‘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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‘Do not follow where the path may lead. Go instead where there is no path and leave a trail.’ Ralph Waldo Emerson

Once upon a time

There lived a young woman

She grew up always knowing she was different

Like the odd one out

From being a little child, to a rebellious teenager and now as a young adult

She felt alone a lot

Always feeling like an outsider

One morning, she woke and before opening her eyes

She knew something had changed

As she rose from bed and opened the drapes

She sensed things would never be the same again

She looked outside

The neighbourhood sat in front of her

Nothing seemed out of sorts

She changed and readied herself for the day

Not bothering to look in the mirror

She knew what she looked like

She always stood out

No matter what she wore, or didn’t wear

Walking outside, she looked around

The people around her walked alongside her

Everyone else blended in so easily

She envied them for that

She’d tried once

To blend in

It all just felt so wrong

Like she’d put on someone else’s skin

She made it to work and went to the restroom

She looked at herself in the mirror for a long while

Nothing appeared to have changed

She was still herself

That both made her feel relieved and disappointed

She heard the toilet flush and someone came to stand beside her

In front of the mirror

When she looked beside her

The other woman standing there looked totally unlike her

No similarities at all

That wasn’t unusual

She never had much in common with others

The woman was bland

The type of person you’d forget about as soon as you looked away

The other woman’s reaction was unusual however

The stranger didn’t even seem to notice her

Didn’t bat an eye

The young woman thought maybe she’d seen this person before

Often when new people met her

They stared in shock, in awe, in disgust, in well something

She looked at her again

Trying to remember if she’d met her

It was hard to tell, she thought

The other woman looked like so many others

The young woman looked straight ahead

Staring into the mirror

And when she caught sight of herself

Beside the other woman

She gasped

And that’s the only way she could determine who was whom

Through the mirrors reflection

Standing there

Looking straight ahead

She saw two women

Identical in their unimpressionable appearances

Her hand fluttered to cover her mouth

So did the plain woman in the mirror

This couldn’t be, she thought to herself

The other woman washed up and left the restroom

The young woman stood there staring at her solitary reflection

Now that she had seen it

She couldn’t stop unseeing it

All the sameness between her and the other woman

Another person entered and came over to wash their hands

The young woman looked over

Again noticing how plain the new woman looked

She reluctantly looked into the mirror

Her stomach began to churn

She raised her arm

So did the woman in the mirror

The other plain Jane in the room

She settled her arm by her side

The woman beside her finished up and left

The young woman thought back to her previous night

Had something happened?

She remembered coming home from work

She remembered feeling annoyed

She had taken public transit

She remembered how everyone had made her feel so uncomfortable

They stared unabashedly

Some talked to their friends about her

Right in front of her!

This wasn’t anything new

It happened whenever people saw her for the first time

A memory crossed her mind

She’d gotten home, feeling frustrated, lonely and like a social outcast

She’d drawn a bubble bath

Sighing as she got in

She wished not for the first time

That she could be just like everybody else and feel content about it

The young woman stared at herself in the mirror again

Seeing the reflection that stared back at her

Noticing nothing about her

She looked like every other person she was used to encountering

She felt her hands begin to tremble

Had she somehow put this in motion?

Had she wished it too many times?

Had she gotten what she wanted?

The young woman began to cry

In an instant memories flooded her mind

With every occasion someone mentioned how special she was, in her different-ness

Every instance someone remarked at how unique she was

Every single time she had wished herself away

What had she done?

She collapsed to the floor with a loud thud

People came running

Someone yelled ‘call an ambulance’

‘She’s collapsed’

As the ambulance came to take her away

Her coworkers stood around

The young woman didn’t open her eyes but she could hear everyone murmuring

Someone said

‘Who was that woman?’

Another person replied ‘Never seen her before.’

The young woman wanted to yell at them

She was the same person who’d worked there for years!

She heard someone say her name, they were worried that no one had seen her that day

‘Do not follow where the path may lead. Go instead where there is no path and leave a trail.’ Ralph Waldo Emerson

