Chronic Illness, Disability, Insecurities, Poems, Transverse Myelitis

Pieces

01/28/2017– I always hated the last stanza of this poem. Kinda awkward. I finally changed it. Still not perfect, but a lot better, in my opinion. πŸ™‚

I’m dedicating this poem to one of my best friends, Sarah Todd πŸ™‚ She’s been through a lot the last (almost) 6 years of her life, but has found new passions to replace the holes left by the old things she can no longer do. ST has found a way to pick up the pieces and put herself back together; I admire that a lot!! ❀

 

Pieces, broken cov’ring the floor;
A trail of me lead to the door.
I couldn’t keep together, me;
When a wave hitβ€” disparity.

Nobody knew, because my face
Was happy, smiling, full of grace.
But inside of me was a sea
Of anger, of sadness, not glee.

Was drowning in that water that
Consumed me; chased me like a cat
After a mouse. No one could see
The storm, the war inside of me.

So pieces, on the floor they lie;
Could leave them there to petrify.
Or I could pick them up, maybe,
And show the world I can be free.

Chronic Illness, Disability, My Favorites, Transverse Myelitis

The Little Things

This poem is dedicated to my friend Alex, who also battles TM. She helped spark this poem; we were having a deep conversation about this topic a couple weeks ago. She appears in this poem as “a girl”. :p

Our TM stories are very different, and yet we can still relate to each other in many ways!! I thought having another story interwoven into this poem would help get the point across, since the “little thing” vary from person to person. πŸ™‚ Enjoy! I’m proud of this one.

 

From the time I could hold a pencil,
Could form shaky letters with the graphite tip,
Only semi-legible,
I loved to write.

I’d write stories,
Imaginative and mysterious,
About wizards and dragons and princesses;
About talking flowers and animals, and taking a trip to the moon.

When I was a child,
I had a routine with my father.
A few days a week we’d practice pull-ups in the basement.
He taught me a lot about life with those pull-ups:
“You can always try to do one more.”

He taught me to push myself, and push myself I did,
In every aspect of my life.

I loved roller coasters,
Especially ones
With the biggest drop.

I loved the feeling of my stomach in my chest
And screaming loudly with my arms in the air.

I know a girl
Who loved fuzzy socks and hot showers,
And skipping and dancing while she walked.

When you’re paralyzed,
When you have a chronic illness,
A lot is taken away.

I can’t walk well; she can’t at all.
We can’t run or ride a bike,
And both of us
Have overwhelming
Pain and fatigue.

We’re teenagers,
And can’t keep up with our homework,
Let alone our friends.

But that’s not what puts a lump in our throats everyday.

When I think of the little things,
Like writing with my right hand,
Or doing pull-ups with my dad,
My heart
Aches.

When I think of riding a roller coaster,
When I think of the pleasant drop of my stomach
Instead of dizziness and pain
That lasts for
Hours,
I feel sick.

I miss them,
The little things in life.

When people look at someone who’s disabled,
When they find out what ails them,
They say that they’ll
Learn
To appreciate the obvious
Like walking and running.

But that’s hardly what people take for granted.

That girl
Cannot feel the warmth of the water dripping from the shower head
On her legs;
It’s something most of you experience
Every.
Single.
Day.

No one would give it a second thought,
And yet she’d kill to be able to feel it
Just once more.

It might not seem like much,
Since she can’t feel the wind traveling through her hair
As she runs,
Or move anywhere
Without pushing the metal rims
On hard rubber wheels.

And yet,
When she sees the water
Slashing across her lifeless legs
Every day,
The warmth is what she imagines and longs for.
Not walking.

You write with your dominant hand
Every
Single
Day.

You use it to write out checks,
To scribble out a grocery list,
To write a quick note to your mom:
“I’m at Jane’s house”.

You’ve written like that since kindergarten;
There’s no reason to give it
A second thought.

But I miss it.

I miss writing with my right hand,
But I can’t.

Paralysis has ruined it
And it’s doubtful it’ll be
“Fixed”.

Yes, it’s the little things that hurt the most;
We may never know them again.

It’s the little things that make my heart ache,
That make me the most nostalgic.

It’s the little things I most often wish to have back.

The minuscule,
“Unimportant”
Things are the ones we do
Every day.

The things that are part of a routine,
The ones we are most used to,
Are small puzzle pieces in life
That leave holes
When taken away.

And we want to find those pieces,
To put them back where they belong
Because they create a sense
Of normalcy.

Because when so much of your life has been taken away,
When so much is missing,
You crave the little things
Day
After
Day.

Chronic Illness, Disability, Personal Experiences, Transverse Myelitis

The Worst Parts

When you’re diagnosed with TM (or anything similar), and you’re paralyzed, you freak out and wonder if it’s forever. Because being paralyzed, being “trapped” in a body that can’t move the way you want it to, seems like the worst thing ever. You don’t think it could happen to YOU, and when it does it’s scary. But it’s easy to adapt to, easy to get used to. Sure, it’s not ideal; I mean, no one wants to be in a wheelchair. No one wants to be unable to walk, run, jump, and all that. Nobody wants that part of their life taken away, but when it happens, it doesn’t end up being that bad. The pain, fatigue, flare-ups, etc. are what really make you miserable. You can do anything an able-bodied person can do when you’re disabled; it just takes some creativity sometimes. But the other complications are what really hold you back and make you feel trapped. That’s what bothers me daily, what I wish every day to escape from.

