My mom got epilepsy when she was five years old. She got very sick from a virus that traveled into her brain, and she had to be put into a coma to stop her brain from swelling, this leads to scar tissue damage on her brain and gave her epilepsy. The doctors at the hospital told my grandparents that she was supposed to have brain damage, not be able to walk, even told them she may come out of the coma as a paraplegic. So, my mom waking up with none of that except having epilepsy, she was considered extremely lucky.
Growing Up with a mom who has epilepsy
Growing up with a mother with epilepsy was basically a normal childhood, with playing outside with friends, fighting with my brothers, thinking second grade was “hard”. Although I had to be more mature and understand what was happening to my mom at a young age.
My older brother, Michael, and I had to take on responsibility and be there for her. We had to know what to do when my mom had a seizure and how to help her afterward. My dad usually works until later in the evening, so if she was to have a seizure during the day it is me or my two brothers home to help.
Seeing a seizure for the first time
The first time I remember seeing my mom have a seizure was when I was six years old. My dad went into the store to pick something up and my brothers, mom an I was waiting in the car. I remember sitting in the car when Anthony starts asking my mom a question but she was not responding.
We all look at each other confused when my mom begins to convulse. My brothers and I are all two years apart so we all were very young at the time. My little brother Anthony wasn’t too scared because he had no understanding of what was really going on.
Watching my mom have seizures will never be something I got used to. It always and always will be a scary thing to see. Simply because I can’t do much to help in the minute or two she is having one. You’re not supposed to touch or try to move a person when they are in this state as it could harm them. The only thing you can do is make sure the person is safe from falling over or hurting themselves.
Advocating for a cure
When my brothers and I got a little older, my mom wanted to get more involved with the Epilepsy Foundation. We started going to yearly Epilepsy walks to raise money for the cause. My whole family would come and support my mom and it made the walks a lot of fun. Going to these walks and seeing all the people who are going through the same thing as my mom was really amazing to see.
My mom has even joined the board on the Epilepsy Foundation, helping with fundraisers, bringing awareness to the cause and setting up the walks at Point Pleasant. Over this past weekend, she has received an award from the Epilepsy foundation for her work with the organization.
Epilepsy strengthens you not weakens you
My mom having epilepsy made me into a very responsible person. I always look out for her and make sure she is feeling okay. I had to be there for her when she didn’t feel good or hurt herself. My mom has broken bones and even had a hematoma in her brain from her seizures. Now, my mom having epilepsy is something that drove her to become an incredibly strong person.
Epilepsy brings obstacles but there’s always a way to make a new path for yourself
My mom used to work at NBC in New York until she had a seizure and they had to fire her because of it. She got her license taken away for many years from epilepsy having to rely on others to go places or not go anywhere at all.
My mom had to grow up with a disorder that can be triggered at any time or happen anywhere, with no control over it. These are just some of the examples of the many challenges she faced. But throughout all her obstacles she never gave up and just kept pushing forward. My mom didn’t let her disorder hold her back or stop her from reaching her goals.
After being let go from NBC, she started writing books and since has written over sixteen published books which are even sold in stores.
One of the first books she wrote included me and my brother in it, it was the book that started her writing journey. It’s called “My Mommy Has Epilepsy,” She wrote this book to help parents with this disorder, who have younger kids understand it and know a little bit about it.
The part of the book I am in is the part where she tells a true story about an experience with having a seizure with us around. I was two years old and Michael was four, the story goes, we were all taking a walk outside with our dog around our development when my mom falls over and has a seizure.
At the time my mom’s epilepsy wasn’t as controlled as it is now so she did not have as much of a warning about when she was gonna go unconscious. Anyway, she falls over and ends up cracking her head open on the concrete and my dog Princess starts barking and her barking brought someone’s attention outside, which saved my mom’s life. They called the ambulance and she ended up being okay. This part wasn’t included in the book but I figured to tell the whole story.
Good things come with patience
Now, once she got her seizures controlled, she got her license back. She went fifteen years without having one. My mom showed me that you should always keep your head up, and always be positive when life gets you down. It’s the reason I have grown up to be such a positive person myself. My mom taught me you can’t dwell on the bad things in life, but only find a way to make them better.
With my mom having epilepsy there were many times I felt guilty. Guilty for not being there when she had a seizure because there have been many times this has happened when no one was home. Not being able to be there for her to make sure she is in a safe spot, and guilt for not being next to her when she woke up.
Being alone after a seizure must be a scary thing, not knowing what happened or if you hurt, or not being able to remember the little details about your life for a short time. How someone feels after a seizure is scary too, one minute you feel fine but then the next your body is drained, and you feel completely out of it. There was one time I came home from being at a friends house, no one else was home but me and my mom.
