Living with SB: testimonies
Olga De Wit
Sara’s story - My life with spina bifida|
My name is Sara, I am 22 years old and I live in Villa d’Adda, a little town near Bergamo, located in the north of Italy.
In my opinion, to describe my life until now is like a series of events that happened one after the other, does not truly reflect the progress of my years.
I believe that the best metaphor that would represent my experiences is an incomplete watercolour painting.
PINK, as a blow hung on a door to celebrate the birth of a little girl.
I was born on March 30, 1984 in the ‘Riuniti Hospital’ of Bergamo and after seven days, when I just started breathing the air of the earth for the first time, I was operated for Myelomeningocele.
Myelomeningocele: it’s a word; it’s an operation, an unknown malformation, for me as well as for my parents. I can imagine them, twenty-two years ago, with their young faces that I saw sometimes on the old family’s photos. They were a young couple just married, shocked by an unpredicted event... Spina Bifida.
GREY, I could see in my mind's eye their fears, their tears, their desire to escape, their uncertainties, but I can also easily imagine the strength shown during every day. A positive strength, a superior strength, strength greater than themselves.
In every day a little success was hidden: to recuperate from the operation, the physiotherapy and the corset that helps me getting a good posture, my first words. But the most important conquests were to be able to walk and to achieve great results at school.
GREEN, the colour of a leaf bud.
Growing hand in hand with my parents, I enjoyed the first important meetings of my life.
The little children in the nursery school called me “little robot” or “tartar”, as I wore the corset. They were nicknames that came out from the TV programs popular at that moment.
I always replied promptly, my words were suitable for the occasion, thanks to the suggestions given before by my mother.
“...on those occasions, confronted with such words, I had to reply in this way...”
They are concrete, well-defined, true suggestions and they were the first answers to my handicap, which I was looking forward to, since I was a child... I needed these words expressed in that way: concrete, well-defined, true.
When I think about meeting with other people, certainly I recall some important figures of the medical staff like physiotherapists and doctors. They are represented by the WHITE colour.
Medicine isn’t only an employment, it’s a talent, because it does not only have to solve problems mechanically, but it has to be creative in taking care of precarious situations. As we can read in a French adage of the XV century: “To treat sometime, to mitigate very often, to support always”.
Therefore the concept of health-illness or health-handicap doesn’t only refer to the medical-scientific evaluation (the two words “Spina Bifida”), but it refers to the complete person, to the values in which he or she believes, to the daily routine, to one’s own preferences and interests.
And my thoughts go directly to my paediatrician, who often asked me about what I would do in my future. My best capabilities were being expressed in school; therefore my great dream consisted in following her example and becoming like her...
With the serenity that distinguished children, I discovered in gym my limits through various types of training, impossible abdominal exercises (until today, too!) and uncoordinated movements.
Those limits weren’t so serenely accepted during the adolescence years! They were unacceptable! BLACK.
I discovered the desire to be like other girls, the need to be alone and accepted in a large group of friends at the same time, the desire to say “No” to all the proposals suggested to me. I felt unattractive, different. Because I didn’t wear Levis jeans, or because I felt constricted to dress in large t-shirts in order to hide my corset.
But little by little I’ve softened these disappointments
I’ve reached the RED colour, my favourite one.
I’ve learnt gradually that every person is different from the others and becoming unique in the world. This peculiarity hides inside his real beauty.
My friends were important treasures all my live: with all my friends starting a confrontation between our similarities and our own peculiarities. We look at each other, realizing that everyone was born with different abilities in order to do the different activities of life. Thanks to this consideration the desire arises to stay together, in order to help each other when it is necessary, or to keep silent when being together and near.
This interior beauty deriving to be unique in the world was shown clearly when a boy decided to stay with me, instead of another girl, simply because he liked my way of being unique.
Simply because he was looking for Sara, with my “strange way of walking”, as Baglioni, (an Italian singer) says in his song.
Coming back to my initial metaphor with its range of colours, I can see the PINK, the GREY, the GREEN, the WHITE, the BLACK and the RED drawn and delicately superimposed over a painting. The bright colours become darker, and the gloomiest ones receive light; as in my life hopes, fears, dreams and limits happen.
Today my 22 years of life could be represented by the ORANGE-RED colour of a rising sun. I’m going to start the third academic year of the Medical-Surgery Faculty at the ‘Milano-Bicocca’ University, I love my boyfriend, I believe in God who has always watched over me and I’m constantly accompanied by my parents and my friends, which share with me this piece of life.
I would like to read a part of this Book in order to finish my talk:
There is a time for everything,
and a season for every activity under heaven:
2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.
|Romani Josef from Tanzania|
We meet Romani Josef, 19, who comes for regular check-ups of his bladder function. He lives a few miles away in Marango, by the foot of Kilimanjaro. His mother abandoned him as a newborn baby, his father died very early. Romani lives with his grandmother and another boy from the village in a small hut. He tends to the house, washes his clothes, cooks ugali, a maize porridge which is the local basic food.
