28th February 2013 — Vera
Interview with Erika Bartos about her special book
„ Charming illustrations and description of a tough journey from the recognition of the illness to recovery told in children’s language are absolutely professional, but at the same time encouraging and comforting, providing seriously ill children with great help and support. They might get answers to many questions, even to those they often too shy to ask. – said Professor Emeritus dr. Dezső Schuler paediatric oncologist, Széchenyi Award, Chairman of the Guardians Foundation on the book of Erika Bartos entitled Bravery Test. The book is not available in bookstores and I wish that no one will ever need it, but everyone should read it at least once in order to find out what is true bravery.
- Erika, how has this book been created? The Guardians Foundation contacted you or you felt the need to help in some way or form?
- The Tűzoltó Street Children’s Hospital Guardians Foundation [Őrzők Alapítvány] contacted me at the end of 2011 and asked me to illustrate a storybook for children suffering from cancer and leukaemia. The enquiring letter was written by a mother called Erika Borszéki, who travelled through this tough journey with her child. She wrote the framework story; she drafted the four main characters of the book (based on real persons) and enriched the long, jargon-packed medical script on numerous examinations and painful interventions with child-spirited and kind-hearted details. This is what she wrote to me at that time:
“ With my little girl I have experienced the secret of Anna, Pete and Greg storybooks: I saw her eyes sprinkling with joy when I read her the book, as it was all about her and she could imagine every moment of the story. At this point I realised how useful it would be to have a book for children suffering from cancer or leukaemia, and if they could read a book, which is about them. I firmly believe that with the magic of stories we could help a lot.”
- Could you introduce the book?
- There are four main characters in the book; we follow their path from the diagnosis of their illness to full recovery. The book describes the most common types of cancer: brain tumour, stomach cancer, leukaemia and bone cancer. The medical parts were written by the paediatric oncologists of the Tűzoltó Street Children’s Hospital, furthermore several excellent doctors and professors took part at the compiling of the text, alongside paediatric psychologists and nurses. I also wrote a few chapters, where I thought it was necessary to loosen up the script by adding a few airy-fairy parts.
- Knowing your other charity-related works, I am sure that you didn’t’ doubt the necessity of such publication, but surely you also had an internal motive too.
- This is not the first such type of book I have done. Two years ago I have already said yes to a similar enquiry. At that time the Gottsegen György Institute of Cardiology asked me to illustrate a publication for children suffering from heart diseases. There was also a similar, noble intention behind the initiative, namely resolving the fear from the unknown and by this promoting the recovery process. In the case of young children a storybook is an obvious aid, as with drawings we can say hundred times more than with words. Especially when we are talking about such difficult topic.
Such storybooks are common abroad, it is also great to have similar books in Hungary, so I was pleased to say yes for the illustration task. Caring for children suffering from serious illnesses or challenged children has always been part of my life; earlier I have also completed a hospital voluntary training course. I regularly organise fairy-tale telling events for various challenged communities. During these events I have the chance to experience again the magical power of fairy-tales. I meet many exemplary families, who do anything for their child undertaking any sacrifice.
- Who and how helped your work?
- Besides the physicians and nurses I have also met Szabolcs Kulai, a voluntary bartender, who for the last five years every Monday has been bringing a huge basket of fresh fruits to the bone-marrow transplant ward and has been preparing freshly squeezed cocktails for the hospitalised children based on their individual choice. He decorates the cocktails with straws and umbrellas, in order to ensure that the children have a better time in the hospital. His everyday job is a bartender. Nothing else motivates him but to help the children.
I have also met play therapist Katalin Mina, who for the last fifteen years has been organising handicraft activities for children suffering from cancer. She is helping their recovery with the power of play and making the time go faster. They are amazing people and I have gained courage from their decency.
- How does the process of writing this book looked like? Have you spent several days in the hospital with the children; have you been talking to the doctors?
- Yes, I have talked to numerous little patients, families, parents and grandparents. But I had the most discussions with Péter Hauser, Vice-Chairman of the Guardians Foundation, paediatric oncologist of the Tűzoltó Street Children’s Hospital. He guided me through most of the treatment venues. A child, who is suffering from cancer is treated at least 5 to 6 different venues/locations in Budapest. I have received information from physicians of all special areas; I have viewed the interventions in the Szent László Hospital, at the Kékgolyó Street radiotherapy centre, in the Heim Pál Hospital and of course in the Tűzoltó Street Hospital. I had to go back to most of the places on many occasions in order to fully understand the processes and by that time I was able to draw them. I could ask anything and I got answers to all my questions. Sometimes I didn’t know what to ask, but I got help in all situations; paediatric psychologists and nurses supported me, who are doing invaluable work each and every day. I am very good friends with the initiator mother since the beginning, she helped me with respect to all topics, for example we have done a featured chapter for the healthy siblings who are staying home away from their ill brother or sister. I have contacted her on many occasions in relation to this topic.
