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

Again

So for now

I’ll leave it open ended

A possibility

A very real

Tangible

Possibility

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

Too….

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

No

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

‘In 3 words I can sum up everything I’ve learned about life: IT GOES ON.’

The last few years have held a lot of ‘firsts’ and ‘lasts’ for me

First time staying in a hospital

First time having to do at some points daily bloodwork, then weekly

First time I heard from a doctor that I could have died

Last time working

Last time feeling like a contributing member of society

First time participating in a art show

First time staying in a crisis centre

Last time trusting a specialist

First time selling art that my own hands created

Last time living in a condo (I hope) 😬

First time moving out of Toronto

First time having a postal code not start with an ‘M’

And all the firsts associated with COVID of course

Especially from a person living with a compromised immune system

I come from a place of thinking where nothing lasts forever

Sometimes it’s for the best

And sometimes it sucks but it ends anyway

I’ve decided to not renew this FUCK MS space for writing

It feels outdated

When I started FUCK MS

It was a place to vent and rant and just share my feelings around having MS

Obviously it morphed into so much more than that

It became a place where I could write about anything and everything

And I relished that

Then I found Art

And needing a space to write felt less important to me

Because I was sharing my feelings through every piece my hands created

Using poetry and broken images somehow become a way for me to say what was in my heart and mind

I’ve copied everything from here and who knows

Maybe I’ll write a book

Or something

Maybe I’ll be back under the Damaged Goods name

With something that feels more in tune with where I currently am

Regardless

Thank you to everyone who took the time to read the things that came from my muddled brain

Thank you to everyone who took the time to drop me a line

It was a lifeline for me

And no amount of thank yous will ever be enough

This space expires in January

So maybe I’ll be back

Who knows?

If anyone wants to reach me

Shoot me an email at damagedgoodsshoppe@gmail.com

🖤

Angela

‘And as I hung up the phone, it occurred to me. He’d grown up just like me. My boy was just like me’

I thought being a teenager was the hardest part of having a parent with mental illness

The fighting, the lack of understanding, the fear and the unpredictability

It wasn’t though

I’m 38 years old and the hardest part is right now

When he’s 74 years old and he’s too scared to leave the house

Too scared to drive

Too scared to be home alone

Too scared to go anywhere

It’s hearing the fear in his voice when he asks you to call him bc he’s going to be alone for a few hours

It’s seeing the anxiety manifest in his body movements and in the tightness of his face and wringing of his hands

It’s the pleading in his voice to go to the hospital where he hopes they’ll find something, that is not anxiety

It’s hearing and seeing him lash out in anger because he’s frustrated and helpless in his life

It’s knowing that he’s missing out on life because of this thing he’s battled for over 40 years

It’s coming home after seeing him

And crying uncontrollably

Because you still can’t help him

You still can’t save him

You still feel like the scared kid who’s home alone with him when he’s having a panic attack and you don’t know what to do

You still feel like the teenager whose angry and pissed off at a world that lets this happen to anyone

It’s knowing another day will go by and he won’t have conquered his anxiety

His illness wins again

It seems like it always fucking wins

And I’m afraid that mine will too…

Damaged Goods

Once upon a time

There lived a young woman who’s heart was growing on the outside

You may have heard similar stories of babies born like this

But this young lady’s story was unique

You see, she was born with her heart perfectly intact and enclosed inside her body

But when she was 7 years old, her dad left her and her mom for good

She cried herself to sleep

Every night for a month

She missed him terribly

One morning she woke up and felt a lump under her pjs

It felt like it was moving!

She ran to her moms room

Her mom jumped out of bed and ran to her side

She saw the lump moving with her own eyes

It looked like it had a heart beat

She tore off the young girls shirt

And there her heart sat

Exposed and thumping away

Doctors and hospitals and so many tests

Nobody knew what was going on

All tests showed that the girl was perfectly healthy

Her heart was strong

Except for the strange occurrence of her heart being on the outside

As the young girl began to grow into a teenager

Her heart grew with her

When she experienced emotional pain

Like when another birthday passed, with no word from her dad

Her heart throbbed and little cracks started to form at the edges

Every time it beat, she felt a searing pain and a small rip would appear

It would go away for awhile

And then something else would happen

Like the time she saw her mom crying in the kitchen

Her heart would scream its pain so loud she couldn’t sleep

And her heart ripped apart a little more

It was really bad when she turned 18 and started having panic attacks

She was so worried that her heart would completely rip apart and she would die

And her mom would be all alone

She would wake up in a sweat

Crying and her raw red heart ripping in all the wrong places

This young woman and her mom decided to try to follow the advice of a new doctor

Who recommended that every time a rip would appear

The girl or her mom should get a sewing needle and some thread made out of twine and simply sew it up

This reminded the girl of a time when her cabbage patch lost her arm and her dad sewed her back up

Good as new but with a little scar that showed someone had loved her enough to fix her

They were shocked that this seemed to help

Every time something bad would happen

Her heart would rip a little more

And she or her mom would rush to get their needle and thread

And sew it a little more

Soon, her heart looked like battered war-torn soldiers clothing

All stitched together with black twine

Crissing and crossing all over her heart and in a hundred different directions

She felt even more fragile than she ever had

The only thing keeping her intact

Were haphazardly sewn together stitches

She felt like these stitches were somehow holding her whole life together

To keep her from falling apart any further

She wondered what would be the ultimate thing that would finally pull the stitches apart and leave her heart in pieces

