Nakazawa - The last best cure : my quest to awaken the healing parts of my brain and get back my body, my joy, and my life

The Last Best Cure

The Last Best Cure

My Quest to Awaken the
Healing Parts of My Brain
and Get Back My Body,
My Joy, and My Life

Donna Jackson Nakazawa

HUDSON STREET PRESS

Published by Penguin Group

Penguin Group (USA) Inc., 375 Hudson Street, New York, New York 10014, USA Penguin Group (Canada), 90 Eglinton Avenue East, Suite 700, Toronto, Ontario M4P 2Y3, Canada (a division of Pearson Penguin Canada Inc.) Penguin Books Ltd, 80 Strand, London WC2R 0RL, England Penguin Ireland, 25 St Stephens Green, Dublin 2, Ireland (a division of Penguin Books Ltd) Penguin Group (Australia), 707 Collins Street, Melbourne, Victoria 3008, Australia (a division of Pearson Australia Group Pty Ltd) Penguin Books India Pvt Ltd, 11 Community Centre, Panchsheel Park, New Delhi 110 017, India Penguin Group (NZ), 67 Apollo Drive, Rosedale, Auckland 0632, New Zealand (a division of Pearson New Zealand Ltd) Penguin Books, Rosebank Office Park, 181 Jan Smuts Avenue, Parktown North 2193, South Africa Penguin China, B7 Jaiming Center, 27 East Third Ring Road North, Chaoyang District, Beijing 100020, China

Penguin Books Ltd., Registered Offices: 80 Strand, London WC2R 0RL, England

First published by Hudson Street Press, a member of Penguin Group (USA) Inc.

Copyright Donna Jackson Nakazawa, 2013

All rights reserved

REGISTERED TRADEMARKMARCA REGISTRADA

LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

Nakazawa, Donna Jackson.

The last best cure : my quest to awaken the healing parts of my brainand get back my body, my joy, and my life / Donna Jackson Nakazawa.

p. cm.

Includes bibliographical references and index.

ISBN 978-1-101-60990-3

1. Nakazawa, Donna JacksonHealth. 2. Autoimmune diseasesPatientsUnited StatesBiography. 3. Autoimmune diseasesAlternative treatment. 4. Autoimmune diseasesPsychosomatic aspects. 5. Mind and body therapies. I. Title.

RC600.N36 2013

616.97'80092dc23

[B] 2012018972

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For my father

Contents

Introduction

T his book began with my own sudden lockdown into the world of the chronically ill a little more than a decade ago. One day in 2001 I was pulling my daughter in a red wagon to the neighborhood pool to swim my evening mile in the lap lane. The next day I was paralyzed, unable to use my arms or legs, in Johns Hopkins Hospital with Guillain-Barr syndrome (GBS), a disease similar to multiple sclerosis but with more sudden onset and a wider array of possible outcomes.

I slowly regained my ability to walk, drive, and tie my childrens shoes only to fall paralyzed with GBS again in 2005. The second recovery was harder, more tenuous. Although with miracle drugs and half a year of grueling physical therapy I could get down the steps and to my mailbox again, I still dealt with the neurological fallout of having had GBS twicenumb feet and hands, muscle spasms, poor reflexes, and a flu-like lethargy that no amount of sleep could cure.

Over the years other diagnoses unrelated to GBS had also thickened my chart: thyroiditis, more nerve damage, a clotting disorder, low red and white blood cell counts, bowel problems, slipped disks, and fevers of unknown origin. Every few months Id end up back in crisis mode.

My team of specialistssome of the best on the planetpulled miracles out of thin air for me time and again. A pacemaker made my heart tick, and a small, white pill kicked my thyroid into action each morning. Infusions of other peoples healthy immune fighter proteins, or antibodiespooled from a thousand donors in a product known as immunoglobulinreplaced my faulty ones and kept them from turning against me.

The pattern was familiar: I would recover enough to drive, cook dinner, type stories on my computer again. And for that I felt lucky. But in the span of a decade Id gone from being a healthy working mom who could swim sixty laps and stay up until two a.m. decorating a toddlers birthday cake to being a revolving-door hospital patientperpetually worried, exhausted, and often in pain.

Above everything, I longed for a normal, ordinary life: to play hide and seek or jump in the ocean waves with my kids again, to go for a brisk morning swim with my husband.

My team of specialists had pulled off miracle after miracle to keep me alive, but there was one cure they couldnt offer me: they couldnt give me back my capacity for joy. I felt robbed of joy.

And there was no Rx for that.

Something had been taken from me, and I wanted it back.

* * *

M EANWHILE, THE MOMENTS of everyday life that mattered most were spinning past. Life seemed to be increasing its speed while my own energy sputtered out. My best years with my children were almost behind me. My son was already in high school, my daughter nearly a teen. Soon, they would be gone. These were supposed to be my most productive and creative work years. And yet I was too tired and often in too much pain to enjoy, keep up with it all, drink it in. I was stuck not only in my body, I felt stuck in place, held back from the full life Id always thought Id create for myself, for my family. It was starting to be too late to hope Id ever have more than a half-life. A maybe life.

* * *

T HIS BOOK WAS born out of that personal frustration. As a science journalist I did what I often do: searched for research trends that might give me insight as to how to solve the puzzle of my own life. For years, Id been intrigued by the growing number of studies examining how our brains mental activity impacts our biology and well-being. But little of the science seemed geared to those facing chronic pain, discomfort, or illness.