I am wearing a long-sleeved wetsuit. The water is not that cold! It’s fragrant and sweet. The lake is choppy with light waves but so beautiful, framed by the green forest up to the horizon, where mountains rise. My swim with Witek—we do a couple hundred yards of steady, purposeful strokes—is delightful. When Mirek and Kasia return from their bike ride, they tell us it was a bit scary—the roads are treacherous, with sharp inclines and declines, and wet from recent rains, but at least now they know what to expect tomorrow.
That night, still anxious about our fate, Mirek and I cannot sleep. By 4:30 a.m., with the sounds of other Quassy competitors awakening in the room above us and stirring in the halls outside, we get up and get ready. After a light breakfast, we drive to the lake, arriving shortly after sunrise and getting a good spot at the already crowded parking lot at the lake.
Last night’s rain has stopped, and the morning is chilly but calm. The first rays of sun emerge from the clouds and color the lake with a golden hue. The water surface looks like honey; smooth, undisturbed, glistening in the morning light. We gather our gear and head toward our positions. The swim is the first leg of the competition, followed by the bike ride, and then, finally, the run. Mirek pumps up his bike tires one last time in the spot where he will wait for me when I emerge from the water. I once again check the two-hundred-yard route I’ll take from the little sandy beach to our transition area, where I will hand him the timing chip that keeps track of each team, and where we’ll kiss each other goodbye. I retrace the route several more times to be sure I won’t get lost on the sprint from the lake to Mirek.
Among the hundreds of competitors gathered on the beach, I find Daniel DeHoyos waiting for me. He is tall and muscular, and his friendly strength gives me confidence. And here is Kasia in her black wetsuit! We look like a herd of seals on this tiny beach. I stand out, as I’m in a special red cap that is given to people who may experience distress during the swim. Still, I feel so proud to be one of them. I’m scheduled to start my swim in the second-to-last cohort (or wave) of competitors. Kasia will hit the lake five minutes after me, in the final group of swimmers.
When I get ready to dive into the water, I hear an announcement through a loudspeaker: “Barbara Lipska, a multiple cancer survivor, is starting now!” A quick thought passes through my brain: This must be Jake’s doing, this publicity stunt! Two weeks before the race, Jake wrote an article about our unusual team for the Wall Street Journal, “A Triathlon Is Easy Next to Soviets and Polio.” It was a beautiful tribute to Mirek and me and our family. (Only after the race do I learn it was Daniel’s idea to make this announcement!)
Waiting for the start of the Quassy triathlon with Daniel DeHoyos and Kasia.
People are cheering for me as I jump into the water! And then I hear only splashing, arms cutting through the water, legs kicking. I try not to lose sight of Daniel, who is swimming right in front of me with a red rescue buoy attached by a rope to his powerful torso. It feels great to follow him so easily, to be safe in his presence.
At the huge orange buoy that marks the first turn for swimmers, Kasia appears in the water right next to me. Even though I started before she did, she is already passing me, and she yells, “Mum, are you okay?”
“Of course I am!” I scream back above the din, and I continue my swim.
As I follow Daniel, I begin to feel great—relaxed, and so happy that I am competing in a real race. It takes me fifty minutes to swim the 1.2 miles. When we reach shallow water, Daniel and I stand and embrace each other as the small crowd at the beach screams and cheers for us again.
I run to Mirek as fast as I can. He kisses me and grabs our timing chip, then hugs and thanks Daniel.
“Life is a team sport!” Mirek says, beaming with joy. As he takes off on his bike, he turns back and shouts to us: “And remember, my love, we’ll conquer this beast!”
Acknowledgments
Thank you to my family for always standing by my side and caring for me in the hardest of times, especially my husband, Mirek Gorski. Thank you to my children, Kasia Lipska and Witek Lipski, for your love and always being there for me. Thank you to my sister, Maria Czerminska, for showing amazing dedication to finding the best options to save my life. Thank you to Jake Halpern and Cheyenne Noble, the loving spouses of my children, and to my brother-in-law, Ryszard Czerminski, for your unwavering support. Thank you also, Jake, for your encouragement and help with the op-ed article I wrote for the New York Times, without which this book would not exist, and for introducing me to Elaine McArdle, my co-writer and now a dear friend.
Thank you, Agata and Jason Ketterick and Jan Czerminski, for quietly cheering for my survival. Thank you also to my devoted extended family, Tamar Halpern and Paul Zuydhoek, for being such good friends when I needed you most, and Steven Halpern and Betty Stanton, for your kindness and support. And last but not least, thank you to my brilliant grandsons, Lucian and Sebastian, who kept me going in my darkest hours.
