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

The time the internet turned against me..

So I nonchalantly commented on a Vice Canada article about whether or not Don Cherry should be fired for his xenophobic comments.

My comment was solely on the story and agreed that Don Cherry has gotten away with this behaviour for too long and should be fired.

The amount of hate I got was a little startling.

I’m a lot older than the typical person who gets cyber bullied so I’m a little removed from this sort of thing.

People immediately went after me

They went after my appearance firstly.

They stereotyped me for my hair colour.

They called me fat.

Said I was dumb, stupid and so much more.

Instantly, I wanted to hit back.

After all, that’s what you do when you’ve been attacked.

But I quickly learned it was getting me nowhere other than infuriated.

I deleted my comment.

Not because I don’t stand by it (because I do)

Not because I can’t handle the criticism (because I can)

But because this war behind a computer or a phone or whatever

Is not one I can win.

That anyone can win.

People become so brave they will literally say anything or do anything.

Frankly, it makes me afraid of the world we live in.

How scary is it when you can’t even risk speaking your opinion for fear of retribution?

This speaks to something so much bigger than internet trolls out for blood.

This is a not a liberated society.

This is totalitarian.

If you dare to step out of line you risk facing the wrath of the legions of people willing to do and say whatever it takes to make their mark.

While I can handle the criticisms, I can’t handle the anger and anxiety that explodes inside of me as a result of such an encounter.

I was so angry at the words they were tossing around.

Not because I’m hurt by them but because someone else might be.

Some teenager might be reading along in agreement and see the inflamed ego it caused and the hurled insults and bullying that ensued.

They might not have the self security to hold strong to their own beliefs.

And that is the biggest tragedy of all.

‘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

What I wish you understood:

I get tired really easily

The heat is unbearable for me right now

It’s hard for me to work up the energy to go out

I’m terrified that you will forget me

Right now I can’t do the things I used to

I want you to talk to me

I don’t want you to feel sorry for me

I want to be the old me

Even though I can’t really picture her

If you can

Maybe you could help me remember her…

‘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