“She does not look sick”

One commented

“But you look perfectly normal”

The second commented

“Doesn’t look like she has the flu”

A third commented..

I responded with a smile

Reminding myself to take it as a compliment; that despite the ongoing internal dysfunction wrecking havoc, I’m able to look completely fine, & portray “this” level of well.

Statistics prove: 96% of disabilities are not visible to the naked eye

But if you spare a few moments to look closely & actually consider the way our lives have taken a complete turnover & changed

You would be able to gauge.

I am grateful I “look normal”, but I am agitated when expected to behave like normal – able bodied person.

I am no longer the definition of a healthy person’s normal

I am chronically ill & I have a new normal.

My normal differs

My “fine” differs

My fatigue differs

My abilities differ…

But they do not reduce or rob me of my worth as a being who carries a soul, because true wealth far exceeds the parameters of health. Richness is defined by qualities contained in the heart.

So yes! In spite of the challenges I deal with, I will still smile ☺

I smile to extend warmth and light in a world which can otherwise be cold and glum.

To make you feel accepted and welcomed.

Here. Where I am.

A smile is a my signature.

Hence, you will never be able to fathom the extent of the battle beneath..

You see a broad smile

You see me talk

You see me laugh

You see me walk

You see me “behave normally”

You see me enjoying life (because I am in different ways)

You see many things

You see a 21 year old like any other

However!

You do not see the battle my body rages deep within.

I may not “look” sick on the outside, but inwardly my body is working overtime to maintain a small percentage of stability.

For this reason I wage a wearying and unending battle of constantly being asked to prove my illness.

How do i prove to the medical fraternity let alone the general public, looking sick is not a requisite to being sick?

How do i take a firm stance against the unjust theory of being told “it’s all in your mind?”

How do I prove to medical personnel I do not have a so called mental illness?

I should not have to prove;

You cannot see the faulty transmission of signals between nerve cells to my skin and organs

You cannot see the pain striking like bolts of thunder and lightning

You cannot see the electrocutions being caused by my own body

You cannot see my skin being scraped with sharp edged knives & forks

You cannot see my legs moving around at night as if they havent ran enough while little

You cannot see my body’s thermostat has no temperature control

You cannot see; food struggles to go down the esophagus regardless of how hungry I am

You cannot see but sometimes my head feels as if its being pounded with hammers

You cannot see but if I talk continuously for less than 15 minutes my heart cannot manage its workload

You cannot see but if I lay flat to sleep i am unable to breathe & gasp for air

You cannot see but my brain has clouds of fog swirling around inside

You cannot see but situations of extreme excitement or anger causes a syncope (fainting episode)

You cannot see but if I laugh hysterically, I am at risk of a sudden emergency episode

“Laughter is the best medicine” they say.

Sure it is!

Yet I wonder, how does one allow it to have medicinal effects while living with a rare type of an illness where laughter causes your life to be endangered???

A common illness, but rarely known & specifically rare types found in certain individuals.

“Don’t make your aunt laugh, take it easy on her” –

A sister cautions my 10 year old niece as I enter a laughing fit incited by one of her hilarious jokes.. Leading to me gasping desperately for air…

Laughter feeds the soul when done in moderation but for me it is a limited luxury… I do not seek any sort of pity! Instead, I remind you to appreciate a seemingly simple bounty

18 April 2016

Commenced my baffling tale as a vivacious 19 year old

Challenged by the mighty faith onto which I dearly hold

After being propeled into the waters of a deep sea

With a direction and language unbeknown to me

I opened a journal to inscribe

My way of learning to survive….

May these words aid your spirit to revive

For, they are proof we can still thrive

Let reservoirs of ink from this soul flow

Thereby fertilizing some arid roots below

With a burning passion I write

So the sparkle in you can ignite