The Purple Truth
March 26, known to the epileptic community as Purple Day, is a day to promote understanding and teach others the signs of epilepsy and seizures. As one of the most common neurological conditions in the world, directly affecting 65 million people globally, and with 1 out of 10 people having suffered a seizure in their lifetime, this condition has a real presence in our lives. What is epilepsy though?
Epilepsy is defined as a medical condition that produces seizures affecting a variety of mental and physical functions. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual.
A seizure, a symptom of epilepsy, occurs when a brief, strong surge of electrical activity affects part or all of the brain. Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.
I am very passionate about creating bridges of understanding, but epilepsy is especially close to my heart. I've been discriminated against, misunderstood, and been in several perilous situations because of the condition that affects me.
Stages of a Seizure
The most severe type of seizure I suffer from is the one that is most often portrayed in media, and involves the person having it to "seize" and then "convulse". This is the shaking most commonly associated with epilepsy. There are actually two stages before the convulsing occurs, though these stages do not occur for everyone with epilepsy.
There is the aura, where an epileptic person may become nauseous or even gain temporary synesthetic tendencies (words may have smells, sounds may have colors), and then there is the tonic phase, in which a person tenses the muscles in their body and loses consciousness. This usually lasts only a few seconds and the person may moan or scream when doing this due to the air being expelled from their lungs. Despite this phase's short length, this is often the most dangerous part of the seizure, as a person is more likely to injure themselves by falling and through other mishaps.
The most known stage of a seizure is referred to as the "clonic phase" and consists of the affected person convulsing, or "shaking". The most this phase lasts is often only 2-3 minutes. If someone is convulsing from a seizure, here is the proper first aid:
- If the person is near any potential hazards like the side of a pool or busy street, block their way. Do not hold them down!
- Remove any potentially dangerous objects, such as a tie or anything sharp, if you can. A good idea is to set any objects behind you.
- Place something soft under their head to prevent further head or neck trauma (they should be on their back or side while convulsing).
- Do not insert anything into their mouth! Contrary to popular belief, you cannot swallow your tongue during a seizure.
- After the seizure, lay the person on their side and stay around until they are fully conscious and aware of the situation.
- Most importantly, time the seizure. If it lasts for more than 4-5 minutes it is time to call an ambulance. Anything less is usually not as serious and recoverable from. However, if they have difficulty while recovering, then you should contact emergency medical services or take them to a hospital.
When I was 12 years old I had my first known seizure. The seizure was a type known as a grand mal, now referred to as tonic-clonic. The seizure left me bruised, sore, bloody, and scratched up. My heart rate would randomly race for days after the seizure.
I've had seizures in the oddest and most dangerous of places: movie theaters, a busy crosswalk of a city street in Washington D.C., in the shower, and in my 8th grade English class. Not all of these were grand mal seizures where I convulsed, but they were significant petit mal seizures that affected my life greatly.
In Washington D.C., while crossing a busy street, I suddenly lost consciousness and began walking in circles to my left (out into the intersection). My family was with me, and fortunately for me, a man in a car recognized what was going on and got out to direct traffic around me. It was traumatizing to learn that my life was being risked in a way that I couldn't defend from.
In my eighth grade English class I suffered another petit mal seizure which caused me to lose consciousness and start spouting off slurred gibberish. The school reprimanded me for my actions, saying they were "inexcusable". I was suspended for two days and sent to a lower class level for it. My family was furious and my mother argued with the school on several occasions about the event.
There are other seizures that happen to me frequently as well, such as when I am reading a book or story and the letters begin to quit making sense and I am forced to stop reading for a period of time. There are moments where everything feels "thick" around me. But there are always those who are curious as to what I suffer, and whenever someone asks me what my seizures are like, I tell them that it is like tensing every muscle in my body past the point of comfort until they will be sore for weeks.
What is Your Story?
Have you ever been treated differently because of an illness/disability or vice versa? Has epilepsy affected you or someone you know? How have you dealt with these things? Share your stories in the comments.
Please be respectful of those with epilepsy, any comments with images or links to images that are sensitive to those with the condition will be hidden immediately. It is important to note that only a small fraction of seizures are caused by photosensitivity.
Thank you for reading and for your understanding, if you would like to further spread the word of epilepsy awareness, wear purple March 26th— through online avatars or real life clothing. This journal skin is available to use here:
Resources, Clubs and Groups
International League Against Epilepsy
International Bureau for Epilepsy
Epilepsy Therapy Project
Purple Day Organization
American Epilepsy Society
Epilepsy Society of UK