‘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It feels outdated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…

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?

Some days are just like that…

I guess this has become like a journal for me

I write here and I don’t care who reads it

Or who doesn’t

It’s cathartic

In ways that I can’t even express

So Dear Diary,

I had a bad day

Maybe a bad few days

After increasing my dose with the gabapentin

It had a really sedating effect on me

I take a lot of other meds so it seems with the increase

I was just being knocked out

So I’m back on the one pill

Still in pain

So I’m not sure where that leaves me

I called the clinic to inquire about a lesser dose

So we’ll see

I also had my monthly labwork

It’s for both Lemtrada

And for my low platelets

The nurse came to the condo again

It didn’t go well

A vein blew

If you have a blown vein, it means that the vein has ruptured and is leaking blood. It happens when a nurse or other healthcare professional attempts to insert a needle into a vein, and things don’t go quite right.

Healthline.com

I’m in a lot of pain

My left hand

My right arm

Today life is hard

Tonight I just want to close my eyes

And hope that when I dream

There is no pain

No fear

No regret

‘Let’s go to Never Land and never come back till forever ends.’

Yesterday I dreamed I was free

I could move freely

I could fly anywhere

My mind was a safe place

It was like a children’s playground

That I was free to explore

I could stand in the middle of the universe

With my arms outstretched

My head lifted to see the sky above

My eyes wide and bright

The world I saw was clearly defined but with no sharp edges

I could see kindness pouring out of strangers faces

I felt warmth

All around me

It was like having some soup on the coldest day of the year

And in that moment every thing is just right

Even if it’s only soup

And it’s only a dream

But morning comes too fast

And the sun is too bright and it hurts my eyes

And it’s too hot and my arm throbs

And nothing feels as soothing as that soup did

I woke up

And all I see are sharp edges and corners that lead to scary places

People aren’t so kind

And I’m warned not to go outside

And the only place I can stretch out and look above me

Is on my bed

And so all I can do is

Hope that when sleep takes me

My dreams are about playgrounds and hot soup on a cold day and kindness all around me

But maybe if I close my eyes really right

I can stay in that dreamland just a little while longer

Pity party of one

I’m sick of my body being so broken

The nurse just left

I’m laying down with an ice pack on my hand

She got the vein in my hand but push inreally deep

The veins were rolling

The blood was oozing out so slowly

I could feel myself becoming nauseous

I felt weaker as she took an extra vial bc she wasn’t sure there had been enough blood before

I don’t get it

It’s not a lot blood

But I feel drained

Completely

I’ve been doing this for so long

I hate how it’s not easier

My hand hurts

No

The inside of my hand hurts

The vein

That I shouldn’t be able to feel

I hate how wrong that feels

I hate that I felt the need to apologize to her because of my shitty veins

I hate that it feels so unfair

I hate how things seemed to have piled up after the MS diagnosis

I hate that I still have to this for at least another 3 years

I hate that I did the Lemtrada treatment

I hate that I got ITP as a result

Most of all

I hate that I’m crying about it now

‘I used to be somebody’- NIN

I’ve been off of work for two years

On long term disability

Every day the probability of returning to my old job felt further away

Yesterday I received an email from my employer

Officially terminating my employment

It hit me hard

You might think it’s no big deal since I’ve been off work for so long

You’d be wrong

I felt like I couldn’t breathe

I reread the email so many times

The words blended together

Floating on the screen

They didn’t make sense anymore

I worked there for 6 years

I’ve been working in this field for over 12 years

Now it’s over

Officially I guess

I’m no longer a youth worker

I don’t know what I am

My name is Angela and I used to be a youth worker