Writing

Here are a few poems and excerpts we have gathered together that have helped us throughout this journey. Poetry is an amazing mode of expression to conceptualize abstract concepts so that they can be grasped and shared.

The tide

you crumble softly, quietly,

subtle in your glorious defeat. 

you are alone— Solitary

Strength— leaving behind little crumbs, hoping,

Praying you will one day find your way back

Home, or someone might follow them to you. 

 

you are drowning, parts of you— 

who you once were— diluted in the water.

dissolving away 

parts of you 

you thought you owned.

 

you are eroding,

microscopically etched away into a vast sea,

leaving sharp edges behind, broken glass

Shattered never to be whole again. Your screams 

 

Suppressed by the deafening roars of the waves

crashing onto the shore. 

you idly pull against the tide, kicking,

scratching, flailing about, Desperate to be freed,

to spur the slightest disruption: a ripple

in the midst of an ever-rolling sea. 

 

But your swings are no match for the 

Mighty Arms of Poseidon. 

 

you are Poseidon’s Prisoner. Property. 

He strings you along to wherever He so desires.

you must know how small you are.

Insignificant, powerless. pulled pushed stretched yanked

back and forth. dizzy…

 

someone hear my cries 

someone soothe my screams 

someone dry my tears 

someone help me. please 

 

salt water fills your lungs, 

your insides, sizzling—

and you scream, your throat burning

 

burning a fire in the vast sea. 

your rage surging in flames beneath the surface.

but the tide suffocates your fire.

You Fight for Every Breath.

 

your feet grope for the shore but the ground has

fallen from beneath you.

you must know how far you have drifted…

 

Still, you desperately grasp for anything that feels

familiar, as a child reaches for their mother.

for anything that feels warm

Like Home.

 

But alas, all you feel is the water slipping 

through your fingers, mocking your futile efforts

the disappointment creating a sort of

hole in the pit of your stomach.

 

Shattered Hope.

 

Oh, how to trust what you see before you 

when you know your sight is impaired, flooded by

the salt water to which your eyes have become

accustomed

 

and you’re not certain 

of whether the 

salty searing sensation in your 

eyes are from the heavy waves or the

salinity of your own tears–

 

tears which once belonged to you but are now

carried off by the tide. seamless

as they leave your eyes and float away.

mingle with the dark mischievous waters

until they become One with them. Betrayal.

 

you desperately call out for help but

the rest of the world lives on the shore. 

sunbathing, listening to the calming sounds of the ocean

which almost looks… peaceful

from afar.

 

Can you hear me?

ALS Heroes Family Photo
Image of a man with ALS

 Just another day

Just another day.

another breath

another chance 

to laugh, to cry 

To wonder why.

To Heal.

Heal from the wounds of yesterday

Endure the wounds of today

Brace for the wounds of tomorrow

 

But healing takes time.

And at the end of the day

old wounds become renewed

fresh wounds are newly inflicted.

 

The damage begins to 

accumulate growing 

stronger running deeper 

Darker, defining us

 

Until they become scars,

And we succumb–

The sum of our scars;

 

Forever Damaged, 

Never to be Healed.

 

Just another day. 

Another beginning, after the beginning.

Another end, before the end. 

An opportunity. 

A potential. 

A mysterious new creature.

Waking up 

Trudging down the stairs

Deciding what today will look like

Afraid of what ill see

In his eyes

In his broken smile

In his voice

Will he be worse?

Worse than yesterday?

Yesterday was worse than the day before. 

Even though they both began

Began as just another day. 

 

Screaming out of pain, 

fear, 

sweat dripping,

Crying out, 

tongue thick vowels running into each other like a Needle and Thread.

 

Bottles everywhere. Piles upon piles of pills

—if only we had as much hope as we had pills–

Books and research and medical bills 

piling up in the corners

Checklists and documents and doctors 

On the phone for hours. 

 

What will tomorrow hold?

All I know is,

For better or for worse, 

It will be just another day. 

 

 

 

my moon

I am afraid. 

Cold. Frozen solid. 

I cannot feel. I cannot move. 

And each time I try, I fail. 

 

I am empty. 

I am void. 

I am waiting.

 

Everything, the world, the stars

Have turned off. 

And what’s left is silence,

Darkness. 

 

Now, I gaze up at the blackness of the cold night sky, 

A sky I don’t recognize,

And I spot a silver sliver of moonlight. 