She knew she was damaged goods

Maybe she always had been

Broken, cracked and irreparable

Too damaged to be helped

Like the cabbage patch doll who, after her dad left, suffered too many rips and tears to be put back together

There just wasn’t enough of her heart left to piece together

So she did the only thing she could

She hid the needle and thread and found her dad’s phone number

She sat on her bed and called him up

He picked up and she felt like maybe everything would be okay

She spoke to him for a minute or two

He sounded rushed and annoyed

Suddenly she heard yelling in the background

It sounded like a young boy

He was calling for his dad, telling him dinner was ready

She felt the familiar twinge of her heart ripping apart

Her father told her he was busy and said he would call her some other time and hung up

She sat back and let her heart fall apart

One last time

Later that day her mom found her laying on her perfectly made bed

Her eyes open and lifeless with her broken and bruised

Damaged heart

The Great In-Between

I hate the period of the ‘in between’

It can be anything

Transitioning from jobs, schools, homes etc

To me it’s a period of unrest

A feeling of general unease takes over me

I feel unsettled

As if my feet are not firmly grounded

And I’m at great risk of just floating away

Never to be heard from again

Or maybe spotted somewhere over the Pacific

Aimless and untethered

The ‘in between’ is the start of the unknown

The anticipatory anxiety of what comes next is excruciating

My frazzled mind jumping from one thought to another

And none of them with happy outcomes

I long for this period to be over so that I may feel the firm ground beneath me once again

So that I’m rooted

In place

And somehow finding comfort in being unmovable

Sturdy

Stable

Like a 100 year old tree with roots spread so far apart and deeply ingrained in the earth

I should like that

Very much

After all a 100 year old tree can’t just up and fly away

Not without a serious fight

Hope and all that could have been

What is hope?

When I read the following definition,

‘The feeling that what is wanted can be had or that events will turn out for the best’

It sounds far too subjective

A feeling

Wanting

Turn out for the best

If this was a gambling game

Who would take odds

Based on nothing more than feelings

Feelings impacted by beliefs, moods, opinions

And with an outcome that could turn out to be any which way

No guarantees

I don’t know

Maybe I’m too skeptical

Too cynical

Jaded

For hope

Or maybe

Hope is too vague

Too unrealistic

Too wishy-washy

For the likes of me

As hard as defining hope is,

Even harder is picturing it

What does hope look like?

I tried conjuring images of different things

Nothing exemplified what hope stands for

It all seemed too cheesy

Blue skies

Green pastures

None of which inspire

Feelings of hope

I guess if I try hard enough

I would say hope looks something like…

Eyes closed

Jaw slack

Relaxed posture

No tension in her body or features

Like she’s found peace

Or at least

Knows it’s coming to her

Calm

Serene

Confident

In knowing

That hope is tangible

And what she has hoped for more anything

Is hers for the taking

Maybe

One day

I will be able to close my eyes

And in a moment

Feel the tension leave my body

My breaths full

And Effortless

The racing thoughts fading away

The dull heaviness of depression being lifted

I wonder who that woman will be?

When everything weighing her down

Is finally gone

And it’s just her

The her that might have been

If life hadn’t turned her into someone else….

It’s never too late

A year and a half ago I only had an appreciation for Art other people created.

I always had creative urges within me.

To do something with hair, make up, my room, my body…To just see art around me.

And then when I needed it most

The ability to create art came to me

I was 37 years old

This wasn’t the way I thought my life would turn out.

I thought I’d be an old cool social worker working with disadvantaged youth…

then life happened…

Maybe through art I’ll find a way to become okay with that.

Maybe this is all part of the story of my life…

Quality Of Life

What defines quality of life?

Society would tell us

It’s a combination of good health, secure economic and housing status, family and friends and recreational activities

Reading over the aforementioned characteristics

It doesn’t seem like achieving a decent quality of life would be difficult

But all of that changes when you have a chronic illness

Especially one like MS

It doesn’t usually happen over night or in the blink of an eye

But over time

An MSer’s quality of life deteriorates or at the very least changes dramatically

Comparing myself to those qualities of a good

I can’t help but think I’m a little doomed

I don’t have good health

My economic security is interconnected to my chronic illness and changed greatly in the last few years

I’m lucky that I’m secure in my housing

My recreational activities have become limited

Friends and family especially during these trying times

Are not very accessible

And in the spirit of

transparency

I was never a very dependable friend

So these days

I can’t say I expect much from people

Anyway both family and friends come with their own sets of challenges

I recently had to take Gabapentin for a sensory pain I was having

The pain reduced probably by more than half

But my quality of life suffered

I felt lethargic and down

I didn’t complete any art for several days

I was pretty much restricted to my couch

So I was faced with the dilemma in making a choice between quality of life and pain management

I kept thinking

What’s the point of living if it consists of being like a zombie?

Granted I’d be a zombie in less pain

But a zombie nonetheless

I guess

In the end

I’d rather experience pain

And live

And doesn’t that just perfectly sum up my life?