‘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

‘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

‘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

I woke up thinking about my nonna

I don’t know why…

So I’d like to share with you a little about my nonna Concetta

She wore black for like 50 years after my grandfather passed away

She used to have really long hair

I remember being a kid and watching her in wonderment comb it and then put in a bun

She never wore it down so I felt like I had gotten a peak behind the wall

She took care of me during the school week

My cousins and I would go home for lunch and she’d be always be ready for us

It’s funny to me now

But back then she never missed a lunch

She always sat with us

She didn’t eat

I don’t know when she ate her lunch

But during our lunch time as we spoke to each other in English

She sat with us

Just being with us

I remember once my cousin was telling a story and said the word ‘stupid’ to describe someone

And she backhanded him lightening fast

Because she thought he had called her stupid

I remember hiding a grin and a laugh

One time my cousins and I took our time returning after school

We approached with a big group of friends

She was waiting on the veranda

Yelling and screaming in Italian

Putting her hand in between her teeth

I can’t explain it

It’s an Italian thing

Anyway

My cousin was so embarrassed in front of his non Italian friends

That he told everyone our nonna was a witch and had just put a spell on everyone

When no one was around she would sit on the couch and play cards on her lap

But as soon as someone showed up at the door

She’d sweep the evidence under the couch cushion

I don’t know why she didn’t want to be caught playing cards

But it always bothered me

Maybe she felt she’d be judged

I don’t know

As I got older I didn’t see her as much

I didn’t speak to her as much when I did see her

Embarrassed by my broken Italian that I had once spoken well

I’d say the usual greeting and whatnot

But didn’t really talk to her like I once had

We’d go visit her and my cousins would be there

We would sit at the table and laugh and tell stories in English

Reminiscing

And she would sit there

Like old times

Just smiling

Being with us

She got sick and older and frail

I went to the hospital to visit her

It was late at night

My cousin left to get us something from Tim’s

My nonna looked scared

I got up and went by her bed

She looked up at me and I whispered

‘Ti amo tanto Nonna’

She smiled weakly

Eventually she got better

She went home

I visited again

I got a text from my cousin

Saying la nonna had died

It actually autocorrected to the nonna had died

That stood out then

Like she was the only one

She passed away at home

I went to see her one last time

I went to her room

Where she laid in her bed

She looked so small

So frail

So unlike the strong woman I’d looked up to my whole life

There was so much I wanted to say

So much I wanted to thank her for

Time had run out

But it didn’t matter

She knew

I just didn’t realize no words were needed for her to understand

She always did

Ti amo tante e per sempre

The world, tomorrow

Its not the same world that I wake up to everyday

Some days

I wake up

And the world is a cold scary place

People use you and forget you

Even the ones that are supposed to love you

Sometimes I wake up

And it’s a stressful world

Filled with risks

And people I don’t trust

Sometimes I wake up

And it’s a lonely world

With no one around

There is one world I like waking up to most of all

On those days

I wake up

And it’s a beautiful world

Filled with kind people

And compassion

The colours around me are more vivid

The music I hear is perfect

The art I create comes easily

So I go to sleep

Every night

Not knowing which world I’ll find when I awake

It’s this big gamble

On the good days

I don’t want to close my eyes

In hopes that this world can last forever

On the dark days

I can’t wait to fall asleep

And

Hope hope hope

That tomorrow the world is beautiful again

That is what a life with mental illness is like

A hope

A gamble

A fear

A despair

And then doing it all over again

Me, the virus and a whole lot of free time…

It’s been awhile since I last wrote

There’s been a lot to process and adjust to

I was advised pretty early on to stay home

Which I’ve done

I’ve been home for 43 days

Every day I’ve struggled with anxiety and/or depression

It’s been one thing or another

As someone with mild agoraphobia I find it pretty ironic that being cooped up has me feeling anxious

Now all I want to do is go out and see people

I’ve had a few meltdowns

I feel afraid that if I do catch this virus, I’ll be one of the people that doesn’t make it through

