The month of March is a heavy one for me.
In March 2014, I lost my big brother who I was incredibly close to.
My brother lived with Epilepsy from the time he was very young.
I grew up waking to the sounds of the brother who shared a room with my brother who had epilepsy yelling for help with a Tonic Clonic seizure.
I have many memories of feeling helpless as my brother seized and we wondered what the damage would be this time.
I feel like I have always known the names of Epilepsy medications and the steps of seizure protocols.
It was just a part of life. Epilepsy is what ultimately took the life of my brother.
While March brings me back to the memories of losing my brother, it also is the month that holds Purple Day—a day set aside for growing awareness and support for those who live with Epilepsy.
My experiences with Epilepsy did not end with those of my brother.
I went on to become a special education teacher to students with Epilepsy and then a mother through foster care and adoption to many children who have Epilepsy.
Epilepsy, in many forms and severities, has been a part of every single day of my life.
If my brother were here today, I would call him up on the phone and ask him to share what he thinks the world ought to know about Epilepsy.
Since I can’t do that, I will do my best to honor his legacy and share my perspective as a sister and caregiver to those who have Epilepsy.
I have often said that while awareness days can be incredible, educational, empowering experiences, they are worthless unless a growth in awareness leads to action.
I have compiled a list of simple steps anyone can take to grow in both their awareness and actions associated with Epilepsy.
-Listen to those with Epilepsy. Ideally, those who are diagnosed with Epilepsy should be the ones standing behind the megaphone during awareness months.
Make a point to seek out someone with Epilepsy and ask them what they wish you knew.
-Stop using comments about seizures casually. It is all too common for people to toss around casual remarks related to Epilepsy: “Oh man, turn off that crazy light or I might have a seizure!” “Dude what are you doing? We couldn’t tell if you were dancing or having a seizure!”
Phrases like these are offensive, hurtful, and encourage a mindset that portrays Epilepsy (a life-threatening condition for many) in a way that is demeaning and disrespectful.
-Pause before jumping to conclusions when you hear the word Epilepsy. Epilepsy comes in many forms and severities. For many, it is life-interrupting and life-threatening.
For others, it may be less disruptive and may come in the form of occasional absent seizures or be fully managed by medication or other treatments.
Do not assume that if someone has Epilepsy, their life is in immediate danger.
Also don’t assume they might just space out sometimes or have everything under control with medication.
They are the teacher, you are student. Seek to be educated, do not assume.
-Never choose fear or avoidance first. Perhaps you are a teacher or scout leader and have a child with Epilepsy placed in your class or troop.
Maybe you have had a new employee joining you at the office and learn that she has Epilepsy.
Whatever the situation, suppress the urge to ask for different circumstances (a transfer, etc) or declare yourself unfit to be the guardian/co-worker, etc for someone with Epilepsy.
Push the brakes and choose first to be educated and then to accept this as an opportunity to learn something new and help a human being be loved, accepted, and safe.
-Learn basic seizure care so you can help if you ever encounter a situation. While taking a class about Epilepsy/seizure response (this is included in many First-Aid classes) can be incredibly helpful, you can also easily do an online search to learn the basic steps to responding when someone has a seizure.
Take a few minutes to learn these steps and then stay refreshed on them so that if you ever find yourself in a situation with someone who has a seizure, whether you know them or now, you may be better prepared to assist.
-Don’t ever, ever tease. Never make fun of someone who has a seizure of any kind. If you do so truly unknowingly, give a heartfelt apology and learn from your mistake.
-Ask how you can accommodate. If you have the opportunity to be associated to any degree with someone who has Epilepsy, ask how you can make the environment more accommodating.
For example, if you are a supervisor and hire on someone who has Epilepsy, ask to be educated about potential triggers, rest needs, seizure response needs, and other accommodations.
Then follow through with those and require others do to.
The bottom line for Epilepsy awareness comes down to this: Kindness goes a longer way than anything else and gives birth to humility, education, and change for the better of all people.
Choose to learn from those who have Epilepsy and then adjust your thinking and actions accordingly.