

It reminds me that being normal is boring

Being normal is being complacent

Avoiding change is being afraid of the unknown

Not knowing what’s out there and being afraid of it anyway is ignorance

The unknown is meant to be explored

To find the hidden gems that the rest of the world can’t or won’t see

Those gems may be so hard to find

So rare to hold

But damn when you do

It is simply indescribable

Unforgettable

I get that

It must be that chaos is in my heart and in my blood

After all

I too am anything

But

Forgettable