Scorn Not Her Complexity (Epilepsy, My Love!)

Foreword

I feel partially responsible for this book. On 2 January 2006, I started a blog on the Internet under the name nikosDemou. Several people discovered it on the very first day and left comments. Among those people were the authors of this book. They were facing a very serious problem with their child. They wrote about it. Soon, they decided to expound on their problem and started up their own blog called keimeno-paragrafos. Antigone signed the posts with the pen name Paragrafos, but they were written by both her and her husband. Later on, Kostas began to sign posts himself as Kapa. They received a huge number of visitors and an abundance of comments. The blog was online for more than three years and can still be accessed at http://parakeimena.blogspot.com/

I am trying to be brief and to give only the most important information. I know that Antigone and Kostas despise melodrama, but their story is dramatic in itself – tragic, to be precise. It is about two charming, talented people and their beautiful little daughter who suffers from the worst form of epilepsy.

In their pain, the parents tried to drive away the illness by writing. They began to give advice, to help other people suffering from the same thing and to encourage them to band together and join forces to have a greater presence. Alongside keimeno-paragrafos, Antigone and Kostas also started http://epilhpsia.blogspot.com/ which provided more general information.

The posts that make up this book were taken from the first blog. Amid the medical misadventures and anguish, there are personal memories from their childhood, the Turkish invasion of Cyprus in 1974, thoughts, images, even interludes of joy – though, regrettably, very few of those, a fact which, however, attests to Antigone and Kostas’s sensibility and narrative talent. While writing their own blogs, they also regularly contributed to mine (nikosDemou and then doncat), even winning a short story competition I had held.

By virtue of Antigone and Kostas’s talent, the reader will vividly experience their hard and relentless journey. It is not a happy tale, but at the end it leaves you with a mixed sense of wonder, compassion and pride for how high the strength and spirit of mankind can reach.

Nikos Demou

Writer and journalist

***

Epilepsy. Known in the olden days as ‘the sacred disease’. It is no wonder that since time immemorial, those suffering from this illness were thought possessed as well as God-sent. The sacred and the profane; good and evil; shame and pride; love and death: this explosive mix of duality was to determine, in the most dramatic way imaginable, the life of this book’s authors. The reason: Maria-Foteine, their little girl, who suffers from epilepsy.

There is refuge from death, a poet once said, ‘in the art we make before death comes." The authors of this book show us their own way, the path they chose to follow in the face of death. And it is the path of a very special, boundless love; a rebellious love, capable of transforming fault into a choice; a magical love that turns the ‘sacred disease’ into a more genuine existence and co-existence.

Illness, or as Thomas Mann described it, mankind’s magic mountain, has revealed here its hidden gifts. If living is an apprenticeship in dying then epilepsy, in the hands of the three authors of this book – Antigone, Kostas and Maria-Foteine – becomes an emblem of life. In a heartless era, where the survival of man has become a painful ordeal, this family of three talks to us about an undeservedly forgotten hope. Hope: this tiny, fragile, soft-spoken, solitary creature, capable of accomplishing great things and overturning the laws of nature.

This book offers invaluable contemplations on the transformation of pain and grief.

Foteine Tsalikoglou

Writer and Professor of Psychology at Panteion University, Athens

Preface

Our Own Extreme Epilepsy

Dear readers,

Before you begin reading about the lasting hardship our daughter has suffered because of her epilepsy, we would like to highlight the fact that as a rule epileptics (who make up approximately 1% of the global population – some fifty million people) can usually control their seizures with a simple pharmaceutical treatment – provided of course that a child’s guardians are able to arrange regular consultations with pediatric neurologists and that adult sufferers can frequently visit their neurologists.

Unfortunately, there is also a rare type of epilepsy, the intractable Severe Myoclonic Epilepsy in Infancy (SMEI), which afflicts one child in thirty thousand every year – approximately two hundred thousand children around the globe. For these children, the mortality rate is incredibly disheartening: one in five will never reach adolescence due to suffocation/aspiration of foreign objects, an accident, an extended epileptic seizure, a feverous infection, or because of sudden death.

Cyprus is not exempted from this merciless statistic of misfortune: At present, it is estimated that there are at least six children (under the age of twelve) suffering from this rare ‘Intractable SMEI’ and statistics show that at least one more case is discovered every other year.

