At the age of 14 my life took an unforeseen turn. I was standing at a red light. The next thing I remember was waking up in the hospital. Nobody really knew what was going on and I was diagnosed with a circulation problem related to puberty. Two weeks later I passed out again – this time in the presence of my shocked father. It didn’t take a rocket scientist to figure out that I’d just had been hit with epilepsy. The diagnose was confirmed by a neurologist one day later.
Here were my new rules:
- No more cycling – it was considered too dangerous (until I was stabilized)
- No more alcohol (sounds weird at age 14 but that’s another story)
- Regular sleeping schedule – a night without enough sleep could easily cause a seizure a day or two after
- Beginning of a trial and error phase with various medications to see what would work for me
- Regular EKG monitoring and blood tests at neurologists
There is never a good time for health issues. As a young teenager I was struggling with major self confidence issues. I was one of the smallest boys in my class. Girls looked at me as a good friend but not exactly as dating material. Of course I wanted to be cool. All out of a sudden I started passing out on sidewalks and woke up in hospitals.
I must have had 4 – 6 seizures in public (plus the ones at my home). One of them bruised my face badly and I felt all eyes were on my when I showed up at my school (over 2000 students) the next day showing scratches and stitches all over my face. Being cool kind of went down the toilet rather quickly.
I was at a crucial stage in my life. I had ambitions to push hard in school and have a career. Now there was this major road block: I ended up with a strong medication after some other ones didn’t show results. I had very bad hallucinations when I started taking it. My friends were jealous because they had to pay for pot and I was constantly in the cloud – all for free. I just didn’t want being on a trip.
One day my pills fell on the floor and my friends grabbed some of them. Now they learned the hard way that I was taking heavy medication. My hallucinations eventually went away but what stuck was being tired and unable to focus at times when I should have been at the top of my game.
I was desperate enough to go to church one time and pray for help. I went at a time when no-one else was there. I am not a religious person in any traditional sense. Any higher power must have been rather surprised to see me in their house.
Epilepsy has many different flavors and I don’t want to compare myself to much more severe cases or others who simply perceive it different. I hated the seizures. But then there is also some weird inner power drawing me to them. The old romans were talking about being close to god while having a seizure. There is certainly some level of sensation when being sucked into some mysterious place. I still wouldn’t ever want to be there again. There are better ways to connect to my inner self for me.
Moments of terror
- One of my most fearful moments was being on stage. My mother worked at the state theatre and I had a small part in Othello. It was really small: I wasn’t even alive. I was a dead Turkish seaman that Othello carried on his shoulders and threw on the ground I was padded and wrapped in a Turkish flag. There I had to lay without moving for about 15 minutes in front of 1500 people. Doing that is hard enough for anyone of us. But laying there wondering “what if I have a seizure” is a whole different story.
- Driving a car was another thing that really scared me. I held off until I was more stable and felt I could take the risk at age 22.
- Later on I was crazy enough to ride a motorcycle and even picked up paragliding. These were attempts to face and overcome my fear.
- Being in business meetings with high profile people also freaked me out. What if I’d blow the show and embarrass everyone by passing out?
Why am I calling this a curse in disguise?
When I share this story with others I always hear “I am so sorry to hear that”. I tell them that epilepsy actually wasn’t bad for me at all. I was very full of myself. I was arrogant, judgmental and thought I could rule the world. Epilepsy changed all that and made me more grounded. I had to begin to really look after myself. I never drank a drop of alcohol after my diagnosis. I also made sure I got enough sleep. Of course I was struggling with that at party times and got punished for it on a some occasions.
Me not drinking has caused trouble at dates, because it makes women uneasy when I drink juice and they are having wine. It is a weird lack of control that comes with someone being sober while you are drunk.
I still have a scar in my face as a reminder of this story. I just hardly ever notice it.
Epilepsy was a very humbling experience for me. It puts me eye to eye with many other people that are struggling in life. For that I am actually grateful because it enables me to connect with them on a deeper level.
Some of you might realize that vulnerability isn’t exactly a weakness but rather a strength. It especially helps when people think I am “all that”. I don’t even know where they got that idea from in the first place.
As of today I am still haunted by fears of having a seizure. Usually at times when it would be really embarrassing or detrimental if it would happen. Ski lifts are one of my worst nightmares. That’s not good for someone who loves to ski.
I haven’t had a seizure in 19 years. I am still taking medication – fortunately without having any side effects. I am glad my body sent me a strong signal to slow it down at the right time.
Instead of forgetting and ignoring this vulnerability of mine I rather accept it as part of my life. This cup is definitely half full, not half empty.
I left out a few chapters in order to not make this story too long. I think I’ve shared enough for you to understand.