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Epilepsy Through The Eyes of a Caretaker (A Daughters View of Growing Up with a Mom with Epilepsy)

If you really knew me you would know my mom has epilepsy, and her having epilepsy has made me the person I am today.

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.

Feeling guilty

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.

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Why I Do What I Do – How I Found My Purpose In Life

Online Interviews

Published in Arianna Huffington’s Website Thrive Global

Life was grand as a toddler, going on weekend trips with my parents, playing with my friends and listening to grandma as she shared one inspiring story after another about the good old days. What more could a child ask for than the love and comfort of her family?

Surprising life quickly took a turn for the worst and that pathway I was destined to journey became rocky as traumatic obstacles crossed my life path and took me on a different journey. A journey, one no child should have to experience.

The Beginning

At the age of five, I had contracted a sore throat and an ear infection. My mother had brought me to the doctor’s office that evening and the pediatrician had put me on penicillin and told my mother to have me rest in bed. No one thought much of it at the time.

I rested in bed and I was on the penicillin for about ten days. On the tenth night when she put me to bed, my lips were more red than usual. The next morning about 8:00 A.M., my mother woke up because she heard unusual noises coming from my room that sounded like I was choking on my saliva. She walked into my bedroom to find me in my bed turning blue and having a grand mal seizure. This was the first time I ever experienced a seizure.

During the seizure, I fell to the floor, my eyes rolled to the left and my whole body began to shake. My teeth began to chatter, and I started to foam at the mouth and choke on my saliva and my skin color began to turn bluish because of the lack of oxygen I was enduring.

My mother ran to the phone to call the ambulance and had me rushed to the hospital. I was rushed to the emergency room and brought to the isolation ward. They were clueless if any type of serious or contagious illness brought on the seizure.

They administered many tests to try to diagnose the cause of the grand mal seizure. The doctors finally concluded that the grand mal seizure came from a virus. This was not an ordinary virus. It was a virus known as encephalitis.

The doctors had told my parents that the bacteria from the ear infection had traveled to my brain and that the virus was still in my brain. They were told that the viral encephalitis had to leave my brain naturally on its own. I was in an induced coma for four days. After the 2^nd day, my parents were told that if I survive, I would probably have severe brain damage or I could become paralyzed and paraplegic.

My parents were devastated, but they never gave up hope. On the fourth day, while I was in a coma, my father lay by my bedside and began praying to a saint in Greece. As he prayed he was visualizing the statue in front of his old church. In Greece, water would roll down this saint’s eyes. As my father raised his head and opened his eyes, he looked directly at me to find a teardrop rolling down my face. Immediately after I woke up. They tested me right away. I had no brain damage, but the infection had traveled to my brain and caused scar tissue damage, which left me with epilepsy. For years, I endured endless seizures.

My seizures finally became under control after years of tests, trail groups and trying every antiseizure medication known to man. My epileptologist gave me permission to drive a car, feeling that my safety was no longer in jeopardy or likely to endanger someone’s life while driving. I was so excited.

At eighteen, I was issued a license that right of passage so important for a young person striving for independence and autonomy. Since I have epilepsy, I was even more excited to get my license since I always felt different from the other kids and that I had something to prove. Now, the gap was closing and I was just like all the other teenagers, one of the gang, the cool girl in school with a license.

Picking my friends up and driving to the mall quickly became a ritual. We shopped until we dropped and enjoyed every precious moment. We helped each other pick clothes, buying like crazy until our wallets were empty. The morning after a shopping spree would find as at one or the others house, helping each other get into our new pants that we purposely bought two sizes smaller.

One of us would get on the bed and the other two would help pull up the pants. I can still hear Marie yelling at me to stop breathing and hold in my stomach!

No new purchase was sacred; we swapped our new clothes and could make three new outfits look like ten. As our closets grew, so did our friendships. We bonded, shopping being the experience that brought us closer. No matter how different we each were in personality, we all had a love for shopping in common.

At nineteen, life changed, as you would expect, it should for a young woman about to become an adult. Only my change wasn’t typical.

While I was driving with my boyfriend (who is now my husband) on a winding, country road in New Jersey, I suddenly went into a seizure. My muscles tightened, my arms curved to the left and my foot went all the way down on the gas pedal.

Our future together flashed before us as the car headed straight toward a telephone pole. Fighting me for the wheel was worse than fighting a boxer or wrestler. I had no control and while in the throes of the seizure, I had the strength of a couple of bouncers.

Finally, my boyfriend got control over the car, steering it safely away from the pole and bringing it to a stop.

By then my seizure had passed and a new era in my life began. An angel was watching over us and spared our lives that day, but my license was revoked and my days at the mall became fewer and more difficult to arrange.