Once upon a time

There lived a young woman

She grew up always knowing she was different

Like the odd one out

From being a little child, to a rebellious teenager and now as a young adult

She felt alone a lot

Always feeling like an outsider

One morning, she woke and before opening her eyes

She knew something had changed

As she rose from bed and opened the drapes

She sensed things would never be the same again

She looked outside

The neighbourhood sat in front of her

Nothing seemed out of sorts

She changed and readied herself for the day

Not bothering to look in the mirror

She knew what she looked like

She always stood out

No matter what she wore, or didn’t wear

Walking outside, she looked around

The people around her walked alongside her

Everyone else blended in so easily

She envied them for that

She’d tried once

To blend in

It all just felt so wrong

Like she’d put on someone else’s skin

She made it to work and went to the restroom

She looked at herself in the mirror for a long while

Nothing appeared to have changed

She was still herself

That both made her feel relieved and disappointed

She heard the toilet flush and someone came to stand beside her

In front of the mirror

When she looked beside her

The other woman standing there looked totally unlike her

No similarities at all

That wasn’t unusual

She never had much in common with others

The woman was bland

The type of person you’d forget about as soon as you looked away

The other woman’s reaction was unusual however

The stranger didn’t even seem to notice her

Didn’t bat an eye

The young woman thought maybe she’d seen this person before

Often when new people met her

They stared in shock, in awe, in disgust, in well something

She looked at her again

Trying to remember if she’d met her

It was hard to tell, she thought

The other woman looked like so many others

The young woman straight ahead

Staring into the mirror

And when she caught sight of herself

Beside the other woman

She gasped

And that’s the only way she could determine who was whom

Through the mirrors reflection

Standing there

Looking straight ahead

She saw two women

Identical in their unimpressionable appearances

Her hand fluttered to cover her mouth

So did the plain woman in the mirror

This couldn’t be, she thought to herself

The other woman washed up and left the restroom

The young woman stood there staring at her solitary reflection

Now that she had seen it

She couldn’t stop unseeing it

All the sameness between her and the other woman

Another person entered and came over to wash their hands

The young woman looked over

Again noticing how plain the new woman looked

She reluctantly looked into the mirror

Her stomach began to churn

She raised her arm

So did the woman in the mirror

The other plain Jane in the room

She settled her arm by her side

The woman beside her finished up and left

The young woman thought back to her previous night

Had something happened?

She remembered coming home from work

She remembered feeling annoyed

She had taken public transit

She remembered how everyone had made her feel so uncomfortable

They stared unabashedly

Some talked to their friends about her

Right in front of her!

This wasn’t anything new

It happened whenever people saw her for the first time

A memory crossed her mind

She’d gotten home, feeling frustrated, lonely and like a social outcast

She’d drawn a bubble bath

Sighing as she got in

She wished not for the first time

That she could be just like everybody else and feel content about it

The young woman stared at herself in the mirror again

Seeing the reflection that stared back at her

Noticing nothing about her

She looked like every other person she was used to encountering

Out of everything missing

What she noticed most

Was the absence of the spark she used to have in her eyes

She felt her hands begin to tremble

Had she somehow put this in motion?

Had she wished it too many times?

Had she gotten what she wanted?

The young woman began to cry

In an instant memories flooded her mind

With every occasion someone mentioned how special she was, in her different-ness

Every instance someone remarked at how unique she was

Every single time she had wished herself away

What had she done?

She collapsed to the floor with a loud thud

People came running

Someone yelled ‘call an ambulance’

‘She’s collapsed’

As the ambulance came to take her away

Her coworkers stood around

The young woman didn’t open her eyes but she could hear everyone murmuring

Someone said

‘Who was that woman?’

Another person replied ‘Never seen her before.’

The young woman wanted to yell at them

She was the same person who’d worked there for years!

She heard someone say her name, they were worried that no one had seen her that day

‘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

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

‘Nothing gold can stay’ -Robert Frost

You know that saying

The one that goes something about longing for a place you’ve never even been before?

Sometimes it’s not as romantic of a notion as that

Sometimes it’s a literal place you’ve been to

For me it was a house we lived in

A house we recently sold

To move into more affordable (read: for my situation) living arrangements

It wasn’t just concrete and wood

It was a home in a very real way for me

As an eternal ‘outsider

It can be tricky to find a place where you feel comfortable

Let alone a place where you instantly feel at ease

Most places seem unwelcoming or overwhelming

But not that house

I remember walking in

And seeing the grey walls and dark floors

And laughing to myself that it was like it had been renovated with me in mind

Finding a big bay window in the master bedroom was icing on the cake

I’d sit so often in my bed and look out that bay window and see the centuries old trees that lined the street

Finding comfort in all the beauty that had been there long before me

And would surely be there long after me

It wasn’t just the house

The street made me smile when I drove towards it

Smelling the amazing food of my Portuguese neighbours

Joking how even in the dead of winter they’d be out grilling up some food on a charcoal bbq

We would sit on our stone patio in our wicker chairs

Listening to the sounds of the neighbourhood

Music and cars and laughter

I can’t tell if any of it is even real anymore

Did I make it all up?

Maybe it never really existed

It should make me feel better

Less sad

Less nostalgic

It should make me hopeful that if a place like that could ever have existed

Maybe I can find it again

But I don’t feel that way

I feel sad and bitter and filled with regret

I feel certain in this moment

That my soul is so heavy with the weight of regret

That I’ll never be able to find the beauty of feeling home again

So on we go

My troubled soul and me

Perpetually lost

Always an outsider

‘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