Unstoppable: How Author Stacey Chillemi Has Redefined Success While Navigating Society With Epilepsy
There still is a lot of stigmatism with people with disabilities. People fear what they don’t know. I want people to understand that just because people have physical limitations doesn’t make them less of a person. They are beautiful individuals both inside and out. Please treat them with respect and treat them like you would anyone else. They may need a little extra help at times but do it in a way that is not so obvious or makes them less of a person. They want to feel accepted and respected.
As a part of our “Unstoppable” series, I had the pleasure of interviewing Stacey Chillemi. Stacey is an entrepreneur, speaker, author, coach, and podcaster of the show, The Advisor with Stacey Chillemi. Stacey Chillemi has had over 20 Best-selling books published. She recently launched her new book, Empower Yourself! You can find Stacey at https://staceychillemi.com/
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
For years, I was in denial about my disability. I didn’t want to accept that I had a disability. When I looked in the mirror, I didn’t like the person I saw. I didn’t feel like I fit in with society. I strived for many years, trying to be like everyone else. What I describe as “Societies Norm.” This way of thinking and behaving destroyed my self-esteem, and I was more of a follower than a leader.
My mindset was stopping me from moving forward. I didn’t feel I was worthy of being happy and successful.
It wasn’t until one specific traumatic event in my life occurred that the light bulb went on, and I woke up. It was then that I took the time to discover who I was, and I figured out what my purpose was in life. This life-changing moment changed me and helped me become the person I am today.
Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?
At age five, I contracted a sore throat and an ear infection. My mother brought me to the doctor’s that evening, and the pediatrician put me on penicillin and instructed my mother to have me rest. No one thought much of it at the time.
I rested in bed, and I was on 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 at 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 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. They brought me to the emergency room and hurried me to the isolation ward. They had no idea 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 2nd day, my parents were told that if I survived, 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 came under control after years of tests, trial 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 gangs, 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, you would find us at each other’s house, helping each other get into the 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.
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 to 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. 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, and my self-esteem was 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 IS 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 in a classroom in dead 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” then my professor broke the ice by saying, “My roommate in college had epilepsy, and he did just fine.” No worries class. I must have taken every class he taught because he made me feel safe in his classroom.
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 to 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 had 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 ready to marry the 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 they were on the verge of suicide, but they saw my book at Barnes and Noble, read it, followed my advice and guidance, and gained purpose back in their life and the will to live.
I then realized how powerful words can be and how a simple book could dramatically change someone’s life.
Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?
After I received that email from the person who was on the verge of suicide and they described the significant impact of how that book saved their life, it was then that I decided I wanted to be a writer, an advocate, and a health, life, and epilepsy coach. I wanted to help others like so many others had reached out to help me in my lowest and most challenging 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 behind my belt, I began writing for a herbalist. I used many things I learned and applied them to my own life. Amazingly, my seizures decreased and eventually stopped, and fifteen years later, I was able to drive again.
I was intrigued by herbals, vitamins, food for medicine, and natural life (alternative medicine). I researched for over two years 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, then created a website of 10,000 monthly visitors to a redesigned website that brings an insane amount of 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 an illness, disease, disorder, or 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 or what illness you suffer from. 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.
What advice would you give to other people who have disabilities or limitations?
I hated living life with limitations, but once I started to detox, change the way I ate, and create lifestyle limitations for myself, my epilepsy came under control. I realized to succeed and accomplish the goals you set out to achieve, you need to have structure and limitations in your life. I took the time to understand my body.
Certain foods didn’t agree with my body, like high sodium foods. It made me bloated and increased my water retention. I noticed when I had high water retention. Those were the times when I had the most seizures. So I changed the way I ate. It became a lifestyle change.
I also realized when I didn’t get enough sleep or was under a lot of stress. I had seizures, and when I was out with my friends, I could tell when my body had enough, and I hit my max. As much fun as I was having, I would say goodnight and head for home.
I incorporated more sleep into my life, and I learned different ways to handle stress from coaches so that I wouldn’t trigger any seizures.
I had to retrain my brain, restructure my life and set limitations in my life. It was those limitations that helped make my condition better. Limitations are not a bad thing.
And one of the biggest challenges was accepting that I have a disability and cannot do everything. My disability won’t let me.
Just because we have limitations in our life doesn’t mean we can’t succeed and achieve our dreams. You can achieve anything you put your mind to. We may have to do it a little differently.
If it is meant to be, it will happen. Don’t focus on the past, and don’t feel sorry for yourself. Learn to love yourself. Everyone has something in life. No one is perfect. Your disability has made you a stronger person. Use those strengths to help others and make this world a better place — we are who we make ourselves to be.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
Many people reached out to help me. My family, friends, and certain people who worked with people with disabilities or who had disabilities came out of the woodwork to help me and give me the support I needed to become the person I am today.
How have you used your success to bring goodness to the world?
I have made it my mission in life to help others to overcome their obstacles in life. All you need is that one special person to motivate you and inspire you to change your life and become the ideal you. I want to be that person. I want people to help improve people’s lives. We all deserve a fighting chance.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
1. There still is a lot of stigmatism with people with disabilities. People fear what they don’t know. I want people to understand that just because people have physical limitations doesn’t make them less of a person. They are beautiful individuals both inside and out. Please treat them with respect and treat them like you would anyone else. They may need a little extra help at times but do it in a way that is not so obvious or makes them less of a person. They want to feel accepted and respected.
2. They should be treated with empathy, not sympathy. People with physical limitations hate when others get that look on their faces or treat them differently.
3. If you care about them, you will want them to be a part of your life and never alienate someone because they have physical limitations. Too many people worry about what others will think. What matters is what you think, not what others in our society think.
4. Never judge a book by its cover. Don’t assume something about others or say cruel things about someone, especially if you don’t know them well. Many people have invisible disabilities. This is where they look fine on the outside. However, they are battling a disability or chronic disability that’s not visible to others. Many people with invisible disabilities struggle with physical limitations. However, they know how to hide well from the public. Saying cruel things hurts a person’s feelings, can damper their self-esteem, and destroy them emotionally if it consistently occurs.
5. People with functional limitations in self-care, or limitations in independent living tasks, and multiple limitations have the highest risk of suicidal thoughts, suicide planning, and suicide attempts. Many people with disabilities suffer from depression, and depression can lead to suicide. If someone you know with a disability is acting differently, sleeping more than usual, or staying in their room a lot, try talking to them or reaching out to a therapist to get them help.
Can you please give us your favorite “Life Lesson Quote”?
I have two…
“Attitude is a choice. Happiness is a choice. Optimism is a choice. Kindness is a choice. Giving is a choice. Respect is a choice. Whatever choice you make makes you. Choose wisely.”
― Roy T. Bennett, The Light in the Heart
“Don’t be pushed around by the fears in your mind. Be led by the dreams in your heart.”
― Roy T. Bennett, The Light in the Heart
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 😊
I would love to have breakfast with Oprah Winfrey.
Unstoppable: How Author Stacey Chillemi Has Redefined Success While Navigating Society With… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.