‘The woods are lovely, dark and deep…’

I don’t know if humans are really equipped to face their own mortality

It’s just such a foreign concept

It’s the opposite of what we know

We breathe without thinking

It’s automatic

To think of our own deaths

Seems just wrong

With MS I don’t really have to think about it

It’s a lot of things

But it’s not fatal

When I was diagnosed with ITP (rare blood disorder) this past summer

It seemed surreal

I could die if I got cut

If I fell

The slightest thing would mean I could bleed to death

I remember when I was still unsure what was going on

Feeling certain that I was gonna die

It was scary and unknown

Clearly

I survived

But every time I find a bruise…

Every time I get my bloodwork done

I’m faced with that same thought

Have my platelets have dropped dangerously low?

It’s sort of become a scary new reality

And not entirely unknown

However this whole COVID-19 is different

I knew I was at a heightened risk

I’m immuno compromised

I have two autoimmune diseases and a rare blood disorder

Plus the treatment I underwent for my MS weakened my immune system

Seems like the odds are stacked against me

So I’ve been practicing self isolation since March 15

I won’t lie

I’ve been scared

I keep hearing about the people dying have preexisting heath conditions

As if that makes it more palatable

Like it makes it ok

I got an email from my super amazing hematologist

She reaffirmed what I already sorta knew

I’m at an increased risk for infection

Because of the MS related treatment and ITP

Now I’m scared all over again

I’m doing the best I can

Not leaving home

Taking care of myself and my sanity

But I can’t help but feel afraid

What if this time I don’t escape death?

What if this time it catches up to me?

What if

What if

What if

I know I can’t live my life based on what ifs

But I can’t pretend they don’t exist either

So I’m caught in this weird limbo

Between focusing on what’s happening right now

This tv show

This art piece

This blog

And

The world of what ifs

What if I catch this virus?

What if death catches me?

I’m not ready to face death

I’m not ready to face the mere thought of death

‘I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.’

‘…how blue the sky appears…blue enough to bruise a heart.’ Sanober Khan

Every time I scan my body for a bruise or petechiae

For the rest of my life

I’ll revert back to this past summer

And the disdain

I felt for my body

For betraying me

Yet again

I thought we’d come to an agreement after I lost my fucking mind in January 2019

I thought we were cool

Ready to coexist

Always together

Anxiety

Panic

Depression

MS

All of it

We were going to get through it all

But those damn blood bruises

A warning sign that my body wasn’t holding up its end of the bargain

Now even though I’m in some sort of remission

I scan my body

Hoping to not see those blotches on my skin

But when I do

Like this evening

I’m suddenly back to Florida in August

Angry

Afraid

Alone

With a body that was turning on me

A body that didn’t feel like mine anymore

I can’t help but miss the days when a stumble was just a misstep

And a bruise

Was just a fucking bruise

Check out my new Fuck MS artwork

I was diagnosed with Multiple Sclerosis in 2013. Since then it’s been a very bumpy ride. I was forced to
leave a career I loved and went through a very difficult time. I was lucky enough to have found art which has given me a peace I’ve never really known before.
The Fuck MS line was established after I began writing a blog under the same name.
These new pieces have a background of either the symptoms that can come with MS or the ignorant things people say to MS warriors. I think the image and words in the forefront are powerful and speak for themselves.
Fellow warriors, we’ve got this! 🖤

Check them and more out at my Etsy Shoppe https://www.etsy.com/shop/damagedgoodsshoppe

For now…

I participated in my first art show

How wild is that?

Two years ago, I would never have thought this would have been in my future

Leaving my job was probably the hardest thing I’ve ever done

There will always be an empty part of my heart because of that

The loss of it felt so strong

No one prepares you for the grief that comes with that

And as hard as that was

I was lucky to have found something that gives me peace

Back to the art show

I was so anxious in the days leading up to it

The day of was a nightmare

I felt physically sick

I told Joey I couldn’t do it

That I wouldn’t go

I felt like a fraud

Everyone would know that I’m not an artist

I’m not ‘one of them’

Somehow I made it there

We set up

My hands were like ice

My skin felt like it didn’t fit right

I looked around

In awe of the sheer talent of the artists around me

Real artists

What am I doing here?

This is going to be horrid

And then somehow

It wasn’t…

People perused the artwork I’d made

The artwork that has saved my life

The first few customers

Terrified me

I was so nervous I even made something up when someone asked about my process

How embarrassing

More people came

They bought stuff

They gushed over the artwork

My artwork

My face grew hot

I said thank you

But I wanted to say I’m not a real artist!

