The Most Important Skills
You Must Learn
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My Determination to Succeed - The truths and triumphs of living with epilepsy
Disabilities, disorders, illnesses or diseases should not stop you from living a happy, healthy and productive life. People with disabilities can work, care for children, go out with friends, play sports, and have meaningful relationships, just like anyone else.
Since childhood, I have dreamed of having a normal life. I was determined to make sure that my disorder would not interfere with my goals and dreams. When I was young, others told me that there was a possibility that I might not be able to achieve everything I set out to do because I had epilepsy. Despite what others said, I knew deep down inside that, I could become the person I dreamed of becoming.
A little about me:
I developed epilepsy 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. When one is young, your immune system is weak and catching any bug surfacing in the air is all too easy. Especially, sore throats and ear infections, the most common sicknesses afflicting young children.
I rested in bed and I was on penicillin for about ten days. My mother recalls that 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 found me in my bed turning blue and having a convulsion. This was the first time I ever had a seizure.
She 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. The doctors at the hospital diagnosed the convulsion as a grand mal seizure, a We also know this type of seizure as generalized tonic clonic 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. All I remember is waking up in a hospital bed. My parents were in the room with me.
The doctors 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. The virus I had 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 head and that the virus was still in my brain. Doctors had told my parents that the viral encephalitis had to leave my brain naturally on its own. Doctors were not sure when the germ would leave my brain. Then said that while the virus was in my brain that it could possibly leave me with some type of brain damage.
I was in an induced coma for four days after the grand mal seizure. The doctor had told my parents while I was in a coma that if I were to come out alive I would probably have severe brain damage and there was a good chance that I was going to become paraplegic.
This horrible news devastated my parents, 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. My parents told me years later that after my dad finished praying a teardrop rolled off from my eye and down my face and I woke up. They tested me right away and found that the infection had traveled to my brain and caused left‑sided scare tissue damage. The doctor told my parents I was very fortunate; they had expected the outcome to be much worse.
The scar tissue damage I generated is very small and does not interfere with the way I think or function. The only problem that developed was that I found some difficulties with my long-term memory and I have trouble with my usage of words occasionally. When I am talking, I have problems remembering the word I want to use. So instead, I need to compensate with another word. This could be because the part of the brain that controls vocabulary is right next to the memory. The scar tissue damage is probably between both areas, I am assuming. These two functions of the brain are close to one another, This is probably the reason I have difficulties with both areas. This is minor handicap compared to other cases of epilepsy that were brought to my attention. I am very lucky. God was definitely watching over me.
Phenobarbital controlled my seizures, until the age of nine. Before I was nine, the only time I would experience a seizure was when I had a high fever. When I had a high temperature, I usually would have a grand‑mal seizure. Phenobarbital is known today to be a barbiturate and is not used on patients.
At nine, my body began to go through the stages of womanhood. This is when I experienced puberty. Once my hormones started changing, I began developing more seizures. My seizures would occur around the time of menstruation and ovulation. My neurologist told me that I was retaining water on my brain during this time of the month.
I had tried every drug you could image and experience many negative side effects, but I refused to give up.
I always kept a positive outlook, hoping that I would find the miracle drug to control my seizures.
At the age of eighteen, my seizures were well under control and my neurologist gave me permission to drive a car feeling that my safety was no longer in jeopardy or that could endanger someone's life while driving. I was so excited.
Unfortunately, after a few years, I had to stop driving because my seizures began to increase to two or three a month. The seizures occurred mainly at the time my hormones were changing during ovulation or menstruation, so I had to be always on guard. My seizures would occur four to five days before or after ovulation and menstruation. I was capable of having a seizure at anytime of the month.
I didn’t drive for over 15 years. I felt imprisoned inside my own home relying on my friends and loved ones to take me where I needed to go. For an independent person like me this was very hard for me to endure, but I refused to let my disorder control me. There was a purpose for all this and I was determined to find my true destiny. In my eyes, everything happens for a reason.