"I learnt to catheterise two years ago, he says shyly. Before, I was never dry. Now I’m totally dry. I have tried to go to school many times, but I was not allowed to continue because I smelled too much. Nobody wanted to be with me. I could not visit other people in their houses.
Romani has an artificial leg and leaps around with the help of crutches. In his home he looks after two sheep and a lamb. He hopes to be able to sell one sheep in return for an income, then let the lamb grow and later on get a new lamb.
Once a month he is visited by an occupational therapist and once every three months he goes to the hospital clinic for new catheters and a medicine called Oxibutinin, which affects his continence in a positive way. One catheter lasts for two months for him.
He has not yet given up hope of going to school.
"Maybe I’m too old for ordinary school, but if only I could have some education which teaches me to read, write and calculate, I would feel much happier", he says.
|Veronika Vadovièova is an Olympian shooter.|
Veronika Vadovičova (born 1983, Trnava, Slovakia) is a young woman with Spina Bifida from Slovakia. She studies “Teaching Sports for Disabled Children” in Czech Republic. Recently, she engaged herself in the Slovak Association for Spina Bifida and Hydrocephalus, which is a one-year old organisation. Veronika has two brothers, a boyfriend and likes cooking and baking, skiing and sportscars.
But more important, in the Slovak republic she has a special role in representing the disabled people.
One time, when the weather was too bad to ski, she killed time by shooting a rifle. And although she liked to ski, she seemed to have an exceptional talent for shooting. The first disabled person of Slovakia ever to shoot the Olympian discipline became her trainer and that was the beginning of a successful sport story.
Now she trains twice a week for 4 hours and participates in competitions during the weekends. These competitions are held between people with and without a disability. For the moment, there are 6 disabled shooters, she is the only one with spina bifida.
Olympic shooting is has two weapons, rifle and pistol. Veronika shoots the rifle. It has four disciplines: 10m and 50m, each lying and standing.
Veronika participated for Slovakia in the Paralympics of Athens 2004 (sixth place) and Sydney 2000. She has participated in various national and international competitions, such as the World Championships in Korea in 2002 and the European championships in Czech Republic in 2003. From these championships she has brought home over 70 medals. Veronika is the runner-up European champion of 2001 and 2003.
The Slovak community has rewarded her for these achievements as the Disabled Sportsman of the Year not less than 3 times.
Like every woman in that occasion, when I was born, my mom (a twenty year-old girl) asked if her baby was a boy or a girl. Doctors just answered: “it doesn’t matter! Your baby will soon die!”
I was born a girl.
Since that day, twenty four years ago, my mother promised herself to fight for her baby girl’s life and teach her, every single day, that she has lots of issues in her life more important than having Spina Bifida. I think I learnt the lesson!
I have a low lesion (S1, S2). However, I made lots of surgeries on my feet and wore horrible orthopaedics boots for years. My colleagues at school named me “Hook Leg”, and lots of times I thought life wasn’t fair for me since the beginning…
My mother was never afraid about each surgery. She never took off the boots or gave me the pink shoes I dreamt about. She never talked to my parents’ colleagues. Instead of this, she taught me to invest in myself, in doing sacrifices, in waiting, in believe in the future, she repeated me all the time: “You are a girl! And girls don’t cry!”
Nowadays, I can walk, jump and run. I can dance when I go to the disco. I can buy nice pretty shoes. I have nice friends who like me for what I am. And now, I think it was hard, but it was fair…
I learnt to read and write at the age of four. At twelve, I wrote two books and became the youngest Portuguese writer. At thirteen I wrote another one. At eighteen, I went on a date with my (real) first boyfriend (who had never heard about Spina Bifida but was someone who didn’t care about it!). At twenty-one I finished my degree in Psychology. Five months later I got my first job in a recognized institution, which supports children and teenagers with social and family needs.
I never allow anyone to show special preference to me, or discriminate against me because I have a handicap. It may seems like a stupidity and proud, but I like to think that everything I got was because I am a clever girl, and not because I was born with Spina Bifida. In my life, I dreamt, I fought, I worked, I failed and I tried again for my ideals, like everyone else.
I am not proud for having Spina Bifida but I didn’t order it, so I think it’s not my fault and I mustn’t have to justify that all the time! Living with Spina Bifida never helped or prejudiced me in fighting for, or reaching, my goals. It was never determined for nothing.
I don’t believe people who say “I have Spina Bifida and I like it!” No one likes standing in hospitals for months or walking in a wheelchair. I don’t like living with Spina Bifida but I have no choice and I learnt about the best strategies to overcome some particular disabilities. There are not better or worse strategies; there are just different ways to doing the same thing!
