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Stacey Chillemi

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 2nd 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.

stacey chillemi

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 on couch

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.

 

 

tim lakis

Stacey is a popular and recognizable health and lifestyle reporter and expert, columnist and health host. She has an incredible story of how she initially struggled with epilepsy and looked for answers for her own condition. She is the author of over 20 health books and the founder of The Complete Herbal Guide, which currently has over 4.2 million visitors. 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. For a complete list of her books and more information on Stacey, go to http://staceychillemi.com or https://thecompleteherbalguide.com.

About This Show

Tim Laskis is a down to earth guy who grew up racing amateur motocross and almost failed out of high school. He was voted least likely to succeed and was never expected to do much with his life. However, he found a way to excel in academia and earned his Ph.D. in clinical psychology with an emphasis in organizational behavior. Listen as Tim digs deep into the minds of his guests for nuggets of entrepreneurial gold. He interviews go-getters from a wide range of industries including business, professional sports, and television that discuss what it takes to be successful. He focuses on the real story from those who are out there in the trenches who can share tips that benefit his listeners.

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Inside the Dr. Oz Show and the Huffington Post Sleep Clinic

Dr. Oz and Arianna Huffington join forces to launch the sleep revolution at a pop-up sleep clinic at the Greater Refuge Temple church in Harlem, New York. Go behind the scenes to see the forefront of sleep technology and innovation.

StaceyChillemi (1)

Stacey Chillemi 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, which currently has over 157,000 monthly visitors. Stacey has been a guest on numerous lifestyle and health-related TV and radio programs.  Chillemi 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.

newspaper article colts neck

By WYATT OLSON/HEALTH WRITER OF THE ASBURY PARK PRESS

After studying advertising and marketing at Richard Stockton College near Atlantic City, the then 23-year-old began work with a television station in Manhattan, hoping to break into the field.

But the stress aggravated her lifelong condition of epilepsy, she said, and on two occasions she collapsed on city streets with seizures – once amid busy traffic.

“When I woke up, there was one cop directing traffic around me and the other was kneeling over me, trying to help,” said Chillemi, 28, during an interview at her home.

“After that, I stopped working in the city,” she said. “I realized that I couldn’t deal with the stress, I guess. I didn’t want to put my life in jeopardy.”

Chillemi‘s experiences led her to study the lives of others who have shared her disorder. She has completed a book manuscript with dozens of letters from people with epilepsy sharing stories of coping with the isolation, depression, and low self-esteem that commonly accompany the disorder.

The key to overcoming that, she said, is acknowledging limitations on the one hand, then discovering new avenues of personal and professional growth.

An estimated 125,000 New Jersey residents have epilepsy, said Eric Joice, executive director of the Epilepsy Foundation of New Jersey.

Chillemi moved on with her life after her Manhattan experience to a computer programming job in Monmouth County. Eventually, she married her college sweetheart, Michael, and they had a son, Michael III in 1998.  She also began a quest to come to terms with her epilepsy.

In 1995, Chillemi submitted a letter to the magazine Epilepsy USA, published by the Epilepsy Foundation of America, soliciting stories about how others coped.

“I was surprised when I got hundreds of letters back from people all over America and Canada,” she said. “A lot brought tears to my eyes.

“That’s when my life really took a turnaround because I realized there are so many individuals out there feeling the way I did. … I realized that I’m not the only one who feels alone, rejected, limited, and angry at times.”

One man wrote that he had a seizure and fell beneath a bus at its stop. The driver didn’t notice the man and drove away, catching the man’s jacket and dragging him down the street.

A 25-year-old mother of two wrote about the first time her toddler son had a seizure. She noticed that the boy’s eyes had rolled back in his head, and when she picked him up he was limp and not breathing – typical symptoms of a seizure but terrifying for the uninitiated. The mother eventually got the boy’s seizures under control through a special diet.

Other letter writers said they had 60 to 120 small seizures a day some had experienced mild brain damage as a result because of the continual oxygen deprivation.

Feeling different

Epilepsy actually is not a disease, but a term describing recurring seizures. They can be caused by many different neurological disorders brought on by trauma, disease, or genetic defects. During a seizure, part or all of the brain is consumed by abnormal electrical discharges, like a sudden electrical storm. About 2.3 million Americans have been diagnosed with epilepsy, according to the Epilepsy Foundation.

