My life with Spina Bifida
On this page I will tell you about my own experiences with Spina Bifida. Several aspects of my life will be explained for instance: handicap, the medical world, school, work, acceptation of my handicaps by myself and other people.
Birth. When you are born with Spina Bifida, you will have to go a long way along several medical doctors and other caretakers. It begins just after birth. Your parents saw that you were born with a Spina Bifida although the didn't know before. They even didn't know anything about Spina Bifida. In 1954 when I was born, science even didn't know a lot about Spina Bifida and to know about it before you were born, wasn't possible too. My parents were shocked. Immediately after birth I was taken to a hospital to be operated. My SB concerns L4-S5.
here I am 2 month old
The operation. The
operation directly after my birth went well, but what will be the consequences
in the future is not certain. In the beginning it wasn't even certain that I
Finally I did survive and I stood at the beginning of a long road.
here I am about 1 year old
The first 4 years. During the first 4 years of my life I had to go to many medical doctors. There was much attention for my hydrocephaly, which occur by most of the children with Spina Bifida. Every 2 weeks they measured my head to see if my hydrocephaly is progressive. At that time they even consider to put a drain into my head to flow off the superfluos liquor in my head. Finally it wasn't necessary to place a drain in my head. After 3 years I finally could walk with some difficulties and it was certain that I would be incontinent.
Here I am with my mother , at that time I was about 3 years old
The years of kindergarten You become 4 years old so you have to go the kindergarten. My parents did their best to put me in kindergarten but most schools didn't want me because of my handicaps. After my mother had promised to take care of me and change my diapers herself, there was one kindergarten which let me in. I did my kindergarten only for 6 months. Normally kindergarten is 2 years.
on these pictures I am 4 to 5 years old and I can walk
Primary school. For me primary school was a disaster. My parents had to go from one school to another to get me in a school. It was very difficult to find a school for me. Most schools didn't let me in because of my handicaps. During the 6 years in primary school a lot of children teased me because of my handicaps. For instance they put my trousers down so I stood with my diapers in the schoolyard. Then the other children laughed at me. You'll understand how I felt. The teachers didn't do anything against it. Many time I came home crying. These period is of great impact for the rest of my life. Traumatic experiences during childhood could form for a great part your character. These teasings during childhood made me uncertain and distrustful. These uncertainty and distrust can lead to problems in applying for jobs, finding a partner, making relationships and accepting your handicaps.
More operations. During
the years of my childhood my walking got worse. As you could read persons with
SB may have "club-feet". I walked on my heels. The doctors decided to
operate on my feet, so that walking for me would be better and more easy.
Normally they do this operation when you're grown up at the age of 16, but my
walking was so bad they needed to operate on me when I was 10 years old. After
the operation and the rehabilitation I could walk better and more easy than
In 1966, because I was incontinent of urine, the doctors decided to operate on me again. As I wrote earlier I had to ware diapers. The doctors had a solution to solve the problem with the diapers. I got a urostomy (artificial outlet) according the method "Bricker". Now I didn't need to ware diapers anymore. That alone was a big relief to me. Of course I needed to have control of my stools too. After a period of training I could control my stools rather good. Nowadays accidents with my stools occur, but after cleaning up my life goes on. On a other page of this site I'll explain more about a urostomy.
Secondary school. After 6 years of primary school you go to secondary school. My parents went to look for such a school. But like primary school there wasn't any school which would take me in for the next 5 years of education. After some time the medical doctor advised my parents to put me in a boarding-school for disabled youngsters. All other schools refused mew because of my handicaps. They told my parents, that I couldn't follow gym class and other lessons. Nowadays one could say that such a behavior is called discrimination of people with a handicap. This special school I went to, was at a rehabilitation centre. I've been there for 6 years in a group of 11 other disabled youngsters.
Puberty. At the same time as I left home to live in a boarding-school, my puberty began. You became conscious of your handicaps. You find out about your sexuality. You find out that you don't feel anything in your penis and that could be a problem in a sexual relationship. You cannot accept your handicaps. Other people are placing comments on your behavior, but you don't get the necessary help to deal with your life and handicaps. For some years my life was miserable.
After boarding-school. I think you know that living in a boarding-school is a rather patronizing surroundings. You're locked out of society for a long time. At boarding-school everything was done for you. You didn't learn to take care of yourself. The society developed in a certain way you didn't know because you lived outside the society. The last year of secondary school I got social security so I could rent a room to live outside the rehabilitation centre. After I graduated from school it seriously went the wrong way with my life. I lost my room and for several months I lived on the street. Because I didn't know where to go to, I went to an organization which placed me in a home for homeless people. There I got the necessary help to learn to take care of myself. I've lived there for 6 years. After that I moved to another town to start a new and better life.
