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