I’m afraid that if it comes down to it

And we’ve run out of ventilators

I’ll be cast aside for a healthy persons survival

I’ve often thought and regretted having done my Lemtrada treatment

Which has made me extra vulnerable at this time

I keep thinking that if I hadn’t done it

Then maybe I wouldn’t have to be so cautious

I wouldn’t have the added worry of the blood disorder that I got as a side effect

There’s a whole lot of what ifs and coulda beens

It’s the lack of control that is particularly anxiety provoking

Which I’m sure is the case for many people

Who are not anxiety sufferers

I’ve been thinking a lot about the kids and youth who aren’t in school

I feel sorry that they’re stuck at home and I worry about the impact this will have on their mental health even when this is over

I keep thinking that the repercussions of this will be felt for many years to come

Economically, socially, emotionally…

And well

We’ve been pretty lucky thus far

We’ve been spoiled

Living in a society and part of the world where we don’t have to worry as much as others

So I’m not really sure I have a handle on how to adapt to this weird new ‘normal’

I’m not sure anyone does

I know that I can only take it day by day

Minute by minute

I can only focus on the right now

I can’t worry about tomorrow because it’s not here yet

I am grateful for being able to make art

I am grateful to have my partner being my contact with the outside world (for groceries and meds and etc)

I am happy that my family is still healthy and safe

And more than anything

I am so fucking grateful that Covid-19 didn’t happen last year amidst losing my mind and all that 😬

Stay safe everyone

‘The woods are lovely, dark and deep…’

I don’t know if humans are really equipped to face their own mortality

It’s just such a foreign concept

It’s the opposite of what we know

We breathe without thinking

It’s automatic

To think of our own deaths

Seems just wrong

With MS I don’t really have to think about it

It’s a lot of things

But it’s not fatal

When I was diagnosed with ITP (rare blood disorder) this past summer

It seemed surreal

I could die if I got cut

If I fell

The slightest thing would mean I could bleed to death

I remember when I was still unsure what was going on

Feeling certain that I was gonna die

It was scary and unknown

Clearly

I survived

But every time I find a bruise…

Every time I get my bloodwork done

I’m faced with that same thought

Have my platelets have dropped dangerously low?

It’s sort of become a scary new reality

And not entirely unknown

However this whole COVID-19 is different

I knew I was at a heightened risk

I’m immuno compromised

I have two autoimmune diseases and a rare blood disorder

Plus the treatment I underwent for my MS weakened my immune system

Seems like the odds are stacked against me

So I’ve been practicing self isolation since March 15

I won’t lie

I’ve been scared

I keep hearing about the people dying have preexisting heath conditions

As if that makes it more palatable

Like it makes it ok

I got an email from my super amazing hematologist

She reaffirmed what I already sorta knew

I’m at an increased risk for infection

Because of the MS related treatment and ITP

Now I’m scared all over again

I’m doing the best I can

Not leaving home

Taking care of myself and my sanity

But I can’t help but feel afraid

What if this time I don’t escape death?

What if this time it catches up to me?

What if

What if

What if

I know I can’t live my life based on what ifs

But I can’t pretend they don’t exist either

So I’m caught in this weird limbo

Between focusing on what’s happening right now

This tv show

This art piece

This blog

And

The world of what ifs

What if I catch this virus?

What if death catches me?

I’m not ready to face death

I’m not ready to face the mere thought of death

‘I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.’

‘…how blue the sky appears…blue enough to bruise a heart.’ Sanober Khan

Every time I scan my body for a bruise or petechiae

For the rest of my life

I’ll revert back to this past summer

And the disdain

I felt for my body

For betraying me

Yet again

I thought we’d come to an agreement after I lost my fucking mind in January 2019

I thought we were cool

Ready to coexist

Always together

Anxiety

Panic

Depression

MS

All of it

We were going to get through it all

But those damn blood bruises

A warning sign that my body wasn’t holding up its end of the bargain

Now even though I’m in some sort of remission

I scan my body

Hoping to not see those blotches on my skin

But when I do

Like this evening

I’m suddenly back to Florida in August

Angry

Afraid

Alone

With a body that was turning on me

A body that didn’t feel like mine anymore

I can’t help but miss the days when a stumble was just a misstep

And a bruise

Was just a fucking bruise