The world, tomorrow

Its not the same world that I wake up to everyday

Some days

I wake up

And the world is a cold scary place

People use you and forget you

Even the ones that are supposed to love you

Sometimes I wake up

And it’s a stressful world

Filled with risks

And people I don’t trust

Sometimes I wake up

And it’s a lonely world

With no one around

There is one world I like waking up to most of all

On those days

I wake up

And it’s a beautiful world

Filled with kind people

And compassion

The colours around me are more vivid

The music I hear is perfect

The art I create comes easily

So I go to sleep

Every night

Not knowing which world I’ll find when I awake

It’s this big gamble

On the good days

I don’t want to close my eyes

In hopes that this world can last forever

On the dark days

I can’t wait to fall asleep

And

Hope hope hope

That tomorrow the world is beautiful again

That is what a life with mental illness is like

A hope

A gamble

A fear

A despair

And then doing it all over again

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.’

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

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…

The Perfect Storm

I’ve been thinking a lot lately

Thinking about people…society

Thinking about being a ‘sick person’

About having a mental illness

I struggled long before my MS diagnosis

I struggled for years because of anxiety and depression

Even with treatment, I still struggled

Like MS, there is no cure for my mental illness

There is no quick fix

Even the medical treatments for both come with explicit warnings and precautions

So it seems like there a lot of similarities

Except for one major difference between my mental health and MS:

The way society perceives both

While many people don’t understand or really know what MS is all about

There is more empathy for people with MS than there is for mental heath sufferers

People seem to acknowledge that nobody would choose to have MS

However with mental health, people place a huge amount of responsibility on the individuals shoulders

Especially with mood disorders like mine

‘Snap out of it’

‘Be positive’

‘Exercise..it’ll make you feel better’

I’m sure I could fill countless pages with similar pieces of unsolicited advice

Not just from friends and family

But also from the medical field

It’s almost funny how after I found out about the MS

There was a certain credibility that I was awarded

My mental illness wasn’t enough to warrant unbiased compassion

But MS…

That’s different

Or maybe it’s the combination

Like your mom’s handwritten recipe for human compassion

While I’m grateful it’s awarded me more understanding in some avenues of my life

Something about it also strikes me

It must mean that I’ve become something like the perfect storm

‘Freezing slow time, away from the world’ 38 Years Old, The Tragically Hip

I received a call about my application for Canada Pension Plan

(Canada Pension Plan (CPP) provides disability benefits (disability pension and post-retirement disability benefit) to people who have made enough contributions to the CPP and who are disabled and cannot work at any job on a regular basis. )

My insurance forced me to apply

I was accepted

I will receive benefits until I am 65

I should be happy

It means there is no more need to provide ‘evidence’

I get the money I am entitled to

Instead I burst into tears after getting off the phone

You probably don’t understand why

Allow me to explain

Everyone tells me I could go back to work

Maybe part time

Or for another organization

I’m too young to not work

Be realistic now, who the hell would hire me?

I would have to explain my limitations

And I am all too aware of what happened the last time

I’m not naive

I understand I’m a liability

I cost more than I’m worth

So when I heard the news today

I didn’t feel happy or relieved

I felt heartbroken

Because it’s not just my employer who doesn’t find me fit to work

It’s the government too

And now I think they are right

I just celebrated my 38th birthday

I have 27 years ahead of me of what could have been my ‘working’ years

But now when the topic of work comes up or people ask what I do

I answer

Once upon a time

I used to be a youth worker

I was really good

I helped make a difference in young people’s lives

And now

I just exist