Biography

About Marisoula’s life

What is Osteogenesis Imperfecta?

Marisoula was born with Osteogenesis Imperfecta, a rare condition where bones bend and break easily. Her first fracture occurred at the age of one and a half, just after she learned to walk, and the OI-diagnosis followed her second fracture at the age of two. Because she could not stand with bent bones, she underwent surgeries where rods were placed in her bones for straightening and support.

As her condition was so rare, not all doctors had the necessary experience. Fortunately there was Dr. Voutsinas at the (then newly established) Pediatric Orthopedic Department at KAT Hospital, who also cooperated with the Dutch doctors, as we traveled annually to the Netherlands for the summer holidays, while my husband (a ship captain) was away.

There, the VOI / ’Osteogenesis Imperfecta Patients Association’ provided us with practical advice, and when Marisoula outgrew her stroller, we purchased there her first wheelchair, with which she started first grade at the 7th Elementary School in Galatsi.

Curious about what happened before? Then read the Pre-History.

Going to school in a wheelchair

Marisoula was like a spectacle for the other children, as they had never seen a wheelchair before. The first days I would go to school during breaks, to assist Marisoula and to answer the children’s logical questions. “No, Marisoula didn’t fall from a balcony”, “Yes, she can play all games”, “No, she cannot walk”, “She has fragile bones that might break if you bump into her”, etc. Soon they realized Marisoula was not an ‘alien’ but a normal classmate.

Apart from school, Marisoula also attended the 1st Cultural Center for painting and Music School for piano lessons. All that to and fro was tiring for her, as it was up and down the sidewalks, that’s why she asked me if they could build ramps, like in the Netherlands. So, I wrote a letter to the Mayor, Mr. Vassilis Papadionysiou. There wasn’t an immediate response, but my letter from April 15, 1992, resulted in a meeting with the municipality’s architect, Ms. Angeliki Liakou, to point out the areas that needed ramps, and they were constructed within two months!

Leading a normal life

Often people approached us at school, at the cultural center, or on the street, curious about what it is like for a child to attend school in a wheelchair. They would know a child in their (immediate) environment with a handicap, but who was kept at home.

We always responded, “Why deprive a child of the contact and communication with their peers? The best thing is to help the child to lead a normal life, just like the other children.” For this reason, Marisoula also participated in the school-parades on the National Holiday of October 28 and March 25, so that everyone could see that ‘in a wheelchair you can go everywhere’.

With the help of Dr. H. Bartzokas from the ‘P & A Kyriakou’ Children’s Hospital and Mrs. G. Gyftodimou from the ‘Children’s Health Institute’, we tried to create an Association for Patients with Osteogenesis Imperfecta. Unfortunately there wasn’t much response, as the few known patients lived far from Athens. So I decided to translate all the information leaflets on Osteogenesis Imperfecta from the VOI / Dutch OI Association and the OIFE / ‘Osteogenesis Imperfecta Federation Europe’ and offer them to Dr. Stavros Voutsinas, who gave them to patients, and his colleagues during medical seminars. Later Dr. Theofilos Koupidis, from Veria, took over the communication with the OIFE.

An elevator at school

When the 7th Elementary School moved to a new building opposite the old one, Marisoula was asked to inspect the school, if all was accessible, before the contractor left. Indeed, a small ramp was needed (different from what the architect had planned, but not implemented by the contractor), and there was no elevator! As the classrooms were at the 1st and 2nd floor it was rather essential. I had to go to the School Building Organization (OSK) because, although an elevator was included in the plans, there was no cabin installed since “there are no students with disabilities in elementary schools.” When they learned that there was, in fact, a student with a disability, the elevator was installed within six weeks! The only issue was that they wanted it locked to prevent children from playing with it, so I had to unlock it at both levels, take Marisoula to her classroom, and then lock it again, which meant that she couldn’t play downstairs during breaks, but fortunately she had many friends who wanted to keep her company in the classroom.

At the 6th High School and the 4th Lyceum, the elevator didn’t work either, but there they always assigned Marisoula to a ground-floor classroom.

Participation in concerts

Between fractures and surgeries, there were periods when Marisoula could, with the help of orthopaedic boots and a walker, take steps and ride a tricycle. She also went swimming, first at the student flat on Patission Street and later at school- and sport-center Grava, the accessibility there was not great due to stairs, but the City of Athens couldn’t/wouldn’t help.

