Brain on Fire: My Month of Madness

Brain on Fire: My Month of Madness

4.3 223
by Susannah Cahalan
     
 

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A gripping memoir and medical suspense story about a young New York Post reporter’s struggle with a rare and terrifying disease, opening a new window into the fascinating world of brain science.

One day, Susannah Cahalan woke up in a strange hospital room, strapped to her bed, under guard, and unable to move or speak. Her

Overview


A gripping memoir and medical suspense story about a young New York Post reporter’s struggle with a rare and terrifying disease, opening a new window into the fascinating world of brain science.

One day, Susannah Cahalan woke up in a strange hospital room, strapped to her bed, under guard, and unable to move or speak. Her medical records—from a month-long hospital stay of which she had no memory—showed psychosis, violence, and dangerous instability. Yet, only weeks earlier she had been a healthy, ambitious twenty-four year old, six months into her first serious relationship and a sparkling career as a cub reporter.

Susannah’s astonishing memoir chronicles the swift path of her illness and the lucky, last-minute intervention led by one of the few doctors capable of saving her life. As weeks ticked by and Susannah moved inexplicably from violence to catatonia, $1 million worth of blood tests and brain scans revealed nothing. The exhausted doctors were ready to commit her to the psychiatric ward, in effect condemning her to a lifetime of institutions, or death, until Dr. Souhel Najjar—nicknamed Dr. House—joined her team. He asked Susannah to draw one simple sketch, which became key to diagnosing her with a newly discovered autoimmune disease in which her body was attacking her brain, an illness now thought to be the cause of “demonic possessions” throughout history.

With sharp reporting drawn from hospital records, scientific research, and interviews with doctors and family, Brain on Fire is a crackling mystery and an unflinching, gripping personal story that marks the debut of an extraordinary writer.

Editorial Reviews

The New York Times Book Review - Michael Greenberg
Brain on Fire is at its most captivating when describing the torturous process of how doctors arrived at [the] diagnosis…At its best, Cahalan's prose carries a sharp, unsparing, tabloid punch in the tradition of Pete Hamill and Jimmy Breslin.
The Washington Post - Maggie Scarf
Cahalan's tale is told in straightforward journalistic prose and is admirably well-researched and described. Because she has no memory of her "month of madness," the story rests on doctors' notes and recollections, hospital films, her father's journals, both parents' recounting of what happened, and the reminiscences of her devoted boyfriend and those of her many friends and relatives. This story has a happy ending, but take heed: It is a powerfully scary book.
Publishers Weekly
In 2009, Cahalan was in a serious relationship and her career as a reporter at the New York Post was taking off. But suddenly, as she tells it in this engaging memoir, she began suffering from a bizarre amalgam of debilitating symptoms including memory loss, paranoia, and severe psychosis that left her in a catatonic state that moved her close to death. Physicians remained baffled until one extraordinary doctor determined that Cahalan was “in the grip of some kind of autoimmune disease.” Released from the hospital after 28 days, she had no memory of her stay there. DVDs recorded in the hospital were the only link she had to her startling condition. “Without this electronic evidence, I could never have imagined myself capable of such madness and misery,” she writes. Focusing her journalistic toolbox on her story, Cahalan untangles the medical mystery surrounding her condition. She is dogged by one question: “How many other people throughout history suffered from my disease and others like it but went untreated? The question is made more pressing by the knowledge that even though the disease was discovered in 2007, some doctors I spoke to believe that it’s been around at least as long as humanity has.” A fast-paced and well-researched trek through a medical mystery to a hard-won recovery. (Nov.)
The Lancet
“A dramatic and suspenseful book that draws you into her story and holds you there until the last page. . . I recommend it highly.”
The Washington Post
“Harrowing . . . Cahalan's tale is . . . admirably well-researched and described. . . . This story has a happy ending, but take heed: It is a powerfully scary book.”
Library Journal
At age 24, New York Post reporter Cahalan was successfully launching a career and a first serious relationship when she entered a month of intensive violent and psychotic episodes that she does not remember even now. After $1 million worth of tests, the doctors were preparing to place her in a psychiatric ward when Dr. Souhel Najjar joined her team and diagnosed a newly discovered autoimmune disease in which the body attacks the brain. Cahalan's doctors now think that this disease may explain instances of presumed demonic possession throughout history. Meanwhile, herself again, Cahalan nervily reports this extraordinary experience. A big BEA buzz book.
Kirkus Reviews
A young journalist's descent into her own baffling medical mystery. In her debut memoir, New York Post reporter Cahalan recounts her struggle to understand an unremembered month lost to illness. Cobbled together from interviews, medical records, notebooks, journals and video footage, the author conjures the traumatic memories of her harrowing ordeal. What began as numbness in her hands and feet soon grew into something more serious, climaxing in a terrifying seizure witnessed by her boyfriend. "My arms suddenly whipped straight out in front of me, like a mummy," she writes, "as my eyes rolled back and my body stiffened….Blood and foam began to spurt out of my mouth through clenched teeth." The mystery thickened as doctors struggled to agree on a diagnosis. While the uncertainty proved maddening for her family members, however, it was also what bonded them together. Cahalan's estranged parents, in particular, found a common purpose as a result of their daughter's plight, putting her health before old hardships. After numerous tests revealed nothing, an observed increase of white blood cells in her cerebrospinal fluid eventually clued in medical professionals. Diagnosed with anti-NMDA-receptor encephalitis--a rare autoimmune disease with a cure--Cahalan and her family embarked on the long, hard road to recovery. Through the lonesomeness of her illness, a community emerged, the members of which were dedicated to returning the author to her former life as a beloved daughter, sister, lover and friend. A valiant attempt to recount a mostly forgotten experience, though the many questions that remain may prove frustrating to some readers.
Booklist (starred review)
“This fascinating memoir by a young New York Post reporter…describes how she crossed the line between sanity and insanity…Cahalan expertly weaves together her own story and relevant scientific information…compelling.”
Cognitive and Behavioral Neurology
“For the neurologist, I highly recommend this book on several grounds…First, it is a well-told story, worth reading for the suspense and the dramatic cadence of events…Second, it is a superb case study of a rare neurologic diagnosis; even experienced neurologists will find much to learn in it…Third, and most important, it gives the neurologist insight into how a patient and her family experienced a complex illness, including the terrifying symptoms, the difficult pace of medical diagnosis, and the slow recovery. This story clearly contains lessons for all of us.”
New York Times Book Review
“Captivating…Cahalan’s prose carries a sharp, unsparing tabloid punch in the tradition of Pete Hamill and Jimmy Breslin.”
People magazine
“A fascinating look at the disease that – if not for a nick-of-time diagnosis – could have cost this vibrant, vital young woman her life.”
BookForum
"An intense, mesmerizing account of survival. . . Cahalan's deft descriptions of her spooky hallucinations could be right out of a Poe terror tale."
NPR.org
"The best reporters never stop asking questions, and Cahalan is no exception...The result is a kind of anti-memoir, an out-of-body personal account of a young woman's fight to survive one of the cruelest diseases imaginable. And on every level, it's remarkable.....Cahalan is nothing if not tenacious, and she perfectly tempers her brutal honesty with compassion and something like vulnerability. It's indisputable that Cahalan is a gifted reporter, and Brain on Fire is a stunningly brave book. But even more than that, she's a naturally talented prose stylist — whip-smart but always unpretentious — and it's nearly impossible to stop reading her, even in the book's most painful passages....Brain on Fire comes from a place of intense pain and unthinkable isolation, but finds redemption in Cahalan's unflagging, defiant toughness. It's an unexpected gift of a book from one of America's most courageous young journalists."
The Daily Texan
“What is most impressive about “Brain on Fire” is that Cahalan has little recollection of her month of insanity…. Thanks partially to her talent as a journalist and to the fact that her parents kept journals, Cahalan was able to recapture her month, leaving no holes in the narrative.”
Elle
“The bizarre and confounding illness that beset the 24-year-old New York Post reporter in early 2009 so ravaged her mentally and physically that she became unrecognizable to coworkers, family, friends, and—most devastatingly—herself… She dedicates this miracle of a book to ‘those without a diagnosis’… [An] unforgettable memoir.”
Scientific American
“Swift and haunting.”
Booklist
“This fascinating memoir by a young New York Post reporter…describes how she crossed the line between sanity and insanity…Cahalan expertly weaves together her own story and relevant scientific information…compelling.”
Mental Floss
“Compelling…a New York Post reporter recounts her medical nightmare.”
From the Publisher
“A fast-paced and well-researched trek through a medical mystery to a hard-won recovery.”
Publishers Weekly

