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 na√Įve.

 

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. ūüôā
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.

Chronic Illness, Disability, Personal Experiences, Transverse Myelitis

Life is a Box of Chocolates…

That Forrest Gump quote:

“Life is a box of chocolates. You never know what you’re gonna get.”

I got the chocolate nobody wanted.¬†The extra,¬†the last one left, the one smushed and cracked.¬†I had to take it; it wouldn’t be polite not to.

From the outside, I had no idea what I was in for. It seemed impossible to gain the courage to put it in my mouth. But when I did, I was glad.

Inside of¬†that dusty, cracked chocolate¬†was nothing I had ever tasted before.¬†Some people, the ones with perfectly-shaped chocolate, filled with gooey caramel or fluffy truffle that makes your mouth water at the sight, may view the differences as bad. But that’s only because it was one of a kind; they didn’t get to see the inside.

They may go¬†“poor thing,¬†stuck with that crappy chocolate”.

And it’s true that¬†I had to get through the stale shell,¬†but it was worth it because it came with a lifetime’s worth of satisfactions.

That is my life living with Transverse Myelitis.

At first, I didn’t know if anything was going to get better. But once I got past that hard shell,
I realized that my life is unique.¬†It’s different,¬†and although people¬†probably do say:¬†“Poor thing,
stuck with that crappy TM,”¬†they don’t actually know¬†what’s inside.¬†They don’t know¬†that what’s inside is rewarding¬†because every time I’m able to do¬†something (anything)¬†again,¬†like tie my shoes¬†or run a few meters,¬†I appreciate it much more than I did before.

That is the tasty, hidden part that nobody but me craves, because they’ve never gotten the chance
to see it.

So I say:¬†“poor them”¬†to anyone who doesn’t know¬†what a real accomplishment is,¬†because knowing that¬†you’ve accomplished something,¬†big¬†or¬†small,¬†is that secret ingredient.

The secret ingredient to the inside of any piece of chocolate, crappy on the outside or not.

Chronic Illness, Disability, Personal Experiences, Running, School/Career, Transverse Myelitis

Why I Run

Why do I like to run?

I mean, why would anyone?

I scroll through social media and see all these memes about not running. I look at them and just have to shake my head, because those who don’t run are greatly missing out.

Sure, it’s hard work, and definitely ‘fun’ at first glance. To me, though, it’s perfect.

I don’t run to stay in shape; I run because running is ME. I feel my feet hit the ground and feel it align with the rhythm of my breathing. I feel hot and sweaty and disgusting, but that’s just the best feeling. I feel aches and pains throughout my body, as all runners do, but I push through them with ease because I have learned to, like anything, and I’m strong. Runners are strong.

 

snhmhfsmf (2)
Me running in 7th grade, before TM
running3
Me running in 9th grade, after TM

 

 

 

 

 

 

 

 

 

 

I’m proud to call myself a runner,¬†and I’m proud every time I finish a race,¬†whether it be 800 meters¬†or 6 miles.¬†I’m proud¬†of the technique I have developed¬†in running different distances,¬†a technique¬†that works.

Not every run leaves me feeling fulfilled,¬†and every time that¬†I leave without satisfaction¬†just leaves¬†me¬†hungry¬†for¬†more;¬†I know¬†that I’ll¬†do better¬†next time.

And racing.¬†Racing is¬†stressful,¬†and sometimes¬†I wish that¬†I hadn’t signed up for it,¬†but¬†once I’ve started,¬†I fly.¬†I dodge¬†and zigzag through and pass¬†people, some races more than others.¬†When it’s track or cross country,¬†my peers,¬†I waste a little energy¬†whispering¬†“good job” as I pass,¬†because every runner, even my competitors,¬†is¬†my¬†team.¬†I’m not different¬†to them,¬†and they’re not different¬†to me.¬†We’re simply all runners.¬†We all love it,¬†and we all spent¬†a heck of a lot of ourselves getting¬†to where we got.

Running, in a way, reflects TM, and it definitely prepared me. For a year and a half I studied for
an important test¬†without knowing it,¬†and¬†I’m glad I did.