Surprisingly, I never expected that not being able to drive whenever I desired would have such an impact on my life, but it did. I became a prisoner in my own home, no longer able to hop into the car and go to the mall, to Dunkin’ Donuts for a cup of coffee or Blockbusters for a video. I was at the mercy of other people’s schedules.

Grieving the loss of freedom

Not one to ask for people’s help, my isolation became chronic. I felt very alone even though I was a strong, independent person and I wanted to take care of myself. I wanted to be a successful woman working in New York, shopping her heart out after work then going to the bar to have enjoyed an evening martini with friends. But that idea wasn’t realistic; my dreams didn’t seem to have a chance.

My confidence was shaken, my self-esteem at an all-time low. How was I going to be a success? I had epilepsy. Where was my life going? What was my purpose? I was depressed, hiding from the world and feeling hopeless inside. Afraid to tell others how I felt, I was trapped.

Epilepsy not going to stop me

As time passed, I was accepted to Stockton University and with all odds against me, I was determined to succeed. I was put on this earth for a reason, and I was bound to succeed no matter how difficult the ride was going to be.

I remember like it was yesterday, I was in class and an aura came, I had a seizure and I woke up to a classroom in a dead of silence with all eyes focused on me. Even the guy I couldn’t stand had a face of remorse and sympathy. It was the worst feeling in the world. Then my professor, in a relaxed and friendly voice, asked me if I was OK and I said, “yes” and then my professor broke the ice by saying, “My roommate in college had epilepsy and he did just fine.”

Eventually, I graduated and then landed a job with a big corporation. I worked there for a while until one day I fell to the floor and had a seizure. One of the big corporate employees walked over me and kept going. Thirty minutes later his associate released me from my position.

Was I ever going to reach the level of success I always dreamed of achieving? Every time I took 2 steps forward I felt like my epilepsy knocked me back another three steps.

By then I was getting to marry my longtime love that I met after high school. I got married and helped my in-laws with the business they were starting. During this time after 3 years of writing, I finished the book I started in college, “Epilepsy You’re Not Alone.”

Letters from all over the US and Canada poured in and people thanked me for writing this book. One person even told me that they were on the verge of suicide, but they saw my book at Barnes and Noble’s and they read it, followed my advice and guidance and they gained purpose back into their life and the will to live.

It was then that I had realized how powerful words can be and how a simple book could make a dramatic change someone’s life.

It was then that I decided I want to be a writer, an advocate, a life coach. I wanted to help others like so many others had reached out to help me in my lowest and hardest times of life.

The Epilepsy Foundation invited me to Washington DC where I spoke in front of Congress about job discrimination. Afterward, I met Congressman Rush Holt who shook my hand, congratulated me on my courage and perseverance and shed a tear as he told me about heartwarming moments watching his sister grow up with Epilepsy.

During my years of writing in the health field and over 15 years of behind my belt, I began writing for a herbalist. I used many of things I learned and applied it to my own life. Amazingly, my seizures decreased, eventually stopped and fifteen years later I was able to drive again.

I was intrigued with herbals, vitamins, food for medicine, and the natural life (alternative medicine). For the next two years, I researched and collected valuable information and completed my book, The Complete Herbal Guide: A Natural Approach to Healing the Body and Maintaining Optimal Health Using Herbal Supplements, Vitamins, Minerals, Fruits, Vegetables and Alternative Medicine.

I started with a blog of 400, to a website of 10,000 to a redesigned website that brings 300,000 monthly visitors.

Some would be satisfied to accomplish what I’ve achieved with the struggles I have to face. Yet I am still determined to reach higher levels of success. I want to speak in front of large groups about the importance of a healthy lifestyle. I want to teach others about the power of positive thinking and most of all I want to help others who struggle will a disability. My mission is to make a difference. I want to help improve the lives of millions.

I realize no matter what age you are you can transform your life and create the life you always wanted for yourself. A life filled with happiness, inner peace, good health, and positivity.

Stacey Chillemi

Stacey Chillemi a mother of three is a popular and recognizable health and lifestyle reporter and expert, columnist and health host. Author of The Complete Guide to Natural Healing: A Natural Approach to Healing the Body and Maintaining Optimal Health Using Herbal Supplements, Vitamins, Minerals, Fruits, Vegetables and Alternative Medicine and Natural Remedies for Common Conditions: How to Prevent, Heal and Maintain Optimum Health Using Alternative Medicine, Herbals, Vitamins, and Food, along with 20 other published books, Stacey is the founder of The Complete Herbal Guide (thecompleteherbleguide.com). Stacey has been a guest on numerous lifestyle and health-related TV and radio programs, and is a recognized health and natural remedies expert, with over 20 years in practice as a Health Coach. Stacey has been a guest on the Dr. Oz Show, local news, and numerous radio shows.