Me, the virus and a whole lot of free time…

It’s been awhile since I last wrote

There’s been a lot to process and adjust to

I was advised pretty early on to stay home

Which I’ve done

I’ve been home for 43 days

Every day I’ve struggled with anxiety and/or depression

It’s been one thing or another

As someone with mild agoraphobia I find it pretty ironic that being cooped up has me feeling anxious

Now all I want to do is go out and see people

I’ve had a few meltdowns

I feel afraid that if I do catch this virus, I’ll be one of the people that doesn’t make it through

I’m afraid that if it comes down to it

And we’ve run out of ventilators

I’ll be cast aside for a healthy persons survival

I’ve often thought and regretted having done my Lemtrada treatment

Which has made me extra vulnerable at this time

I keep thinking that if I hadn’t done it

Then maybe I wouldn’t have to be so cautious

I wouldn’t have the added worry of the blood disorder that I got as a side effect

There’s a whole lot of what ifs and coulda beens

It’s the lack of control that is particularly anxiety provoking

Which I’m sure is the case for many people

Who are not anxiety sufferers

I’ve been thinking a lot about the kids and youth who aren’t in school

I feel sorry that they’re stuck at home and I worry about the impact this will have on their mental health even when this is over

I keep thinking that the repercussions of this will be felt for many years to come

Economically, socially, emotionally…

And well

We’ve been pretty lucky thus far

We’ve been spoiled

Living in a society and part of the world where we don’t have to worry as much as others

So I’m not really sure I have a handle on how to adapt to this weird new ‘normal’

I’m not sure anyone does

I know that I can only take it day by day

Minute by minute

I can only focus on the right now

I can’t worry about tomorrow because it’s not here yet

I am grateful for being able to make art

I am grateful to have my partner being my contact with the outside world (for groceries and meds and etc)

I am happy that my family is still healthy and safe

And more than anything

I am so fucking grateful that Covid-19 didn’t happen last year amidst losing my mind and all that 😬

Stay safe everyone

‘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…

Kid, I hope you’ve finally found some peace

I started working with youth in 2008

Up until that point

I sort of dabbled in working with different populations

At a youth shelter, I found my place

It just felt right

Since then

I had worked exclusively with youth

Mostly homeless and/or at risk youth

Eventually I worked out of Mississauga as an outreach worker

Anyway

I have this thing that I do

I read the paper in the mornings or at night

If a headline catches my eye

That something happened in one of the areas that I worked in

I read it

Sometimes it’s about a young person who was a victim of crime

Or a perpetrator

Sometimes it’s about no one I know

Today

It was about someone I think I may have known

His name immediately caught my eye

And while it was spelled incorrectly

His age adds up to who I remembered

He was killed in a violet crime

He was of no fixed address

It all adds up

But all I keep thinking about

Are his vivid blue eyes

And the protective way he took care of his little brother

Sure I remember other things

Like taking him to court and working through his anger with him

Being upset that he got arrested again

Or something else

But I remember more about the long stretches his mother would leave him and his little brother home alone to fend for themselves

While she went to Florida with her boyfriend

With no food in the house

Under the guise that his grandma was watching them

I remember his dysfunctional mother calling me

Alternating between crying and yelling at me

That she couldn’t handle him

Wanted him to move out

I remember when I had two clients scheduled for court on the same day and time

So I figured I’d just drive them both home

No biggie

Until they told me to drop them off at the same location and went off together

If it’s you that was in the paper

If it’s you whose life was snuffed out far too early and much too violently

I’m sorry I couldn’t have done more to help you

I’m sorry that I couldn’t prepare you better for what was coming next

I’m sorry that life treated you unfairly from the beginning

I’m just sorry

And I promise to remember you

With your vivid blue eyes

And the way you wanted to protect your little brother

Rest In Peace, kid

You deserve to finally have some peace

‘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…

2019

This year has been so tumultuous

Right from the start in fact

I remember last New Year’s Eve

We had decided to stay home and then at the last minute we went up to my sisters house

I was so anxious

I had to take Ativan to get me there

To go to my sisters house

Where it would be a casual night with some friends

The worst would be still to come

In the early days of 2019

I went to emergency rooms

To crisis centres

I felt like I was going crazy

I was so afraid

All the time

I didn’t want Joey to leave me alone

I ended up staying with my parents for what I thought would be a short time

It was 4 months until I went back home

To my husband

To my dogs

To my own home

I didn’t know then that there would still be so many battles ahead

2019 brought with it a rare blood disorder

That I still don’t know if it’s permanently here to stay

It brought a 3 day hospitalization due to aforementioned blood disorder

It brought a disastrous trip to Florida in which Joey and I both thought I was going to die

It brought tears

Biweekly blood tests

New fears

It brought pain and a lot of heartache

2019 also brought me a peace within I’ve never really known before

Through creating art

It brought me the ability to make and hell…even sell art

It brought me friends made in group therapy

It brought me closure and a kind of acceptance with my panic disorder and MS

2019 brought to the forefront

A strength I did not think I possessed

It brought the undeniable knowledge

That I’m a fighter

And a survivor

With it came the ability to want to celebrate my life

So for my 38th bday I did

For once

I didn’t hate my birthday

I had a huge soirée and celebrated myself

2019

I’m not sorry to see you go

I don’t think I can honestly say I’m happy you were ever here

But without any hesitance or wavering

I can undoubtedly say

You showed me things about myself that I still hadn’t learned in 38 years

I’m grateful 2019 is coming to an end

And although you won’t disappear without having left a mark or scar on me

I wouldn’t be me without you

And I can’t be mad at you for that…