As a psychologist, I manage the “Social and Psychological Department of ASBIHP (Association for Spina Bifida and Hydrocephalus in Portugal). As a volunteer I think it’s important helping others (specially disabled children and teenagers) and giving my experience not only as a technician but also as someone who really knows what they mean. In this way, I feel I am giving something I would have liked to receive when I was a child.
I have to tell you: I am not a better or a worse individual because I have Spina Bifida. I have virtues. I have defects. I have fears. I cry and I smile. I like summer and buying clothes. I hate being on diets and I hate getting up early. I want to be successful in my career and I dreamt about marrying and having four children (and taking lots of folic acid before get pregnant J). More than everything, I like living!
After everything is said and done, I am just a girl.
|Carole Armour, UK|
My father was a founder member of ASBAH (UK) and so I have been involved with the association, both nationally and locally, for most of my life.
My involvement with “Your Voice” (the ASBAH Disabled Users’ forum) has lasted about ten years. I have attended, and helped organize, some of the events that the group has arranged in that time, including two big conferences in 1997 and 2000. Last year (2003) I was the chair of “Your Voice” and became more involved with how ASBAH thinks and operates (for example, in matters such as funding for the group). As chair there is always someone you need to speak to: here, a knowledge of other members’ skills is particularly useful, together with an awareness of whether a member is temporarily unavailable to help for, say, medical or private reasons.
In the past, I have taken on the challenges of moving from my parents’ bungalow to sheltered housing, then to council housing and, finally, to living fully in the community with my partner Malcolm, who I have known for fourteen years. Before moving to Leicester twelve years ago from Sussex, I worked for twenty years in a large secondary school as a telephonist / receptionist full-time during term time.
I have been on the Leicester ASBAH committee for ten years and Malcolm joined the committee about four years ago. The two of us spend a lot of our spare time growing plants to sell for the association. I also arrange trips for our local members which have been well attended.
I am also on our local access committee, which keeps an eye on access issues in the community such as public transport, shops, pubs and other public buildings.
I have also travelled quite widely to such places as France, Spain, Ireland, the U.S.A. and Canada (where I went horse-riding in the Rocky Mountains). As the years have gone by my self-confidence has increased and, although I still get worried by trying anything new for the first time, I usually manage not to let that put me off – although I confess that I’m thinking long and hard before agreeing to Malcolm’s latest suggestion that I try paragliding in my wheelchair (and yes it can be done!!).
Stuart Jenkinson, Australia|
My name is Stuart Jenkinson, a 33 year-old proud Western Australian, who lives in a suburb of Perth. I live with my wife of 6 years in a 3 bedroom unit that has a small courtyard. I work for a government-funded organisation with a staff of 5. We provide information, advocacy and support to people with any type of disability. Having spina bifida myself has, no doubt, given me an insight into some of the needs of our clients.
My background is very different to the life I now lead. I was born the youngest of 3 sons in York, a small town in the Avon Valley. It is a picturesque area 100kms inland from Perth. My family owns, lives on and farms a property 20kms out of York. My childhood was similar to my peers except that I wore a small caliper, walked with a gait and had frequent trips to Perth’s Children’s Hospital for medical appointments. I was fortunate not to need many spells in hospital and was able to walk reasonably well until my teenage years.
After some resistance, I was allowed to attend the local kindergarten and school following my parents’ interviews and meetings with administrators. I travelled with my brothers on the regular school bus and had no special teachers or aides. I enjoyed playing cricket at primary school and now enjoy watching cricket and Australian Rules Football.
When I was 9 my parents began taking me to Perth at weekends for wheelchair sports training field events. This enabled me to compete in Junior National Wheelchair Games and gave me lots of experiences of interstate competition and air travel, plus contact with many interesting people. The big adventure, which followed as a 17year old, was a trip in the Australian Junior Squad, when we visited and competed in sporting events in Tennessee USA – such a long way but a great experience.
Fortunately, my parents joined the Spina Bifida Association of Western Australia when I was a baby. This introduced my family to others in similar situations. It helped us all to learn and grow. We always had a seaside summer holiday with other members of the Association away from the heat of the inland. The annual Spina Bifida Association camps became part of our regular summer routine. During these times as a child I made strong friendships with other children with spina bifida – bonds which have endured and brought us together as adults. Together with spouses, we now meet frequently socially and enjoy lots of different activities together– sharing good and bad times.
Growing up on a farm meant I enjoyed lots of space and freedom – catching yabbies (small shellfish) in farm dams, having tractor and truck rides, picking mushrooms in winter, playing in the creek, having pet lambs, chooks, cats and dogs etc. When I was 14 my father bought me a 4-wheel motorbike, which allowed me to drive myself around the farm and to and from the school bus – great fun. I now enjoy fishing as a hobby and like the sense of peace and freedom it brings.