As she grew older, it became physically more difficult and tiring for her to do everything, after a difficult surgery, where both of her legs were in casts, we managed to get a special electric scooter, and Marisoula decided to save her energy for the things she loved most: music (piano and guitar) and design. In addition to exhibitions of the Galatsi Cultural Center and participation in the concerts of the Amadeus Music School, she took part in the European Youth Concert in 1995 and a concert in the Old Parliament building in 1999, playing the piano and guitar with her teacher, Ms. Becky Levi.

Support from teachers

In the second year of the 4th Lyceum, her teachers doubted whether she would succeed in the Pan-Hellenic exams and advised Marisoula to take a different path. At the Ministry of Education, she learned that the 2nd TEE (Technical High School) in Nea Filadelfia offered a course in Interior Architecture, and she enrolled there. It turned out to be the best choice for her, she gained self-confidence, as she was doing something she loved, and she made many good friends! When her father was home, he would drive her with the car to Nea Filadelfia, but when he was away, I would take her there (walking with the wheelchair). The distance was too far for the scooter, with which she couldn’t get into the classroom. The teachers had requested transportation with a driver (as provided by law by the prefecture), but there was no response. They then mentioned her case on a TV show, which had as result that the prefecture provided immediate assistance (transport by taxi). This gave Marisoula more freedom and independence. For teenagers aged 16-18, it’s normal to go out with friends for coffee-cinema-shopping-concerts, but Marisoula always needed someone to assist her. So we went often to the center of Athens (walking), but it isn’t the same when you are going with your mom… Once she had transportation, she could arrange for the driver to drop her off at her friends’, who would help her with the wheelchair going out to their favourite places, and she would return home later by taxi.

Together with her classmates, she participated in the International Drawing Exhibition in Lithuania and in the National Student Competitions, where in 2001 she won 2nd prize in Painting and in 2002 2nd prize for Construction and 3rd prize in Painting.

She graduated with a grade of ‘Very Good’ 16 and 1/12 (from 20) and with that she went to TEI Athina (Technical Educational Institute – University of Western Attica), to study Interior Architecture, Decoration & Design at the School of Graphic Arts & Artistic Studies (SGTKS).

Interior Architecture & Design

At TEI, Marisoula felt like a fish in water, she loved the courses, and working on group projects she made very good friends. But also here was transportation needed (when Dad was travelling, the journey took about an hour and a half; by foot to Ano Patissia, then the train to Attiki, the metro to Metaxourgio, and finally the bus to TEI), the prefecture did not provide transport because TEI is an independent institution. It took many visits to the Ministry of Education, where I consulted with the then Minister of Education, Mr. Petros Efthymiou, to pass a code by parliament, with which TEI could claim expenses (transport for handicapped students) at the State Treasury.

Accessibility at TEI also needed improvement, with low slope ramps, and one building lacked an elevator! SGTKS was the only school with an elevator, but it had a studio across the central corridor, accessible only by stairs. Strong fellow students could carry Marisoula in her wheelchair up the stairs, but many times she had to go up by herself, sitting, step by step, while someone carried her wheelchair. The building with the elevator had a door leading to the roof of the central corridor, which had access to the other building through a window. It was easy to make a door with a ramp there, so it would be accessible to everyone, the teachers had submitted the request without result, but now Marisoula made it happen!

Olympic Games in Athens

Accessibility improved everywhere with the 2004 Olympics and Paralympics, buses and trolleys “knelt” for easy access, all metro stations had elevators, stores cafe’s and pubs got ramps, even the Acropolis got an elevator.

Marisoula could now easily visit friends and go with her classmates to museums, shopping-malls, and concerts.

Inspiration for Galatsi

In October 2006, Marisoula began her practical internship at the Technical Department of the Municipality of Galatsi, with Ms. Angeliki Liakou as her mentor. She enjoyed her work there, and she got the inspiration for her graduation project: the redesign of Iniochos Square, a neighbourhood square she passed almost daily, which had been somewhat neglected due to disputes between the heirs of Veikos (who wanted a petrol-station) and the municipality of Galatsi (who wanted a park), the purchase of the plot by the municipality ended the quarrel.

Together with her friend Anastasia, she started research on the history of the plot, with help from the local newspaper ‘Echo of Galatsi’, they also did a survey asking the residents what they wanted, and then lots of designs sketches and drawings.

A perfect graduation project

After her practical internship the mayor, Mr. Tsiros, advised her to apply for an 18-month part-time contract. This made her a working woman, with time to work on her graduation project (TEI) and diploma (piano). She also took driving lessons (car with hand-steering) and passed the driving test with flying colours on her first try.

