In My Words: Leah Wiatrzyk

My name is Leah. I am a daughter, sister, mother, wife, and so much more. I have been living with ALS for about five years now. Before ALS, I worked as a phlebotomist, which ended when I lost hand function. I was a fitness instructor and, again, let go of that when my voice was no longer audible. I stopped driving my kids to school and practice when my body couldn’t do it anymore. Each day is more challenging than the next. It has been hard both physically and mentally to adapt, as well as for my family and friends who continue to support me. Poetry is an outlet for what I was feeling. It’s difficult to lose so much of myself, but at least I can share myself through writing. It’s also a way to have a glimpse of what someone with ALS is going through. Two years ago, I wrote a poetry book called  Paralyzing Poetry. The poem below is a piece from that book.

Hot water runs out of the faucet,

As bubbles build like mountains.

Filling the tub with warm foam.

Safely, stepping over the ledge,

The bubbles pop at the touch.

No longer can I wash myself,

I held tightly onto this.

Often walking my fingers up the wall,

Then leaping my hands to my head,

Leaning my elbows on the wall.

It worked for a little while,

Until my arms finally gave out.

Now, someone else scrubs in honey shampoo,

And suds my back carefully.

I fuss over conditioner residue,

Wishing this time was mine alone.

In the beginning, I’d burst into tears,

Part of my independence taken from me.

Caregivers waiting patiently with a towel,

Pity in their eyes, as I try to calm down.

It’s ok to be sad, and let the tears fall,

Like hot water through an open faucet.

But it weighs me down.

This shouldn’t be me, too young to be in this

state.

I was the caregiver, meant to help others.

Yet, here I am, needing help from another.

I appreciate it, and hate it at the same time.

Thankful people are willing to help me,

And jealous their hands work as mine should,

but don’t.

They gracefully sweep their arms up in the air,

While gravity weighs mine down.

Nerves too battered to ignite more than a

twitch in my efforts

I don’t want to be burdened with the heaviness

of my muscles atrophy.

Or cry every time someone helps me.

This isn’t how I wanted things to go,

But it’s what I’ve been given.

Sometimes my silver lining is someone so

graciously willing to wash my hair.

“In My Words” is an ALS Canada story series illustrating life impacted by ALS through first-person storytelling. Whether that’s through the written word, audio, art, music, etc., community members will share their experience in their own way.