In 1988 I wanted to take the train to college, to make exams. When I was at the train-station I couldn't tell where I had to go. I waited for someone else to get a ticket, and then I ordered one (after I heard where to go.) I had this strange feeling because when I looked I my books things didn't make any sense to me. I didn't go to school, because if I couldn't tell where I wanted to go, the exams(or is it examns ??) wouldn't go right anyway.
I thought that I had overworked. I arrived on a Friday from a tour of duty in the Middle East, and on Monday I went to college. Without any leave.
When I was at home I felt sick, and couldn't talk right (Aphasia is the word for it in English??) because I couldn't find the right words.
My mother sent me to the doctor, and he sent me to a neurologist right away. He discovered a dark spot in the middle of my brains. I had to go to another hospital, and they discovered an Arterio Venious Malformation, a blood-vessel malformation in the center of my head.
It was to deep to operate, so they had to do another technique.
That was embolisation. That is closing down a bloodvessel by filling it with a glue-like substance. This can only be done with blood vessels that have no feeding function. I went to a hospital in France, 9 operations followed and things were great. One week in the hospital, a week resting at home and I could go back to work again.
I hardly had any limitations, the only things I couldn't do was lifting heavy weights and getting knocks on my head (like when you play a soccer-ball with your head).
I lived in a place 1 hour driving from my home-town, for Dutch standards that is a pretty long drive. I had a great job as a system-administrator (network supervisor), was married to my love and we had a son. The only thing I missed was a job near my home-town, because I was very home-sick.
In 1995 I got a job as a system-administrator in a place near my home-town. My prayers had been answered. I worked there for a week, and had to go to France for another embolisation.
During that embolisation, one of my bloodvessels burst and did the damage. The doctor said that is was ok (he obviously didn't know that there was something wrong yet, and sent me home). My behavior became more and more strange, my wife was not able to have contact with me.
She called my parents because she could not get a grip on me. I walked out in the middle of the night, wanted to steal cars and did other strange things. I had no moral brakes anymore. (They call this the Kluwer-Bucy syndrome.)
After two weeks I went back to work, but this was another me. My wife had to take me to work, and pick me up later because I couldn't find the way back home. After 3 weeks, I was able to find the way home on my own, but at my work they saw that I forgot a lot of things. After I came home from work I was so tired that I ate my dinner and went to bed. I slept every night for about 11 hours. Needless to say that my social live was at a minimum, just as my family live. After a while my work asked the doctor from work to examine me to figure out whether they had made a mistake taking me of that there was really something wrong. I went to a psychologist who did several tests to see whether it was my intelligence or my memory that was not good enough. I told my mother that I was concerned that they could not see the problems with the tests, but my mother told me that it was so obvious that it had to come out.
When we did the tests everything came out. What a relief for me. Finally there was proof that there was really something wrong with my memory, and that there was nothing wrong with my IQ.
After these tests my work was able to fire me, and take someone else in my place. I was replaced as a helpdesk worker. It is about the same work as I did, but now there is no pressure, and I can work in my own pace. I work for 5 and a half hour a day, and that is going great.
After a year my condition had improved, and my wife and I decided that we wanted another child. That was a big decision because when I was so tired I was irritated quickly, and our son was a busy boy. The pregnancy didn't go well, and my wife had to stay the last part in the hospital. A few hours after we brought her to the hospital they called that they made a emergency operation to let the baby be born. My dad woke me up (I stayed in there house for the time being), and rushed to the hospital (a 1 hour drive took us 35 minutes now...). There she was, our daughter, a little diamond of only 2 pounds. She had to stay in the University hospital for 2 months and after that she was transferred to a hospital nearby. She did very well and hasn't had problems ever since.
After a year we moved to my hometown. My homesickness was instantly over. I take the bus to work now, and that is great. I can rest for 45 minutes, so when I arrive at home I still have energy to do something in the house.
Since the things went wrong in 1995 I had 2 other embolisations, which were done successfully and in 1998 I had radiation therapy with the gamma-knive which closes the bloodvessels that are to small to embolize.
I started to ride motorcycle again. (I couldn't do it at first, because all the impressions of traffic were to much for my brains.) I can almost do anything except drinking more than 4 alcoholic beverages. I did it once after the bleeding, and I was thrown back a long way. But a couple of beers is o.k. tough.
It is May 12 2003 now, the hope that after my last visit this would be over was idle. The doctor said that it looked very promising. 95% of the malformation in my head was gone. Things are good, I started to ride on a laying-bike (or recumbent bike) last year and my physical condition has improved a lot. I used to sleep for 45 minutes in the bus ride back home from work, now I ride my bike from home to work and back. 60 kilometers (+/- 40 miles) a day. It gives me a strong physical condition and my head gets cleared during the ride back home so I don't have to sleep anymore when I come home from work. I still have my limitations, my wife has to manage the things at home. My wife is the planner, and I am the worker. It works great. We have been blessed with a third child, a boy who is two years old now. The little girl of 2 pounds is a very happy little girl now. And our oldest son starts to discover the world…
I just want to make one more statement. Enjoy life as you get it, with the ups and downs. Enjoy the little things in life (the singing birds on my way to work, the cows in the field).
A journey of a thousand miles starts with one step...