chronic illness, life, Poetry

Voodoo Doll: MS Awareness

Huge stakes pierce my heels

Burning red hot fire

Millions of minuscule knives

Flay the insides of my feet

A giant vegetable peeler slices off

The bottoms

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over

*

The burning piercing spreads

To hands, up legs, then forearms

Who needs to work on abs

When they stay contracted constantly

Holding in the moans

And the nausea from the pain?

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over


I don’t really believe that my chronic illness is a matter of revenge, but it’s an easy trap to fall into when I’m trying to pretend all is well but the pain is overwhelming. I think of myself as a kind person but I know in my past immature, insecure life I wasn’t always the best person I could be. However, we can only go forward and try to do better.

Kindness is the answer.

❤️ Amanda

gratitude, life, Poetry

West Coast: Unplugged Joy

Paradise.

It’s not the tropics.

I’m bundled up in a blanket with my jacket on,

absorbing vitamin D through my face and hands.

Not a margarita but a BC cider in my hand

No internet

No wifi

Just the wide ocean

The waves

Relentless in their battering of the rocky shore

Their energy

And constant loyal presence

Build inside me

Until the joy wants to burst

The tiny fireworks of the sun

Skittering across the ever-changing surface of the ocean

Blue jays in the pine trees

Flitting about, a never-ending hunt

All the lives under the surface

Their mysterious ways of surviving

Nature is thriving, not just surviving

Despite our best efforts

And it doesn’t, to our knowledge, have the capacity to experience joy

That bubbly lightness that expands your rib cage

That makes you repeat, over and over – wow!

There is no word strong enough,

That adequately describes that feeling

That appreciation for being alive,

For our many blessings,

Despite, or because of, our challenges

Those moments can be fleeting and far between

But what magic to experience them at all

It’s never enough,

No matter how much we try to appreciate each amazing moment

In this miraculous life

But it’s all we can do

And aren’t we lucky?

Check out my gorgeous Mohawk and bright blue tail feathers.

Look at me dance. How can you resist?

Feed me! No. We didn’t, but he was sure cute!

For the right price, I might reveal our secret escape. 😏

Seriously though, the chance to go away for three nights with no distractions and such an inspiring view is why we return as often as we can. We originally came on our honeymoon, but at that point we could only afford one night and spent the rest of our honeymoon in a cabin beside a clearcut. 😳

We are so grateful for every minute we get to spend here. We were more reflective because we were celebrating my husband’s 50th birthday (SAY WHAAAAAT???) and we have a long history to celebrate. We appreciate every single moment.

And yet the time still flies…

❤️ Amanda

life, Poetry

Endings

Endings, beginnings, life

Endings

Why are endings so hard?

We should be masters

Everything ends.

Baby

First the womb

Then the breast

Or bottle, depending

Diapers

Soother

Stroller

Midnight snuggles

Elementary

Innocent imagination

Friendship without agenda

Playing with toys

Middle

Budding breasts

First period

First boyfriend

Hormone fights

This is the end of the beginning.

High school

Independence

Attitude

Virginity???

First view of future

Twenties

High school without boundaries

Knowing everything without knowing you know nothing

Veil lifting

First job

First love

First orgasm – don’t lie

Marriage

Wedding- so much planning, over so fast

Honeymoon

First house

Children

Births – miraculous torture

First steps

First words

Preschool

School years

Empty nest

Sad freedom

First view of legacy

Nostalgia

It all went so fast

Retirement

Adventure, at first

Money, an issue

Health, sneaks up

Full circle

Decisions

Confusion

Hand over

The end.

Beginnings are endings. Endings are beginnings.

Endings, beginnings, life

❤️ Amanda

life, Poetry

The End – 20 years before retirement

On June 28, 2018, I walked out of ‘my’ classroom for the last time. I haven’t been teaching for the last three years thanks to the monster, but it was still my position and my room to come back to, if I was able. No more.

I went back to pick up this clown (I know, weird.) that I used to have in my childhood bedroom. I used him to teach about perseverance and hanging on when things get difficult so it seemed appropriate to bring him home and hang him in the garden. I had forgotten that I had about ten other boxes of teaching resources that I had created and stored away, as well as various toys and games.

Besides retrieving some stationary supplies and containers that I had bought myself, I also came across a file of photos and special thank you cards I had received over the years. Before I thought to have a look at them and focus on the good, I had to let myself wallow in the sadness for awhile. I tried distracting myself with feel-good videos on Facebook, but the words and emotions had to come out.


The End

The words won’t come

It hurts too much

Distract

Distract

This time the pain’s not physical.

The road stretches in front

Up hills and

Down

But you’re never prepared

For the S curve.

Suddenly

Life changes direction

Floundering

Stumbling

This pain is not physical.

What if?

How come?

Did I?

And the ever popular

Why me?

A career takes a long time to build

So many layers of learning

Acquired only through years of experience

Successes

Failures

But always growth.

Over

The end

No fanfare

No goodbye

Sorting through once important things

Leaving it all behind for others

Hopefully not for the garbage

This pain is not physical.

This pain is suffocating.


