PEOPLE STORIES

"It has been my experience that whenever my condition deteriorates, technical support increases my quality of life". The experience of Pierrot.
 
Foto01.jpg (49615 bytes)I am Pierrot D.C., born in Lokeren, Belgium on February the 28th 1959 as the fourth child in a family of eight children. At the age of two I became very sick (pneumonia) and after examination in hospital they thought I had Polio. It was only six years later that doctors started to think that their previous diagnosis could be wrong. After a biopsy the diagnosis was changed to Duchenne Muscular Dystrophy. In the meantime I lost my father, who died from braincancer and a brother (1 year) and sister (6 months) who died at an early age.
 
In my eight year I went to a special school for children with physical disabilities. It took a while to get used to all those kids with several forms of handicaps; but I had a marvellous time indeed
In the summer 1970 my mother, stepfather, two brothers (3 years old and 21 years old) and my sister (16 years old) died in a car accident. A drunken trackdriver drove into them. It has been the most intense experience in my life. In one moment I lost all that was dear to me, I lost all security, all beauty gone.
 
It took me years to understand and accept that the inconveniences of life were without divine reason. I realized that what has been was important, not what could have been. I understood then that life should be measured in terms of quality and not quantity. I loved my mother well, she taught me that whatever happens, man should try to find peace with what he has got, that beauty and happiness must be generated within the framework of what one has. So although I lost my family at an early age, they gave me all I needed to believe in myself, to find my proper way.
 
My two brothers and I were separated. Each one was adopted within the family. I went to live with my aunt and uncle, in a small village in the Flemish countryside. They had no children and were rather old fashioned.
 
In 1971 I finished primary school, left the institution and went to a regular school (college). In that same year I stole my medical file in hospital and read it through. It was rather confronting. In it was written that because of the disease I had I would die at an early age (20-25). This one sentence had an incredible influence on how I viewed life for the next ten years; until it was proven that the diagnosis was wrong. For you must understand that it killed all ambition for a twelve years old kid. Where is the need to study, to find a job when one dies at 20-25?
 
At the age of 14 I came in contact with the Eastern philosophies and was so intrigued by them that a few months later I ran away from home to enter the temple of the Hare Krsna people in Amsterdam. I was a monk there for about six months but left because I started to have my doubts concerning religious paths. In the years to follow I explored different religious and semi-religious paths. And at the end of the path I found myself. I understood in the end that it was men who created truth, that all things seen, all things experienced were translated through the human mind, and so induced with meaning.
 
At sixteen I returned to Belgium and was adopted by the father of my best friend. I returned to college until two years later my friend died in a motorcycle accident. Being eighteen I left home and went to live on my own. I left school and by means of an exam I entered university. This I did because I was very interested in philosophy, it was not job-related for due to my diagnosis I was running out of time. In the same year I joined the gay liberation movement. Since I was eleven years old I had been convinced of my homosexuality and I felt good with it. Now was the time for my "coming out".
 
At 21 I sold all I had and left for Scotland. I had hoped to live the rest of my life in Scotland but due to the climate (my lungs) I had to return to Belgium within six months. The experience of travelling in Scotland taught me that having a severe physical handicap should not be an absolute obstacle if one wants to travel. For you see in Scotland I travelled on my own although I couldn't walk anymore and I had no wheelchair; but by means of the British National Health Service I was able to solve those problems. I spent some time in a new-age community in Findhorn and in the Tibetan Buddhist Centre in Eskdalemuir.
 
Once back in Belgium I rented a small house and lived together with a good friend of mine. During those years I started to have serious lung problems. During a stay in the intensive care unit of the university hospital in Gent they took another biopsy and so at last it was known that the diagnosis of 1967 was wrong. I had no DMD but Limb-Girdle Dystrophy. I felt cheated. The time perspective I had lived with was invalid. Nobody was able to give me any indication as to how my disorder would proceed, so I started searching for information on NMD.
 
At that time there was no organisation in Belgium for people with NMD, so I made contact with VSN in Holland. They gave me the little information on LGD they had and through them I came in contact with a hospital specialized in NMD (De Bijtjes, Belgium). It was in 1987 I visited that hospital. By then I had a severe form of respiratory insufficiency and a scoliosis that gave me a lot of sitting problems. After my first medical examination in De Bijtjes they told me they could certainly improve my condition by means of mechanical ventilation (tracheostomy) and surgical correction (Lucké) of my scoliosis. They even gave me the message that by doing this I would get a chance to live for years to come. It took me about 15 seconds to decide and so I entered hospital for about two months to have the job done.
 
I think it's hard to imagine the consequences of respiratory insufficiency for someone who has never experienced it. In the end it intervenes with your memory, you fall in sleep at the most inappropriate time and it makes you depressive for you cannot fight against something happening within the area of your brain, I couldn't anyway. And as I am a fervent reader, I love books, I couldn't cope with the fact that after reading two pages of a book I had already forgotten the first one, it was just infuriating.
 
Now, the beauty of mechanical ventilation is thus, that in a short time all symptoms due to respiratory insufficiency disappear completely. In a way it felt a bit like being reborn. It has been my experience that whenever my condition deteriorates, technical support increases my quality of life. Il was then too, that I realized the importance of reliable information.
 
In the same year I joined the Belgian Patientgroup for people with NMD. One year later I became a member of the board and in 1991 I was elected president of the Flemish organization for people with NMD. I have taken two sabbathyears in 1995-96 and since last year I'm again president of the Flemish organization.
 
In 1990 I became foster parent of a boy of 13 years old, and although it was no easy task to raise a 13 years old boy, I'll be always grateful and glad I decided to do so. He's 21 by now and lives on his own since a few months. And so am I for the moment. I live together with three cats and a monkey. A monkey I have since 1983. She's my favourite pet and I always take her with me whenever I go on vacation abroad.
 
In 1996 my older brother who was a severe drugaddict died from an overdose after leaving prison. So my younger brother and I are the sole survivors of a rather extensive family.
 
I have been living on my own town for 21 years by means of a pension given to me by the Belgian government (43.000 Bfr/month). If you have a disability as severe as mine and you choose to live independently, the pension given is hardly enough to cover all costs: for I have need of several extra services and those must be paid too.
 
When I look back on my life I consider myself a lucky man: not that my life has been an easy one but through sorrow and pain I've found myself a way to wholeness.
 
 
May 1998