‘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

‘Life is a a journey I don’t have a map for’

MS symptoms are weird and scary and often come at the worst times

My initial symptom was optic neuritis which is an inflamed optic nerve and caused pain and blurriness

Along the road

I guess I’ve been fortunate that my mobility hasn’t really been affected

I don’t know if sciatic pain is associated with MS but that’s affected my mobility the most

Fatigue has been a constant

It’s not your regular tired after a long day at work

It’s more like a body draining exhaustion

Like you ran a really long marathon

But all you did was shower

And no amount of rest makes you feel less tired

I get a lot of headaches which no one has been able to explain the root of

But they happen often and last for long periods of time

I also have a lot of neck pain which radiates upwards into my skull

I’ve had numbness come and go throughout the years

Sometimes it just happens

One time I was going down the stairs at my old house

And my feet just stopped working

It’s like they weren’t even there

I fell down the stairs

That was a surreal feeling

The heat has long been a problem for me

Like the perfect weather for a relapse

And if you throw some stress into the mix

It becomes the perfect storm

I’ve had some burning mouth symptoms and itchiness that have both come and gone

More recently

I’ve had some pain on one side of my face that I was unsure of

But no real direction was provided to me

And a new one is this weird burning in my upper arm area

It is so severe that I made my partner examine me for any outward injuries

Of course there were none

It doesn’t feel like a sore muscle

It literally feels like I had burned myself with a hot pain and every time something rubs against it

It just exacerbates the burning pain along my arm

MS is often a lonely isolating struggle

Your family doctor doesn’t really know much about it

And the neurologist doesn’t really care about your day to day symptoms

So where do you turn?

It’s really easy to feel lost in the disease

It’s like someone has blinded folded me and dropped me off in the middle of nowhere

I don’t have any travel companions or anyone to help navigate

Now I’m somewhere in the middle of this weird nowhere land with MS

And I would just like a fucking map

That’s all

I woke up thinking about my nonna

I don’t know why…

So I’d like to share with you a little about my nonna Concetta

She wore black for like 50 years after my grandfather passed away

She used to have really long hair

I remember being a kid and watching her in wonderment comb it and then put in a bun

She never wore it down so I felt like I had gotten a peak behind the wall

She took care of me during the school week

My cousins and I would go home for lunch and she’d be always be ready for us

It’s funny to me now

But back then she never missed a lunch

She always sat with us

She didn’t eat

I don’t know when she ate her lunch

But during our lunch time as we spoke to each other in English

She sat with us

Just being with us

I remember once my cousin was telling a story and said the word ‘stupid’ to describe someone

And she backhanded him lightening fast

Because she thought he had called her stupid

I remember hiding a grin and a laugh

One time my cousins and I took our time returning after school

We approached with a big group of friends

She was waiting on the veranda

Yelling and screaming in Italian

Putting her hand in between her teeth

I can’t explain it

It’s an Italian thing

Anyway

My cousin was so embarrassed in front of his non Italian friends

That he told everyone our nonna was a witch and had just put a spell on everyone

When no one was around she would sit on the couch and play cards on her lap

But as soon as someone showed up at the door

She’d sweep the evidence under the couch cushion

I don’t know why she didn’t want to be caught playing cards

But it always bothered me

Maybe she felt she’d be judged

I don’t know

As I got older I didn’t see her as much

I didn’t speak to her as much when I did see her

Embarrassed by my broken Italian that I had once spoken well

I’d say the usual greeting and whatnot

But didn’t really talk to her like I once had

We’d go visit her and my cousins would be there

We would sit at the table and laugh and tell stories in English

Reminiscing

And she would sit there

Like old times

Just smiling

Being with us

She got sick and older and frail

I went to the hospital to visit her

It was late at night

My cousin left to get us something from Tim’s

My nonna looked scared

I got up and went by her bed

She looked up at me and I whispered

‘Ti amo tanto Nonna’

She smiled weakly

Eventually she got better

She went home

I visited again

I got a text from my cousin

Saying la nonna had died

It actually autocorrected to the nonna had died

That stood out then

Like she was the only one

She passed away at home

I went to see her one last time

I went to her room

Where she laid in her bed

She looked so small

So frail

So unlike the strong woman I’d looked up to my whole life

There was so much I wanted to say

So much I wanted to thank her for

Time had run out

But it didn’t matter

She knew

I just didn’t realize no words were needed for her to understand

She always did

Ti amo tante e per sempre

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

‘…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

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

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…