I’d like to express my gratitude to the doctors who treated and cared for me: my wonderful family doctor of nearly thirty years, Dr. Eugene Shmorhun; Dr. Michael Atkins at the Georgetown Lombardi Comprehensive Cancer Center in Washington, DC, and his team, in particular Kellie Gardner; the team at Dana-Farber Cancer Institute in Boston, in particular Dr. Stephen Hodi, the director of the Melanoma Center and of the Center for Immuno-Oncology; my neurosurgeon Dr. Ian Dunn at Brigham and Women’s Hospital in Boston; and especially the outstanding radiation oncologist Dr. Ayal A. Aizer.
Thank you also to my wonderful physical therapist Theresa Bell.
A special thank-you to my friend Dr. George E. Jaskiw for his review of this book as it developed. Thank you to a number of other physicians who helped with various sections of this book, including Drs. Bradford C. Dickerson, Erica Swegler, Jason Karlawish, Éric Fombonne, and Wendell Pahls. We also appreciate the help of Susan L.-J. Dickinson, executive director of the Association for Frontotemporal Degeneration, and Warren Fried of the Dyspraxia Foundation USA.
I am also very thankful to my colleagues at the Division of Intramural Research Programs of the National Institute of Mental Health for believing in me and my recovery, and to my coworkers and friends at the Human Brain Collection Core, NIMH. Thank you especially to Dr. Susan Amara, the NIMH scientific director, and Dr. Maryland Pao, the NIMH clinical director, as well as to Gwendolyn Shinko, the NIMH administrative director.
My co-author and I want to thank Leora Herrmann for her encouragement, and a very special thank you to Jack McGrail for his unflagging love and support.
We want to thank our agents Esmond Harmsworth and Nan Thornton at Aevitas Creative Management for their guidance, support, and good humor.
Thank you to our wonderful editor, Alex Littlefield, who believed in this project from the start, as well as to Pilar Garcia-Brown and everyone at Houghton Mifflin Harcourt.
Notes
Prologue
experiences a mental illness: Z. Steel et al., “The Global Prevalence of Common Mental Disorders: A Systematic Review and Meta-Analysis, 1980–2013,” International Journal of Epidemiology 43, no. 2 (April 2014): 476–93, https://www.ncbi.nlm.nih.gov/pubmed/24648481.
forty-four million adults each year: National Institute of Mental Health, https://www.nimh.nih.gov/health/statistics/prevalence/any-mental-illness-ami-among-us-adults.shtml.
27 percent of adults: World Health Organization, http://www.euro.who.int/en/health-topics/noncommunicable-diseases/mental-health/data-and-statistics.
homeless and incarcerated people suffer from mental illness: https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers.
$1 trillion each year: https://www.usnews.com/news/best-countries/articles/2016-04-12/who-makes-economic-argument-for-mental-health-treatment.
$193.2 billion in the United States: https://www.nimh.nih.gov/news/science-news/2008/mental-disorders-cost-society-billions-in-unearned-income.shtml.
who die each year by suicide: World Health Organization, http://www.
who.int/mental_health/prevention/suicide/suicideprevent/en/.
suffer from mental illness: https://www.nami.org/Learn-More/Mental-Health-Conditions/Related-Conditions/Suicide.
$201 billion in 2013: https://www.washingtonpost.com/news/to-your-health/wp/2016/05/19/guess-what-medical-condition-is-the-costliest-its-not-heart-disease-cancer-or-diabetes/?utm_term=.bbe1149ca97c.
1. The Rat’s Revenge
major regions of the human brain: http://www.bic.mni.mcgill.ca/ServicesAtlases/ICBM152NLin2009; https://surfer.nmr.mgh.harvard.edu/fswiki/FreeSurferMethodsCitation.
three million in the United States: https://www.nimh.nih.gov/health/statistics/prevalence/schizophrenia.shtml.
performed worldwide: Gordon M. Shepherd, Creating Modern Neuroscience: The Revolutionary 1950s (New York: Oxford University Press, 2010).
1993 in Neuropsychopharmacology: Barbara K. Lipska, George E. Jaskiw, and Daniel R. Weinberger, “Postpubertal Emergence of Hyperresponsiveness to Stress and to Amphetamine After Neonatal Excitotoxic Hippocampal Damage: A Potential Animal Model of Schizophrenia,” Neuropsychopharmacology 9 (1993): 67–75, doi:10.1038/npp.1993.44.
developing novel antipsychotic treatments: “Rat or Mouse Exhibiting Behaviors Associated with Human Schizophrenia,” U.S. patent no. 5,549,884, issued August 27, 1996, by the United States Patent and Trademark Office.
2. The Vanishing Hand
three or more tumors: https://www.aimatmelanoma.org/stages-of-melanoma/brain-metastases/.
3. Into My Brain
diagnosed in about 130,000 people each year: https://www.aimatmelanoma.org/about-melanoma/melanoma-stats-facts-and-figures/.