Nevertheless, in our own family this unfortunate statistic has become even more grim as in 2008 our daughter was diagnosed by doctors in the Mayo Clinic with an exceptionally rare form of Severe Intractable Epilepsy, called Dravet’s Syndrome. According to Charlotte Dravet, the researcher who identified the ‘guilty’ gene a few years ago, only 445 cases of this syndrome had been recorded worldwide by 2003.

The few Cypriot children, including our own daughter, who suffer from severe intractable epilepsy can be saved and lead a dignified life, even if only because after every serious relapse that cannot be successfully dealt with in Cyprus, they are hospitalized abroad under the care of pediatric neurologists.

However, the cost of such an endeavor is prohibitive even for a well-to-do family. It was therefore necessary to apply to the Cypriot Ministry of Health’s Department of Patient Subsidies in a desperate attempt to find a way of covering the costs of hospitalization, of medication and laboratory tests abroad, a process that has recently become hopelessly complicated.

So that the state does not abandon any child suffering from intractable severe epilepsy to its fate, the Cypriot Association for the Support of People with Epilepsy is called into action.

In order to aid the Association fulfill its mission, we have decided to provide it with our moral and, to the extent possible,financial support by publishing Scorn not Her Complexity, available in print in the original Greek as a non-profit title from Parga Publications.

One last but very important point: With the exception of our supporters, the doctors, our daughter and her disease, the persons and situations featuring in this book have not, some to a lesser extent than others, been presented in their true form.

Antigone and Kostas

Acknowledgements

As a family, we are thankful to:

The unforgettable Head of the Pediatric Neurology Clinic at Makario Hospital,Goula Stylianidou, who passed away in 2008 at the age of 56. Goula stood by us not only as a medical professional, but also as a person: she phoned us every other day, visited us at home frequently, stayed up with us all night in intensive care a great many times, and always ensured that our child would have an accompanying doctor – usually herself – for our cross-Atlantic trips to and from the Mayo Clinic;

Our cousin, who is more like a brother to us, the pediatric surgeon at Makarios Hospital,Dr Andreas Neofytou. He accompanied us to the States – alternating with Goula Stylianidou – and, seven years ago, on what must have been one of the most soul-destroying mornings of his career, was urgently called to the hospital to operate on a baby in danger – our daughter, his beloved niece;

The distinguished pediatric neurologist of Mayo ClinicDr Jeffrey Buchhalterwho started our daughter on the Ketogenic Diet in May 2005, making our epileptic seizures vanish for two years. When he was later transferred to Phoenix, Arizona, he referred us to the equally respected doctor and exceptional human being,DrSuresh Kotagal, who has been methodically fighting the relapses of our epilepsy with effective persistence. But it is not only the inexhaustible scientific knowledge of Dr Suresh Kogatal that benefits us by tackling our little girl’s desperately painful relapses; it is also his serene, philosophical demeanor that emanates courage, hope, calm and a sense of duty;

The founder of the Charlie Foundation and acclaimed film director,Jim Abrahams. Jim has successfully raised awareness of the Ketogenic Diet, which was used to treat his son Charlie (www.charliefoundation.org), who suffered from undiagnosed intractable epilepsy. In his filmFirst Do No Harm,Abrahams had Meryl Streep play the mother of a child with intractable epilepsy. In June 2006, our beloved friend Jim gave us the rights toFirst Do No Harmfor Cyprus, in support of the Cyprus Association for People with Epilepsy;

The pediatric neurologist and reknown epilepsy specialist,Dr Stavros Hadjiloizos, a schoolmate and dear friend of our brother Andreas, a caring doctor to our daughter and a good friend. Having graduated from the Ioannina Medical School and having spent twelve years training in Pediatrics, Pediatric Neurology and Epileptology in the United States, Stavros returned to Nicosia in 2007 and founded, together with his colleague, Paola Nikolaidou, the Cyprus Pediatric Neurology Institute. Through hard work, Stavros quickly became the incarnation of hope for hundreds of Cypriot children with neurological problems. While the good doctor was full of life and creativity, he passed away suddenly, on a Christmas Eve, in 2010 at the age of 43, of a heart attack, leaving his parents, his sweet wife and their two babies not to mention all us parents with our ill children, inconsolable and orphaned. Faithful to the Hippocratic Oath even after death, his kidneys, his liver and his lungs gave life to four fellow human beings.

Farewell, beloved friend Stavros. May your family find the courage to bear your loss and may you rest in peace.

