Chapter One- The Girl in the Pink Suede Sneakers
I was born in May, 1962 in a small town in New Jersey. I was three weeks premature and weighed only 4 lbs. 1 oz. I was small enough to fit in the palm of your hand. I am told that the placenta (which carries vital nutrients and oxygen to the unborn child) was very small. This increased the odds of there being developmental issues in my life. However, I appeared to be in excellent health, with no defects of any kind.
I was a smart little girl and even began speaking at an early age. But, my physical development was not as smooth. I had trouble with small motor coordination. Things like tying my shoes were difficult, and I learned to do tasky things more slowly than other children my own age did. I am also left-handed, which increases the difficulty of mastering new skills.
When I reached school age, I was one of the smallest children in my grade. The other children laughed when I struggled to do certain things, and sometimes got angry at me for staring. My mother seemed concerned about the staring episodes. She wondered if it was seizures. I don’t have a memory of staring spells, or absence seizures, though I do have a clear memory of other people being angry that I was looking at them. I remember going to the hospital to get tested. I don’t remember much, but I do recall the electrodes being attached to my head. They were sticky, and I had to stay very still during the procedure. The doctors told my mother that I had Epilepsy, and put me on medicine. After a year or so, the doctors took me off the medicine, saying I was not having seizures. My family rejoiced! I was a happy, healthy little girl once more, until I reached junior high school. When I was 14, something happened that would forever change my life.
It was early spring, in the year 1976. I had gone to sleep early because I had an important test at school in the morning. In the middle of the night, I had what I thought was a dream. I saw at the foot of my bed a dark figure. This figure was hooded, cloaked , and foreboding. It stood at the foot of my bed watching me as I slept. This creature was evil. It intended to do me harm. It moved slowly across my room toward me. I knew that is this creature put his hand upon me I would die. The hooded figure continued its movement towards me as I watched helplessly, unable to do anything to stop it. As the creature stretched out its hand toward my head, I cried out to God to save me and I woke up. I was crying, but I was grateful to be alive. Then, I felt my body change. I begin to lose sensation throughout my body. I lost feeling. I was convinced I was dying. I had cried out to God, but I had been too slow and now I would surely die. I had been too late.
I passed out and lay unconscious for several hours before regaining consciousness. When I did, I was unable to move. a few hours ago I had thought I would die. now I like in a paralyzed body. I wondered what sort of life I would have. I was frightened. To make it worse, I believed that my parents would you find me in this condition and believe me to be dead and gone. few minutes I actually considered that they might bury me alive , not realizing I was still alive. that might sound silly to most of us today, but you have to remember I was 14 years old. I had no way of knowing if or how anyone would determine I was still alive. All I’m knew was I couldn’t move.
Time passed and I begin to feel my limbs again. I had some movement. I reached out my arm to take hold of the nearest object to my bed. My plan was to throw something to the floor to wake one of my parents. I knock over my lamp but no one heard me. I cried out, but no one came. No doubt I had no strength in my vocal cords. so there I lay on the bed for hours. My only companion was the spider on my ceiling. I fell asleep and I woke up several times before morning. I may have lost and regained consciousness. It might not have been sleep. Once I was fully awake, I dismissed the events of the night before as if it had been a bad dream. But in fact it was only the beginning. Several months later , in the middle of my physical education class I had my first grand mal seizure. this was far different than the absence seizures that I had had as a child. In fact I don’t remember them, but this new class of seizures I would never forget.
I usually have an aura at the beginning of a seizure. This is a partial, or localized seizure. It is often a migraine, or mild tingling on one side of the brain. Other people experience an aura differently. Soon after the aura begins, I begin to lose sensation in my right hand, while my body is taken over by the seizure. It is very uncomfortable. Many times, I feel nauseous. I also feel like things around me are becoming unreal; dreamlike. There is a sense of depersonalization that occurs. Sometimes, it hurts. It feels like my body is falling asleep, one part at a time. I often experience a heightened sense of emotions at this time. Sometimes, I feel angry, but the most common emotion for me to encounter during a seizure is fear. That is putting it mildly. The fact is, the seizure is terrifying! Epilepsy is not for the faint-hearted, that is for sure! Finally, my body begins to convulse, which is something I would prefer to not remember. Unfortunately, I have been awake for the entire seizure, most of the time. Afterwards, I go into a deep sleep. It is unfortunate that this is never restful sleep. When I wake, I am often agitated, and animated. I try to busy myself with things like folding laundry; anything to occupy myself. What I actually need, though, is to get myself some restful sleep. Yeah, that’s going to happen!
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