‘See my shadow changing, Stretching up and over me. Soften this old armor. Hoping I can clear the way By stepping through my shadow, Coming out the other side. Step into the shadow. Forty-six & 2 are just ahead of me.’ TOOL

With gradual acceptance comes mounting frustration at the world around you

The world isn’t as comfortable as you aspire to be with your disease (s)

Your spouse won’t stop looking at you with sad eyes

Thinking of a time that will never exist for the both of you again

Your parents always worrying about you

Worrying about how you’ll survive after they’re gone

Your siblings will always simultaneously resent and pity you

All the attention is on you and all the prayers are about you

Your friends have grown so accustomed to your absences

That when you’re ready to be a part of the world again, they’ve forgotten your name

Your workplace doesn’t have a place for you anymore

Posting an ad for your job in hopes of finding someone less ‘sick’

Society doesn’t realize how badass you are

They can’t see past the fact that you need a cane in the first place

The reflection in the mirror looks back at you with weary eyes

It still sees you as broken and in need of saving

Nobody can see the heart that is slowly being stitched together

No one can see the magic that is your brain learning how to accept life as it is

One painstaking tiny miracle at a time

It’s only you

Only you can know how far you’ve come

Only you know about the reparations being made

Only you can know that the old you died in June of 2013

All that’s been left is a shell of a person lingering between two worlds

Not sure where to go

Full of pain and confusion

So with a touch of sadness that will always remain

You finally let that old you go

You don’t watch it get carried away by wind and dust

It’s not your responsibility any longer

You can walk away now

You don’t have to feel the burden of obligatory regret for what you couldn’t give the old you

You can finally fucking breathe

This is your time

Stitched up and with a brain still getting it’s shit together

You’re going to make this world yours

Like it was always meant to be

Advertisements

‘It’s Not What You Look At That Matters, It’s What You See.’ Henry David Thoreau

Sitting by the water

He takes out his notebook and a pen

He starts addressing the letter

‘Dear Mom and Dad’

He stops

Sits

Staring out at the sea

Reminded of all the times he had sat in this very spot before

Always looking

But never really seeing

Always searching

Never finding

Today is different

Today he is thinking of his parents

Thinking of what to write in a letter that will only be received after he’s gone

Thinking of what, if anything, will bring comfort to his parents

He doesn’t want to think about the sadness they might feel

He prefers to think of their future and how happy he thinks they’ll be without worrying about him all the time

Should he write that, he ponders

No

That sounds like he’s doing this because of them

And he’s not

He’s never done anything so much for himself before

He starts again

‘Dear Mom and Dad,

I love you both

I’m sorry for any grief this might cause you

But I’m doing this for me

I can’t stand it anymore

I hope one day you can understand that.’

He stops again

He rereads his words

He cringes

The words sound so hollow

It all seems so pitiful

That’s not what he wants to convey

This isn’t a sad ending

He needed this, he thinks

Surely they have seen that

Maybe there’s no way to write that out

Maybe there’s only a way to feel it

If only he could bottle up an emotion and attach it to his letter

He feels frustrated

Fuck this isn’t what he wanted today to be about

This day was supposed to be a happy day

He shouldn’t have waited until today to write this

This is good really

The end of a miserable life

He tears up the letter

He tries again

‘Dear Mom and Dad,

I’m doing this for me. A new beginning.

Love,

Your son’