I refused to let epilepsy depress or control me. If Vincent Van Gogh could be a famous painter despite being epileptic, then I should be able to become a success too. I believe God does everything for a reason.
I felt uncomfortable sometimes-asking people for car rides because I know everyone has their own lives to live and responsibilities that they need to attend too. I didn’t want others to feel obligated to take me places when I have to go somewhere but I became better when it came to reaching out to others for help, though I have always been a self-reliant person. When someone has epilepsy or any disability, one needs to realize that you cannot do everything by yourself.
In order for us to do everything we want too, we need to realize that we have to reach out for other people's support and love. Having other people's love and support is a necessity in life. No one can make it through this life alone. My family and friends have helped make my life a lot less stressful. Dealing with epilepsy for once had become easier deal with when I accepted myself and loved myself. No one is perfect, we all have our flaws.
It may sound like I have everything under control. It may also sound like epilepsy has not affected my life. But honestly, it was very difficult to learn to accept myself as an epileptic, to love myself and to be proud of my accomplishments. I have had my highs and lows. Epilepsy has made me feel depressed at times and has gotten me down.
Sometimes, having epilepsy has made me feel like an outcast. I have realized in the past couple years that you can do anything they want in life, if you try hard enough and put your mind to it. You need to understand that you can become your worst enemy if you let yourself. YOU CANNOT GIVE UP. You cannot fail if you try. Failure is when you give up on yourself.
You need to keep trying until you succeed. Very rarely does anything come easy. The percentage of people that are seizure-free from medications is not that high.
It has been tough for me with all the testing and medical let downs, but I focus on the positive and avoid the negative. I have grown as a person from all these experiences both mentally and spiritually.
Mentally, having epilepsy has helped me mature and accept myself for whom I am. Accepting yourself is one of the most important steps to healing. You need to understand that yes, I have a disability and nothing going to change in that respect. But I have special qualities and characteristics that I can share with the world to help others like myself. The greatest gift is the gift of giving.
Spiritually I have learned a lot about myself; I learned what my wants and needs. I have found myself. The real Stacey. I have also learned that one cannot let having epilepsy control my life. Yes, I have epilepsy, but I do not have to stop living. Life goes on! Be proud to be you.
I am determined to live a normal life. You cannot compare your life to someone else's life. If you do, you're going to be unhappy. You need to love yourself and be satisfied with your life. If you're not satisfied than change the things in your life that make you unhappy!
You need to realize also that there are plenty of people with disabilities. You should not feel ashamed or feel different from other people. We all have a special beauty within us. No one is perfect or has a life that is flawless.
Someone that I met a while back taught me that there is nothing wrong with having epilepsy. It is very easy to begin to feel sorry for yourself until you realize that many people have it a lot worse. It has also helped me feel better to know that there are many other people in this world like myself.
As I mentioned before, I truly believe that all things happen for a reason. I believe that our lives are planned for us a head of time. There is nothing wrong with having epilepsy. Epilepsy is something that you should not be ashamed of or hide. Having epilepsy has taught me to appreciate life and appreciate what God has given me. It has helped me develop confidence in myself and to love myself. Epilepsy has also made me want to reach out and help others.
In short, there is very little in life that having epilepsy should prevent you from making your dreams a reality.
I graduated from Richard Stockton College in Pomona, New Jersey, majoring in marketing and advertisement. In the mid-nineties while in college, I began my first book, Epilepsy: You’re Not Alone. It was published six years later. Since then I have published sixteen books. Before and after graduation in 1996, I worked in New York City for NBC. Since the birth of my children, I have been a freelance journalist.
I have written features for journals and newspapers. My articles have appeared in dozens of newspapers and magazines in North America and abroad. I won an award from the Epilepsy Foundation of America in 2002 for my help and dedication to people with epilepsy.
I am committed to helping individuals with disabilities, diseases and disorders. I am aware of the challenges and triumphs of helping individuals and their families who have disorders or disabilities. Still, I am determined to conquer any obstacles that get in my way. therefore, individuals who have a disorder can live a healthy, happy, and productive life.