In about half the cases of epilepsy, the cause of seizures cannot be identified, said Dr. David Mandelbaum, director of the division of child neurology at UMDNJ-Robert Wood Johnson Medical School. He estimates that genetic defects are responsible for a sizable portion of these cases.

Researchers are working to identify them. The task is huge, given that about half of all human genes are involved to some degree with brain development.

Chillemi, who grew up on Long Island, was 5 years old when she contracted encephalitis, a viral infection that caused her brain to swell. Though she overcame the virus, the infection left scar tissue in her brain that manifested itself in seizures.

She said her mother heard gurgling noises from Chillemi‘s room and found her in the midst of a major seizure. The frequency of seizures increased when she reached puberty.

“As a child, I was restrained from doing a lot of things,” she said. “I didn’t want to be different from anybody else, and I didn’t see why I had to be different.

“When I was a child, I wouldn’t be allowed to play certain things in the gym, like basketball or any contact sport with a ball where you could get hurt. I was very angry, and as I got older I started feeling ashamed that I had epilepsy.”

When she reached high school, Chillemi said she was determined to keep her epilepsy a secret. The seizures she had then were often less intense, leaving her dazed and looking as though she were having a daydream.

During more serious seizures, her eyes would roll back, her teeth chattered and she would lose consciousness briefly. When she revived, she was confused and would remain fatigued through part of the day.

“At times, I felt alone,” she said. “After seizures, I would cry. It’s something you have no control over and that makes you very angry. Your body tells you when you’re going to have a seizure and you can’t do anything about it.”

Chillemi said her seizures begin with a tingle in the foot, then a feeling of electrical power moving up her body, which is called an aura. An aura is the earliest stage of brain irritation from the seizure’s electrical discharge. Some people feel a change in body temperature or anxiety. For others, the aura might be a musical sound, unfamiliar taste, or a strong odor.

Many people with epilepsy control their seizures fully or partially with drugs. Two years ago, Chillemi said she discovered an anticonvulsant medication that controls her seizures. Now, she has them only during sleep, although they are accompanied by a recurring dream of suffocation.

Questions about state law

Chillemi said she is content with her life as a stay-at-home mom and fledgling book author. She is negotiating with several publishers who have expressed interest in the book, whose working title is “Epilepsy: You’re Not Alone.”

Like most people with epilepsy, she does not drive – a restriction that adds to a sense of isolation for her and others.

“In a state like New Jersey, if you can’t drive, you’ve got a big problem,” said Joice of the Epilepsy Foundation.  Joice said New Jerseyans with epilepsy is hampered by an “onerous” state driving law, Driving restrictions are one of the reasons that national studies have found people with epilepsy are more likely to be unemployed or underemployed than the general population, he said.

A New Jersey statute dating to the 1920s requires doctors to report patients who have seizures to the Department of Motor Vehicles. A review board then decides whether a driver’s license should be suspended, Joice said. If it’s suspended, the person must be free of seizures for 12 months to qualify for reinstatement, a process that can take months, he said.

New Jersey is one of six states that require mandatory reporting by doctors, said Joice, who calls the law “regressive.” He said that mandatory reporting chills the relationship between doctor and patient. To skirt that law, many patients seek care in Pennsylvania or New York, where reporting is not required, Joice said.

The Epilepsy Foundation of America advocates driving laws similar to the approach taken by Wisconsin, which works on a case-by-case basis. Wisconsin licenses people who have been seizure-free for three months provided a doctor has submitted a statement in regard to the condition. Additional reports must be filed every six months for people who have been seizure-free for less than two years. Maryland has a similar system.

John Dourgarian, a spokesman for the New Jersey Department of Transportation, said the department consults with an epilepsy self-help group associated with the Robert Wood Johnson Hospital in New Brunswick.

“I think we try to be as sensitive as we can to this matter,” he said. “We don’t want to have anyone who’s subject to a seizure driving a vehicle. At the same time, if a person has, through medication or in some way gotten past the seizure problem, then they can be authorized to drive again. That’s something we work on with their doctor.”

Joice said that statistics in Wisconsin and Maryland show no increase in accidents due to drivers’ seizures since changes were implemented in the early 1990s. He advocates that New Jersey follow suit.

“We would be the last organization that would want to put people at risk,” Joice said. He expects legislation will be introduced in Trenton this year to alter the existing driving provisions.

Dourgarian, however, said he was not aware of any proposed legislation.

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