‘Deep in the heart of my soul, I’ll feel so glad to go.’ The Smiths

Disclaimer: I write this blog as a form of release. It’s cathartic. Please don’t tell me my feelings are wrong. This isn’t the place for that.

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What if this is as good as it gets

I keep replaying that in my mind

My heart doesn’t want it to be true

It lies to me

It tells me that it’s gotta get better than this

It weaves stories of a made up future that doesn’t include pain and sadness

And most certainly doesn’t include a disease as fucked up as Multiple Sclerosis

It knows just what to lure me with

It doesn’t bother with lies about riches and fame and fortune

My heart shows me a future that is serene

Days filled with thoughts that don’t make you feel like you’re going crazy

Nights slept through instead of worrying obsessively about what will happen next

It shows me a calm that I have never known in this world

It shows me a future that I instinctually know will never be mine

My mind is always there to remind me of what I already know

The heart doesn’t listen

Like they say

The heart wants what it wants

And so that traitor continues to beat

Thump thump thump

Sometimes the pounding is so loud and it reverberates through my entire body

Callously letting me know

That it’s still there

My mind always racing

To catch up to the beats of my heart

Ensuring it’s repetitive voice isn’t lost

So I continue

Another day filled with my heart and mind at war

Another day spent fighting and trying to drown out the noise

That nobody but me can ever hear

Still I wonder if it’s easier

To fight battles that exist outside the walls of your own skin and bones

So now I imagine a future

Without the lies of harmony and calm

With an enemy on the outside

My heart and mind finally calling a truce

And letting me Rest In Peace

The Pincushion Queen

I’m filling out a self exploration journal

It asks me questions that make me think

I mostly like it

Until it stumps me

It wants to know three thoughts that made me smile

I sifted through the ashes of the day that was coming to an end

Searching for the remnants of a smile

Surely there had to be something

Instead I walked through empty hallways in my mind

Like an old home

Abandoned

There were cobwebs where laughter should have been

There were dusty corners where smiles should have hidden

I felt frantic in my search

It had to be there

Hidden under the tarps

I needed to find the right moments to erase the sadness in my heart

From room to room

Floor to floor

I searched

For something to hold onto

I looked around at a strange home that I’d never been to

But like all empty dilapidated homes

The previous owners had taken the memories with them

Maybe tomorrow

I’ll get lost in my old home

I’ll find all the smiles and laughs

That have gone missing throughout the years

Maybe tomorrow

I’ll write it all in my journal

Hoping it’ll fill up the emptiness in my mind

Wishing that my heart will be so filled to the brim

That the sadness won’t have any place to slither in

And I can tape the pages of my journal

All around my broken bits

Covering the seams to keep all the happiness locked inside

‘If you expect the world to be fair with you because you are, you’re fooling yourself. That’s like expecting a lion not to eat you, bc you didn’t eat him.’ Unknown

With all this time waiting

I’ve done little else

But think

Thinking of what I could do if my application for Long Term Disability is denied

Thinking of where I could feasibly work in that case

I know I have a propensity towards the bleak but I just don’t see an alternative working environment aside from being my own boss

Try as I might

I just cannot envision a supervisor being understanding about my ‘chronic absenteeism’

Having never been in a managerial position (shocking, I know) I can’t say how I would be if one of my employees was like me

A good worker but with a spotty work attendance at best

I don’t know how many people would be understanding when it actually came down to it

In theory, everyone can be a Mother Theresa

Reality as we know it

Is a very different story

I think the premise behind this is what led me to becoming a youth worker

The world can be hard

The world can be cold and lonely

And I wanted to give the youth I worked with, a soft place to land

While giving them truths and not sugarcoating life for them

I would create a space where they could count on being supported through mischief, behavioural issues, criminal activities, mental health struggles and in just being themselves

I know coddling isn’t an answer

Nor was it my objective

It was, however, my goal to create such a space they could make mistakes while being in

Getting the support and assistance from me while they were there

I won’t pretend that I was a proud momma every time a youth did something negative

I wasn’t

I’m sure I doled out plenty of lectures and rants and get-your-shit-together-kid lines