On May 19, 2008, Marisoula presented her graduation project, which was graded a perfect 10=excellent! On June 18 the graduation ceremony followed, with taking the oath and getting her diploma, and on June 20, she performed her final piano exam, earning another ‘excellent’ grade!

Her next achievement was buying her own customized car, Marisoula was happy and proud driving herself to work and going on tours with friends.

The Dutch Association in Greece

She completed her studies with a diploma in 3D Studio MAX, Photoshop, and web design, which were very useful when she took on the task of updating and maintaining the website for the Dutch Association in Greece. She also became editor for the association’s monthly magazine and gave a course ‘Internet Basics for Beginners’ for members. Marisoula had always said she didn’t want to teach, but it came naturally to her; helping colleagues with the new AutoCAD program, a friend with 3D Studio MAX, and another friend’s husband wanted to learn piano (necessary for his trumpet degree), and with her spontaneous enthusiasm and kind ways she was very successful.

Marisoula experienced pain in her right wrist, she thought it was overstrained by playing the piano, but when the pain worsened even without daily practice, she asked advice from the OI-team (doctors specialized in Osteogenesis Imperfecta) in Zwolle. When I suggested it might be Rheumatoid Arthritis, they said: “that would be like winning the jackpot twice”, but indeed she was that “lucky”! At the Rheumatology Clinic of KAT Hospital Marisoula got the right medication and so she was able to continue all her activities without problems.

Koumbara and crisis

She went to the 1st Cultural Center Galatsi for the course ‘silver forging’ as she wanted to make ‘stefana’/wedding wreaths for her sister. Eleni had gone to the Netherlands to study, there she met the man of her life, Kristiaan, they decided to marry in 2010, on the most romantic island in Greece, Sifnos, and they asked Marisoula to be their koumbara/wedding witness. In Greece a ‘koumbara’ is more than just a witness or maid of honour, she is the spiritual support for the couple during their married life. The following year, she made more wedding wreaths for her friend and colleague, Anastasia, who with her Kostas also wanted Marisoula as their koumbara. And for the third time, in 2014, she was koumbara for her friend Dimitra who married her Alkis.

Meanwhile, the financial crisis hit and when Marisoula’s contract with the Technical Department of the Municipality of Galatsi ended, they informed her that it wouldn’t be renewed, because she was eligible for disability benefits, and others were more in need of the job. She tried to refuse the benefits, but when that wasn’t possible she began making plans for new ventures. One idea was to start a webshop under the name “MADesign”, from her name Maria-Anastasia, but it worked also for Marisoula & Anastasia, when her friend wanted to participate, eventually it didn’t go through for various reasons.

Moving to the Netherlands

Marisoula encountered a third “jackpot” — a mole turned out to be melanoma, but it was treated correctly, and she was ready for new horizons and adventures. Eleni suggested her sister to come to the Netherlands, where there would be different opportunities to explore. For a start she could stay with Eleni in Deventer, and if she liked it make further plans.

It was a difficult decision, in Greece she had a large circle of good friends and was always the first to organize an outing; going to a concert, dinner or trip. In the Netherlands, life was different, but as she knew the language and customs, had her sister and other relatives there, her friends advised her to give it a try – especially since so many people had left Greece out of necessity, without the advantages she had.

A new life in Deventer

In the summer of 2014, Marisoula moved to the Netherlands, until she found a regular job, she registered as a volunteer and started working at a library in a primary school.

She also enrolled in a Cultural Center for engraving and glass-fusion classes, something new to her. Because Holland / Netherlands is flat, getting around was easy for her, not just in Deventer but also going by train to other cities, Marisoula enjoyed this freedom that she didn’t have in Greece, where she always needed assistance with her wheelchair. Marisoula became a permanent resident of Deventer, she stopped her Greek benefits, and as she also had Dutch citizenship the adjustment was easier than expected. She continued her volunteer work but couldn’t find a regular job, so she helped Eleni with babysitting and remained editor for the Dutch Association’s magazine in Greece, working remote by email and via internet keeping in touch with all her friends in Greece.

Her own apartment

During our winter holidays, we talked about looking for an apartment for Marisoula, it had always been her dream to live somewhere alone and independent. We found a beautiful flat just 500 meters from Eleni’s home – perfect for her! Everything was arranged, for her to move in September, she would spend the summer in Greece and then bring her car to the Netherlands.