I walked into the kitchen and there was glass all over the floor. I immediately knew what happened, so this wasn’t something shocking. But I go upstairs to my mom’s room first to make sure she didn’t hurt herself badly, I ask her if she remembers anything or if her head hurts or if she remembers where she woke up, to try to piece together how she fell over. My mom luckily wasn’t hurt besides some cuts, but she easily could’ve been badly injured.
Seeing the world with a different pair of eyes
Growing up around my mom having epilepsy made me see other people differently. I am a very understanding person from this. With my mom having this disorder made me see you really don’t know what others are going through until you get to know them.
That everyone has different challenges they deal with in their everyday life. My mom taught me to always be nice to others, seeing her have her days where she’s upset about her disorder shes told me that’s its been just random people who give her a compliment or say something nice to her really change her day.
My mom is the reason I chose to go into nursing in college and pursue it as a career. Growing up taking care of her when she got hurt, helping her when I could inspire me to go down this path.
Made me realize I want to continue to help people when I got older. I want to be that person who is there for others and helps them when they are sick. Being there for my mom my whole life made me become passionate about wanting to help people when I got older.
My mom was able to help people just by writing books, making people not feel so alone and know there is someone out there who understands what they are going through. She has even received letters from people how she has changed their life. My mom inspired me to want to do that for others, make a difference in people’s lives.
My mom’s life is the definition of the saying, “When life gives you lemons, make lemonade.” She took her epilepsy and did great things with it. She never let it stop her from doing the things she wanted, she used her disorder to help people, to inspire people to feel their best and I always will admire my mom for that.
She is definitely someone I would consider my hero. Although her disorder gave her the path to be there for people and make a difference. When talking about my mom’s epilepsy with her she told me it has its pros and cons.
Throughout her whole life, she had many struggles and limitations on her life. Not just physical struggles but also mental, having to accept her disorder was very hard for her. Knowing she was different from the other kids at school or different from her friends wishing she was “normal”. Having seizures in front of people, random or people she knew was very uncomfortable and embarrassing, as it was something she couldn’t control or stop it from happening. She had to learn to overcome these feelings and accept them as it was apart of her life.
Accepting that my mom has epilepsy
Having to accept my mom has epilepsy myself was hard, I never would wish my mom was different in any way. Just having to get used to seeing her have seizures was difficult. Also the fear of not knowing when a seizure would occur made me anxious because you never know when someone with epilepsy would have one.
So never knowing when my mom would have a seizure and just living with the fear of basically the unknown was what I would say difficult. When I was younger I used to close my ears and want to shut my eyes but wouldn’t, I knew I needed to make sure she wasn’t going to get hurt. I had to put my own fears aside to be there for her. The older I got the more used to I got to this but it still is scary to see because you never know what could happen truthfully. Falling the wrong way or depending on where you are could leave her really hurt. If my mom didn’t have epilepsy I would be a different person.
How my mom’s epilepsy changed me
Her disorder made me a person who is compassionate, humble, grateful, appreciative and sensitive towards others as well. I am so fortunate that I had such a healthy life. Think back on it now, I could not fathom living life as she did, she is so strong. I am very lucky that my mom’s epilepsy is not as severe, there are people with epilepsy who have multiple seizures a day.
People who have to go through that every day and constantly get hurt, my mom’s epilepsy is more controlled so she can go months without having a seizure. I am very appreciative of the doctors my mom has who helped her control the seizures that give her the ability to live her everyday life and do things that if she were having multiple seizures she may not be able to do.
As I became older, I became sensitive towards others growing up seeing people go through things much harder than what my mom has and seeing all the people who have come to the walks and have similar stories made me have more empathy towards others with disorders. I am an extremely caring person, always wanting to be there for others and help them when I can because sometimes just one person can make a huge difference, which I learned from my mom.
I really appreciate the life I have because it could’ve been so different, my mom’s epilepsy made me more of a humble down to earth person, learned to be more appreciative about the things I have in life and the life I am able to live.
Ironically growing up with my mom having epilepsy I feel is the reason I am more laid back. I say ironically because you would think I would be more nervous about a person from seeing my mom get hurt and have seizures often.
But I learned you can’t worry about the things in life you can’t control. My mom is one of the most amazing people I know and if I grew up without her having epilepsy I may not be the person standing before you. My mom took the many obstacles standing in her way and did not let them defeat her.
She only grew stronger as a person who went out to make a difference in the epilepsy community. The purpose of this article was to tell my moms story, show people how being determined and motivated can really set you on such a great path.
The experiences that happen in our life create our future, every twist, turn, and a detour has its purpose. How to not let the bad things in life take over and to know things will get better because that is some of the things my mom taught me, and I hope I can grow up to be as strong, be driven, and inspiring as she is today.
Written by my daughter Alexis Chillemi