I try to remind myself, too, that this isn’t the first time in my life I’ve had to start over. I had to start over as a pianist at the conservatory when my teacher had me focusing on playing just one note, relearning technique and starting at the beginning in a way that changed everything. I had to start over after being sick in college with Mystery Disease, learning how to live with pain, and then how to live beyond it. I had to start over after my time as a pianist was done, when I traded conservatory life and the study of music for working full time as an editor. I had to start over when I became a mother and my world shifted into the darkness of postpartum depression and the work of finding my way back. I had to start over when I stopped my full-time editorial job and instead took on full-time mothering and freelancing and book-writing. I had to start over after Nate’s accident, which unmoored me and left me groundless. So this isn’t the first time I’ve had to start over, not the first time I’ve had to engage in the process of rebuilding myself. I have had a million second acts, each one evolving out of complicated periods of pain and worry and vulnerability and acknowledgement that I didn’t know exactly what to do next, and each one of them bringing me to a new, deeper understanding, of realizing that I never feel more like myself than I do when I’m in the midst of learning what I need to do and where I need to go by doing it, by going there. This spinal CSF leak, which turned into this Year Zero of recovery, which is now turning into the unknowable landscape of Year One as Post-Leak Me, has felt like something new, like something unfathomable, like something that separated me from myself. And yet I see now that Post-Leak Me is as much Me as Leak Me, and New Mom Me, and Freelance Me, and Nate’s Accident Me, and Music School Me, and Sick Me.
This particular Year One is new, this is true. I haven’t lived through this kind of experience yet. I don’t know what the contours of this year will be, I don’t know how my life will be, I don’t know the shape it will take. I don’t know what it’s like to be healed from this brain injury, to be a single parent to my kids, to fully move on—not just yet. But I do know what it’s like to be lost, to be at a loss. I do know what it’s like to surrender to whatever comes next. I do know what it’s like to start somewhere and get to the other side.
There is more to do, and I have further to go. I still don’t know why this leak happened, if it was an accident caused by selfishness or chance or a strange quirk of my biology or by nothing at all; I don’t know if it will happen again. I don’t know when I’ll fully be healed, if the patched place on my dura will continue to hold, if I’ll need another one, if I’ll ever be 100 percent cured. But I know that although I’m not all better, I’m better than I was a year ago.
As of today, that year is up. And incredibly, I’m finding myself on the other side of what turned out to be the 100 percent absolute best-case scenario. Realizing that it’s safe to be right here where I am, slowly moving through time, continuing to recover. Realizing that I’m finally past the worst moments of everything so far and that I’m okay. Realizing that I’m still here, I’m still me. Torn, maybe; but not broken.
I can hardly believe my luck.
Resources
FOR TREATMENT
Cedars-Sinai CSF Leak Program, Cedars-Sinai Medical Center
The CSF Leak Program at the Los Angeles-based Cedars-Sinai Department of Neurosurgery provides highly specialized care to patients struggling with cerebrospinal fluid leak.
https://www.cedars-sinai.edu/Patients/Programs-and-Services/Neurosurgery/Centers-and-Programs/Cerebrospinal-Fluid-Leak/
Duke Radiology, Duke University School of Medicine, Spinal CSF Leaks
The team of interventional radiologists at the Spinal CSF Leak program at Duke University in North Carolina has revolutionized the way CSF leaks are treated.
https://radiology.duke.edu/patient-care/specialized-services /spinal-csf-leaks-2/
FOR INFORMATION AND SUPPORT
Spinal CSF Leak Foundation
A nonprofit health advocacy foundation dedicated to reducing the suffering of those with CSF leaks through education of the general public and health professionals; information and support of patients and caregivers; and facilitation of research.
http://spinalcsfleak.org/
CSF Leak Association
U.K.-based Scottish charitable organization working to support understanding of CSF leaks.
https://www.csfleak.info/
FOR ONLINE SUPPORT
Inspire Spinal CSF Leak Support Group and Discussion Community
Public support group.
https://www.inspire.com/groups/spinal-csf-leak/
CSF LEAKS (Cerebrospinal Fluid Leak) & Intracranial Hypotension
Public-facing page for a private Facebook group.
https://www.facebook.com/groups/31002608753/about/
FOR IMMEDIATE CRISIS SUPPORT
National Suicide Lifeline
Free, 24/7 phone support
1-800-273-8255
https://suicidepreventionlifeline.org/
Crisis Text Line
Free, 24/7, text-based chat with crisis counselors
https://www.crisistextline.org/
Further Reading and Listening
Some of the books I read and podcasts I listened to while recovering and thinking about illness, narrative, and the brain pushed to its extremes.
BOOKS
Memoir:
Limbo: A Memoir by A. Manette Ansay
Brain on Fire: My Month of Madness by Susannah Cahalan
Wave by Sonali Deraniyagala
Tell Me Everything You Don’t Remember: The Stroke That Changed My Life by Christine Hyung-Oak Lee
The Two Kinds of Decay: A Memoir by Sarah Manguso
Through the Shadowlands: A Science Writer’s Odyssey Into an Illness Science Doesn’t Understand by Julie Rehmeyer
Adventure:
Into the Silence: The Great War, Mallory, and the Conquest of Everest by Wade Davis
Terra Incognita: Travels in Antarctica by Sara Wheeler
Science and philosophy:
When Things Fall Apart: Heart Advice for Difficult Times by Pema Chodron
From Bacteria to Bach and Back: The Evolution of Minds by Daniel C. Dennett
The Brain that Changes Itself: Stories of Personal Triumph From the Frontiers of Brain Science by Norman Doidge, M.D.
