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6527212 October 21, 2008

Living with Narcolepsy: An Aberration Story

"I don't take people at face value because if narcolepsy has taught me anything, it's that what you see--your first impressions--aren't necessarily the truth."


Why is it okay for the media to poke fun of narcolepsy while medical issues such as breast cancer, autism, diabetes, and rheumatoid arthritis are off limits? In my very first Aberration Nation blog entry, Sleeping with Deuce Bigalow, I reminded readers of the sleepy blond character in the movie, Deuce Bigalow, Male Gigolo. She conked out while bowling, landing prostrate in the lane while her ball rolled on to make a strike. While most can agree that it's important to maintain a sense of humor, striving to understand the underlying truth around us can widen our scope, and lead to positive cultural change.

When I began writing my novel, Aberrations, I suspected that narcolepsy would be a fantastic vehicle for character development. Well, it has certainly developed the character of Sam, a cool university student featured in Ninety Naps a Day, a Cutting Edge documentary that aired recently in the United Kingdom. Sam, who I had the pleasure of meeting earlier this year, has joined the aberration nation! Her story provides important food for thought, not only around narcolepsy, but also on how we can harness the power of first impressions.

Describe narcolepsy for us using your own terms? What is it like and how does it impact your day-to-day life?

The definition of narcolepsy generally begins with, it's a neurological condition most characterized by Excessive Daytime Sleepiness (EDS), but it is so much more. I think it's hard to understand how this impacts daily life until you see it or experience it yourself. Having the disorder means that someone will sleep a lot, which leads to smaller amounts of awake time. I have to prioritize because I only have a small amount of time in which to get things done. The worst symptom I have is cataplexy, which is the sudden and involuntary loss in muscle tone. Basically, it's like being a puppet and suddenly having your strings cut. It comes on without warning, and bumps and bruises aside, it's embarrassing. At 23, I would like to believe I can control my body, but it does what it wants without my say. It's a real knock to my confidence.

How did you come to be diagnosed with narcolepsy?

I was at university studying for my undergraduate law degree. I had already been sleeping a lot for years. I also had cataplexy attacks but didn't know what they were and kept it a secret. I slept through my first year exams, and my parents were angry when I failed the year. When I told them what happened, my mum said, "'Enough is enough!" I didn't want to go to the doctor because I thought I would sound foolish complaining that I sleep a lot. I remember the doctor's exact words: "Sam, I think you have Galineaus Syndrome ... more commonly known as narcolepsy." I laughed. Then he explained the symptoms and they all fit. Next, he explained the tests and the doctors that I had to see, and I cried.

How has having narcolepsy shaped your life in general, including your self esteem and your world view?

Never judge a book by its cover. These words seem to be my mantra. People with narcolepsy and cataplexy are always getting judged in that way and it annoys me. From the outside, we all seem drunk or lazy or uninterested, but on the inside, we're screaming to be understood. People don't understand, or much worse, they just don't care. I know that, like any disorder, others may say, "Oh, it's not that bad," but at the end of the day, their life is not plagued by these symptoms. It's not their life that is getting wasted catching up from an endless desire for sleep.

What do you think are the most common misconceptions about narcolepsy?

The worst misconception is that if we would simply try harder, it won't effect us as badly, or that we are faking. That hurts the most, especially when it comes from someone who is meant to love and care for you. If people on the street don't understand, that isn't a nice experience, but when someone who is meant to be there for you, or is close to you, doesn't take the time to understand -- that bugs me the most. The way that you portrayed the dynamic between Carla and Angel dynamic in your novel--when Carla thinks Angel can get up if she wants to, or that she shouldn't be wasting her days in bed--really hit home for me. At times, there are people in my life who feel the same way and it really gets at me.

What have you learned from having narcolepsy?

I am a lot more understanding and sympathetic. I don't take people at face value because if narcolepsy has taught me anything, it's that what you see--your first impressions--aren't necessarily the truth. You need to know the whole story before you can make a valid judgment on something or someone.

How does narcolepsy make you unique? What are the positive aspects that you value and why?

I am the person I am today because of what I've been through, and for the most part, I like who I am. People who have narcolepsy and can still see the brighter side of life are amazing! I cherish the time I recently spent in Albany with the people from the Narcolepsy Network because those people have survived the worst part of narcolepsy -- coming to terms with it. For the most part, we learn to deal with people a lot better, because we don't judge them based on first impressions. We know there is more to people than just what you see on the outside.

Do you find it difficult to explain narcolepsy to others? How do you handle this?

Yes, absolutely. A lot of people find understanding the symptoms in black and white easy enough, but they have no comprehension of how these effect every day life. They don't understand that having EDS doesn't mean we simply need an extra hour in bed each morning. It means we're late for work or lectures. We don't just have cataplexy, we have an alienating disorder that makes it scary to go out in public. Social events become difficult; experiencing the symptoms in public is humiliating.

What are the top three things we can do for someone with narcolepsy?

1 - Take the time to listen and understand what they are dealing with.
2 - Understand that they have no control over it with or without drugs.
3 – Think before you speak. There are many things you could say to us that you may think are funny but they are humiliating to us.

If you could say anything to the world about your narcolepsy, what would it be?

Be patient with us. We know how are symptoms appear to you. We know that you wish we could wake up and work faster and have a laugh with you but the thing is that we are trying every day to get to where you are. You are lucky that you don't have these symptoms. We don't deserve them but we have them. We know how difficult it may be for people on the outside looking in, but just think how difficult it is not to be able to get away from it. We live with this disorder; we can't just go to sleep at night and forget about it.

I know there are worse disorders people must cope with, and I wish they all had as much help as narcolepsy has had recently in the UK to tell their story. I just hope that in the mean time people can become a bit more patient with each other, and a little more understanding, however naive that hope might be.

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If you'd like to share your aberration story, contact me.

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