A Tragic Loss
Over the weekend, many news channels, posts and articles were written, telling us of Disney Channel actor Cameron Boyce’s death from a seizure at age 20! Twenty years old is such a young age to die, and it seems strange I’m sure to many who are unaware of seizures and Epilepsy, that someone can die from having a seizure. Unfortunately, many people, young and old have died from this, it’s known specifically as SUDEP which stands for Sudden Unexplained Death in Epilepsy.
Statements from yesterday mentioned that he had a seizure due to a medical condition for which he was treated. Being familiar with Epilepsy, because I also have this, my mind went directly to the fact that he must have Epilepsy. I’m sure that as his family is grieving, they don’t want to answer many questions right now, which I totally understand! Many people online wrote yesterday that it was “not epilepsy” or we can’t confirm that it was , or that it was only stated that he had a “ medical condition.” It was confirmed though today that he did have Epilepsy.
Shame & Stigma
It is very difficult, I believe for some to be straightforward about the fact that they have Epilepsy. So many who do NOT have the knowledge and understanding, tend to have a stigma in their mind about what they believe Epilepsy entails. As a result , so many are embarrassed and ashamed to even share with others so that they can learn!
Shame is the feeling of not being enoughDr curt thompson
I sometimes think that shame, mere awkward, senseless shame, does as much towards preventing good acts and straightforward happiness as any of our vices can doC. S. Lewis
It is really difficult for some to share, I know I did at the beginning. I feel what hurts most now, since I was diagnosed 17 years ago, is that there seems to still be a shame in exposing, a shame that while others could have a totally different type of Epilepsy and seizures, with different symptoms, some believe we are incapable of certain abilities. At times, I feel excluded! This could be very well why his family didn’t share what Cameron Boyce’s “medical condition” was, especially when he was being treated and he appeared to be very capable of working and functioning as much as anyone we meet and see day to day. Having Epilepsy, though difficult, can bring us closer to God, experience peace and motivate us to help educate and encourage others.
Opportunities Amidst Challenges
There should be a balance between understanding that while negative things happen to one person, there can also be positive things that the same person with epilepsy can accomplish. It’s very different from one person to another and even with the same person the epilepsy changes what they can do over time. At one point in time they may be able to do something then 6 month, 12 month, or 2 years later it can change. It can vary greatly due to
- The doctor
- The medical treatment
- And even events in a person’s life
Honestly, where I was two years ago, is SO totally different from where I am today, yet I have the same medical condition. Even 8-12 months ago, I was still having regular seizures, I was not thinking as clearly, was very fatigued and totally unable to drive.
Since changing my medication, this has made a huge difference! Two years ago, I had a different Neurologist who completely messed up my medication so bad that I had severe tremors, I was in the hospital 5-6 times, unable to walk and unable to eat normal food. I was taking more than 30 pills a day; half of which were to deal with side effects of other drugs.
After some life-threatening experiences, I changed my doctor, and that choice has made a huge difference that I am so thankful for. I now take 3 pills a day with minimal side effects. But getting to this point has been a harrowing experience that has nearly claimed my life in several ways and I’ve had to go through 9-10 different medications that didn’t work to maintain my seizures or that caused severe side effects.
I don’t want to be seen or perceived as someone completely incapable of thinking, accomplish tasks and able to socialize and communicate. At the same time, I would like people to understand what could happen and try to understand my limits and others with epilepsy and other similar neurological conditions. I believe it is an issue of growing, learning and not excluding or shaming. We have some embarrassing moments, but we also have victories and things to be thankful for. Many epilepsy patients are afraid to tell their bosses, people they work with and people they know that they even have this condition. I believe it is due to the lack of knowledge, understanding and what happens when people experience seizures.
Education & Understanding
While many have the knowledge of what to do for a heart attack in this day and age, very few people would know what to do in the case a person near them were to have a seizure emergency. They are both serious medical conditions but while more and more people know how to administer CPR and use a defibrillator, still very few would know how to help a person in the throws of a seizure.
Information is available through the Epilepsy Foundation