Today I finally finished the post about Epilepsy, a "chronic neurological disorder characterized by recurrent unprovoked seizures. These seizures are transient signs and/or symptoms of abnormal, excessive or synchronous neural activity in the brain." In 1995 I was diagnosed with a rare form of Benign Epilepsy (common during prepubertal adolescence). This was the most agonizing time of my life and for me it is one of the most difficult topics to write about.
This post focuses mainly on my personal experience of living with epilepsy: what it is like to suffer a seizure, how society sees people with epilepsy and what you can do to help.
How it feels like to have a seizure
In the year before my diagnosis I started to have seizures with horrible auras (a dream-like state). I remember my first seizure as if it was yesterday. It was very early in the morning, I lay in bed and suddenly my arm began to tickle strangely. I tried to call my parents for help but I was unable to make even a sound and within seconds I was "trapped" deep in this so-called aura (I had the same one every time I had a seizure).
With the risk of sounding crazy, I will for the first time publicly speak about what my aura was like and why it turned me from an adventurous girl into a person so full of fear that it is paralyzing... In my auras I would swim in a river against the strong current desperately fighting against drowning. Then, I saw my grandmother's face telling me that it was ok to let go (and die). Eventually I lost all my energy and drowned. As it felt so real to me, I would regain consciousness being immensely terrified and exhausted.
My parents woke up from the strange noises I made during the seizure and were immediately at my bedside. The next thing that frightened me to death was that I was unable to move, I couldn't even lift my arm so my father carried me from the bed to the bathroom. When I was done in the bathroom I told him I was unable to walk. My parents didn't want to believe me so my father put me on my feet and let go. I somehow managed it to take two steps before falling flat on my face. However, I was lucky as I fell against a hat stand full of coats. My parents felt terrible and this never happened again. It took about two hours until all body functions were back to normal. This was when I realized that even though my face suffered no damage thanks to the hat stand, I had a horrible pain in my big toe. As it was disgusting I'd rather keep the details to myself.
The diagnosis
No doctor knew what was wrong with me and they initially laughed the seizures off by telling me this was a disturbance of growth and I should increase my intake of vitamins. This didn't help at all and my seizures became more frequent, leaving me afraid of sleeping - unfortunately, the sleep deprivation increased the frequency even more. The doctors then decided that it might be a brain tumor and just the thought of it scared me to death. However, the x-rays came back negative, leaving me relieved (however, since then I suffer from claustrophobia). After that I had my first of many EEGs (measurement of electrical activity produced by the brain) diagnosing me with epilepsy. As epilepsy is often regarded as inheritable my siblings had to take the EEGs too, and even though abnormal activity in their brains was diagnosed, both have never had a seizure.
How society sees people with epilepsy
Living with epilepsy at that time was difficult. People didn't know much about the disease and had cruel misconceptions about it.
I remember once when I was in a church summer camp. One night I suffered a seizure which woke everyone up. While my best friend took care of me everyone else just stared at me (including the adults who knew I had epilepsy). During the next day I heard the other kids talking and laughing about me. It was so humiliating and the beginning of serious depression.
My treatment besides the EEGs included pills. I needed three of them every day in the end to finally make the seizures stop. Since 1997 I have never had a seizure again and fortunately it isn't likely that they reoccur.
So you might think now, how is it possible that I was "cured" even if there allegedly is no cure for this disease. You should understand that there are various forms of epilepsy and not all of them are lifelong. Some, as in my case, are confined to a particular stage of childhood.
Another memorable experience I have about epilepsy took place in 2004. As part of my job education I had to participate in a first aid course. We were given a brief introduction on how to help someone who suffers an epileptic seizure. That was when the classmate I had a little crush on at this time lifted his hand and announced that he has heard that people with epilepsy are dumb because their brains are not working properly. I almost fell from the chair when I heard this remark, so even though I was really shy and normally didn't contribute much to the classes I lifted my hand and said to him: "You know, I have suffered many epileptic seizures in the past and I have always been an excellent student so do you really think I am stupid?" The teacher backed me up telling the class that this is a common misconception and that recent studies have shown that people with epilepsy are often actually a bit more intelligent than the average person. Well, this was the one time where epilepsy actually got me a date! ;)
From evil spirits to genius and creativity - read about famous people with epilepsy (the most famous being Socrates and Julius Caesar) and the history of the disease here or at wikipedia!
The consequences of epilepsy
I consider myself very lucky that I had epilepsy only during childhood. Over 30% of people with epilepsy still suffer seizures even with surgery or the best medications available. In my experience, the worst thing about epilepsy is that you might have an accident while having a seizure. My ugly toe injury (thankfully my seizures only occured while I was in bed) was nothing compared to what my best friend's mother had to endure. She suffered a seizure in the shower which left her with major burns in the intensive care unit for several weeks. Many people cannot predict when a seizure is going to happen and therefore may live in constant fear of suffering severe injury or being ridiculed by the people who witness the seizure. This anxiety can ultimately lead to depression.
My life after epilepsy
Although I suffered my last seizure many years ago, epilepsy still affects my life. The experience of being ridiculed for having seizures made me depressed and ate up my self-esteem. The experience of the auras in which I died of drowning every single time caused my fear of deep water; I'm such a terrible swimmer. I am also still claustrophobic because of the machine that x-rayed my brain. Every time I feel a strange tingle in my arm I get scared for a second because this was how the seizures started. When I saw the first episode of Dr. House last year, I got really emotional. In that episode the woman doesn't have epilepsy but she suddenly was unable to speak and fell to the ground having what seemed to me a seizure. When she was in hospital they x-rayed her in this machine, and for the people who have never been in such a machine, it makes a nerve-wracking hammering sound. Just hearing this sound again after all these years brought back the memories and feelings I had during this time.
What You Can Do
To date, most people still don't know much or have misconceptions about epilepsy which affects about 50 million people worldwide at any one time. So far, there hasn't been done enough research and there is no cure. It is about time to change that!
A charity that I like a lot is the Muir Maxwell Trust (see picture above). Their campaign encourages you to organise a dinner party at your own homes where you have an auction and/or charge your guests for the hire of their cutlery for the evening, donating the proceeds to the MMT.
Other notable charities are The Epilepsy Therapy Project and The Epilepsy Foundation.
If you are living in the United States, join Heroes actor Greg Grunberg on The Walk for Epilepsy on Saturday, March 28, 2009. For more information click here.
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