Guest Post: The Worst Thing

Courtney was diagnosed with Intracranial Hypertension in 2010.  She had an assignment in her English class recently to write a poem about the worst thing that has happened to her.  With a little help from her dad, this was the result:

The Worst Thing 

by Courtney White

The worst thing for me is easy to mention,
It’s when I found out I had Intracranial Hypertension.
It’s a long name so I call it I.H. instead,
It means there is a lot of pressure in my head.
Pseudotumor Cerebri is another name,
But there isn’t really a tumor so that one’s kinda lame.
Fluid in my skull pushes on my nerves and brain,
It causes me to have all kinds of pain.
I hurt in my arms, legs, head, and back,
It’s not any fun and that’s a fact Jack.
I.H. can also lead to blindness and other problems with vision,
So I can’t take an eye test with any precision.
It also affects hearing so please no singing,
I can’t hear you anyway with my ears ringing.
It also can affect my memory like remembering faces,
Some things I’ve learned and even that I’ve been some places.
I can look fine if you pass me by or stand at my side,
No one can see all the pain I’m trying to hide.
I will push through the pain to live every day,
Trying to be normal while I work or play.
Often I push myself too hard and make things worse,
This feels less like a disease and more like a curse.
Treatment is simple or so I was told,
The doctors keep saying that and it’s getting old.
They told me I needed a lot of medicine and pills,
Some for pain and some for the fluid would cure my ills.
Well none of it worked so I still hurt and got really mad,
It seemed there was no help so that also made me sad.
And all those spinal taps let’s not forget those,
When they put that big needle in my back I could feel it in my toes.
Sometimes the taps would help the pain for a week or two,
But the hurt would always return just like it was brand new.
The doctors finally decided a shunt was the way to go,
That’s a tube in my brain that lets the fluid flow.
It works some because the pain isn’t as often,
But some days I still feel just as rotten.
I’m still glad I have it, some help is better than none,
But most days I’m still not having much fun.
So if you see me smiling on the outside please don’t judge me,
Because most days I’m screaming on the inside you just can’t see.
Not many people have heard of I.H. because it’s so rare,
So it doesn’t get much attention like other illnesses and it’s not fair.
There isn’t a cure so those that have it just have to deal
We just have to live with all the pain that we feel.
“IHope for a cure” is the slogan we all like to use,
Because to give in to this disease is something we refuse.
I’ll keep hoping a cure is found one day,
In the meantime I’ll keep pushing that’s all I have to say.