My body is having a civil war

Fighting itself viciously.

How many years left

Before I’m wheelchair bound?

My joints are deteriorating rapidly

Each hyperextended to the nth degree.

What does this mean?

My body bends in unnatural ways.

There are frequent dislocations. 

 

I can choose to cry

Or choose to laugh.

So my friends call me Rice Krispy

Because every time I move

My joints snap, crackle, pop.

The tease that my Native American

Name should be

Walks on Bended Knee.

I am broken.

I understand that.

And I can joke about it comfortably

Because it’s not like I can change it.

If I don’t like my hair, I dye it.

If I don’t want blue eyes,

I will get green contact lenses.

I have tried to imagine my life

Without the pain as a constant companion

And can not even begin to fathom

Just how different my life could be.

If there were a cure

Would I take it?

I like to think so.

But I couldn’t say for sure.

My disease is so much a part

Of who I am now.

Who would I be without my pain

To hinder me

Every shuffled step of the way?

I am terrified to think what this means

If my disease, or syndrome, or disorder,

Is already this bad at the ripe old age of 29,

What will happen in five more years?

I doubt that my body can survive much more of this.

The pain steals my breath,

So sudden and unexpected and intense,

It flares up in different places every few minutes.

I never know where I will be attacked next.

For the most part,

I try to hide the amount of pain from

Those surrounding me.

No good will come of their pity,

And I am confounded when they

Openly imply that I am blowing it out of proportion.

It’s amazing how much pain

The human body can tolerate.

More amazing is the meditation techniques

You must resort to

For sanity’s sake.

I simply try to go to the place in my mind
 
Where the pain doesn't live

And stay there for a while.

When I think of the progression

Of my very own disease

I am startled to realize

How much it has advanced

In the last five years,

Ten years,

Fifteen years.

And yet I am one

Of the “lucky” ones.

My case is considered mild,

Since I am not yet on a permanent

Morphine drip.

I am not yet in a motorized chair.

Those things may come with time,

But not today.

I am a senior citizen at 29.

And I can accept that.

I have accepted it on almost every level.

But how do I explain this genetic disease

To my unsuspecting daughter?