‘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?

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

Just another uninspiring sick person

This is how I look when I’ve been waiting a week for the MS CLINIC to call me back after reporting a new symptom. I’m not surprised but I’m disappointed. Of course I want to live in a world where MS doesn’t exist but im not a dreamer so what I actually want is to live in a world where people with all types of illnesses can get the help they need. Especially when they reach out. Twice. It’s hard not to feel abandoned and isolated when literally no one can offer you help. Yes I know be strong, keep fighting and all those other phrases meant to motivate…but sometimes I want to lay my sword and shield down and just be a scared vulnerable person who sometimes just needs some help. This is what it’s like having MS in Canada, the country with one of the highest rates of MS. -rant over

Fuck MS