‘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

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

‘…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

‘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…

‘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. 🤷🏻‍♀️

‘And here you are living despite it all’ Rupi Kaur

There is something infinitely terrifying about needing any type of replacement for your blood

When the doctors first told me my choices were steroids or a hemoglobin infusion, I felt panicked

Immediately stories of tainted blood flooded my brain

I became very aware of my own mortality

Catastrophic possibilities of bleeding in my brain

Or bleeding to death

Were all I could think of

I also thought of everything I would be leaving behind

Joey

My parents

My sister

My nieces and nephews

I thought of all the things I might never get to see

Maybe I’ll miss Lisa getting hitched

Or my nieces having boyfriends

I’ll just miss out

On life

I thought about Joey

And how it might be easier for him without me

But then I thought of him moving on with someone new

Someone not sick

It was soul crushing

He’s mine

I thought

We’re supposed to grow old together

To retire in a hot place

And I broke down

I ugly cried

Hard

I’m not ready

It’s not my time yet

Then I thought of 6 months ago

About how many times I said I would rather be dead than dealing with my panic disorder

Maybe I jinxed it

Maybe I brought it on myself

Maybe I put a challenge out to the universe

But see

The thing is

You can’t be held responsible for things you say under duress

I wasn’t myself

I didn’t mean it

I was scared

So many factors

But I did wish it

So many fucking times

And I did mean it

It was so painful

I remember thinking death has to be better than this

Anything that makes it stop

You know?

That was 6 months ago

Today

I’m an artist who has shows planned

Today

I am a wife who wants to live out her future with her beloved

Today I am a daughter and daughter in law who wants to spend time with her family

Today I am a sister and sister in law who wants to share more laughs together

Today I am an aunt who can’t wait to see her nieces and nephews grow up and become who they were meant to be

Today

I want to live

Through the pain

Through the sadness

Through the blood tests

Through the infections and fevers

Today

I am going to fight

Because I want to