Dating and Epilepsy

By Elizabeth Goodspeed
Special to Between Us

Liz with her boyfriend Ed at Senior Dinner

Perhaps, it is due to the nature of the small New England town in which I have always lived; perhaps, it is just me. Either way, I have always been a reserved, conservative girl. I have never followed trends and never moved with my faster, shall we say, peers. My friends are always chosen carefully and boys, well, as I already stated, I've never been one to move quickly. A lack of confidence was never the issue. In fact, it often took a lot of confidence to be my own person in a cliquey teenage social scene.

However, my confidence was tried when I began having generalized tonic clonic and simple partial seizures. At the time, I was a 15-year-old sophomore at Phillips Exeter Academy, a private school in my hometown.

When I began having seizures, I shut out the world. My guard was always up; my body language became inherently standoffish. Snubbing people was not my intent. In fact, what I needed was someone other than my parents to talk to, to cry to, and to understand what I was going through. However, I do not feel that anyone who has never experienced a seizure can fully comprehend the feeling or the frustration, especially a group of teenagers living in a utopian prep school community. As I listened to girlfriends fret over their hair, their clothes or their boyfriends, I realized they could not identify with me. Therefore, I did not even try.

I found that dealing with males was the same, if not worse. I became a pro at giving them the cold shoulder, was dubbed, "The Ice Princess," and was preceded by my reputation as a snob. Thinking back on dates I went on, I pity the poor guys who had to sit next to me in the movie theaters. With my legs and arms crossed, my body leaning away from them and my silent stare at the screen, it could not have been very pleasant for them. Again, it is not that I did not want to befriend or date guys, I was scared. I feared when and where I would have the next seizure, how severe it would be, who would see me, and mainly what they would think. I never knew whether or not to tell the guy about my epilepsy, because I had myself convinced that he would leave right then. My worries extended beyond high school. I worried that nobody would ever want to marry into my medical problems. Furthermore, they would definitely not want to have my children, that is if I could have children at all.

It was last summer that I began to overcome my fears. I spent two days a week in Boston volunteering at a research lab, which is where I met Edwin. Edwin and I instantly became close friends and hung out a lot, at work and after. One night, after we had gone to see a movie, I awoke on a Boston sidewalk. It was my worst nightmare. Although Edwin was aware of my epilepsy, I had fervently wished that he would never have to witness it. Witness it he did. Yet, within an instant, I knew that everything would be okay, because Edwin was with me. Gently, he reminded me to take my medicine and accompanied me to the hospital in the ambulance. While I lay on the stretcher, he held my hand, and I sobbed to him. The manner in which he listened as I vented my frustration and cried my tears, assured me that he saw beyond my epilepsy. Unfortunately, Edwin has had to witness other seizures, both generalized and simple partial. Despite this and the fact that we are now in different parts of the country, we have remained close friends.

It was Edwin who began to melt the Ice Princess. He was an integral factor in restoring my confidence. I credit Edwin for helping me realize that it is okay to allow people to get close. Because of that, I also credit him for my relationship with Ed. Ed, who attended the same prep school as me, and I have been dating for eight months now. Early on in the relationship, I vividly recall deliberating whether or not to tell him that I have seizures. When I finally decided to, I was surprised at his response. He looked at me and simply stated, "I know that." Some of the guys in his dorm had had classes with me and had seen me have seizures. The fact that Ed was unfazed, that he had not been deterred, was initially shocking. The shock was short-lived, because as I came to know Ed better, I realized that the fact that I have epilepsy is not always a barrier.

Ed had never known anyone with epilepsy before meeting me. However, he has been eager to educate himself about the disorder. On his own, he logs onto the Epilepsy Foundation's website to find out more information. It has proved to be most helpful in answering his questions, and he visits it frequently. Although Ed will never fully understand what it is like to live with epilepsy, the more educated he is on the issue, the closer he will come to achieving an understanding.

On July 17, 2000, I turned eighteen. Having graduated from Phillips Exeter Academy this past June, I'll be attending Bates College in Lewiston, Maine in September. Given the experience I had in high school, I plan to enter college with a different attitude. I intend to be more open about my disorder in an effort to educate and advocate for epilepsy. I am hopeful that this is one way to lead to a better understanding and acceptance of epilepsy within the general public and within local medical communities.

My seizure control has significantly improved since being diagnosed with catamenial epilepsy, adjusting my antiepileptic drugs and starting a progesterone regimen two years ago. Although I still experience simple partial seizures with each menstrual cycle and an occasional generalized seizure, I have learned to accept that epilepsy is a part of my life. A part is all it is. Epilepsy is not my life; it does not define me as a person. There will always be extra obstacles facing me as a person with epilepsy. However, I rest assured that relationships will not be one of those challenges. True friends will always be able to see beyond my epilepsy; they will recognize and love the optimistic, energetic and determined young woman that I am.

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