Author's Note: What the heck is wrong with Rose?
GIRL, UNPLUGGED Story Extra | 3 Minute Read
This post gives a little behind the scenes information on one of the characters in my YA Novel GIRL, UNPLUGGED. There is a character named Rose who is clearly suffering from some medical condition as the story progresses, but our protagonist (and, in turn, the readers) are left puzzling over what the condition may be. Knowing the condition is in no way pivotal to the plot, but it something that is very important to me personally, so I wanted to take the time to share what the condition is and why it was so important for me to include it in my story.
What the heck is wrong with Rose?
I wrote the first (very, very messy and incomplete) draft of GIRL, UNPLUGGED in April 2012. There was news about strange things that may happen on the sun that summer and I was home on disability with symptoms of my rare disease finally starting to stabilize. I had been battling Idiopathic Intracranial Hypertension since June 2009 (actually, my doctors suspect it was much earlier than that, but June 2009 was when I got my diagnosis). I am incredibly happy to say that my specialists declared that I was in remission in August 2012, but a lot of the damage had been dealt. I was no longer teaching or driving, my vision had been damaged permanently, and my life had been put on every kind of hold.
Having a rare disease is an incredibly difficult thing to deal with, not only are you physically suffering, but with the lack of knowledge and experience availble concerning your condition, much of your time is spent feeling isolated, misunderstood, and helpless. When I started writing, one of the first things I wanted to do was to write about my disease. I wanted more people to know about it. I wanted fellow patients to feel seen. I wanted to use fiction to do what it does best: help build empathy.
While I did not write a protagonist suffering from my disease, I have included Rose to give some space to the suffering that can happen in the throws of IIH. I count myself as lucky that I was able to find my way to remission when I did with the treatments I did: Lots and lots of unfriendly medication, complete lifestyle and diet change, eye surgery, vestibular and physical therapy, meditation, prayers, reiki, good vibes, and the rest.
I managed to avoid a shunt placement, though it was always in the conversation. The character in my book suffering with IIH is, like many patients, in need of that shunt. However, while Rose’s treatment differs than my own, her symptoms do not. There is no exaggerating when it comes to Rose’s suffering on the page, it is just memory. I have interviewed patients with a shunt and they had explained to me that when the shunt fails, the unleashing of symptoms can be instant when the disease is active. In my own experience, a missed does of medication was the same be. When it came time to write GIRL, UNPLUGGED I researched whether or not medical devices like a shunt could be affected by an EMP and, at the time, the answer was yes. A new conflict, with an opportunity to shine light on the disease that shredded my life, was born.
So, what’s wrong with Rose? She has a disease called Intracranial Hypertension. Intracranial Hypertension is condition that comes from an excess of cerebral spinal fluid in one’s body. An older name for the disease, Pseudotumor Cerebri, came from the fact that, symptomatically, the disease presents very much like a brain tumor, therefore, pseudotumor, meaning “fake tumor” seemed like the best name. Medical professionals have decided that the mere utterance of the word “tumor” when there is, in fact, no tumor present was a bit too much, so a new name was born, Intracranial Hypertension — basically, pressure inside your head. Here is an excerpt from the *Intracranial Hypertension Research Foundation
Chronic intracranial hypertension is a neurological disorder in which the increased cerebrospinal fluid (CSF) pressure has generally arisen and remains elevated over a sustained period of time. It can either occur without a detectable cause (idiopathic intracranial hypertension) or be triggered by an identifiable cause such as an underlying disease or disorder, injury, drug or cerebral blood clot (secondary intracranial hypertension). It is frequently a life-long illness with significant physical, financial and emotional impact.
Chronic IH can cause both rapid and progressive changes in vision. Vision loss and blindness due to chronic IH are usually related to optic nerve swelling (papilledema), which is caused by high CSF pressure on the nerve and its blood supply.
In addition, individuals with this disorder often suffer severe pain. The most common form is a chronic headache, which is generally unresponsive to the most potent pain medication.
Anyone can develop chronic IH, regardless of age, gender, ethnicity, race or body type. While the chronic form of intracranial hypertension is not usually fatal, current treatments for the disorder can result in serious, sometimes life-threatening complications.
Needless to say every single patient’s experience is unique, but I hope that Rose’s presence in GIRL, UNPLUGGED does some justice in representing the community of IIH patients I count myself a part of. If you have any questions about this disease, my experience or anything else relating to GIRL, UNPLUGGED, please do not hesistate to ask them in the comments!
*IHRFoundation.org is an amazing website and organization that served me well when I was confused and suffering. It’s an amazing organization to Donate to, or to refer any of your PTC/IIH Brain Pain friends to.
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GIRL, UNPLUGGED TABLE OF CONTENTS