‘I Dream My Painting And Then I Paint My Dream.’ Van Gogh

So I did something today

That I hadn’t been able to previously accomplish

I finished an audiobook

No big deal there

That happens very frequently

I should clarify

I finished an audiobook where the main male character has Multiple Sclerosis

I know it might not seem monumental to you

There was no forewarning about his diagnosis in the description of the book

Because in all likelihood

I wouldn’t have given it a listen

I hate to admit that in the past I’d been unable to continue to listen when I got to the point in the story where a character was revealed to have MS

In that instance

I stopped cold turkey

Right then and there

This time around

I had two hours left in an eight hour book

It wouldn’t have been strange for me to not finish listening

There have been many times

Where the romance audiobook character said the word ‘gosh’ too many times

And with only minutes left

I just couldn’t do it and ended that listen lightening fast

Anyway this time

I got to the part where it is revealed the character has MS

I paused the audiobook for a minute

Maybe more

I called Joey to come into the room

Explained the situation

Made him listen to the line

And then

I did something unlike myself

I kept listening

There may have been some tears

The female characters

Not my own

Well

A little my own

But whatever

More importantly

The story kept going

It didn’t end there

With him in a hospital

Talking medical shit with a doctor

The story continued for two hours

Two hours where I continued to listen

I could have stopped

Deleted it

Found something else

And yet I listened to the whole story

Sometimes with tears

Sometimes not

I kept going

I listened until the very last second

I listened until the credits rolled and the audio went silent

And honestly

I can’t think of anything more fucking poignant

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‘Even a happy life cannot be without a measure of darkness, and the word ‘happy’ would lose its meaning if it were not balanced by sadness.’ Carl Jung

I think I could write a story about my life

With a tongue-in-cheek name like ‘The Measuring Spoon of Life’

It would be about a little girl who would carefully measure her happiness by how many nights a week her favourite cousins could sleep over

She would use teaspoons and tablespoons to represent her happiness

When she was a teenager, she learned to measure happiness in dimes and grams

She would use scales and dime bags to symbolize her happiness

As she grew into a young adult, her happiness amounted to how many days in a row she got to spend with her love

For that she used cell phone pictures depicting laughter and text messages filled with flirting

Then when she hit her late 20s, she would measure her happiness by how long she could remain in public without having a panic attack

She would use mood journals and diaries to interpret her happiness

Later in her mid 30s, her happiness was measured by milligrams, and how many Ativan’s she’d had to take

Pill bottles and prescriptions were the perfect illustrations of how much happiness she’d been prescribed

Throughout the story the landscape changed

The young girl grew into a teenager and then an adult

But her objective in life remained the same

The pursuit of happiness

She learned very early on

That happiness only came in small doses

And because of that, it should be treasured dearly

She would think to herself

Maybe it’s so people don’t overdose on happiness

It’s far too sacred to be given an abundance of

In the story of the young girl, she learned early on

That happiness is not going to stick around forever

So she learned to cherish the nights with cousins, the recklessness found in the dimes and grams of youth, the lucky days spent with lovers, the little successes during rough patches

Like all great stories

It comes with a life lesson

Using the girl who measured happiness with spoons as an example

The story warns that if she had so much as blinked her eyes

She might have missed one of the small measured capsules that happiness would hide in

But that little girl was smart

And she knew that one day she might need a dose of her treasured happiness

She knew it would help her

To get through all the hard times that were waiting up ahead

The story ends with that little girl as an old woman now

Suffering through pain of illness, loss and disease

She looks so old and sad

She opens up a memory box

And empties it all onto the bed beside her

Out comes the spoons, the scales, the pictures, the journals, the diaries, the prescriptions

The old woman looks at her life laid in front of her

Instruments of measured happiness

And she’s so grateful

That she held onto all of those small doses of happiness

She thinks to herself

How much she needed to see it, to feel it all over again

She smiles for the first time in a long while

She can’t even count how many times

Those small doses of happiness that she’d held onto

Saved her life

Maybe a thousand times already

And once more

‘Three things cannot be long hidden: the sun, the moon and the truth.’ -Buddha

The thing with chronic illness is that it takes away your sense of hope

See, despite what ‘people’ tell you

There is a very real possibility that it won’t get better

In fact, with a disease like MS, there is the distinct possibility that it can always get worse