But they knew I’d still be there for them in the end

I like the thought of that so much

That I sometimes fantasized the rest of the real world is like that

Not fairytales and butterflies

Real with disease and pain

But with support from all sides

Maybe this is why I’ve struggled so much with work, the health care system and so on

I was hoping that the support I provided to youth

Would somehow be the support I in turn received

Not because of some karmic balance

But because I still believe that people are inherently good

I hoped

That through dark and cold times

I would know there was a support system behind me

Not just made up of prayers and well wishes

But of doctors who would ask questions

And ophthalmologists who would look for answers

Maybe with neurologists that would care about how the disease they’re so focused on, also affects my daily life

Perhaps that’s why I’m chronically disappointed and hopelessly let down

If I, an underpaid Youth Work and Univerisity dropout, could find it within myself

To still care

Years after hearing so many sad stories from youth day after day

Along with my own messed up mind

I guess I just don’t understand why someone who at some point got into their field to ‘make a difference’ just stopped giving a shit about the people behind their diagnoses

I know it’s not easy

With insane caseloads, and not enough hours in a day

Not to mention family and kids and taking out the garbage and just life

I really do get it

And yet I’m still left wondering why I’m not enough to care about

At the end of the day

How do you just close up shop and ignore that person you just saw

Who cried from the depths of their soul and whose desperation for help surely must have hung in the air

Like cigarette smoke on a cold winters morning

Long after they’d gone

When you walked back into the office the next day

Smelling the acrid air

Did you think about them?

Or did you just open a window?

To usher my haunted remains out

And let in your warm sunny day

‘False Hope Is Just A Game Of Russian Roulette, I’d Rather You Just Open Fire.’ – K. Piper

I had a brief moment the other day

Where I felt like I was going to get answers and help

The solutions to persistent eye pain and nausea seemed just within my reach

I fell asleep last night feeling relieved and excited

About finally getting some help

I was almost giddy

If you can imagine that…

I woke up and got ready with my stomach in knots

I felt nervous and apprehensive

Unsure what to expect

See and herein lies the problem with hope

It hurts when it gets snuffed out like a candle

It hurts more than the very reason you needed hope

The ophthalmologist didn’t hesitate to shut down a plausible explanation for my symptoms

Without suggestion as to where to go from this point

I left the clinic

Dejected

I came home

Closed the lights

Crawled into bed

Remembering why hope is a nothing more than a dangerous game of Russian roulette

And I’ve never liked the odds

Disclaimer:

I write because it feels good. I write because I have stuff to say. I write because I like seeing my words laid out in front of me. I write with myself in mind as the audience. I don’t write for compliments or pity. I don’t write to see how many likes or follows I get. I write the way some people need a cigarette to relieve the tension. It needs to come out. And it will. One way or another. This just happens to be the more positive way for it to do so.

I’m in a mood

The kind where I’m starting to doubt whether or not the treatment was even worth any of it

I’m approximately 2 months and a week post Round 2 of Lemtrada

I’m really tired

I don’t think I’ve made it past 10pm more than a few times

I’m nauseous more often than not

My eyes hurt

Back and leg pain

The laundry list could go on

I’m tired of feeling shitty

I’m tired of complaining

I’m frustrated

I’m irritated

And I’m sad

The me in my head

Isn’t this person

She’s out there living life

Not holed up in her condo

Hiding from the oppressive heat

Writing and feeling sorry for herself

That makes me so angry and disgusted with myself

Like I don’t even know this person anymore

I want to shed this old skin

This body

This mind

It clearly has been dysfunctional from the very beginning

Hell even upon being born

I couldn’t go home with my mom

I had to wait in an incubator

As if to prepare me for the outside world

That too

Clearly didn’t work

“We looked for the easiest way out: a separate reality.” ― Paulo Coelho, Veronika Decides to Die

My hair is falling out

My eyes hurt

And I’m trying to remind myself why I did this fucking treatment

This weekend passed by in fits of long naps

When I’ve been awake, I feel tired and irritated

This is the stuff no one tells you about chronic illness and the shit you do to your body to ‘get better’

I’m almost two months post Round 2

I did my blood work

With much greater ease

The first month of the next five years

There’s so many thoughts rumbling around in my head

And even trying to make sense of them in writing isn’t doing the trick

I went to the optometrist and while my vision hasn’t gotten worse she was concerned over my eye pressure and appearance of optic nerve

She said it didn’t have anything to do with my optic neuritis episodes

Glaucoma?

