‘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.’

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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

‘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

‘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

‘Condemn me, it does not matter. History will absolve me.’ Fidel Castro

Some days I’m so consumed with jealousy of every single person who is healthy

I think about all the ways their lives are easier

Not that they don’t have struggles

As we all do

But most people’s difficulties aren’t compounded by an incurable illness

Some days I just can’t wrap my head around even having MS

5 years later and it still feels surreal

Like this just can’t possibly be my life

Some days I feel lucky to have made it this far in life

Having found a life partner and having had a career that I loved

Today, however, is not one of those days

Today is the sort of day where I feel bitter and hardened by what life has had to offer

Today is a day where I feel every single ache and pain and can’t find relief in pill, word or song

Today I can’t find a connection to a single soul out there in the universe, no matter how hard I try

So I look forward to the night

The night when I can sigh with relief that this day has finally ended

The night when I can finally lie down in bed

Surrounded by comfort and pillows and close my eyes

Not knowing what type of day tomorrow will bring

Stuck feeling somewhere between being a hopeful masochist or an optimistic dreamer

Unsure which one I want to be

Wondering which is worse

Still not knowing which will ruin me in the end

‘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