- How and who can get hold of the book? Why will it not be sold in bookstores? My 12 and 16 years old children read the book and they had many questions. Don’t you think that it would be a good idea to show the way somehow for healthy children too?
- This was very similar in the case of the publication entitled I am waiting for cardiac catheterisation. It was only available for the affected people, but they were getting it free of charge. This is the decision of the Clinic and Foundation, which I would like not to interfere with, but I agree with it.
- What was the most difficult and happiest moment for you and which is your most memorable drawing?
- There were many. We have been working on the book for one year; I have prepared over one hundred A3-sized freeforms. I would like highlight three drawings:
1. The biggest challenge for me in terms of medical aspect was the drawing entitled APHAERESIS. Doctor Rásonyi (haematologist, collects stem cells from children suffering from cancer) explained the procedure to me on many occasions, but this was completely unknown to me so I spent weeks to understand how this machine works. I also struggled with the accurate illustration of the devices located within the operating theatre.
2. The radiotherapy treatment centre. This was the place where I staggered for the first time and I fully felt what these little children are going through during their treatments. The smiling cheerfulness of Doctor Lövey (Kékgolyó Street, in charge of radiotherapy treatments) helped a lot. I have been working on this drawing for a long time and this was the first time when my children saw me crying at home.
3. My all time favourite illustration is called Aplasia. This picture is about a period when the patient spends considerable time in a tiny, sterilised room. We are talking about a long time, many months, but luckily the mum can stay with the child. On this picture they are playing a dream game. They are laid next to each other and they make imaginary programmes. This scene is the most beautiful part of the book; already after first reading the script I decided to make this drawing right after the cover picture. This picture tells everything, why this book has been written: the love of a mother can do anything. This script was written by the initiator mum, Erika Borszéki. Her maternal moral courage can be a strengthening example for everyone.
- This is a very honest book: objective, but gives a positive view on the illness, the worst possibility is not even mentioned in the book. What do you think about this?
- We had discussion about this topic on many occasions with the physician-authors of the book. In this area the work of the Hospice Foundations, the values represented by the hospice services, such as unconditional acceptance, trust, care and looking after are priceless. I am very pleased to meet in person the Chairman of the Hospice Foundation.
But the goal of the Guardians Foundation was to provide help with this publication. The physicians of course discuss everything - with considerate honesty- with the parents, if required even the worst scenario. But this book was written to provide families being in a difficult situation with encouragement and comfort, to make them stronger and to radiate positive emotions.
- What personal experience have you gathered during the making of this book?
- I frequently read the website of the Hungarian Maltese Charity Service. I read a line from Father Imre Kozma Imre, which is stuck in my head: „When we are in real big trouble, human beings are capable of doing a lot more.”
I tried to make sure that this book gives a grip to the little ill patients. I have tried to hide as many real details on the drawings as possible; the patterns of the curtains and tiles and the furniture are all true to facts, because the recognition calms down the little ones. The doctors and nurses also look the same in real as they are illustrated on the drawings.
- What kind of professional/personal feedback did you get about the book?
- We have received more positive feedback from the affected parties, children, adults, parents and family members than we hoped for. This is the most important, as the book is prepared for them. But the acknowledgment letter received from the wife of the President of the State was also very honouring alongside the congratulation letters received from the medical profession. We were very pleased that the book was awarded the Astellas special award at the Physician of the Year competition. We would also like to say thank you to several newspapers, magazines, televisions and radio for announcing the publication of the book entitled Bravery Test. Among others Duna Television (Kultikon), several programmes broadcasted by the Kossuth Radio and the magazine of the Office of Public Administration and Justice reported the arrival of the book.
- I am sure you have plans for the future with respect to this special field…
Yes. We are planning a new medical book in the near future also upon request of the Guardians Foundation. I sincerely respect their work, their high professional expertise, limitless empathy, humanity and readiness to help. I am pleased to work with them again. But as always time is the weakest link. Nowadays I am working on many new books and I also got an architectural job underway.
Pagony Publishing House congratulates to Erika on the award!
Another recommendation about the book:
Prof. Dr. Harkányi Zoltán, Head of Department, Head Physician Heim Pál Children’s Hospital
The “Bravery Test” is a special, heart-smothering “storybook. The aim of the work was to tell children suffering from cancer, leukaemia what will happen to them during the tests and treatments. The enterprise is unique as “storybooks” with such goal have not been written so far. I consider this excellent book of Erika Bartos as an extremely precious and important work. In a staggering and shocking situation, where the family and children are at the time of the recognition of the illness, such informative publications may help an awful lot; it might resolve some of the anxiety related to the illness and helps to accept the treatments.