‘Expectation is the root of all heartache’

Some mornings before I open my eyes

I think <dream> about all the things I can do during upcoming day

Maybe I can go snow shoeing

Or take the dogs for a walk

Maybe I buy a sewing machine and start making stuff

Maybe I should start looking for a job in my field

Maybe I’ll finally agree when joey asks me to go for a walk at the lake

And then I open my eyes

Instantly I feel every sensation in my body screaming awake

All the aches and pains that I can sometimes pretend don’t exist

That they don’t hinder me

But then I’m reminded

When I try to do ‘normal’ things

And I pay the consequences for weeks after

When I try to do a little sewing

And then I have to ‘rest’ my eyes for two days after

When I go get my hair done

And my body protests angrily and I have to lay down with a heating pad and keep my legs elevated

It’s becoming harder to enjoy those moments because I can see how much I’ll have to pay afterwards

And I think to myself

Some people just don’t get happy endings

Maybe I don’t need to accept MS

Or my mental health challenges

Or the shitty healthcare system we have

Maybe all I have to accept is that I’m one of those unlucky people

Who don’t get their happily ever after

Full of broken thoughts, I cannot repair -NIN

I collect bruises aches and pains the way some people collect lovers

I collect chronic and rare diseases the way some people collect friends

My collections showcase a landscape of chronic pain and sometimes unexplainable heartache

Hills made out of losses and cloudy skies full of regret

Behind a thick pane of broken glass

Some pieces dull and pointless

Others sharp and full of purpose

One leaves white scratches

The other draws blood

Both causing damage

Neither capable of complete and total destruction

Hung up anyway

In a hallway of broken promises and what should have been full trophy cases

And every time I walk through

I stop to make sure the chaos isn’t crooked

But perfectly straight

I adjust it

So it’s angled just right

My shattered life looking right back at me

Sometimes I just wish my demons weren’t so loud, that they drown everything else out

I’ve been dealing with a lot of health stuff

Not one big issue

But lots of seemingly smaller issues

The end result is the same

I’m overwhelmed

I can’t get past this one looming thought in my head

How can I have THIS many things wrong with me?

More baffling is when I’ve overcome one health hurdle and then a brand new one pops up

J. said to me yesterday

In an attempt to cheer me up

That it’ll get better

I screamed at him

That I’m not one of those people who is lucky enough to ‘get better’

It struck me in that moment how true it was

I have been living in this limbo of ‘sick’ for so long

I can’t remember a time when I wasn’t

Even Facebook reminds me how often I’ve felt shitty

With my memories of years past complaining about this health issue or that health issue

It feels redundant

I’m frustrated with having become this person

This ‘sick person’

This person who has become the object of pity

It’s not how I expected my life to be

And yet here I am

Having just turned 40

A milestone

I should be happy about

Instead I’m sad

Because 40 years have passed with most of the last 15 or so years having been filled with pain and sadness and sickness

It leaves me with a feeling of despair

For a life I never wanted

With feelings of longing

For a life I wasn’t fortunate enough to receive

‘Everyone I know goes away in the end’ NIN

When people stop calling

It’s because you’re sick too often

It’s because you’ve cancelled plans one too many times

It’s because your health issues have made you unreliable

It’s because you’ve become consumed by your sickness

It’s because you’re not fun anymore

It’s because you’re sad

It’s because you’re angry

But mostly

It’s because you bring them down

The healthy don’t want to be reminded by how fleeting health can be

The healthy want you to be ‘positive’

The healthy want you to be inspirational

The healthy want you to be their token strong sick friend

It’s okay though

Some days

I don’t want to see the healthy ones

I don’t want to be reminded by all the things I’ve lost

Or the things I’ll never have

But mostly I don’t want to be reminded with the life that was never really within my grasp

This is life with chronic illnesses

You’re an island

And there’s no one coming to visit

Better get used to it

Sometimes it’s just that nothing seems worth saving-NIN

I have this little light up sign box in my house

The kind where you can put in the letters to make whatever phrases or words you want

I wanted

‘Don’t just exist, live.’

At the time

I thought it would be a good motivator

Something to inspire me to do more

To push myself

Face challenges


It sits there

Mocking me

Making a fool of me

Every time I look at it

Which seems to be quite often

It laughs at me

Points at me

Ridicules me

Taunts me

And I do nothing back

The fucked up part is that I can’t bring myself to change it

So it remains

A hollow reminder

Of who

I hoped I could be

The villain and the victim

Some days my skin is like heavy duty armour

The kind that is simply impenetrable

Enemies fire at me and it just pings and ricochets away

I can fire back with the weapons I’ve made

On those days

I am strong

A real warrior

Then there’s days like today

Where I’m certain my skin is nonexistent because I seem to absorb everything

Every hurtful word

I look down at my body to see where my armour is

But it’s not there

I have no weapons either

Nothing to keep the bad things at bay

A withering glance causes me to crumple like a piece of paper

The worst days


Are the ones

Where there is no enemy

It’s only me

And I am the worst villain I’ve ever faced

Those days I am both the villain and the victim

And I am uncertain which one is worse

Siren Song

Some days all I can hear is a sweet siren song

Calling me

And I have to use every ounce of my being to not let her lead me away

Those are often the same days when some part of my body or brain isn’t working the way I wish it simply could

