From An Active Life To The Back Seat

by Cornelis
(Netherlands)

I had never heard of Narcolepsy, and was just enjoying my life and my work in all kinds of places all over the world and have been doing this for the best part of my working life.

But since life has no menu and not all goes as you like, it had also for me a small surprise, while driving home from a dinner invitation with an organization I used to work for on an interim basis.

Passed my own office and leaving this, just as always phoned my wife and told her I would be home in 15 minutes.
But 15 minutes later phoned her again and told her to look out of the window from our apartment. She was able to see my car about 200 meters from home, and asked her also to come to pick up my things from the car since I was hit by another car who just entered the intersection not seeing me coming from the right.

Accidents happen and the fellow was terribly sorry that he did not see me; the police were already warned by one of the people living in a house on the same corner, with the standard check on alcohol we were both cleared and after the accident registration we could go home and as it turned out we just lived a few hundred meters from each other. He had just finished distributing the weekly newsletter from the church.

In spite of it being a new car no air-bags had been activated and most likely I had hit the side window with my head, not that I remembered but just felt a bit uncomfortable with some pain in my neck and some sore muscles, but no visible damages for both of us.

The next day I went on with my usual work and found, on coming home, a big bunch of flowers waiting in front of my door from the other party. But a week later my neck did still not feel comfortable and trough my physician an X-ray was taken at the hospital, but no sign of any damages. For the project I was on at that time, I had to drive 250 km morning and evening and it had till that time not been a problem. But after a few weeks, I felt tired and sleepy during the day and had also problems of keeping alert driving home in the evening. Just as precaution I decided not to drive daily anymore but stayed in a hotel a few nights a week.

The project was finished a few weeks later and I was just driving a few kilometres a day, and in my own office just easy going. Only the sleepy and tired feeling did not go away, and after consultation with the physician it was decided to make an appointment in the hospital with the neurological department.

Here I was the first time checked by the doctor's assistant having its training period after the University graduation, and was told that nothing was wrong, and sent home. But still not very happy and feeling still sleepy, tired and drowsy, I decided to write a letter to the head of the neurologic department displaying my feeling about the procedure and the outcome of the check-up.

Shortly after that I received an invitation for a new check-up and talking about how I felt and my sleeping patterns, he joked at first, referring to my age that it might be a sleep apnoea and I told him that a few years prior to the accident I had made my wife happy by having that repaired by one of his colleagues since I was usually cutting trees at night, which she did not really appreciate.

But based on the tests which were done, including the MSLT, on the planned date to get the result he told me that he had good and bad news. He started with the good news and informed me that indeed no sleep apnoea, but before I had the time to be happy he continued with the bad news and told me that I was the lucky lifetime owner of Narcolepsy.

Further testing took place to check and double check, also if other damages were there like MRI, heart, lungs, and all else he had on his list but it still remained the same - all ok but for a mild whiplash and a full scale Narcolepsy.

Since then my life has turned upside down. I knew what was wrong but that is only the start.

Try to tell people and even more so the insurance company what was wrong. And that it was there to stay!! While still having such a nice sun tan ???!!!!!.

The insurance company was fast in asking me to talk to a specialist for improving my working conditions in the office, and he came up with the option for a better chair (!!!), after that a re-integration organization and after a nice training the conclusion that it did not work out the way they had planned. (Still without assuming Narcolepsy).

And at last, their hired medical accident specialist who informed them that they should have to keep in mind that I would be unable to work with a rating from 80 to 100% for a long time to come (an answer not wanted by them!!).

Yes - they got that message!!!! And then?? Trying to undermine the relation "Narcolepsy and Accident".

Yes - they started their Phishing expedition, to find anything in my past which caused the narcolepsy.

Yes - a request to my physician, for my medical history: Sorry no pre-existing conditions for narcolepsy.

Yes - the economy a bit down (I am self employed) and trying to get them to pay for not finding a new project.

Yes - Trying to wear you out on your finances and then offer you as they mentioned a "cookie" to be nice.

In the meantime the narcolepsy is really settling in, since I was diagnosed very shortly after the accident and am now experiencing almost daily more and different effects from it. Over 5 years of narcolepsy have passed and they are still unwilling to accept the facts, while I am trying to cope with it, at least with the help of my family and friends, and one of them knows what it is because his father has the same.

And what does it mean for me?

Feeling exhausted, from the morning to the evening.

Feel like a walking vibrator. From top to bottom my skin crawls, like you have hit your elbow.

Not able to control staying awake during the day, in spite of the modiodal.

Night sweats, and sleeping with a hospital sheet to avoid the mattress getting soaked every night.

Forgetting what has to be done, or being busy with one thing and completely forgetting everything else.

Under Dutch law no longer allowed driving a car, only my bicycle.

Installed proofing tools on my computer, correcting typing errors I overlook, even in my native Dutch.

Not able to take on jobs as interim manager, since it is not really done to fall asleep in a boring meeting, while already people think you are overpaid for clearing all they have done wrong over the last 10 years.

Not able to work abroad, something I have done since I joined the Navy Air force at the age of 16 years.

It is just a short-list and far from complete, but I am so far able to maintain at least my good mood, but even that is taking more effort than it used to do.

That is why I am getting it down on paper, maybe it will clear my mind a bit, and maybe it will help other people to cope with their problems.
In principle you have to be careful or it drives you nuts, up the wall and all other expressions you can find for it.

Only one good thing I can mention about Narcolepsy: I sleep now on long haul travel by plane.

Have been translating the list "You Have Narcolepsy If" from Talk about Sleep in Dutch. Was really fun to do, and I have sent a copy to my lawyer and the neurological department of my hospital.

Intend to translate all I can lay my hands on and put it on a Dutch website for people who have a trauma after an accident, and do not master the English in the same way I do.

Anything: without commercial background, since there are enough sharks around to see if they are able to avoid taking their responsibility, or making too much money from victims, and their relatives, sick or disabled from accidents. Also I am looking at loss of income calculations, future value and so on, and make them to fit for Dutch conditions, since it is virtually not existing in the Netherlands. Maybe I am able to point people with trauma after an accident in the right direction, without them falling in the hands of sharks and scavengers.

At least than I will still have a goal in life. If not for me, then hopefully others will benefit from it.

"The Trailblazer"

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Dear Cornelis (aka The Trailblazer),

Thanks so much for sharing your heartfelt story with us, and thanks so much for striving to make the world a better place through your efforts. I know without a doubt in my mind that others will be able to benefit immensely from the insights you have provided through writing into your experiences, and for that I extend you my most gracious thanks.

I am wondering if you wouldn't mind shedding some more insight for me on one thing. I hadn't known or heard of any cases before of narcolepsy being brought about by an accident. I had always associated it exclusively as an inherited condition, whose symptoms usually begin to show themselves in the individual's teenage years. Have your doctors or has your own research been able to explain how a car accident brought it out in you?

Again, thanks so much Cornelis for sharing your story. Your strength, courage, and optimism through trying times is truly an inspiration. I would love to hear from you again in the future on this site.

Best of luck with all of your projects, and feel free to send a link to your Dutch translations anytime!

Sincerely,
Kevin