steve-snowBeing in a KLS Episode is like Being Taken Over

Short-term memory loss is one of the many symptoms of KLS, but his episodes are something Steve Snow would rather forget. When they strike, the 20-year-old from Ontario, Canada, says that he becomes a completely different person.

I had my first KLS episode in April 2007, a month before I turned 16. The episode actually ended on my 16th birthday, and I was diagnosed with the disorder a couple of months later.

Before the diagnosis, everyone thought I was suffering from depression. Even I eventually believed it, because I didn’t know what else it could be. I was confused, angry and sad all the time, and this caused many problems in my friendships and relationships. My behavior also affected my schoolwork and job.

My mom researched illnesses and came across KLS. She consulted our family doctor, who referred us to a child’s sleep clinic in Toronto. The specialist at the clinic had dealt with a couple of KLS patients before me, so it didn’t take long for him to confirm that I too, was suffering from this dreadful disorder.

One man, many different personalities

During an episode, I behave really oddly. I become silent and act cold towards my family and friends. I’m usually a lively, happy kind of guy, so to go from that to quiet and distant is pretty drastic. It’s like I have bipolar disorder. In the early days, I also used to confuse my dreams with reality, and that caused me to feel even more depressed.

During an episode, I feel as if someone or something else has taken over me. When I was younger, people would try to talk to me or get me to eat, and I’d get mad at them. In my mind, I couldn’t see that they were just trying to help. It was hard to deal with at first, but after a while I just accepted that my behavior was part and parcel of KLS. Everyone else accepted it too, and learned to be more understanding whenever I acted up. They all knew I couldn’t control what I said and what I did.

High school is a lot of fun for most people, but for me, those years were pretty miserable. My episodes were quite bad and I missed many parties because I wasn’t functioning properly. KLS was one of the reasons I dropped out of university at 18.

KLS has taken a backseat

Thankfully, these days, I don’t suffer from as many episodes as I used to, and when I do, they are generally mild. I no longer act childish or immature, and I feel much more in control. I am also mostly coherent and can remember how I acted once I’ve come out of an episode.

When KLS hits me now, it’s three or four times a year, with each episode lasting four to seven days. It’s really not that bad. Of course, when I’m healthy, I worry about when the next episode will strike, but overall, I think I have the disorder pretty much under control now. For the first few days I try to fight it, but that tires me out, so I just sleep it off. I’m no longer on medication, either. In my first year I tried three different types of lithium carbonate, and in my second year, I was on Ativan and melatonin. However these drugs affected my mood and behavior, so I stopped taking them altogether. I’ve been med-free for about three years now, maybe longer.

Creating a life to remember

After an episode, I usually feel a huge sense of relief. For about a week I feel really alive and full of energy; it’s like I want to do everything and nothing can stop me.

I work part-time at McDonald’s now, and will be heading back to university in the fall. Working during an episode isn’t always easy, but my managers and co-workers are all very helpful and understanding. Sometimes I get sent home early or I might call in sick; other times, I go in to work but let my managers know how I’m feeling.

I’m very positive about my future. KLS has taken up enough of my time, and I’ve decided that I will not let it take over my life anymore. Now, when it hits, I just do my best to keep on living. Fortunately, it gets easier with time. I look forward to when the episodes finally stop, so I can get out there and start living the life I deserve!

Article by: Alanna Wong Life

KLS Foundation

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