***

For the publication of this book, we would like to thank:

A beloved friend, wise teacher, who became the ‘father’ of our sensibility and rationalism, the writer Nikos Demou. Nikos was kind enough to write the foreword to our book, which is, to a certain extent, his child as well, since he has been inspiring and guiding us – particularly after 2006 – with great discretion and generosity;

Our invaluable friend, the Athenian Nasos Papapolitis, to whom belongs not only the idea to publish this book, but also a large part of our hearts;

The enthusiastic supporter and invaluable adviser of the draft edition, the immeasurably humanist and radically liberal author from Thessaloniki, Thanases Triarides, who has provided an afterword to our book with his own distinctive, thoughtful emotiveness;

The writer, Professor of Psychology, and our esteemed friend Foteine Tsalikoglou. After reading Scorn not Her Complexity, Foteine chose Christmas Day 2010 to send us, besides holiday wishes on behalf of herself and her partner, Constantinos Tsoukalas, a precious gift in the form of a short introductory comment to our book.

Ever since she was three years old, Maria-Foteine has loved to paint random color shapes. We have about 500 such watercolors on cardboard paintings of hers. The blue and red swan is hers. It was painted at random, two years ago.

Apart from Nikos Demou, Nasos Papapolites, Thanases Triarides and Foteine Tsalikoglou (of whom special mention is made on page 17), we were encouraged to write the posts that make up Scorn not Her Complexity by the hundreds of anonymous visitors who read our blog and the dozens of patients, who were kind enough to confide in us their own fears and anxieties. We thank them, one and all! But we would also like to thank certain friends and acquaintances, both old and new, who were eager to read the manuscript and offer support. Of these friends and acquaintances, the following live in Cyprus: Haris Tomazos, Arete Georgiou, Yorgos Trokkoudes, Elpida Louka-Michailidou, Sofia Makre, Elena Loizou, Nikos Angelides, Elene & Stella Venizelou, Foteine Fidogianne, Effie Kokkinou, Markella Sioula, Christina Iakovou, Niki Constantinou, Andrie Georgiou, Efrosyne Levente, Doros Kakkoules, Kika Olympiou, Jenny Ioannidou and Louiza Loizou; in Greece: Dr Evangelos Tsampalas, Hares Tzitzileres, Kyriakos Athanasiades, Athanasia Tsene, Irini Pierroutsakou, Lefteris Kariatoglou, Panagiota Manoli, Odysseas Lebesses, Zoe Economou, Spyros Koutroulis, Antigone Stavropoulou, Katerina Tseliou, Demitres Goutzoures and Costas Fylachtakes; in the rest of the EU & the USA: Phoivos & Carolyn Drymiotes, Panagiotes Alevantes, Crysoula & Dr Nicolas Tsirikos-Karapanos, Robert & Randa Mickelson-Banks, Chamaidi Belanger, Debra Siems, David Hebrink, Janet Olson and Rita Kreft who read the English edition of Scorn not Her Complexity thanks to translator Laura Bodger and writer/editor Μary Coran who resides in London.

Chapter 1: This Is Our Spring!

Wednesday, February 22 2006

The spring of 2003 was filled with utter hopelessness: March clawed at our souls and cold-hearted April set our despair in stone. We were still unaccustomed to pain. The Athenian pediatric neurologist looked at us uneasily: What can I say? I don’t know...

In the spring of 2004, our spirits were lifted for a short while. Then, misery once more.

By the time the winter of 2004-05 was upon us, our daughter was having ten, twenty, thirty, sometimes forty epileptic fits a day. One day we stopped counting: there had been more than a hundred. In London and Paris the experts threw up their hands in despair.

And then, in spring 2005, we left for the accursed United States, for heartless America. To ask those blood-thirsty Americans, those deceitful, money-grabbing, exploitative, conceited Americans for their help. To the experts with their state-of-the-art equipment and DOC (dogs on call) dogs – specially trained Labrador retrievers that visit and entertain sick children who love dogs. And outside every palatial room was a PC so we could keep in touch with everyone and everything concerning the our child and her condition. It was a paradise for sick children.

They didn’t look at us with narrowed eyes like those haughty French doctors and their xenophobic nurses. As if we hadn’t paid dearly for the privilege of consulting them! Nor did they look at us like the courteous and rather reserved British, who had nothing else to offer other than pointless politeness – and we had paid dearly for that too.

We had to resort to the damned United States to find not only the scientists of the twenty-second European century, but also a group of professionals who still believe in good, old fashioned Western solidarity. (Fight! they told us. Never give up!). And they saved our child.

That spring was all the summers of