National Epilepsy Awareness Month - Make The Kind Of Art You Want To See In The World

CreativityCalligraphyFaith and FamilyCommunity

Nov 14

Written By Stacey

This post is sponsored by sheer irony.

Today, I’m writing this post from a local hospital where my child is being treated by an epilepsy specialist. She is undergoing a procedure in which they attempt to capture and record a typical seizure.

It’s not a bad view. But, it’s also not my typical flatlay surface either. Check out my views from the bed for parents provided by the hospital below.

We have been here for about three days now, and so far there has not been one seizure.

Ordinarily, that would make me ecstatic, except that they haven’t gotten what they need yet. The purpose for the stay is to learn whether there are more effective treatment options for her. Without a seizure event, they won’t know.

The procedure is called an EEG. So far, she has had a few and none have captured a seizure.

Why am I even sharing this?

The first night we arrived, the nurses that came to our room to set her up for the EEG brought some items with them for National Epilepsy Awareness Month…

…And I had no clue.

I legit am a whole caregiver for a child that has experienced seizures, has an epilepsy diagnosis, and yet, I did not know that the month of November is not just to eat turkey.

This scary roller coaster ride that began during the pandemic caught me just as much off guard…

I had never seen anything more scary in my life than seeing my child’s smiling eyes slowly roll back, her entire body stiffen as it moved into a whole body arch, and her hands curve under just before her entire body violently convulsed up and down on my bed over and over again before going limp as if she was gone from this world for what seemed like forever. Throughout the experience I must’ve plead The Blood and apologized to her for not knowing how to help her a thousand times. When I got the presence of mind to dial 911, the person on the other end asked a million questions, probably to keep my mind occupied until they could get an ambulance to us.

I don’t think I’ve ever felt so helpless.

I’ve been an autism mom since my daughter was born. I probably didn’t know it until she was about two years old. But, just like autism, epilepsy is an issue that is close to my heart. Maybe even closer now than autism anymore. I can’t say. I just know I want answers that will work for our lives.

Since this diagnosis, I have had many sleepless nights, have had to call off work many times, have often had to refrain from going anywhere outside of work and home for fear of having seizure events in public places where I may not be able to prevent an accident, have had seizure events in public places where I couldn’t prevent an accident anyway (thankfully, there were none), have had to learn the steps to keep her safe during an event, and lead a fairly different lifestyle than people who do not care for a loved one with a disability may take for granted.

I can’t imagine it’s any better for my daughter who has lost much of the independence she worked so hard to get, overcoming so many developmental issues of autism before getting this diagnosis. Being followed around everywhere by someone all the time can’t be very comfortable. For others, possibly not being able to drive or not have the option to live alone ever as an adult is heartbreaking.

Of course, many learn to live full and happy lives with this disorder. But that still doesn’t negate the risks.

Since I had just found out about Epilepsy Awareness Month, I decided to promote awareness and distribute some information, thinking maybe there were some stickers on IG that I could use for my IG Stories.

I was wrong. There weren’t any.

Apparently, though seizures and epilepsy is much more common than many know (1 in 10 people will have a seizure at some point in their lives), other disorders seem to get more attention. Not to diminish those disabling disorders in any way. But, that means, epilepsy gets less funding, though you or someone you know are much more likely to experience it.

I’d really love for that to change.

As an artist, there’s all kinds of schools of thought and slogans that have been used throughout the years. One that came to mind for me after noticing that I couldn’t find a sticker to add to a post I was sharing from the Epilepsy Foundation IG account was, “Make the kind of art you want to see in the world.” So, I made up some simple stickers that would work for my subsequent posts…I uploaded them to Giphy . You can see them in the photo from my IG Stories below. I hope to make them searchable by my username soon…and I intend to make more.

In fact, this whole post is an effort to #removethefilter so that others can see something of what this experience is like. The more folks are aware, the more likely a person with epilepsy or someone having a seizure can be saved from harmful, devastating accidents and the like.

I just also believe in promoting more visibility for things that matter.

There’s so much noise we get online. But there’s this tendency to gravitate toward the good parts. Nobody knows what to do with the parts that aren’t so glamorous.

But, what I know about the lettering community is that we all love lettering. Many of us choose analog materials, while others prefer digital tools or some hybrid of the two. I’m asking that for any lettering artist that reads this post, whatever medium you choose to work with, please consider making some lettering art around this issue with searchable tags. Make stickers for Giphy to put on IG. Make lettering art for your feed and share what you know, would like to know, or are just learning.

Beyond that, please share your seizure story, if it applies….and, if you’re so inclined, take a brief training to become seizure certified. It all helps. 🙏🏾

Lastly, please learn Seizure First Aid. You could save a life with some simple steps…and knowing what to do is as important as knowing what NOT to do. If I had a dime for every time someone well-meaning told me about inserting a spoon into her mouth during a seizure…

The month of November is already half spent. I don’t want it to pass by without any recognition of the stories behind this disorder and the ways others can help people living with epilepsy. ❤️