Epilepsy Awareness Month Starts With Us
I've been epileptic for 57 years, but it wasn't until social media blossomed that I came to know so many other people with epilepsy!
It wasn't until the 21st century that I witnessed a fair number of people become acquainted with the word "epilepsy" even if they lacked an understanding of what it was. And it's only been in the last decade I've witnessed such a thing as Epilepsy Awareness Month. I can only say, "Hip-hip-hooray!"
I hope people's expectations and energy isn't misdirected this month, a time when we want more people to be understanding and compassionate of our predicaments. However, I'd wager that the majority of the epileptic community wasn't familiar with epilepsy themselves until they were involuntarily shrouded with its ugly face. So, we mustn't be too expectant for miracles in others from outside our community.
The evils of epilepsy
Yes, epilepsy is a villain that robs people of relationships and opportunities. Yes, epilepsy steals from people's monthly budgets so that some have to choose between medication and food. Yes, epilepsy kills, whether it is in someone's sleep, falling in showers, or when driving.
Epilepsy is wicked and people need to be more aware of it.
We must help others with epilepsy
People are fooling themselves thinking that while Americans are worried about inflation, jobs, and political elections, many of the people from outside our community are going to change their behavior or generosity towards us because of a march, spotting a T-shirt, or a speaker they hear for 15 minutes. Rather, we must be the ones to extend our hands to heft our brothers and sisters to their feet, then make those members of our community gain a better understanding of what is meant by being epileptic and its consequences.
Rather than break my back making non-epileptic people aware of the hardships of epilepsy, my life is dedicated to helping people with epilepsy realize that they can be happy, productive, and active members of society. I'm thrilled to do that as a writer here for EpilepsyDisease.com and a producer of my own TV series, Epilepsy Gangster (available on YouTube).
Epilepsy warriors and advocates
Nearly all of us are patients being treated by specialist doctors, but I am hesitant to use that word because many people equate "patient" with being sick, invalid, incapable and therefore without any hope. I grew up with the term "epileptic" (and am used to it), but it's become politically incorrect.
A popular term is "epileptic warrior" instead, but to me, "warrior" is an aggressive noun that is earned by persevering against the hardships epilepsy can impose. It involves self-acceptance of one's own condition, and one's development into new relationships and careers. Nor do I call someone an "advocate" until they are doing something to change the impressions of others about what epilepsy is – either those who have it, or those who don't.
Making online interactions helpful, not harmful
I welcome lost people to my support group with a warm hug that assures them, "Been there, done that." But when I look at many of the statements posted on the support groups on Facebook, I want to tear out my hair. Don't get me wrong – such sites are good places for "rookies" (as I call people whose epilepsy is newer than 2 years) to get information from people who have years of experience dealing with problems and different treatments. But I read postings from people who are themselves pitifully misguided and uneducated about epilepsy! And such complaints unnecessarily frighten people whose diagnoses are even more recent.
For instance, I read a mother's complaint that was accentuated by several lines of crying emojis, before writing that her teen child just had her fourth focal seizure within the 4 months of becoming epileptic. On the other hand, there are people in my support group who pray for just 1 a month. Clearly this woman was unaware of epilepsy how can work: either by a doctor's misleading or by her own irresponsibility of learning about it.
I replied to her that for nearly 30 years, I was between 8 days to 2 weeks and that I know a woman who has 20 a day. Similarly, another person was making a temperamental complaint against a neurologist "who must be a quack" because his seizures had continued for 2 months after diagnosis and the medications "didn't work!" My response was, "How would you like to try several dozens of medications over 50 years until finally 1 has given me 6 months seizure-free? It's not uncommon to be on a medication for several months until it reaches the level in your blood to determine if it's effective."
Educating ourselves and each other
Actual awareness of epilepsy starts when people read firsthand accounts of other people's lives with epilepsy, or hearing other's stories at support groups to become aware of what is in store for them. When they seek out the best epileptologist for them and ask questions. When they do homework online to learn more about their condition and pharmaceutical side effects. After that, they can become strong, too, and perhaps less flustered when progress isn't seen in 2 months.
I'm writing this the week after the third 6-month-seizure-free period in a row in my ENTIRE LIFE!
We can do amazing things
Such self-awareness means that people around us will look at us differently, amazed by our accomplishments when we have what, to them, is a tragic disease. I encourage others to never cease their self-awareness of what impositions epilepsy makes upon their lives and reassess what talents and newest contacts have entered their lives that will help them to become happier with more fulfilling lives. Understand that you may not be able to go from Point A to Point B directly, but become aware that it might be necessary to first go to Point H, to Point J, to Point C, and then to Point B.
Once we become self-responsible members of the community, then we'll make great strides in making the communities around us aware of epilepsy!
What is the most useful part of this online community?