Mona's Story …

For parents, one of the greatest joys occurs with the birth of their children. One of the greatest fears occurs when their children face an illness and they feel powerless. Epilepsy is, in fact, a disorder, which affects not only the person, but those close by and seeps into all aspects of one’s life.

I was born in 1972 and diagnosed with epilepsy when I was 4 months old. Two weeks prior, I was been vaccinated with the DPT shot for whooping cough. At that time, the shot was defective (the "P" was anyway). However, the defective “P” had not been made public yet. Many babies were having seizures, autistic symptoms, and other defects as well. Some were even, unfortunately dying because of the vaccine. It was pretty hideous for many families. Parents didn't know. Later, many lawsuits followed through the courts.

In my family, there is no history of epilepsy either, so we knew the epilepsy was not hereditary. My first seizure was a jack knife seizure; basically, a complex partial seizure. The physicians ran a battery of tests. I was placed on ATCH and Valium for 2 months and my physician retested me. My EEG returned to normal. I was healthy until I was 11 years old. Then, I had my first seizure when I was 12 (onset of puberty). Since then, I have seizures daily.

Throughout high school, my medication regiment changed because my physicians couldn’t find the right balance for me. I had blackouts which lasted from 20 minutes to, sometimes 3 hours. These were quite dangerous, confusing, and horrifying. The medication side-effects ranged from drowsiness, double-vision, loss of appetite to weight gain depending on which medication they placed me on, tremors, and hair loss.

Sometimes, I felt that the side-effects were worse than the seizures themselves. By the time I was 18 or so, I also began to experience drop seizures. These were new and scared my parents more than anything else (which seemed difficult to imagine). I was falling 2 to 4 times a week, often in the bathtub and anywhere else my seizures chose to occur. My injuries included bruises, abrasions, and even broken bones.

It became more and more difficult to concentrate on my studies, but somehow I managed to graduate from high school spending my senior year taking 4 honor classes and getting accepted in a majority of colleges of my choosing.

I was pre-med at the time and wanted to remain in California, so I chose U.C. San Diego because they had a high acceptance rate for undergraduate students who wanted to attend medical school. However, on my first night sleeping in my new dorm room, I experienced my first grand mal seizure. I woke up on the ground, wrapped in my burgundy comforter, completely confused as to why I was on the ground. My roommate panicked and called the RA and called my parents who were in a hotel nearby. They rushed over and by then I was fine but they insisted on taking me back to their suite and when I laid down on the bed I started to seize again. My parents told me later that it looked like I almost went into ‘status ellipticus.’ They almost called the ambulance but just as my dad reached for the phone, I began to come out of the seizure.

That was the only time that happened to me. My usual seizures are complex partial or “spells” which only last 10-30 seconds. But, seizures are devastating no matter if they are grand mal or petite mal. They interfere with one’s life in ways one would never expect and set such limitations and restrictions that can play havoc on one’s well being unless well managed.

My seizures became so unmanageable that I had to withdraw from college and return home. I was determined to graduate from college, though. My parents were also were supportive of me which I will also forever be grateful for. Knowing how hungry I was to learn, they suggested a community college nearby and they would help me with transportation and anything else. By then, I was so chagrined with much of what life had doled out, bellwether friends, horrible medications, worse side-effects, and so much more, my expectations for a great community college education were quite low if not zero.

Nonetheless, I was willing to give it a chance probably because I had nothing to lose and because at that time all I wanted was to be educated. Much to my surprise, community college provided me with the best professors I’ve had to this day, good friends, vocational and extracurricular opportunities, and for the first time I really became a student of the world. I changed my major and direction in life. I found my talent in writing and politics. I graduated in less time than expected and transferred to U.C. Berkeley. Cal offered me another fantastic experience in one of the best public institutions in the country.

Living with seizures continues to be quite a journey, but I've learned that it's better to control the seizures, than have them control me. I've also been able to accomplish a great deal, receive my degree in Political Science and Legal Studies from UC Berkeley which was an amazing experience. Now, I am a fiction writer, poet, book reviewer, and work at a nonprofit organization part-time. Although seizures are always with me, so are the amazing joys that come with knowing how far I've traveled in spite of them.

Mona Lisa Safai