Feelings about epilepsy

I mentioned in my last post that epileptics will do best if they embrace their condition. I mean this in the most figurative way. For instance, there will probably never be an "epileptic pride" parade, because epilepsy more or less imposes itself on our lifestyles rather than influences our lifestyles. However, for me, the journey to embracing the condition was a difficult one.

After my diagnosis, I felt that I'd lost practically everything I'd worked for in college. A month before I was to leave for Rwanda for a year, I awoke on June 21st to a day wrought with seizures - and unlike every other time I'd had a seizure, there were witnesses to each episode. The seizures progressively worsened as the day went on, but never did I think that what I was experiencing was brought on by epilepsy. I felt that it was the stress of fundraising that was causing the episodes. But that night, when my family rushed me to the hospital after watching me lose control of my senses - it became apparent that I wouldn't be leaving the country. Yet, even after the doctors confirmed that I'd been having seizures and would need medication to control them - I still insisted that I'd be boarding a plane to Rwanda a month later.

I remained in this state of denial for a few days - and it wasn't until a month and a half after being home that I gave up my internship officially. I had to go through a mourning phase that lasted a few weeks. I wanted to be alone much of the time - and I was fighting the urge to blame all my problems on epilepsy. The fact is - and I mean this completely - that God was always in control of the situation. He put a love in my heart for the country of Rwanda, but He also allowed me to have this condition that would prevent me from returning there a second time to live out my dream. It was an extremely painful process. Aside from the emotional changes - there were many physical changes to deal with as well.

I was immediately put on a strong anti-convulsant medication in the hospital - but it only treated the symptoms. Well into the next day, I was still experiencing seizure activity. I think my neurologist was thrilled when he saw my EEG, because he was able to see right away where in my brain the seizure had started: my left frontal lobe. Each portion of the brain has a different job - the left frontal lobe happens to control speech and arm movement. The night of my grand mal seizure, I had lost control of my speech and arm movement. For instance, I lost my ability to speak at all. I also witnessed my own arms flailing about - and I had no way of stopping it. I was in and out of awareness - and was in a dream state for some of the time and in a state of panic the rest of the time. Yet, I was able to think coherently. I remember thinking to myself while on the way to the hospital: "Why aren't we going to Methodist hospital? It's closer," and I also remember knowing the answer the questions my dad was asking me, although I couldn't utter a verbal response.

My neurologist wanted to try me out on Keppra, a more up to date anti-convulsant. He wanted to start me out on a medium dosage to see how that worked for me. After about a month on the dosage level, I was unsteady while walking and still experiencing auras (the feeling I get before the seizure - it feels as though time has stopped - that's the only way I can describe it). We increased the dosage to the next level, and I noticed a change right away. I felt more energetic, and the dizziness I'd felt on the first dosage started to stop altogether. However, that's also when the depression started. I'll go more into that later. I called my dad while he was at work one day, because the depression was almost unbearable. I found myself daydreaming more than normal - probably because I was so unhappy with my life that I "created my own reality," if you will. I was also overly sensitive and frequently lost control of my emotions. We decided to try a different medication, Lamictal. It had taken me about two months to adjust to Keppra, and now I had to re-adjust to a new medication altogether. The dizziness was worse on this medication, and after about a week of using it, I broke out in a rash all over my legs and chest. The rash is a sign of an allergic reaction to the drug, and the percentage of people who experience this reaction is small. What can I say? Lucky me.

I went back onto Keppra, and the rash eventually went away. My neurologist recommended that I see a psychiatrist to deal with the depression. It was an emotional session for me, and the objective, Polish doctor looked at me and wondered whether or not I really needed to be talking to him, or a psychologist. After that, I saw a psychologist a few times and talked about everything but the epilepsy, it seemed - but it turned out that the epilepsy wasn't the source of the depression - it was the loneliness and pain of inactivity. I'd gone from being a busy, successful college graduate with the world at her feet, to a girl confined to her home, adjusting to a new medication while all her friends were at work. I'd lost my driving priveleges, and was unfit to work for about three months.

Early on, I received advice from another epileptic woman I'd met over email. She told me that its OK to laugh. To me, this meant that being serious all the time about the condition was not going to help me - but, I needed to free myself to tell seizure jokes and poke some fun at myself. Its actually quite easy to do - telling a seizure joke, that is. For example, one day while I was out with some friends, I made a sarcastic comment to my friend's boyfriend, and before he could comment back, I quickly blurted out, "Sorry, I was having a seizure when I said that." From that point on, I started to feel comfortable with talking about the condition, and I loved talking about it, in fact. I read everything I could find about epilepsy on the internet, and I practically consumed a book I received about epilepsy from the local Epilepsy Foundation.

Before I ever knew I was epileptic, I was aware of the stereotypes. In fact, I didn't question them much myself. Generally, when people think of epilepsy, they don't think of someone staring off into space for a few seconds; they think of a person on the ground, foaming at the mouth and rolling around. I'd like to challenge every person reading this to imagine what they think of when they think of epilepsy. And be honest.

I'll be on again to write more about living with epilepsy. I truly do hope that this is educating someone out there. Feel free to comment or share your experiences.