‘Sippin on Chemical Cocktails. Alive to the Universe. Dead to the World.’ Allen Ginsberg

Welcome to today

A toxic wasteland

Once upon a time, beautiful skies now covered in thick layers of smog

Politicians waxing poetic about illegal aliens, poverty and guns

People lining up with arms outstretched hoping to get a handful of something

Plastic celebrities famous for nothing more than their celebdom, and no one will care in a hundred years

Youth huddled in groups with silence stretched out between them the only sound the tap tap tapping of their fingers on their phones

Children losing their chance at an idyllic childhood to YouTube or Snapchat or or or

Crying babies born brought into a world that gives them no other choice but to cry from the beginning

Adults consumed with the need to consume more of everything

The elderly forgotten and dismissed as foolish because they don’t know how to exist in this crazy messed up universe we’ve created

People all around walking so aimlessly, more intrigued with their handheld devices than the meteor showers of chaos happening all around them

Roads and lanes and cities and towns bursting at the seams with people and need and urgency for hope

Losing sight of what’s important

Even with reminders from the enlightened that we’re destroying the earth, humanity, kindness and losing everything pure in this world

Put down your phone

Look around

Blink

And

Before you know it

It’s already gone

And

You can’t remember a time

Before

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‘And sometimes, against all odds, against all logic, we still hope.’

Do you ever think to yourself ‘I just need to catch one break, and then I’ll be okay’’?

The odds seem favourable

Out of the 365 days of the year

How hard could it be to find one good day that will make up for all the rest?

It doesn’t even need to be an entire day

Even one good thing during one day would make everything seem manageable

One day to make the other 364 days worth it

The problem isn’t in the numbers

The problem is that one thing always seems to be just out of reach

It’s illusive

Yet

Still

Somehow

There’s hope

Hoping every night before sleep

That tomorrow will be different

Hopeful that it will be the one day out of the 365 that will make all of this worth it

And so every night before you close your eyes

You take that piece of hope

You immerse yourself in it

You wrap your wish in hope

Tie it neatly with a big bow

And you wish so hard that when you wake

The new day won’t be anything like the last 13,140 days

and counting

‘How lucky I am to have something that makes saying goodbye so hard?’ Winnie the Pooh

Some days the light is so bright that all I can do is immerse myself in it

The pain I usually feel is overwhelmed by the natural beauty the light bestows

Upon me

And all I can do is worship at its sight

Like a pilgrimage to a holy site

I sit in bask in what can only be described as incandescent

The way it heats my face and my body is a reminder of how alive I am in this moment

When I turn away

I am reminded how fleeting beauty can be

And how this moment may not last forever

And there might be a time when I can no longer see the beauty right in front of me

But memories fade and I want proof that this moment existed

I take a picture and write a poem

And hope that something gets imprinted onto my heart

So that I may be able to conjure up these feelings on the days when I just can’t find the light no matter how hard I try

‘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

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…

It only looks hopeless when you can’t see an alternative

No matter how hard you try

Even trying on a different perspective for size

Still the hopelessness persists

This is what scares me

I remember during the height of my worst moments with anxiety

Thinking to myself that the rest of my life would be filled with days of panic attacks and days where I waited for the panic to attack

It would never end

That thought still haunts me

Part of the crux of my anxiety is the feeling of being trapped

Not necessarily in the physical sense of the word

But even where situations feel like I cannot control the outcome

Where I cannot extricate myself

Like a panic attack itself

Or being drunk

Or high

Apparently my depression isn’t much different

The darkest cloud hovers when I cannot see a way out of an empty thought, moment or situation

What starts as a fleeting worry morphs

And I begin to think in terms of ‘always’ and ‘forever’

It’s frightening because it feels like even the sanest part of your brain cannot conjure up a tidbit of hope to tide you over

Not even a little breadcrumb for you to follow towards hope

Life is funny that way

It gives you this stadium of life

And throws these curveballs at you

But it doesn’t provide you with the bat, the helmet or protective gear

Sometimes I scratch my head and wonder how some people win

I question the authenticity

Maybe they cheated

And everyone knows

That the games been rigged in their favour

And I’m just not in on the secret

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