I Have A Brain Condition, What's Your Excuse?

By Pandora Poikilos

In case you haven't heard, September 2011 is awareness month for Intracranial Hypertension (IH). I was diagnosed with this rare neurological disorder in November 2003. In the past week with every opportunity I got, I shared this message on Twitter - RT If you hope for a cure for "#RareDisease #IntracranialHypertension #Cancer #BreastCancer ... #IHAwareness #IHope4ACure" Someone was annoyed enough to tell me that if I was diagnosed with a rare condition that I had to accept it and move on. Hoping for a cure wasn't going to change my situation and I wasn't being realistic. Now, there's a shocker. So, let's recap. 

What are the facts about IH?  Intracranial hypertension is a neurological disorder which literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.” Main symptoms are headache, nausea and vomiting, double vision and other symptoms. If untreated, it may lead to swelling of the optic disc in the eye, which can progress to vision loss. There is no known cause. There is no cure. (Sourced from IHRF.org)

Pause. 

Forget the facts.  

How does IH make me feel? Most days I feel double my age. I have a VP Shunt in my head, a tube that runs from my brain to my body. I feel scared. I feel cursed. And I feel abnormal. On some days, I tear around like a raging bull doing as much as I can. Others see it as a good day, determination they call it. I see it as a mask to do as much as I can before a bad day catches up with me and I can't do anything but lie in bed and wish away this dreaded condition. Some days it's easy to tell people how I feel and on other days I feel like a broken tape recorder.

Pause. 

Forget the facts. Forget how IH makes me feel. 

Now, look in the mirror. Yes, you. Take a long hard look at your reflection. Imagine pain eating away in places you never realised made so much difference. IH is treated with lumbar punctures. Your lumbar is at the small of your back. A needle is inserted into your lumbar to drain your excess spinal fluid. It hurts, a lot. I underwent lumbar punctures for seven years. I stopped counting after 10 times.  Then, on top of that pain - imagine disorientation. You have to hold on tight to your memory, you never know when the pressure gets so high you can't remember daily events. Imagine, losing your hair. First, to medicines and then to brain surgery. 

Imagine feeling helpless. You cannot see what's eating at you. But you know it's there, everyday. This invisible force tearing you up from the inside out. You feel blackness surround you, your eyes fail you. You need help with simple everyday tasks. Imagine, the pain you feel when you jam your hand between a door. The pain from brain surgery is easily ten times worse but a VP Shunt is a choice between sight and sanity or ongoing crippling symptoms driving you mad. You stop looking in the mirror. When all this stops. Take a deep breath. 

Then it starts, all over again. IH is a lifelong condition. There is no cure. How would you feel?

Pause. Think about it. 

Do you fight? Do you say and do nothing? Do you hope? 

In the meantime, I say again and again until the day it becomes real ...  
I HOPE FOR A CURE (#IHope4ACure). Love and light, always.