Much worse

So, somehow you’re ‘supposed’ to remind yourself on those bad days

That it might be bad now

But it could always be worse

As if that notion is the balm to ease this ache

Sometimes, I grit my teeth and force myself to smile and nod along

Play the gracious and zen like ‘sick person’

Yes yes I’m nauseous pretty much 24/7, my body feels like an 80 year olds and my eyes hurt

But sure to ease anyone’s unease with my illness

I can put on a little dance

And play the part

For like a minute

Or two

Then the act starts to crumble

And like Cinderella fleeing the ball before her carriage turns into a pumpkin

I crawl back into bed and think to myself

That’s not who I am

I can’t make myself be someone else

No matter how hard you might want me to

No matter how hard I might want to

I’ve been there and done that

In the end

I’m always still just me

But I think I’d rather be that uninspiring sick person

Than this caricature of me that makes the rest of the world more comfortable

After all, those caricatures always get tossed out in the end

‘The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom.’ Maya Angelou

I want my soul to know peace while it’s still on this earth

I don’t want to die with a troubled soul

More importantly, I don’t want to live with my soul so conflicted

When it’s time, I want to leave this earth free

And without my soul burdened by regrets

Weighed down by all that could have been

I don’t want to be just another sad story with an unhappy ending

Easily forgotten and replaced

I want to experience the moment my soul is freed

Like a caged bird finally freed and allowed to soar

I want to release the deep sigh that can only come from relief

Extending my limbs into a world I’ve never known

Where my body is no longer forced to be on the lookout

Always tense with worry of what’s to come next

When I close my eyes and drift off into sleep land

It’s vague and hazy

Like a dreamlike state

I imagine I know peace in my heart and soul

Through only a glimpse of what it might be like

It’s magical and beautiful

And completely gone before I’ve even opened my eyes

Only a distant hazy memory of what could only ever be a fairy tale

For a soul as tarnished as mine

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.

MS and the world around me

I went to my first MS support group on Friday

It took me five years after being diagnosed to take the plunge

I was always hesitant to go

I was afraid of what my future might look like

It was a small group of 8 people

With different types of MS and in different stages of the disease

3 in the group had wheelchairs

A few had canes

Everyone welcomed me right away

The topic was ‘Why I’m glad I have MS’

I winced

Ugh this is gonna be brutal

We went around the table

Many described how having MS forced them to slow down

To reevaluate their life and priorities

To focus on the important and forget the small stuff

No one ignored the hard days

One described it as ‘the rabbit hole’

And seeing it open up

But not plunging into the darkness

They talked about fear, sadness,pain, love and hope

I sat quietly until my turn

And I spoke honestly

I told them I couldn’t find anything to feel glad of

Yet

And I couldn’t imagine a time when I would

But I was grateful for the resource of a group such as theirs

I explained to them how I thought I’d finally accepted having MS

Only to realize that I only was acknowledging having it

Acceptance was still a long way off

It still is

I talked about how I was going through a particularly dark time

I told them I was having difficulty reconciling my current life with what I thought my life would look like at 36 years old

I looked around

They were nodding their heads

I didn’t see the same sympathy that I see so often in my friends and families eyes

I saw real understanding

The kind that only someone who’s been there can provide

And I realized it’s been five long years since diagnosis and I’ve been doing this all wrong

I’d chosen to go at this alone

Seeing other 36 year olds living their life

Other 36 years who don’t have MS

And comparing my life to theirs

And coming up short every single time

The people in this group weren’t sad and pathetic

They were living their lives

Enjoying their lives

Maybe they adapted their lives to work around having MS

Maybe their life plans changed

But they didn’t stop living

That’s true acceptance

After I left

I felt a sense of relief

At having done something I’d put off for so long

I also felt hopeful

For the first time in a very long time

Not hopeful for a cure

Or that tomorrow I’d wake up without MS

But that one day I too would be able to finally accept that I have MS

With all that it includes and with wherever it might lead me

And I’ll be okay

I’m not there

Yet

Not even close

But I want to be…

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.