Krystle Reine Boyajian

We’re in the middle of epilepsy awareness month, so, here’s my annual post and call for everyone to learn more about seizure safety.

November is epilepsy awareness month in the United States, 1 in 26 people will develop epilepsy in their lifetime. It effects more people than multiple sclerosis, muscular dystrophy, cerebral palsy, and Parkinson’s disease do combined. Yet, the a large amount of adults aren’t aware of epilepsy, or basic seizure safety. 

In honor of epilepsy awareness month please learn more about epilepsy and how you can help those afflicted by it. Here’s a link to general first aid steps for epileptic seizures. The epilepsy foundation is a great website to learn all about epilepsy and what it really is.

Take some time to learn about different types of seizures. There are many types of seizures besides convulsive seizures and learning now can help others that may be afflicted get help before it’s taking over their life.

Epilepsy is scary, but together we can make the world a little bit safer for those with seizures.

If you’re feeling generous then the Epilepsy Foundation is always looking for donations to continue the fight against epilepsy. You can donate here.

If you know me then you probably know that I was diagnosed with epilepsy in October of 2010 at age 12. I was on seizure medication until June of 2014, when I was cleared from the epilepsy clinic. Since then I’ve been neurotypical and I am so thankful for it.

The seizures I had were called absence seizures (both typical and atypical). I would stop whatever I was doing, but I wouldn’t fall or convulse. Sometimes, I would smack my lips together or walk or my hands would fidget.

I don’t remember anything from these events, but I do remember how scary the misinformation surrounding epilepsy was.

When I was diagnosed close friends were concerned that they could catch my disorder, they couldn’t.

Some people started talking about how I had a brain tumor, I didn’t.

Adults told me how they knew to stick things down epileptics’ throats to keep them from swallowing their tongues, that’s just wrong.

It so much worse, because I had to constantly teach people to accept me and how to protect me. I wouldn’t be able to help myself during these events so I was completely reliant on others to make sure I didn’t hurt myself.

But, to everyone who learned how to protect me, thank you from the bottom of my heart.

I am also thankful to everyone who supported me throughout my journey with epilepsy.

So, thank you getting me help when I needed it and for being the shoulder to cry on when everything was overwhelming. Thank you for keeping me from walking into traffic, or burning myself, or falling from ledges and down the stairs.

I’m sure it was overwhelming and I was definitely under appreciative at times but it truly meant the world to me and it still does.

Thank you to everyone who stuck around and stuck up for me. Thank you for keeping my secret until I was ready to talk about it and for being my friends when I was definitely difficult and more of a flight-risk than a friend.

If you don’t know my story or you want to learn more about it then here you go: raw and rambling.

The scariest day of my life was October 29th 2010, the day I was diagnosed with epilepsy. But, that’s not where my journey with epilepsy began. In fact, it was five months earlier that it first took hold of me.

In June 2010, I had my first seizure.

It was after a sixth-grade field trip to Rollerworld, during my dance class. Thirty seconds into Hallelujah I still had not moved and I wouldn’t respond to my name.

All I remember is hearing my dance teacher and mom yelling for me after they paused the music.

I didn’t know it was a seizure, no one did, except for my mom.

The seizures were infrequent at first, so I barely noticed them. Eventually, they were so frequent that we couldn’t help but notice them. I was having multiple seizures a day, sometimes multiple in an hour, or in a 45 minute class period.

On October 27th, I didn’t sleep.

I watched movies with my parents and paced around the house; worried and confused about what was going on.

On October 28th, we went to Boston Children’s Hospital for an EEG.

I didn’t understand what was going on, I just knew that I got some new pajamas and my mom was sad. I got paste and wires attached to my head. I watched strobe lights and blew on pinwheels, then they told me to sleep.

My Memere helped me wash the paste out of my hair. She told me stories about my Uncle Dennis who had the same tests decades before I was born. She used to wash the paste out of his hair, by 2010 she was a pro at removing it. Once my hair was clean I napped for hours on her couch as my mom told Memere about our day.

On October 29th, I had a lot of firsts.

I first heard the diagnosis: epilepsy. I first saw my parents cry. I first heard about ethosuximide. I first found out that I had the same disorder that killed my uncle. I first felt terrifyingly numb. I first found out that I couldn’t escape it.