It might be that my eyes hurt and the only relief comes when I finally close them

Or it might be that the fatigue has gotten the best of me and I feel like I’m treading quicksand

Maybe it’s the days when my anxious thoughts are running amok

That damned siren knows those days are hardest

And all I can hear is her sweet sweet song

Seductively crooning for me to turn myself over to the waves

Promises to

Sooth my frayed nerves

Promises to

Cleanse all my pain


To just carry



And all I have to do in return




For me becoming blind is an inevitability that I can’t just brush off..

As you may know I have MS and have had a few bouts of optic neuritis

While optic neuritis doesn’t last forever and your vision usually returns, it does take away a little bit of it when it leaves

I’ve recently been diagnosed with something called Macular Telangiectasia (Mactel type 2). It’s a rare eye disease that affects the blood vessels and your central vision.

Upon hearing this diagnosis, I was speechless

Which doesn’t happen often

But I sat there, wavering between some weird surreal reality where suddenly everything felt too real

The ophthalmologist asked if I had any questions and my mind went blank

I think I asked how this happened or something

I don’t really remember

I just remember thinking

How can this much be wrong with me?

If someone else was telling me this I would think they were surely making it up

Some type of hypochondriac or something

But it wasn’t someone else

It was me

And I wasn’t making it up

Or imagining it

This was one more thing to add to my health file

And it brought me just that much closer to the possibility of becoming (legally) blind

I’m sitting here typing this into my phone with its enlarged font and darkened screen

Thinking about all the what if’s

It’s a rabbit hole I can’t afford to go down


So for now

I’ll leave it open ended

A possibility

A very real



And I’ll have to find a way to become okay with that


One day

One day

One day, I’ll be brave she thought

One day, I’ll be strong, she thought

When I grow up

She thought she could grow into it

Like she grew into her sisters hand me downs

Like she grew into a teenager

One day I won’t be scared, she thought

One day I won’t be weak, she thought

She thought she could leave it behind

Like she left pieces of her childhood, scattered on the lawn

A bike, a skip rope

Like the shedding of a skin

Becoming a woman

One day I’ll be brave, she chanted

One day I’ll be strong, she chanted

Maybe it wouldn’t be today

Today had too many demands already

She had things to do

She thought if she said it enough she could wish it into being true

As if the next day, she’d awake

Instead, she woke up an old woman

Her bones creaked getting out of bed

Her slippers too shabby to be comfortable anymore

She looked at herself in the mirror

A face she no longer recognized

She mouthed the words

Too tired to speak them

One day

One day

One day…

‘The loneliest moment in someone’s life is when they are watching their whole world fall apart and all they can do is stare blankly.’ The Great Gatsby

2020 was a nightmare

For most of the world

For most people I know

For me

It was still better than 2019

The year I fell apart

And painstakingly put myself back together

I know that might seem surprising to you

With all the devastation, isolation and chaos of this year

But if you’ve ever experienced a mental health crisis

You know

There is nothing worse

No physical pain

No physical illness

More horrific than when your own mind turns on you

You see

There’s little reprieve

No painkiller

No ice pack

No amount of Netflix

That could have eased the chaos that was ensuing in my brain

I think back to that time period

I couldn’t eat

I was using drink supplements to sustain myself

During COVID, we’ve baked wonderful desserts and made tasty meals that I’ve enjoyed so thoroughly

Then, I couldn’t sleep

Now during this quarantine, I take naps during the day

Then, I couldn’t stay in my own home

Now my home is my oasis

Then I was scared to be alone

Now I wouldn’t mind so much if Joey was out of the house a bit more 😬

Then, Joey would leave for the day

I would feel the dread in every cell of my being

I remember waiting for my parents to come over

To just be with me

And trying to take my mind off the wait

I showered

And it was excruciating

Every single second

My brain told me everything was wrong

Now I can enjoy my showers and look forward to when I can take a bath again (it’s a work in progress)

So I know many of you have experienced rock bottom moments during this year

And I don’t take the deaths of so many lightly

It’s been devastating and I can surely sympathize with the losses people have experienced

But I hope

You can understand

Why this year will not go down in history for me

As the worst year ever


That title is still held by 2019

The effects of which I may never fully recover from

I hope you can wear your invisible survival of 2020 badges proudly

But I survived 2019

The year I fell apart

And put myself back together