Chronic Illness, Disability, Poems

Lost Childhood

As a young child,

Your biggest worries

Are the weather-

Will it rain today?-

And which annoying sibling

Stole your toy.

 

As a young teen,

Your biggest worries

Are clothes

And friends

And homework.

Other than that,

You have your life ahead of you.

 

What do you want to be when you grow up?

You get many more years

To think about that.

 

Who’s your best friend?

It may change soon, it may not.

Your answer might not be what it was a month ago.

But you have fun regardless,

Fun with the day’s BFF.

 

What will you wear for picture day?

Will it be a dress or a skirt,

Jeans or leggings?

In a year that will not matter;

You have your life ahead of you.

 

No problems as a young teen,

Young and in middle school,

Or as a little kid,

Playful and innocent,

Should last.

 

They’re temporary.

 

You’re young, you’re naΓ―ve.

 

You think it will last,

The care-free nature of childhood.

 

You feel old,

And yet you don’t truly need to worry.

 

You shouldn’t have to worry about

Adults in white coats

And stethoscopes,

 

Thin white sheets

On a button-filled bed,

 

Tests and tests and tests

To tell you what’s wrong.

 

Pills to make you feel better.

 

You shouldn’t have to worry about

Whether or not you’ll get better.

Whether or not your life will begin again,

Whether or not these fears will last

The rest of your life.

 

You don’t think they will last.

 

Why should they?

 

They never have before

 

But slowly you are forced to realize,

As a child,

That they’re not going to leave.

 

They’ll stay with you forever,

Unlike 6th grade picture day

Or a failed math quiz.

 

Unlike a lost toy,

Or wet clothes.

 

They’re forced to grow up,

Forced to mature beyond their time.

 

One day

We might find a cure,

A cure for illnesses

Affecting children.

 

One day

We might find cures,

And save the innocent, necessary childhood

Of many.

 

We can only hope.

And believe.

And pray.

And be aware.

Chronic Illness, Disability, Poems, Transverse Myelitis

Daily Battle

American Revolution.

Civil War.

World War I.

 

What do they have in common?

 

Pain.

Violence.

Suffering.

Fatigue.

Fear.

 

My war

Is not unlike those.

 

There are fights.

 

All day every day,

I battle.

 

I battle the enemy,

Hoping to win.

 

It lasts a long time.

 

I get no sleep;

I am always tired,

But the pain

Keeps me awake.

 

Strength is needed,

Strength to thrust the sword

Or hold up the gun.

 

Strength

To fight back.

 

Energy is drained.

 

Why so quickly?

 

Energy is drained,

And I wish I could take a break

To re-charge.

 

Can’t concentrate

On anything else.

 

I can’t leave the enemy

To fight me, defenseless.

It won’t win.

It can’t.

 

Every second spent distracted,

I am hit

And wounded.

 

Pain

Shoots through my body.

 

I am knocked down,

But I get back up.

 

Energy is drained

Some more.

 

I just want a break,

Just for one second.

 

The lights dim outside,

And it’s ready to sleep,

Ready to forget the battles.

 

But the enemy attacks

At my weakest point.

 

Why didn’t I see it?

 

I spend the night

Fighting some more.

 

And the cycle begins,

Everyday more exhausting

And painful

Than the last.

 

When the sun comes out,

When I see a moment of light,

When I knock them down for just barely long enough,

I see

What makes it all worth it.

I see

What I’m fighting for.

 

I fight

For my dignity.

 

For my family,

For my friends.

 

I fight,

To help others

Who battle as well.

 

I fight

For my pride,

 

For my God,

 

For my life.

 

And I am grateful

That I have reasons,

That life is not just an endless battle.

 

For the battle is inside of me,

And I cannot escape.

Chronic Illness, Disability, Insecurities, Poems, Transverse Myelitis

One More Time

When hope
Has faltered;

When the last
Straw is gone;

When the world is dark,
Deep clouds
That cover
The
Sun;

When the towel’s
Thrown;

When loneliness
Has grown;

When it seems there’s nowhere,
Nowhere to go;

When the answer to all
Seems to be ‘no’;

Just
Listen to the wind chime,

Remember
Life’s a mountain to climb,

Look at
All that’s in its prime,

And try,

Try
One
More
Time.

Chronic Illness, Disability, Friendship, Insecurities, Poems, Transverse Myelitis

Everything We Love

Personally I find this slightly cheesy, but that’s ok. Also, this was supposed to be a song as well, but again I got lazy and just tweaked it to be a poem. πŸ™‚
Appreciate
The things
That are
Loved.

For those things
Can be taken
Gone
In an instant.

In a snap of fingers,
A puff of breath,
A tick of a clock,
A skip of a rock.

Keep the seconds
Of the life that we live
Counted.

Because everything we know,
Everything we have,
Everything we love,
Can go.

Take care of the things
That can be gone.

They can leave

In a snap of fingers,
A puff of breath,
In a tick of a clock,
The skip of a rock.

If we appreciate
Anything at all

If we appreciate
Things big and small

If we count
the seconds
Of
The
Life
We live
All the time,

We’ll know
That
Everything we love
Can
Go.