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Epilepsy in the Eyes of a Friend

Deutsch: Gehirn lateral, Lobi
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Epilepsy in the Eyes of a Friend

Sarah J. Blake

Melanie told me that she rolled around during her seizures and that at times they were very violent. I thought I could handle it, but I was afraid the first few times she had seizures around me. I was not afraid of getting hurt. I was afraid of my own lack of knowledge and understanding.

I asked a lot of questions and did a lot of research. I quickly learned how to respond to her seizures without hurting either of us, keeping her hands away from her mouth but still giving her the freedom to move. I learned over the first few weeks how to recognize the onset of her seizures and help her get to a safe place. I learned to expect any of a number of seizure types and how to tell if the seizure might last a few minutes or 30 minutes. I learned that her seizures sometimes came in groups and how to recognize when she might have more than one.

I also learned that other people did not understand seizures. Some believed that her seizures were intentionally self-destructive, and one person told me that I did not need such behavior in my home and emphasized many times that he thought that Melanie needed 24-hour psychiatric treatment. I wanted Melanie to be accepted and to have a chance to build friendships and have a successful, happy life. I was afraid that other people would not accept her or me as her friend.

During Melanie's first couple of months as my roommate, we experienced quite a few negative reactions from other people. When she had seizures at the church we were attending, someone usually called an ambulance whether we wanted them to call or not. The nurses at the hospital did not seem to want to treat her seizures. When she went to the emergency room, she was usually put in a bed on a heart monitor and ignored. Four or five hours later, someone would check her blood levels and the doctor would increase the dosage of her two medications. Eventually she stopped going to the hospital, even when she needed treatment for the condition known as status epilepticus, which refers to multiple seizures which occur one after the other. 

For a while we attended another church because of the reactions of the people at our church. But we missed the original church and later began attending there again. There was a new associate pastor who was very understanding. We have also talked with the pastor about our desire for an ambulance to not be called unnecessarily.

Usually the first thing people wanted to know when Melanie has seizures was whether or not she had a doctor and was taking medication correctly. We had to explain that Melanie's seizures are not entirely controlled and that some of them may not be caused by epilepsy. She also has events which are called pseudoseizures. The doctors have mostly assumed that all of the seizures she has are pseudoseizures. 

As a general rule, we did not let the possibility of seizures keep us from doing most things. If Melanie had a seizure in public, I and whoever else was with me calmly explained to people who asked if they should call an ambulance that she was having a seizure and that it would end shortly. Her seizures usually last less than five minutes. If someone did happen to call an ambulance, she was usually alert again by the time it arrives and told the EMT that she did not want to go to the hospital. We lived in a small town and had to use EMS enough that we knew all of the paramedics and drivers. They did not question her decision.

The most frustrating thing about Melanie's seizures is the effect they have on her education and career options. She was not able to complete her junior year of high school because of her seizures and was held back. She was also placed in nonacademic classes. During the second junior year (1994-1995) she also had to withdraw from school. She tried to attend school again in the fall of 1995, thinking that the new school district would handle things better. At first, people's attitudes were positive. Melanie is very bright, and the teachers seemed excited about working with her.

During the six weeks before school started, Melanie did not have any seizures. She was not taking any medications. We thought that this was a good sign that things might go well for her. She was excited when she left for school the first day.
When I met her at the bus after school, she seemed tired and kind of confused. She said that she was fine. I suspected that she had had a seizure at school, but she did not tell me about it. The next day my suspicion was confirmed. I received a phone call from someone at the school who told me that Melanie had had another seizure and was being sent home. Two days later, Melanie got on the bus while apparently having a seizure. On the bus the seizure generalized and became a grandd mal seizure. She had three more seizures at school that day and was home two hours later.

We became concerned about the effect of the school's actions on her grades, but when we asked we got no answers. Melanie was placed on home-bound instruction. She missed many of these lessons because of seizures as well. Eventually, she withdrew again from school. In 1996, she enrolled again in school and was placed on homebound instruction. She graduated in January, 1998, at age 21.

Watching Melanie struggle with decisions about college and her career is difficult. How would she get access to notes she might have missed as a result of a seizure? How would the professors and other students respond? Employers tend to be unwilling to hire someone with seizures, especially seizures that are uncontrolled. How difficult will it be for her to get a job? She originally wanted to teach in a special education classroom, but owners of child care facilities have balked at the prospect of someone with seizures being around the children.

Over the years, Melanie learned a lot about controlling anxiety, which resulted in better seizure control. We don't talk about seizures much now, and I often wonder if she thinks about the things that happened in the past and how she is coping. I don't know whether the best thing for me to do is to let things go or whether there is some way i can help her move on.

The interaction of her seizures and emotional health has been by far the most difficult thing for me to watch. Melanie is bright and very capable. It hurts me to see her so disabled by depression and anxiety. Because she was not diagnosed with epilepsy, it was sometimes difficult for her to get the medications which gave her a moderate amount of seizure control. Therapists do not generally understand pseudoseizures and try to treat them solely as a behavioral problem rather than an anxiety-related problem. Thus the causal issues are never addressed. Most of all, I worry that she despises herself because of any perceptions she might have about the fact that the seizures were psychogenic. Although I no longer take care of her physically and she in fact does not need this, I don't suppose i will ever stop caring so deeply about how she feels and how she is treated... And I don't suppose I can forget that the seizures also had an emotional effect on me. That is something I don't know how to describe--and I don't know that my description would be respectful of Melanie's dignity even though I respect her completely as a person.

I would like to see more people come to understand seizure disorders and disabilities in general. I have been told that I was "taking care of" Melanie. I made mistakes along the way in my friendship with Melanie. I probably did too many things for her that she could and should have done for herself. But I never considered her special needs to be a burden on me. I care about her as my friend and work with and around whatever barriers keep her from participating in life. Being a friend involves reaching out and assisting when assistance is needed. People with disabilities sometimes need more assistance than "normal" people, but the ability to share feelings, dreams, and happiness makes every bit of responsibility worth taking.
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