He reads it over several times

It’s as good as its gonna get

He doesn’t have a lot of time left

He goes back to his lonely apartment

Filled with stuff he has no use for anymore

He wonders if he ever really enjoyed any of it

He doesn’t care if thieves get to it

He finds an envelope and puts his parents names on it

He had made plans with his parents for tomorrow

They are going to pass by

They’ll knock until they realize the door is unlocked

They’ll wander in

Walk around

Call his name

They’ll see all of his things scattered around

Remnants of a life he never really excelled at

Leftover pieces of a life that he could never really call his own

Things he won’t need anymore

The letter will be on the table

They can’t miss it

He wonders if they will figure it out before reading the letter

He hopes in someway they saw this coming

They had to

It’s been a long time coming

He doesn’t really care to say his goodbyes to anyone else

He just wants to be gone

Finally

He goes into his bedroom

There is a small bag in his closet

That he bought especially for this momentous occasion

He feels positively electric

His hands are shaking

He unzips it

Peeks inside

Making sure everything he needs is still there

Even though he has checked and rechecked a million times

He hasn’t slept in a few days

Too full of anticipation for this day

He takes a seat on his bed

Thinking about this last year

He’s exhausted and giddy at the same time

Giddy…he thinks

That’s the only time he’s ever used that word to apply to himself

He is so ready to take this leap

He gets up

Grabs his bag

Walks to the front door

He won’t need his keys where he’s going

He turns back

One last look

He feels nothing but relief

He shuts off the lights

Closing the door behind him

He’s ready

He takes a big breath

This isn’t an ending

He exhales

It’s his new beginning

One foot in front of the other

Not longer just about walking away from an expired life

But towards a new one

Just waiting to be found

‘It’s not what you look at that matters, it’s what you see.’

Radical Self Acceptance

(This was from my MS support group I chaired last week)

Fighting reality only creates suffering. While pain is inevitable in life, suffering is optional. “And suffering is what happens when we refuse to accept the pain in our lives,”

Close your eyes and think about being diagnosed with MS

Think about the difficulties you encountered

Think about the hurt, pain and suffering you’ve experienced because of it

Think about all the medications and treatments you’ve tried

Think about how many times you’ve gotten your hope up for some miracle cure only to be let down

Think about all the time you’ve been angry, depressed or lost because of having MS

Now open your eyes.

Look around

You still have MS

So does everyone else in this room

Nothing has changed

simply because you deny it exists.

It is still there, waiting for you to deal with it.

“When you open yourself up to accepting the present moment precisely as it is, with no judgments, you are free to look at all of those puzzle pieces of the present moment and start to piece them together. “

What if instead of having all of that, you simply decided to radically accept your reality that is having MS?

Acceptance isn’t giving up

It isn’t resigning yourself to the illness

It is simply accepting that whatever is happening is happening

Acceptance is about letting go of the person you thought you were and the life you thought you had and making the most of the one you actually have

Some helpful strategies to practice radical self acceptance:

Acknowledge and learn how to cope with negative thoughts and feelings

Rewrite your story

Find activities that you enjoy

Spend time with the people you love and that make you happy

Note:

I’m not even close to being there yet…but I want to be

‘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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

‘Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.’ Maya Angelou

I was on the phone with my caseworker from my private insurance who will be in charging of making a decision in my claim for Long Term Disability

We were on the phone for over an hour

An hour in which I often felt I had to defend my illnesses

An hour in which I often felt the need to justify my request

An hour in which I stumbled over words that would have once come so easily to me

An hour in which my body ached and my eyes felt tired

I’m stuck between an employer who tells me I’m not capable and an insurer who tells me I’m not sick enough

I’m stuck between wanting to work and wanting to be off

I’m stuck between wanting to fight and wanting it all to just be over

So here I sit

Yet again waiting for someone else to decide my fate

While I wait

With my heart in my throat

With my stomach in knots

Without hope for a better tomorrow

Without any hope

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

‘Anything that lights your world, leaves it dark once it’s gone.’ Ashly Lorenzana

So I’m trying something new

It’s a gratitude journal

It seems idiot proof

Every day write down anything you are grateful for

Simple

Except it got me thinking

Thank you anxiety

What the fuck do I have to be grateful for?

All the shitty things rushed in first

Pushing away thoughts of anything else

But after a few minutes I started thinking in simplistic terms

Sure some people might think I’m being melodramatic of course others have it worse

That’s relative though

An individual’s pain or happiness is unique to them

It doesn’t have to be a competition

Or a race to the finish

It doesn’t have to be grand gestures or anything tangible

It can be as minimalistic as being grateful that I have my two dogs to keep me company

Or maybe it’s that a friend sent me a message via social media

Of course I wish I could be like one of ‘those people’ who don’t need reminders like this

But c’est la vie, right?

Maybe I’ll always be the person who thinks of all the negative things life throws at her, before she can see anything good

Maybe I’ll always be the person who needs to write out the things they have to be grateful for, before she even realizes they exist at all

And maybe that’s the point of it all

It’s because of those reasons that I can not only find things to be grateful for

But I can see them for the gift they are

Take vision for example

How often people take it for granted

Reading and watching your favourite show and seeing the sun set or rise

Like we have all the time in the world

Not realizing the beautiful luxury that it is

Never knowing how lucky we are, to bare witness to something that others can only dream of

Only understanding how valuable until it’s all been taken away

With only memories to write down in a gratitude journal

Maybe I’m the person who only gets it after it’s gone