Being sent to ophthalmologist for more tests

I went to the group again on Friday

The topic was the difficulty in decision making

Funny since I’m struggling with this long term disability decision

I came home feeling understood

Something that’s always evaded me

It was a wonderful feeling

That I’m trying to hold onto

But it’s just out of my grip

Like the Banksy art on my arm

I’m reaching for it but it’s just passed my reach

What is it about a death that makes you evaluate and question everything?

I think it must be the finality of it and the possibility that each of us might pass away before we’ve done/said/felt something we have determined to be important.

And if we fuck it up

That’s it

There’s no take backs

No do overs

There’s this one chance at life

Yet, to fuck up is inherently human

We make mistakes

Sometimes we learn from them

And sometimes we keep making them over and over again

And yet to say at the end of your life (however long that might be)

That you have lived and will die with no regrets

Is kind of a beautiful thing

A lie undoubtedly

But indeed a beautiful thing

Much in the same way that fairy tales are beautiful

Or heavenly tales of the after life

Each of those beautiful in the way that can never be true

Real life stuff isn’t beautiful in such an edited way

It’s messy

And it doesn’t play out in such a fantastical way

There’s not a before

Not a once upon a time

Not a singular event that changes us

And then an after

Not in such a seamless order anyway

There’s lots of before moments

Lots of events that are detrimental to who we are

Lots of events that are completely insignificant in the greater scheme of things

But there’s not one final culminating scene in which the fairy tale closes

We don’t know when it will end

We don’t know when our life is over

And so we live it the only ways we know how

We segment this great big life into days and weeks and months

Not knowing when we will run out of them

We go on this way

Until we simply have no days left

And the story ends

Sometimes abruptly and with a bang

Sometimes quietly and with a whisper

And each of us never knows how the story ends

Up until that final moment

What will be replaying behind our eyelids as we take that last breath?

Will it be relishing our own versions of the happily ever after we lived?

Sprinkled with some regrets but overjoyed with all the things we did do

Or will it be filled with visions of a life that we never really lived?

Weighed down with regrets that could have been chances if not for the fact we didn’t take them

Once upon a time I knew how I wanted my story to end

But my head got stuck somewhere along the way

And I’ve become stilted by some life altering events

And now I can’t reimagine a happily ever after

That includes me

Let alone

One that stars me

The Cowardly Lion’s Great Lie

The cowardly lion

Wanted nothing more than courage that he didn’t believe he possessed

He joined a rag tag group of travellers

Searching for a magical cure for his allusive cowardice

Together he and his fellow travellers

Fought through witches and flying monkeys and haunted forests

Hoping and fighting to find the one thing he wanted more than anything

In the end, the lion learns that he always had courage

He just needed to find it within himself

Like the scarecrow and his brain

The tin man and his heart

It was always right there within themselves

The story ends and they all happily walk down the yellow brick road of life

Each of them happy and content they’ve found the things they’ve so long desired

The audience smile and titter amongst one another

That this is a story from real life

One just needs to believe in themselves

But I wonder what would have happened

If the cowardly lion learned he would never find his courage?

This mysterious thing was never to be attained

The courage he yearned for would continue to evade him

Mocking him cruelly

The lion that should be so brave and strong

Is nothing but a great big disappointing coward

Just like when we disappointedly learn that the wizard is nothing more than a regular human pretending to be something he will never be

The lion will be forced to continue to wear his warrior costume

The whole world watching

All the while the lion knowing he is nothing but a fraud

The scared cowardly lion just waiting for the entire world to find out what he’s always known

That he can dress it up

And make it look real believable on the outside

But if there’s nothing inside him

The facade will all fall apart

And he’ll always be remembered as that scared cowardly lion

Who couldn’t, no matter how much he wanted, live up to what he was meant to be

To what he always wanted to be

The courageous lion that doesn’t exist

‘Courage, above all things, is the first quality of a warrior.’