The Brain’s Way of Healing: Remarkable Discoveries and Recoveries From the Frontiers of Neuroplasticity by Norman Doidge, M.D.
The Trauma of Everyday Life by Mark Epstein, M.D.
Soft-Wired: How the New Science of Brain Plasticity Can Change Your Life by Michael Merzenich, Ph.D.
PODCASTS
Podcasts about brains, science, and philosophy:
10% Happier with Dan Harris
Brain Matters
Brain Science with Ginger Campbell, M.D.
Hi-Phi Nation with Dr. Barry Lam
Hidden Brain
Horizon Line
Outside Podcast
The Story Collider
Podcasts about comedy, history, language, and more:
2 Dope Queens
99% Invisible
BackStory
Crime Writers On . . .
Death, Sex & Money
Hardcore History
History Extra
How to Be Amazing
In Our Time
Invisibilia
Judge John Hodgman
Terrible, Thanks for Asking
The Hilarious World of Depression
The History of English Podcast
The Nerdist
Reply All
You Made it Weird
The Memory Palace
Acknowledgments
Writing a book can feel as lonely and isolating as an illness, but post-recovery it’s clear how much support I’ve had along the way.
Much thanks to my many writer friends, including Mary-Kim Arnold and The Rumpus, for publishing my original piece on having a spinal CSF leak as part of their “Letters in
the Mail” series; Sue O’Doherty and Rachel Simon for early discussion and encouragement as I began this project; Ann Douglas for much-needed text-based cheerleading; Ona Gritz for endless commiseration, insightful comments, and generous support throughout the writing process; and Barbara Card Atkinson, whose sharp writer’s eye and wit is unmatched, and whose friendship sustains me.
Thanks to my friends, old and new, online and in person, who helped me survive my leak year, begin again in Year Zero, and emerge into Year One, including Paul Constantino, Aubrey Knight, Dresden Shumaker, Sandra Telep, and the crones of Crone Island and Themyscira. Thanks especially to Heather Ann Kaldeway and my indispensable summertime writing partner Kaitlin Costello for their early and ongoing reads of this manuscript; to Alicia Korenman, who visited me the night before my procedure at Duke and graciously hosted me when I returned to North Carolina in much better health; and to Marc Stachowski, the hospital boyfriend who became my regular boyfriend, who was able to understand me even when I literally had no words.
Thanks to the welcoming community I found in the CSF Leak Facebook group and Rebound High Pressure group, and to my “big sister” and partner in patching and recovery, Nina Pelletier, who is as funny and wise as she is supportive.
Thanks to the doctors and medical professionals who supported me through this, including Randi Platt; neurologist Abigail Chua, who pointed me in the direction of Duke; and the entire team at Duke, from Horace and Nurse Charles to PA Jeff Taylor, and most especially Dr. Peter Kranz, whose considerable expertise as a researcher and clinician in treating CSF leaks is matched only by his remarkable empathy and concern for patients. Thanks to Dr. Connie Deline, founder of the Spinal CSF Leak Foundation, for lending her time and medical expertise in reading a draft of this manuscript; and to philosopher Dr. Barry Lam, for talking to me about consciousness and the self as I began to approach this project.
Thanks to my agent, Laura Gross, who has been my cheerleader and advocate for years, and whose support mattered immensely as I began to be able to write again; and to my editor, Jessica Case, whose faith in my ability to write this book has been a privilege, and the team at Pegasus, who made the book beautiful.
Thanks to my parents, Bill and Elin Buchanan, and my sister Doe Buchanan, for their support from afar; and my sister Jessie Buchanan for her support from up close. Thanks to Steve and Nurit Binenbaum for being there through what was a difficult period for all of us, for their generous gifts of time and of food, and for their fine grandparenting over the past almost two decades; and to Gil Binenbaum for his friendship, medical advocacy, and co-parenting. To Emi and Nate, I love you both more than you can possibly imagine. I am so lucky to be your mother.
THE BEGINNING OF EVERYTHING
Pegasus Books Ltd.
148 W. 37th Street, 13th Floor
New York, NY 10018
Copyright © 2018 Andrea J. Buchanan
First Pegasus Books edition April 2018
Interior design by Maria Fernandez
All rights reserved. No part of this book may be reproduced in whole or in part without written permission from the publisher, except by reviewers who may quote brief excerpts in connection with a review in a newspaper, magazine, or electronic publication; nor may any part of this book be reproduced, stored in a retrieval system, or transmitted in any form or by any means electronic, mechanical, photocopying, recording, or other, without written permission from the publisher.
Library of Congress Cataloging-in-Publication Data is available.
ISBN: 978-1-68177-672-9
ISBN: 978-1-68177-729-0 (e-book)
Distributed by W. W. Norton & Company
The Beginning of Everything Page 28