But then, something appeared in her eye, which turned out to be a metastasis from the melanoma, and it wasn’t the only one. I immediately went to be by her side, to help after the surgery and with her laser treatments. Marisoula remained, as always, positive, “I won’t think about what I can’t do, but I do what I can,” she said. So she came for her summer holiday to Athens of the ‘aganaktismenie’/irritated (peoples-protests), participated in the referendum, experienced the long ATM queues, visited hospitals and doctors, met with friends who had become parents, went to concerts and on excursions. Meanwhile, brother in law Kristiaan and a friend came to Athens to drive her car to Deventer. When Marisoula returned to the Netherlands, she was full of energy to settle into her new home, her third nephew was born, and everything was perfect!

Working online

Marisoula had stepped down as editor of the Dutch Association’s magazine when she got problems with her eye, but she didn’t want to be without work, so she was very happy when her friend Giannis asked her to cooperate with website www.newsfeast.gr. Along with her volunteer work and babysitting, she now also had to cook and often sent pictures of her creations.

Greek holidays

Marisoula came to Greece and Galatsi to celebrate her 33rd birthday, while Kristiaan installed new floors in her apartment, an opportunity to meet up with her friends. However, due to the side effects of her various medications, she ended up in the hospital with far too low levels of white blood cells. Fortunately, she received immediate care from the oncologist, Dr. E. Gkogka, and after a successful treatment, she returned to the Netherlands for the holidays. The year 2016 started on a pleasant note, with more vacations in Athens (as her flat got wallpapered), and our holiday in Deventer. Eleni also arranged to fulfil another dream wish of Marisoula: a trip together to New York!

That summer, Marisoula would come to Athens for a month, but when tests revealed more metastases from the melanoma, she changed her plans; within two weeks she managed to see all her friends, went out for dinners, concerts, and even made a trip to Tinos.

No Cure

Two days after returning to the Netherlands, she suffered a seizure while at the hospital for her immunotherapy, during which she fractured her femur, surgery was possible for the fracture, but for the underlying cause, multiple brain tumours, there was no treatment or cure.

Only once Marisoula confided her final wishes to her sister. She never lost her positive spirit saying: “If there’s no cure, then I prefer to go home.” However, before we could arrange practical help there, she suffered more seizures and fell into a coma for two days, only to be awakened by the voice of her little nephew. Friends and family visited her, and Marisoula was again, as always, the heart of the company, she got the doctor to take off his white coat and the nurses wondering where the party was.

Marisoula’s farewell

On Monday, August 8, Marisoula passed away peacefully. The cremation was held on Friday, August 12, just as she wanted: a farewell party with family and friends, music, photos, Mavrodafni wine, rakomelo liqueur, and the breaking / smashing of plates!

In Galatsi, a memorial service was held on Sunday, August 28, at the Church of Agia Eirini (where she had been baptized). All her friends were there, classmates, teachers, colleagues, members of the Dutch Association, neighbours and relatives, everyone was there to remember Marisoula, who had touched their souls and hearts with her love for life and positive spirit.

Marisoula’s legacy

She left a great void, “leaving” us too soon, but she managed to do so much in her life, and at the same time taught us to enjoy every day as it comes, so we continue living as she would have wanted.

Her wheelchair, special walking-chairs and scooter were donated to PASIPKA / ’National Association of Paraplegics and Mobility-Impaired People’, with whom we had been in contact since 2002 (concerning transport of disabled students to TEI).

Her books on solfège, music-history and other music theory I gave to the Amadeus Music School and her university textbooks went to TEI.

But the model of her graduation project (Iniochos Park) had to remain in Galatsi and stands now, along with the complete study and a stained-glass piece, at the office of the Technical Department of the Municipality of Galatsi, in the hope that one day it will be realized.

Positive Inspiration

Marisoula was a sweet and charismatic girl, but also a brave strong and dynamic woman, who inspired, and had the ability to reconcile and bringing together people from different walks of life. She never showed her pain, as she didn’t want anyone to worry, she always said: “complaining and worrying is a waste of time and energy”.

Despite the many daily practical challenges, she was always cheerful with a smile and a positive attitude. She chose to do “every day something nice”, and with her perseverance and strong will she managed to achieve all her goals and dreams.

Marisoula was an example of spirit, and I hope her memory continues to inspire people for generations to come.

– Marie-Claire / Klairy Katarachia Bergé, mother of Marisoula