My mom wouldn’t stop crying, she was miserable all day she wanted to stay home and not return to work.

I ignored it, and pushed it all down, I wanted to go to school to forget about the doctors. Throughout the day, family members called crying to make sure I was okay. I didn’t know how to respond, I just felt numb.

The only thing that broke through the numbness was anger.

In 2010, I was angry.

I had no choice but to take ethosuximide, it’s long list of side effects were stuck in my head: depression, changes in behavior, trouble concentrating, severe drowsiness…

By April the next year, I got up to 1250 mg a day, two pills in the morning and three at night.

It made me so tired, being awake for the entire school day was nearly impossible, I’d sleep whenever I could. After getting home from school I would pass out on the couch until dinner, sometimes I made it upstairs and slept through dinner until my 8:30 pills. I probably slept for around 12 hours a day in the first months and I was still tired all the time.

I tried to ignore everything that had to do with epilepsy.

I was filled with rage whenever someone would mention it. To take my medicine, to see if I had a seizure, to ask if I was okay. I hated that. Was I okay? How could I be?

I couldn’t be trusted to walk near a street without someone else holding onto me. I couldn’t ride a bike or ice-skate or go to sleepovers anymore. I was told that there were movies and tv shows that I couldn’t watch; field trips and concerts that I couldn’t go on because they had strobe lights. I couldn’t use an oven to bake or use a razor to shave.

It was humiliating and terrifying and angering. So, no, I wasn’t okay; I just wanted to be normal again.

The only person whose advice made me feel better was a little girl from my dance studio who had epilepsy since she was a baby. My mom had told her mom and they talked to me about it. I am so thankful for them for helping me to accept my diagnosis and realize that it wasn’t hopeless.

They helped put the sparkle back in my eyes.

In 2011 and 2012, I started learning how to live again.

Dancing brought joy back into my life.

I could get lost in the music and no one would talk to me. That year we danced to Mad World and it resonated with me. I didn’t have to smile at all and it was a relief, I was free to express myself without question. My favorite dances quickly became the dark and sad ones where I could let out all of my emotions. I could throw myself to the ground and leap into the air. When I got cuts and bruises I knew exactly where they came from, it wasn’t a mystery there.

If I was tired between dance classes my teacher let me sleep on the mats until class began.

Thank you for pulling me out of the corner, and for taking a chance on me when I felt hopeless.

In October 2013, I went back to the clinic.

They asked if I wanted another EEG. No one was sure if I would be okay. But, this was the only chance I had to take my life back once and for all, so after much debate I said yes.

A few days later I stayed awake all night, my dad and I went to a 10 P.M. movie after dance class, when we got home I made myself s’mores brownies, I saw a bug crawling on the window and no one else was awake to kill it so I did, I watched T.V. by myself, and did some homework.

The next morning after everyone else was awake we went back to the hospital, I was terrified. They connected wires to my hair with the paste, they let me watch Hoot as they did it.

After the EEG was over I asked the technician how it looked, she told me she wasn’t an expert but that I shouldn’t be worried as she didn’t notice anything concerning.

I was so impatient the next morning, I put on my school uniform and I was ready to go to the hospital to hear the results. On that morning my neurologist told me I was cleared, I was ready to cry I was so relieved.

Then he asked if I wanted to get off of my medicine, and as much as I hated the pills they became my lifeline in the years I was on them. It was scary to think the seizures could come back, but after talking to the little girl from dance I decided to take a leap of faith and get off of the pills.

In April of 2014, we started weaning me off of the pills.

At first I didn’t notice a difference, but then I started to feel more awake. I could get myself out of bed for school without feeling like a zombie. A few more weeks went by and a few more pills were taken away and I began to feel happier. I felt joy that I hadn’t felt in years, everything in life was more colorful and exciting. My friends noticed the difference, I was silly and 

In June 2014, I was free.

The bottle was empty, I had taken my last pill, and I felt content.

In November 2018, I’m safe.

I’m 20 years old and almost eight years seizure free. I can stay up late and see strobe lights. I can use an oven, quite well I may add. I still feel worried about the seizures coming back, but I know that I’m safe and I’m happy.

Thanks for reading all the way to the end, make sure to learn all about seizure safety.