CA209-218: Expanded Access Program with Nivolumab in Combination with Ipilimumab in Patients with Tumors Unable to Be Removed by Surgery or Metastatic Melanoma, ClinicalTrials.gov identifier NCT02186249, https://clinicaltrials.gov/ct2/show/NCT02186249?term=CA209-218&rank=1.
4. Derailed
suddenly went off: “Phineas Gage: Neuroscience’s Most Famous Patient,” Smithsonian.com, http://www.smithsonianmag.com/history/phineas-gage-neurosciences-most-famous-patient-11390067/.
5. Poisoned
midline of the brain: Michele L. Ries et al., “Anosognosia in Mild Cognitive Impairment: Relationship to Activation of Cortical Midline Structures Involved in Self-Appraisal,” Journal of the International Neuropsychology Society 13, no. 3 (May 2007): 450–61.
damage to the right hemisphere: Mental Illness Policy, https://mentalillnesspolicy.org/medical/anosognosia-studies.html.
accept their diagnoses: Ibid.
very resistant to psychiatric treatment: Rachel Aviv, “God Knows Where I Am,” New Yorker, May 30, 2011.
participate in behavioral therapies: C. Arango and X. Amador, “Lessons Learned About Poor Insight,” Schizophrenia Bulletin 37, no. 1 (January 1, 2011): 27–28.
frontotemporal dementia: Nadene Dermody et al., “Uncovering the Neural Bases of Cognitive and Affective Empathy Deficits in Alzheimer’s Disease and the Behavioral-Variant of Frontotemporal Dementia,” Journal of Alzheimer’s Disease 53, no. 3 (2016): 801–16.
60 to 80 percent of all dementia cases: 2015 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association, https://www.alz.org/facts/downloads/facts_figures_2015.pdf.
diagnosed each year: World Health Organization, http://www.who.int/mediacentre/factsheets/fs362/en/.
forty-five to sixty-four years old: Association for Frontotemporal Degeneration, https://www.theaftd.org/understandingftd/ftd-overview.
typically lack empathy: Dermody et al., “Uncovering the Neural Bases.”
criterion for FTD: K. P. Rankin et al., “Self-Awareness and Personality Change in Dementia,” Journal of Neurology, Neurosurgery, and Psychiatry 76, no. 5 (2005): 632–39, http://jnnp.bmj.com/content/76/5/632.short.
6. Lost
developmental topographical disorientation (DTD): G. Iaria et al., “Developmental Topographical Disorientation and Decreased Hippocampal Functional Connectivity,” Hippocampus 24, no. 11 (November 2014): 1364–74, doi: 10.1002/hipo.22317.
9. What Happened, Miss Simone?
urinary incontinence: Ryuji Sakakibara et al., “Urinary Function in Elderly People with and Without Leukoaraiosis: Relation to Cognitive and Gait Function,” Journal of Neurology, Neurosurgery, and Psychiatry 67 (1999): 658–60.
their healthy siblings: T. M. Hyde et al., “Enuresis as a Premorbid Developmental Marker of Schizophrenia,” Brain 131 (September 2008): 2489–98, doi: 10.1093/brain/awn167.
“not what happened at all”: T. Rees Shapiro, “Harvard-Stanford Admission Hoax Becomes International Scandal,” Washington Post, June 19, 2015.
10. The Light Gets In
BRAIN initiative: https://www.braininitiative.nih.gov/.
11. Survivor
“Neuroscientist Who Lost Her Mind”: Barbara K. Lipska, “The Neuroscientist Who Lost Her Mind,” New York Times, March 12, 2016, https://www.nytimes.com/2016/03/13/opinion/sunday/the-neuroscientist-who-lost-her-mind.html.
Epilogue
“Soviets and Polio”: Jake Halpern, “A Triathlon Is Easy Next to Soviets and Polio,” Wall Street Journal, May 22, 2017, https://www.wsj.com/articles/a-triathlon-is-easy-next-to-soviets-and-polio-1495492959.
About the Authors
BARBARA K. LIPSKA, PH.D., is director of the Human Brain Collection Core at the National Institute of Mental Health, where she studies mental illness and human brain development. She holds a doctorate in medical sciences from the Medical School of Warsaw and is an internationally recognized leader in human postmortem research and animal modeling of schizophrenia. A marathon runner and triathlete, she lives with her husband, Mirek Gorski, in Virginia.
ELAINE McARDLE is an award-winning writer and journalist who has written investigative stories, features, and news for many publications, including the Boston Globe, the Harvard Law Bulletin, and Boston Magazine. She is the coauthor of The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health. A senior editor at UU World magazine, she lives with her husband, Jack McGrail, in Portland, Oregon.
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