Heavy. As I’ve gotten older, my eyes have started doing this terrible swelling thing whenever I cry. I look like the poor kid from ‘Mask’ today. But, perspective has returned.

I can’t change the direction my life has taken, all I can do is make the most of where I’m going. I may not have had as many years as I would have liked to become the teacher I wanted to be, but I have so many wonderful memories. The feeling of knowing that you have touched young lives and started off their educational journey on a positive note, is priceless.

Eager students, brilliant colleagues, appreciative parents and the wonder and simplicity of kid art. These are the things I choose to focus on, instead of what might have been. Life only goes in one direction. I’m on a new path and I’m going to continue striving to do the best I can and be the best person I can be. In that way, nothing has changed.


Cherubic faces and cherished colleagues
Parents taking the time to acknowledge means so much
And even more from the kids! Love their phonetic spelling. 🙂

Toot toot! Such a thoughtful gift from a parent.

The list above was part of a time capsule project in celebration of the centennial of our school. I love how many of them spoke about extra play time after recess. Kids learn through play, and they know it.

I want to end this post on a lighter note with some of the cute and often mind-blowingly wise answers they gave to the question:

What advice would you give to future generations?”

– Follow what the teacher tells you to do. Have a really good life, be smart, grow up to be really proud about yourself.

– Don’t worry.

– I would give homeless people a home, I would make everything in the world free, I would make as much water as there could be, and I would make sure the world never ends.

– If somebody didn’t know they were being a little mean, I would like to tell them not to be mean.

– Take care of yourself.

– To be a good learner.

– That recess is an hour long and the time to eat their lunch is longer so they don’t have to rush, and that they get lots of playtime. Pets in the school, a bunch of flowers for the field and lollipops for life.

– Keep safe. Grow more trees.

– If they didn’t know how to fly a kite I would teach them.

– Don’t play with matches.

– Go west, that’s the best way to go. (🤣 Boy, I loved that kid! You can just imagine…)

– Know how to play video games.

– Give them advice on how to be a good spy.

– Listen to their teacher and love their family.

– Have fun and learn lots.

– Work hard.

– Love is the most important thing.

I’d say they pretty much have it covered. 😊

On a final note, I am so grateful for the support I have received from people in my personal life as well as many unmet fellow Spoonies in this new chapter. There is an awful lot of ugliness in the world and unfortunately that is often the focus in the news. There is also a lot of love, empathy and compassion flowing quietly underneath. Thank you so much to the kind souls who have reached out in support and understanding, it helps so much. Love is, truly, the most important thing.

Thanks so much for stopping by. Have a wonderful week!

❤️ Amanda

When the going gets tough, hang on tight. Try again tomorrow. 💕
Poetry

FEAR

First of all, I have to acknowledge the overwhelming positive support I got for my last post from my various ms ‘families’. For an introvert that overanalyses every social interaction (yeah, I think they call that social anxiety 🤔 ), it took me a long time to put myself out in cyber world and open myself to potential criticism. Not that I expect rave reviews, constructive feedback is always welcome. But we all know that feeling of ‘what if everybody hates it?’ Right? Everybody feels that, right? 😉

Anyway, thank you to everybody who clicked and read and commented! I am astounded at the support and encouragement, and so grateful to be a member of such amazing, caring groups.

This is a poem I wrote when I was amping myself up to share my writing. Fear is another of those emotions, like guilt, that many of us try to ignore or fight against. There is a tendency to distract ourselves from the ‘negative’ emotions in life but when we face them head on they provide the counterbalance to the positive emotions we all strive for. You can’t have one without the other.

While fear is a universal emotion, it develops a particularly strong flavour when one receives a diagnosis of multiple sclerosis. Being told you have an incurable neurodegenerative disease, that nobody knows what causes it and there is no way to predict what damage will be inflicted on your body, introduces a whole new level of trepidation. Add to that the daily adventure of never knowing what symptoms might crop up to stop you or slow you down, and the accumulation of disabilities that strip away the identity you have built up over years or decades, and the fear can be paralysing.

I’m coming up on the third anniversary (that so does not seem the right word) of my diagnosis. Three years since I left the classroom. Three years coming to terms with my new normal, trying to heal and to carve a new identity for myself. I realize now that fear was the main thing holding me back from moving on to a new chapter. It’s still there, making my palms sweat as I type this, imagining putting out another piece of myself. But I will face the fear, because if there is one thing I have learned over the past three years, stagnating is not an option and pushing through the fear is the only way to get to the light.

❤️

FEAR

Creeping

Lurking

Hiding behind the mask

The mask of fine

It paralyses without acknowledgement

So ingrained we don’t even realize

The control it has

How powerless we are

Unless we face it

Under the bed

In the closet

The dark

Untried adventures

Nebulous

Heart racing

Skin crawling

Sweat dripping

Light on

Distract

All is fine

Everything is fine

Fine but stagnant

If you let it overpower

Stuck in your small world

Beating against the bars

The bars you hold onto

Justifying

Numbing

Distracting

Wilting

Fight for the light

The dark will always be there

Give it a nod

Let yourself feel it

Then

Move on past

Move into the light

So much brighter

Reflecting the dark

Dark loses power in the light

The light is stronger for the dark

ALC – 17/05/18