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.

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‘Language is the blood of the soul into which thoughts run and out of which they grow.’ Olivier Wendell Holmes

Feeling speechless

I didn’t think this year could possibly get worse

The universe took that as a challenge

It got so much worse

I’m home from the hospital now

I did things this week that I didn’t think I would ever be able to do

I should feel proud

Instead

I feel resentful and saddened

That I had to do them at all

After two days of immunoglobulin infusion

My platelets are still low at 28

From what I remember, this might mean that I have Immune thrombocytopenic purpura (ITP)

Refresher:

ITP is a bleeding disorder where the immune system mistakenly destroys platelets

Platelets allow us to not bleed excessively

It seems like a really big fuck you to me

I hate blood and needles and anything to do with bleeding

And the universe said

Well, here ya go

I won’t know for sure until next week

But of course I’m thinking the worst case scenarios

I’m convinced I’m dying

I’ve never had that fear before

The universe laughed

And said ‘now you do’

I’m scared

I’m sad

And I keep thinking I just can’t take any more

But I’m scared

That the universe

Will take that too

As another challenge

And I’m just not up for it

‘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

‘Okay, you made me scared, you did what you set out to do And I’m not prepared, you really had me going there for a minute or two’ The Tragically Hip

Scared is different from panic

Panic is unwarranted

Panic is your body misinterpreting signals

Panic is reading everything as danger

Scared is a reminder of what we have to lose

Scared is a prayer on our lips

Scared is being alive

It’s okay to be scared

Sometimes it’s even expected

Sometimes I struggle to sort out in my mind what is ‘normal’ fear and what is my panic disorder

Yesterday I felt my heart beat fast and I felt panicked

Surely it meant something was wrong

Maybe I was bleeding in my brain

Maybe I was going to feel the way I did last week

Maybe I would receive bad news

Today is different

Today I am scared that my blood levels won’t improve

Today I am scared that this could turn into something worse

Today I am scared to miss out on anymore of my life

And tomorrow

Is another day

That I can’t be afraid of

Just yet

The Ugly Side Of Recovery

I’m one year and 3 months post round 2 of Lemtrada (the immunosuppressive treatment I underwent for MS).

This was probably the biggest and scariest thing I’ve done in my life

There was caution and risk involved

But I did it anyway

Because my desire to be healthy outweighed my fear

That doesn’t happen often with me

Countless times, I’ve allowed my fear to be in control

To sit in the drivers seat

To call the shots

For whatever reason

That time

I just didn’t

One of the possible side effects of Lemtrada treatment is:

‘Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple’

I think it’s something like 2% of Lemtrada patients can end up with it

Well I recently went away and while on vacation I noticed huge unexplained bruises.

Then came bloody stool

Some red spots

And a whole lot of anxiety and fatigue

Needless to say

My trip was a bit of a bust

Upon return I reached out to my Lemtrada nurse to explain what I was experiencing and she told me to get my bloodwork done

I did

And my platelets were 53

Normal platelet count is between 150-200

I really had to restrain myself from googling the fuck out of this

I sent my nurse a copy of the lab work

And bright and early this morning she called me

Seeing her name on my phone

I knew it wasn’t going to be a friendly call

She urged me to go to emerge at St. Mike’s ASAP

She was amazing at calming my already sensitized nerves down

So I got my people ready and we went

At emerge and after having to explain Lemtrada repeatedly, I had more bloodwork done and a rectal exam (that was fun)

After lots of waiting

Worst case scenarios playing in my head

And my constant companion of anxiety

My results were back

Platelets up to 87!

Not in the clear but an obvious improvement

With cautions about new bruising or headaches

To return to the emerge immediately

A little bit of good old fashioned fear: you could experience bleeding in your brain

Another blood test on the horizon

And an appointment with a hematologist

I’m headed home

Of course I’m scared

Because yet again

There is uncertainty

For example, what caused this all of a sudden?

What if it comes back?

What if I fall or cut myself?

What if I die?

Uncertainty and anxiety are like yin yang

They feed off each other

And it’s so fucking easy to slip into my old patterns

Fear, panic, sadness, wallowing

Then what?

It doesn’t change my potential outcome

But it does make this whole process that much harder

And why on earth would I ever want to make things harder for myself?

I refuse to allow this to make me a victim

Nope

Today I will do something that I don’t often do

Something my sister said to me

I will deal with this with a grace I don’t often possess

With strength and determination that I’ve not often felt

Gratitude that I often neglect

And I’ll just keep going

Because anything less isn’t an option

Not today anyway