My name is Ari. I am currently 28 years young and I have lived with seizures since I was about 12. I typically have Complex Partial or Secondary Generalized Epilepsy. Fortunately, my seizures are sporadic and although I do not experience them every day, they do occur randomly without much notice. Due to a lack of medical knowledge on the disorder, I wasn’t medically diagnosed with Epilepsy until I was about 20 years of age. To date, doctors haven’t been able to determine what causes my seizures and I have not been able to tolerate any of the medications prescribed to me.
I am writing this article on behalf of those affected by Epilepsy for two reasons:
1) I hope to spread awareness of the disorder.
2) Give hope and solace to those affected by the condition.
You might have seen this hashtag floating around the Social Media world. You may have even seen it written on the sneakers of NBA basketball star DeMarcus Cousins.
But what is Epilepsy?
Epilepsy is a seizure disorder. It’s typically diagnosed after a person has two or more unexplained seizures within a certain amount of time. It may surprise you that it’s the fourth most common neurological disorder in the United States (after migraines, strokes and Alzheimer’s disease).
What exactly is a seizure?
A seizure is an electrical disturbance in the brain.
Think about how you charge your phone. If the wires don’t connect properly, it doesn’t work.
If the connection fails completely, it can even result in death.
The type of seizure one may experience depends on what part of the brain and the size of the area affected in the brain that the electrical disturbance occurs. One may experience only one type of seizure if only a certain area of the brain has the “short circuit” but if a larger portion of the brain is affected, a person may experience many different types of seizures.
“1 in 26 people in the US will develop Epilepsy at some point in their life”
Many people imagine a person dropping down to the floor with convulsions when they hear the word “seizure”. In reality, there are many types of seizures some more severe than others, but today I am bringing you my perspective of what I personally go through during a typical seizure.
Please keep in mind that each person is an individual and others with epilepsy may experience much different symptoms.
An Aura can be considered a Partial Seizure in itself, and consists of a brief period of time where the senses go crazy. Things that are normally pink are now green. I can smell and taste the seizure starting to creep. It’s very hard to explain; almost metallic in taste. My eyes begin to twitch and a sensation of utter terror that I may throw up. A feeling of déjà vu overcomes me….
And then sometimes that’s it. Nothing else.
Other times, a full-on seizure occurs… and I can only tell you from what others tell me they have witnessed at that point. Sometimes I stiffen up and may experience some jerking and other times I experience full on convulsions.
I can tell you that from the multiple concussions I have had as a result of Epilepsy, I now experience memory problems. As a young adult this has definitely affected my relationships, both personal and professional.
OK, I know… TMI right? Why am I sharing all of this with you?
I’m sharing this with you to bring help bring more awareness to Epilepsy and the struggles that someone with epilepsy deals with. I am a make up artist by trade and I wanted to create some visuals of what a person living with epilepsy may feel like at different point in their life. So I teamed up with Cloud Nine Clothing, Roderick Cooney, and Glo Taylor to create a photo project that represents some of the emotions that myself and millions of others experience. I used bronze to represent strength and purple represents the color for Epilepsy Awareness.
There is beauty in STRENGTH. – Ari Dee
Photos – Roderick Cooney
Words – Ari Dee
Model – Glo Taylor
For more information on Epilepsy please visit www.Epilepsy.org.
If you are located in Nor Cal, you may visit www.EpilepsyNorCal.org for support groups and local events/fundraisers.