More people came by

More people bought stuff

The compliments I received were mind blowing

Some of the vendors bought MY artwork

Loved MY artwork

🤯

Mind blown

I sold over 25 pieces of art that day

I left there with a goofy grin on my face

I was exhausted

And so amazed

Things like this don’t happen to ME

I’m the one who gets MS

Who gets a rare blood disorder because of a treatment I had to undergo for MS

I don’t get the happy endings

Maybe the art show was a one off

Maybe I won’t sell anymore

Maybe it was all a fluke

Those are still the thoughts on a loop in my mind

And in spite of that

I still paint

I still decoupage

I find poems that resonate with me

I create art

And I’m kind of an artist now

Maybe one day I’ll say that without madly blushing

For now

I’ll just use the heated cheeks as a reminder of how far I’ve come

And that’s good enough

For now…

‘The Happiest Place On Earth.’

Today is Joey’s birthday

Last year at this time

I was living with my parents

My mental state was super fragile

We had cake for his birthday at my parents house

I remember trying hard that day

To put a smile on my face

To be brave

To not be selfish

For Joey

Because he deserved so much more than what he got

Because I always felt like we could have been so great

If not for all the obstacles

My challenges that have disrupted our life together

But today

One year later

We are celebrating his birthday at Disney in Florida

Joey gets to be happy

I feel good

Maybe sometimes magic happens

Maybe the universe and planets align

Maybe I worked my ass off to get to this point

Whatever

It doesn’t even matter

Bukowski wrote: ‘What matters most is how well you walk through the fire’

And I did

I walked through the fire

And survived

Sure I have the scars to prove it

But who doesn’t?

I’ll be in Disney this afternoon

Indulging my inner kid

She deserves to have some fun

Even if it’s a moment

I’m going to close my eyes really tight and try my best to savour the moments

I deserve it

So does Joey

PS. Happy birthday Joey 🖤

‘To be calm is the highest achievement of self’

Today is my anniversary

Notice I didn’t write ‘ours’?

Because this one

Well it’s entirely mine

Today marks exactly one year since I would rather have died than continue to live in the state of panic I was in

It might seem dramatic

I don’t know if I can explain the pain I was in

I remember my mom talking about how I was then

And she winced recollecting the sound of my crying

It was without a doubt the worst time of my life

That’s saying something

Since I’ve been through so much

Its strange to some people

That I would pick Multiple Sclerosis and the unknown

I would pick ITP and the biweekly bloodwork

I would choose those things in a heartbeat

I would choose those things if it meant never having to go through a mental health breakdown

Today

As I write this I’m in a much better place

Both literally and figuratively

I’m not freaking out at Humber’s unequipped emergency department

Pleading

No

Begging for someone to help me

Today

I will not focus on what I couldn’t do then

No

Today,

I’m at my home

That I share with my husband of 12 years

My two dogs

Vinnie and Benny.

I woke up this morning

I brushed my teeth and washed my face

I had coffee and breakfast

I rearranged some furniture

I did some art

Now I’m writing this blog

It’s all so unexceptional

And I am so fucking grateful

‘Change Is The Only Constant In Life’

The streets were empty, grey and tragic

It was early morning

Raining gently

After everything had happened…

The shops and houses were in ruins

She could see the inside, the guts of what remained

Wondering mindlessly downtown

What was once such a bustling metropolis

Now deserted

Except for her

She wasn’t sure what she was doing

Why she was even here

She had walked here

After everything…

She thought what was once the heart of this city would hold some answers for her

On what was next

But seeing it like this

Empty and desolate

Only made her think that nothing would ever be the same again

She continued walking

Stepping over large cracks and tattered remains

She made her way to what had been her favourite place

An oasis in the city

Once upon a time anyway…

To read, to listen to music, to people watch

Now it was just a blank canvas

She stood in the middle

Where a fountain had been

She circled around

Examining everything from that formerly central spot

It was quiet and sort of peaceful actually

It was never peaceful

Even back when she would sit around on the benches

There had always been a low level hum of noise

Of a city on the verge of erupting

Now there was just…nothing

A thought occurred to her

She quite enjoyed the nothingness

After so much chaos, it was a balm for her shattered nerves

She headed to where the grass had once been

Laid down across scorched earth

Put her hands behind her head

Felt the gentle pitter patter of rain on her skin

Looked up into the wide endless sky

The clouds were clearing

She peered upwards

Fixated on a spot where a brilliant blue began to spread

She closed her eyes

She felt a change in the air

A shift within herself

Somehow she knew

This was just the beginning

And then in what surely must have been the first time in months

She smiled…