For my last 2 years of schooling I had to go to a bigger town with a bigger school. It meant a 55km trip each way, and with 2 flights of stairs to some classrooms, my legs and knees began to weaken more. After finishing school, I worked as a junior clerk in the local government office. Following that, and a period of adjustment to life with crutches and then a wheelchair, I worked at a call centre at the bigger town where I finished my schooling – a 55km trip each way again. I then rented a small flat having moved out of my comfort zone of life at home on the farm, and gradually learned to look after myself.
Although I greatly value my independence, I have learnt the wisdom of asking for help when needed. My move away from the space of country Australia to live and work in the city brought several big adjustments for me, but with the support of my wife I now feel comfortable and competent in my new surroundings. It has given me wider opportunities for employment and social and recreation activities, and I have become more involved with the Spina Bifida Association and it’s activities, having been on the management committee for several years.
Guro Fjellanger, Norway|
My name is Guro Fjellanger and I am 38 years of age. I was born on the west coast of Norway in the city of Bergen, but was brought up in Stokmarknes in the nothern part of the country. I am the oldest of three sisters, and the only one afflicted by spina bifida. I went to an ordinary kindergarten and school and recieved no special teaching, although I spent at least one moth in Oslo every year through primary school in order to undergo various forms of surgery. My medical journal from this time says ; "Guro is an intelligent child with a great imagination and an ugly walk..!".
During my childhood I participated in different forms of activities such as gymnastics and playing the clarinet in the schools orchestra. Of course I was not able to do all the same jumping and running as other children. But I was among the best at throwing two or three balls against a wall for a very long time... My parents chose not to have a car, which was possible because I grew up in what was then a village . This forced me to walk, use my tri-cycle during summer or chair sledge during winter.
My parents raised me as similarly as possible to "a normal" child togehter with my two sisters. This gave me a strong belief in being just as valuable as any other human despite my disability. I have always been interested in politics, epsecially issues related to the environment, racial equality, gender and questions of disability. I moved to the southern part of Norway, to the capital Oslo, when I was 19 to become a silversmith. At the same time I started my engagement in politics by joining the board of the youth party of Venstre (The Social Liberal Party of Norway). Since then I have been into politics on different levels, and became Norway's Minister of Environmetal Protection in 1997, a post I held until March 2000.
Travellling to different conferences and negotiations as a Norwegian minister on cruches, I was very often met with the question: " Did you have a ski-accident?". They were always smiling, but when I replied "No, I was born like this" the smile usually would disappear and they would say: " I´m sorry". I think this story underlines the bigges challenge we as people afflicted with disabilities face today. Even though I was the same person, and the chruches were the same, their wiew of me would suddenly change, when they got to know that I was born with SB and had not just broken my foot.
Today I run my own company giving lectures on environmental issues, and I also run courses teaching people from organisations and interest groups how to get through to decisionmakers. Not least, however; I give lectures on how the care system and society around us should be more adapted to our individual needs and made more accessible for us. I live with my spouse and my cat in my own flat in Oslo. I spend my spare time to see friends, read, listen to music, go to movies, theater and concerts. Also I have traveled a lot, not least in south eastern parts of Africa. Today I have learned to ask for help, and I have even got my own wheel chair to cover distances longer than I am able to walk. I live a good life, with its ups and downs as other people.
Olga De Wit, The Netherlands|
|Olga de Wit|
I am Olga de Wit, a Dutch girl living in Amsterdam, The Netherlands. Twenty-four years of age. I enjoy sharing my life with my boyfriend, family and friends, finished my psychology degree at the University of Maastricht, and at this point in my life I’m wrestling, with a lot of fun, through my first year of medical study. As you can see, I’m just an ordinary girl. Still, I feel special as well.
I was born with spina bifida. Like most spina’s, I have my bad and good periods mostly depending on my health and environment. During my childhood I didn’t realize so much that I was ‘different’. Of course, I could not always participate in all activities, but had a great mother who made up for the moments that I wished I was ‘normal’ like all my other classmates, in doing other nice things with me. When I started to live on my own, when I was 19 years, the confrontation with my limitations became bigger. My mother wasn’t around anymore to ‘clean up’ after me, and arrange my appointment with doctors (e.g.). Finding out how to get the aid you need isn’t that simple because the health-system is not always helpful, clear, and takes it time. Still, I also found out that most people have a story certainly not less than my own, which makes you realize that life isn’t perfect. As I see it, it’s one big challenge.
Despite the fact that everybody has his problems, I still like to be around people with spina just because they understand and fill in the gaps without saying a word. This makes you feel so normal, and gives you the feeling of being part of a whole.