My jobs. In
1975 I got a nice job in a information centre for disabled people. Because of my
own problems at that time I lost that job and for 6 years I lived from social
security in a home for homeless people. When I moved to another town in 1982 to
start a new life I also took a new job. For 10 years I worked at the financial
administration of a big concern and later on for 11 years at the salary
administration of the same concern. For 20 years I also did a lot of work for
the trade union to accomplish better salaries and conditions for workers.
In July 2003 I moved to Belgium to start a new life again.
Acceptation of my handicaps. After I've moved to live on my own in 1982 it went well with me. In 1983 something was happened to me. Someone said something very nice to me and a miracle was happening. Suddenly I fully accepted my handicaps because of what was said to me. Now I think that accepting my handicaps is one of the greatest thing in my life that happened to me. I became another person. I was more friendly to others, more helpful, just a nicer person. As of than I had some friends, I did take even more care of myself en I more enjoyed life. Also society accepts disabled people in a better way.
The biggest happiness of my life. In
October 2001 I met a woman through this site on Internet. She then was pregnant
of a boy with a very high Spina Bifida. It seemed that the baby had very
little chance to live. The doctors told her that when the baby survived he has
to sit in a wheelchair wearing a corset or probably the baby will die soon
after birth because of the severe handicaps the baby would have. This woman
wrote me an email because she wanted to know more about Spina Bifida and how I
live with Spina Bifida. I told her everything I know about Spina Bifida and also
wrote her about the chances of her child. That's why it is one of the reasons
she decided to stop with her pregnancy after 24 weeks. Her boyfriend by then
(the biological father of the child) disappeared when he heard that the baby
will be born with Spina Bifida.
That woman and I were keeping contact with each other through email and later on through ICQ and MSN. Everyday we chat on the computer because she was living in Belgium and I lived in Holland. After some months there was growing love between us and we decided to meet in real live in Antwerp for the weekend. That was in April 2002. A few months later I spent every weekend with her at her home. All went so well between us that in November 2002 I decided to ask her to marry me. She said YES and on Christmas Day we were engaged in front of the whole family. Also I decided to move to Belgium as soon as possible. In July 2003 I left everything in Holland and moved to Belgium.
Since April 2004 I'm happily married. I've a good life in the countryside together with my wife and a big nice family in laws.
In October 2005 there is a big change in the life of my wife and me. During 6 months our home will be renovated. The ground floor will be totally renewed. It will be completely accessible for people in wheelchair. The toilet will also be accessible for wheelchair-users. On the ground floor there will be an extra bedroom so that friends of us in wheelchair can stay overnight or holidays.
January 2006. For more than one year now my wife and I tried to become pregnant by IVF/ICSI. After 3 attempts already, we hope that 2006 will be our lucky year and welcome a child in our lives.
June 2006. We've just one attempt left to get pregnant. After 5 attempts it still isn't happened.
September 2006. Our
last attempt for a child of our own is without any result. That's the end of it.
No child of our own. We need some time to come over this disappointment. After
that we'll look over some alternatives.
The renovation of our home nearly has come to an end. There is just some painting and decorating to do.
March 2007. In the meanwhile we finished the painting and decorating our home. There's only just one thing to do. The kitchen still has to be build in. Hopefully that will come to an end this month. Life goes on. My wife is working at the office and I do the housekeeping. So we're busy. We're looking forward to the summer, to ride our horses, to ride my quad, enjoy nature.
June 2007. Finally our kitchen is ready. Now you can say, our home is finished. My wife and I are happy that eventualy our home has became so wonderful. My health is still rather good allthough I became diabetic. Walking now is a little bit more difficult because of a serious accident with my knee. I now have less stabillity in my legs and fall more often. I'm thinking of using a walking aid.
February 2009. It's
been a while since I wrote on this page. So it's time to telle you some more
about my life. In september 2007 we went on a holyday in the south of France. It
was a super holyday. My wife and I had a nice time after having a busy time in
2006 and 2007.
In 2008 we worked on our garden. Also we met some new friends. Friends are important in our life. We couldn't do without them. Now 2009 just started. My wife has a new job nearer to home. We don't have any big plans for this year. We'll see what 2009 brings to us. My walking is is not so good anymore. Getting older brings also some newe healthissues. It has nothing to do with spina bifida. SB does not give me more troubles. I hope to write more often on this page.
This is the story of my life and the impact Spina Bifida has on it. It became a personal story. Maybe other people can learn something of my story.
My story could raise some questions or the need to react. You're welcome to write me an email by clicking on the "send mail button" below.
This is me 53 years old
© Donald Willemsen