All I can see is the empty space where my ‘motivational’ affirmations once hung

All the words I thought I’d need to get me through this dreaded Paxil withdrawal

Now discarded and out of my face so I don’t see the glaring reminder of another failed attempt

But it’s likely I didn’t stand a chance even before I started

I hadn’t had a full blown panic attack in a long time

Until today, that is

All week I felt it coming

Making me irritable and antsy

But I proceeded forward with my Project Paxil Taper

Each day I told myself I didn’t feel worse

I didn’t feel anxious

It was fine

I was fine

But I was lying to myself

I don’t know if it was the anticipatory anxiety that got me or the effects of decreasing Paxil

I don’t think I’ll ever know

I reached out to professionals

Asking for help and support in this withdrawal process

But again and again I was met with lack of resources and ambivalent sympathy

Today it was too much

I closed the blinds in the condo

Tried to distract myself with audiobooks and tv and music and extra long hot showers

And all the while I could feel it’s suffocating grip on me getting stronger and stronger

Making it harder to think and breathe

I laid in bed and tried to utilize the skills I’ve been taught

But none of them worked

My stomach hurt

I felt nauseous

I could feel the grip getting stronger as I grew weaker

Clammy and sweaty and cold

My headache hurt like it did all week long

And then when I couldn’t hold it off anymore

It overpowered me (like it had done so many goddamn times before)

And just like that

I felt helpless all over again

Like the fucking victim I never wanted to be

I took more Ativan to help it go away faster

Joey was home and tried to quell the rising panic

And the crying

All the fucking crying

But nothing works

My crying louder and harder to breathe

The only thought clear in my brain

Is how this is never going to stop

I will always be at war with myself

My natural instinct is fucked up and no matter how many times I’ve tried it just doesn’t change

It doesn’t matter how tired or how many good days, weeks or months I have

When I’m at my weakest

It rears it’s ugly head

And I’m powerless to defeat it

So all this bullshit warrior can do is cry

Not in sadness

But with pain that comes from deep within me

Because I know

That at the end of the day

Not even 4mg at a time

Not even with support

Not even with CBT and all the other therapies

That I still can’t beat this

It won’t matter if I cover my body in quotes and reminders

It won’t matter how much I want this change

How determined I am

All that matters is that I’m still so afraid of my own goddamn mind

I’m afraid of the panic it can conjure all by itself

The derealization, the depersonalization, the heart racing, nausea, can’t breathe feelings that come at me full force

And I just can’t see, no matter how hard I try (and trust me I so badly want to see it)

A time in which those feelings are not a part of the landscape of my life

And that is the most terrifyingly hopeless thought I have ever had

My doctor said to me on Monday he could see a happy ending after all of this is said and done

I won’t lie, I carried that home with me and placed it under my pillow and wished on it every night since

But not everyone gets the happy ending that they want

Maybe this really is as good as its ever gonna get…

The task is in deciding if that will ever be enough

One May Have Good Eyes Yet See Nothing

I started to write an update as it’s been two weeks since my last infusion day…

But everything seemed so trivial when I saw it typed in front of me

There’s so much that I want to say and yet it doesn’t feel like it would amount to much

So I’ll make this brief and say the only thing I’ve really been wanting to say:

I’ve been watching TV like all day every day

The bingeing kind of TV watching

The kind I’ve been unable to do in so long

And I was scared to say this aloud or type it out

But fuck it it’s my blog after all

My eyes don’t hurt

I’ll say it again for the people at the back

MY FUCKING EYES DON’T HURT!

I can’t remember a time when they didn’t hurt

It’s been that long

How crazy is it that I can barely remember the before MS version of me

I’m not foolish enough to think this is permanent

But for now I’ll relish in this moment

Temporary and short lived or not

And if it all comes back in the blink of my eye…

Write. Write until it stops hurting.’

-Anais Nin