So bold, so bright;

Stunning in its solitude. 

Shining brightly in the dark black sky. 

 

It is a waning moon. The kind that becomes lesser every night

Every night decaying, dying, declining into nothingness. 

But nonetheless, it shines tonight. 

Bright. Stable. Strong. 

As if it could shine forever. 

But I know it won’t. 

 

And so it wanes. And wanes. 

And wanes until one night

I look up into the sky and all I see

Is nothingness, void, darkness. 

 

On this night,

This night of darkness,

There is still hope. 

Because the moon is never actually gone. 

And even if tonight lasts an eternity

I know that though I may not see it,

My moon still exists. 

In a different place, to someone else’s eyes. 

Perhaps, to His eyes. 

 

And so I sit in the darkness. 

And remember. 

And one night, I open my eyes and gaze up into the dark black sky 

And I spot a star.

Image of group of people looking for a cure for ALS
Image of a man with ALS

TRUE COURAGE

True Courage is not denying the cards you have been dealt. Rather, it is knowing that you can still win a game with a bad hand. And when the odds are not in your favor, you keep moving, knowing there are still things you can control. 

True Courage is surrender and it is resilience: it is surrendering to what you cannot control, and it is the resolve to take control of your destiny, which is still in your hands. It is coming to peace with your circumstances and learning to rise from the ashes. 

True Courage exists in moments of weakness: moments where it seems the whole world is falling apart; moments where you have reached your breaking point and are so close to giving up. These are the moments when True Courage can be seen most clearly, because True Courage exists in the ability to take another step when you have hit rock bottom. 

True Courage is when the human will overpowers the fear of defeat. True Courage is not short-lived… it is a constant flame which does not die out, no matter what forces flood it. It continues to burn because of this undying will. And because even in the face of ultimate defeat, this will continues to be a source of power and faith. 

True Courage is faith. Whether secular or not, faith in something is necessary in order to be Truly Courageous. Faith in oneself. Faith in one’s destiny. A staunch belief in something that cannot be explained. 

CHANGE

Life is fickle.
In a split second, everything can change,
In the first cry of a baby,
In a last breath.
I’d like to think there’s a reason.
A method to the madness.
That every winding path is meant for a destination.
But I don’t know. I don’t know anything.
I guess that’s why they call it hope.
And not truth.
In life, there is intense happiness, intense warmth, intense love.
There is also intense sadness, intense anger, intense pain.
It makes up the balance of the universe.
We cannot have one without the other.
Sometimes, I think I’d rather not have either side.
That I’d rather live in the middle.
But now, I know that that is not living.
Because in every intense moment of pain, there is a newfound appreciation of every intense moment of love.
In every intense moment of fear, there is a new reason for hope.
So yes, I do believe there’s a reason. No matter how small or how large.
There is a method to the madness.

Image of group of people looking for a cure for ALS
Image of man looking for cure for ALS

JOY

Joy is relative. Different for everyone it beholds. It’s unique in its own way, neither right nor wrong, hot nor cold, sweet nor bitter.

Joy is personal. It’s something you have to feel for yourself; nobody can feel it for you and nobody can give you theirs.

Joy is bold. Makes the rules as it goes, bows to no one. It is an exotic creature in itself with mysterious ways. The moment you stop trying to understand it, only then will it open up to you. You are submissive to it. You cannot hold it in chains; you must set it free. Let it reveal to you its ability and it’s potential.

Joy is power. it’s a glorious flame which flourishes and flows in complete synch. Every subtle, smooth movement with a larger purpose. It can be harnessed but never controlled. It pulls you into its current.

Joy is harmony. it exists in the moments where everything fits together in a perfect click and everything in the dark remains unknown but you make peace with this and can bask the warm light above.

Joy is everywhere, eternal, everlasting, encompassing. In the deepest depths of distorting darkness, lies a microscopic spark of blinding light… joy is hope. Joy is the tunnel transporting at the speed of light out of the pit in which you lie to a brighter more beautiful paradise.

Joy is fickle, it’s momentary. Held in a minute, second, millisecond of intense warmth and serenity.

Joy is slippery, slipping through your fingers; like a firefly in your hands, so small, so tender. Lying in your palm. Vulnerable yet powerful. Its light streams through your fingers and no matter how hard you try, you cant conceal it.

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