I Wonder

I sit by the window and watch the world go by
I often wonder can they see me when I cry?

I look at the phone hanging on the wall
Wondering why they no longer call.

I wonder what people see when they look at me
The diseased-riddled person or who I want to be?

I wonder what people would say if they knew
I often pray at night to no longer be with you.

It isn’t I'm not grateful for each day that I get
It’s living with chronic pain that I want to forget.

The future I am facing fills me with fright
and pain consumes me all through the night.

They say to be strong, take each day as it comes
They can't understand where I am coming from.

I try to be the person you always need me to be
but rarely do I feel that you do that for me.

I wonder if you knew the truth hidden behind this smile
if you'd have the courage to live in my body for a while?

I want the same things as everyone else does to
that society values me the same way they do you.

I wonder do you know that my pain will never cease
Until the day you say to me, may you rest in peace.

Something Blue

Do you ever wonder how the sky could be so blue
When you have such a deep sadness inside of you

Do you sometimes laugh and pretend to be a clown
Only to shed your tears when there’s no one around

Do you ever wonder how you can feel so invisible
Even though you have people all around you still

Do you ever wish someone could see your pain
That on your heart leaves such a dark stain

Do you sometimes wish the world could hear
The whispers in darkness that speak your fear

My wish for you the next time you are there
To remember there are those of us who care

I want you to know that you are never alone
So remove the mask and let your soul be shown

If it’s tears of sadness or joy that run down your face,
Either is accepted and protected in this safe place

So next time you ever wonder why the sky is blue
It’s a reminder that your AS family supports you.


Dedicated To Sharon

They Say

They say “It’s not like cancer” what the hell is that suppose to mean?
Some of us take chemo, believe me, it’s not as easy as it seems.

They say, “It isn’t terminal, it’s not like you’re going to die.”
I wonder what they’d say if they knew how many times I’ve tried.

So often I hear, “I thought you’d be well by today.”
Honestly, people do you really think I’d want to live this way?

I’ve been called lazy, hypochondriac and thought a fool.
I never realized those words could really feel that cruel.

I have an incurable disease that doctors don’t understand what it is.
An invisible autoimmune disease that’s called Ankylosing Spondylitis.

I try so hard to explain only to get that usual blank stare.
It often makes me wonder do they even really care.

I get a lot of “you don’t look sick” so people assume I fake.
I wish they understood just how much energy everything takes.

They tell me to smile, be positive, stand tall and stay strong,
But it’s so hard to when no one understands what is really wrong.

Sometimes I feel hopeless while waiting for a cure
Society makes me feel that chronic is the new dirty word.

Some make me feel worthless and only taking up space.
I find myself wishing for a day, they could take my place.

If you ever meet any of us and you’re not sure what to say
You only need to be sincere when you ask “how are you today.”

When We Look In The Mirror

Week 12: Subject: Self Esteem

You see a person who is an old woman.

I see a person with a  youthful spirit.

You see a person ravaged by Ankylosing Spondylitis.

I see a person who appreciates the simple things.

You see a person unable to stand tall.

I see a person who will stand beside you.

You see a person who can't look up in the sky.

I see a person who's able to hold her head high.

You see a person who is unable to pick up heavy things.

I see a person who cares enough to lift your spirits.

You see a person who's unable to hold things in her arms.

I see a person who will always hold you in her heart.

You see a person whose spine is failing her body.

I see a person who has a backbone.

You see a person who is unable to get up off the floor.

I see a person who will pick you up when you fall.

You see a person that's unable to walk very far.

I see a person who will carry you the distance.

You see a person who is unable to travel the world.

I see a person who will never leave your side.

You see a person who's suffering in pain.

I see a person who's comforted by friends.

You see a person battling Ankylosing Spondylitis.

I see a person who fights to raise awareness.

You see a person whose life is affected by this disease.

I see a person who has been truly blessed.

You see a person whose body lies and betrays her.

I see a person who won't lie against or betray you.

You see a person whose body is failing her.

I see a person whose heart never will.

Today when I looked in the mirror I realized.

It doesn't matter what you see.

It only matters what I know.

Because you see my body

and

I see my soul.

Dedicated to

those who only see

the wrong things about me

because it forced me

to see the right things in me.

I care not what others think of what I do, 

but I care very much about what I think of what I do! 

That is the character!

~Theodore Roosevelt