The Thing About Jed

By Nicola Baker

The Thing About Jed is the story of extremes, from a diagnosis of a rare disease, to the highs of meeting one of Hollywood's favourite characters, and then to the crashing lows of losing a friend in the most tragic circumstances. The story tells of how one family make daily choi

• Language: English
• Publisher: Bowerbird Publishing
• Release date: May 1, 2023
• ISBN: 9780645232974

Nicola Baker

Growing up, Nicola spent hours with her nose stuck in a book or filling notebooks with stories and sketches. After a successful career as a physiotherapist and raising two children she’s now come full circle and is writing again. Nicola lives on a smallholding in the Chiltern Hills with her husband and two children. When she’s not mucking out chickens or feeding the sheep you’ll find her writing adventure stories for children.

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Copyright @ 2023 Nicola Baker

All rights reserved. No part of this book may be reproduced or transmitted by any person or entity in any form or by any means, electronic or mechanical, including photocopying, recording, scanning or by and information shortage and retrieval system, without prior permission in writing from the publisher. The moral right of the author has been asserted.

ISBN 978-0-6452329-6-7 (print)

ISBN 978-0-6452329-7-4 (digital)

The Thing About Jed

Nicola Baker

First paperback edition: 2023

Edited by: Crystal Leonardi

Cover Design by: Freya Horn, Designer in Your Pocket

Cover Photograph by: Rosana Kersh

Interior Design by: Freya Horn, Designer in Your Pocket

Bowerbird Publishing

Julatten, Queensland, Australia www.crystalleonardi.com

DEDICATION

To Nicole, sitting on my shoulder every day and encouraging me to do what you couldn’t.

To Ollie, you have left a mark in our lives, you will never be forgotten.

Joseph. Forever.

FOREWORD

The life of a neurosurgeon is a wonderful blend of science, technical challenge, humanity, and, hopefully, humility. There would be few responsibilities in life as deeply meaningful as being entrusted with the care of a patient with a serious brain disease. Although every patient is important, it is not possible for any doctor to remember all their patients. But for every doctor, some patients are special; Jed Baker is special for me.

After completing neurosurgery training in Australia, I spent two years in the United States honing my skills in treating diseases of brain blood vessels. As a trainee in Australia I had been taught that there was no effective treatment for moyamoya disease, but while working at Stanford University I learned that surgery is very effective, especially if performed early in the disease process. I came back to Australia ready to take on the challenge!

I had already treated many moyamoya patients by the time I saw Jed, but he was special. Not only physically cute, he had an endearing personality that charmed the whole team. When I looked at him under anaesthetic as I prepared for his first surgery, my heart truly skipped a beat: he had a striking resemblance to my own son and I remember standing silent for a long time contemplating the reality that this disease could affect anyone.

In the many years since then, I have been privileged to remain Jed’s neurosurgeon and for my relationship with Nicola and Peter to evolve into friendship. Any reader of The Thing About Jed will be struck by Nicola’s strength and compassion. I am in awe of her energy and her ability to make a real difference. Establishing Moyamoya Australia will benefit many hundreds of patients directly, but also raise awareness of the disease amongst the medical community so that it can be diagnosed and treated more quickly.

As a teacher of the next generation of neurosurgeons, it is easy to focus on the science and technical challenges. For my own trainees, I try to also cover the humanity and humility that I believe are essential. These are difficult concepts to teach, and I have a short list of books that I encourage my trainees to read to deepen their understanding of the impacts of neurological disorders on patients and their families, and indeed the meaning of life. ¹, ², ³, ⁴.  The Thing About Jed has been added to my list, not only for these qualities, but also for an insight into the deficiencies of our current medical system and the profound impact that every single interaction with a patient and their family can have.

The Thing About Jed is a touching journey through the joys and sorrows of life, and will definitely leave the reader with an appreciation of the positive influence that Jed has on many people’s lives. Of course, there is much more to Jed than can be revealed in a book, including that he is a genuinely talented artist!

Marcus Stoodley PhD,FRACS

Professor of Neurosurgery

Macquarie University

INTRODUCTION

Jed was born perfect.  He had all of his fingers and toes, and a little button nose. He smelled divine, he had shown all the signs of being a healthy baby boy, and Peter and I had all the dreams and hopes of new parents.  We wanted to see him thrive, achieve, and be happy.  We didn’t realize, however, that there was an underlying issue for Jed, something insidious, silent, and deadly. What we also didn’t know was that it would change the direction of our lives forever.

Today, Jed is