‘Let’s go to Never Land and never come back till forever ends.’

Yesterday I dreamed I was free

I could move freely

I could fly anywhere

My mind was a safe place

It was like a children’s playground

That I was free to explore

I could stand in the middle of the universe

With my arms outstretched

My head lifted to see the sky above

My eyes wide and bright

The world I saw was clearly defined but with no sharp edges

I could see kindness pouring out of strangers faces

I felt warmth

All around me

It was like having some soup on the coldest day of the year

And in that moment every thing is just right

Even if it’s only soup

And it’s only a dream

But morning comes too fast

And the sun is too bright and it hurts my eyes

And it’s too hot and my arm throbs

And nothing feels as soothing as that soup did

I woke up

And all I see are sharp edges and corners that lead to scary places

People aren’t so kind

And I’m warned not to go outside

And the only place I can stretch out and look above me

Is on my bed

And so all I can do is

Hope that when sleep takes me

My dreams are about playgrounds and hot soup on a cold day and kindness all around me

But maybe if I close my eyes really right

I can stay in that dreamland just a little while longer

‘I used to be somebody’- NIN

I’ve been off of work for two years

On long term disability

Every day the probability of returning to my old job felt further away

Yesterday I received an email from my employer

Officially terminating my employment

It hit me hard

You might think it’s no big deal since I’ve been off work for so long

You’d be wrong

I felt like I couldn’t breathe

I reread the email so many times

The words blended together

Floating on the screen

They didn’t make sense anymore

I worked there for 6 years

I’ve been working in this field for over 12 years

Now it’s over

Officially I guess

I’m no longer a youth worker

I don’t know what I am

My name is Angela and I used to be a youth worker

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 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 🖤

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

‘I will take what is mine with fire and blood. George R. R. Martin

I’m still trying to digest everything that’s happened in the last month or so…

Sometimes it feels like it’s all happening to someone else

And other times I feel like it’s happening to me over and over

Like a weird Groundhog Day movie thing

Things were so off leading up to going to Florida

That I feel like I’ve never really regained my footing

Maybe I came back to Toronto as someone else

I don’t know

Except it’s been fitting with the way my life has always sort of seemed to go

You know the saying:

‘If it wasn’t for bad luck I’d have no luck at all…’?

Right now looking back at Florida

It seems like a really bad nightmare

I was so sick

And I didn’t know why

The bruises appearing out of nowhere

And the blood

Well I won’t gross you out with the details

Suffice it to say

It was unpleasant

After returning and finding out about my super low platelets

It all seems like a blur

I had a very rare reaction to the IVIG called aseptic meningitis

Which essentially mimics meningitis symptoms such as the headache and neck pain

It eventually passed and I got through it with the help of some hydro morphine

It was frustrating to be in the hospital bc no one listened to me when I explained that I was only there because of the headache/neck pain and not for the low platelets

They didn’t understand that my platelets were a result of the Lemtrada treatment and kept saying but you had the last dose over a year ago

While I do have notoriously bad luck

For some reason I was gifted with an incredible hematologist doctor from St. Mikes

She gave me her email address

And responded to my many emails

And even contacted Humber to explain my situation and why I could be released

From the minute I met her

I knew she was different

She cared not only about my platelets but about my mental health as well

Truly not something I’ve often experienced

Even while being treated by ‘mental health professionals’

After leaving the hospital I was so bruised and sore from all the blood tests and I won’t even begin to explain the bacterial infection I picked up from the hospital

I had another blood test early in the week and then a follow up appt at St. Mikes later in the week

I tried to not obsessively check my results

And waited until late in the evening

My platelets had risen from 28 to 46!

While still nowhere close to being normal (150-400)

It seemed to be going up

I’m back from my follow up with hematology now

It wasn’t the worst case scenario I was imagining

Nor was it the ideal situation

Nope

It was somewhere in the middle

I have ITP

We don’t know if it’s permanent or not

We have to wait and see if my platelets continue to increase

The doc explained it as there are three possible scenarios:

1. I did the IVIG and I recover my platelets and ta da! The end

2. I did the IVIG and I recover some platelets but relapse and will need some sort of treatment

3. I did the IVIG and there is no improvement and will need an alternative treatment

I’ll have to wait and see which category I fall under

The real bummer from today is learning I will have to continue with weekly blood tests until told otherwise

For the record

In case you’re wondering

Or if anyone asks

I haven’t become a pro at the blood tests

It still is a big deal for me

And I still dread them

Despite this

I’m still here

I did some art

I sat outside with my dogs and the sun shining on my face

I listened to more audiobooks

This is my life

For right now

And I’m sorta okay with that

‘Life is a cruel teacher. She’ll test you first and give you the lesson later.’

This is me after 2 days at St. mikes emerge getting IVIG treatment, 20 plus hours at Humber’s emerge, blood tests in the high double digits, uncomfortable beds and a long night where an elderly Italian woman was wailing my name along with some other choice words and howling the night away. Oh yeah and I’ve been waiting for my antidepressants since 6am. Life. 🤷🏻‍♀️