“Echoing the blend of memoir and journalism, narrator Heather Henderson modulates the story’s shifting emotional undercurrent with her careful use of tone and pacing. . . . Henderson’s voice is crisp, clear, and remarkably unfazed by the . . . medical terminology.”
AudioFile

“A remarkably well-written and well-read account.”
Booklist

Product Details

ISBN-13:
9781451621372
Publisher:
Free Press
Publication date:
11/13/2012
Pages:
288
Product dimensions:
6.32(w) x 9.16(h) x 0.98(d)

Read an Excerpt

Brain on Fire


  • At first, there’s just darkness and silence.

    “Are my eyes open? Hello?”

    I can’t tell if I’m moving my mouth or if there’s even anyone to ask. It’s too dark to see. I blink once, twice, three times. There is a dull foreboding in the pit of my stomach. That, I recognize. My thoughts translate only slowly into language, as if emerging from a pot of molasses. Word by word the questions come: Where am I? Why does my scalp itch? Where is everyone? Then the world around me comes gradually into view, beginning as a pinhole, its diameter steadily expanding. Objects emerge from the murk and sharpen into focus. After a moment I recognize them: TV, curtain, bed.

    I know immediately that I need to get out of here. I lurch forward, but something snaps against me. My fingers find a thick mesh vest at my waist holding me to the bed like a—what’s the word?—straitjacket. The vest connects to two cold metal side rails. I wrap my hands around the rails and pull up, but again the straps dig into my chest, yielding only a few inches. There’s an unopened window to my right that looks onto a street. Cars, yellow cars. Taxis. I am in New York. Home.

    Before the relief finishes washing over me, though, I see her. The purple lady. She is staring at me.

    “Help!” I shout. Her expression never changes, as if I hadn’t said a thing. I shove myself against the straps again.

    “Don’t you go doing that,” she croons in a familiar Jamaican accent.

    “Sybil?” But it couldn’t be. Sybil was my childhood babysitter. I haven’t seen her since I was a child. Why would she choose today to reenter my life? “Sybil? Where am I?”

    “The hospital. You better calm down.” It’s not Sybil.

    “It hurts.”

    The purple lady moves closer, her breasts brushing against my face as she bends across me to unhook the restraints, starting on the right and moving to the left. With my arms free, I instinctually raise my right hand to scratch my head. But instead of hair and scalp, I find a cotton hat. I rip it off, suddenly angry, and raise both hands to inspect my head further. I feel rows and rows of plastic wires. I pluck one out—which makes my scalp sting—and lower it to eye level; it’s pink. On my wrist is an orange plastic band. I squint, unable to focus on the words, but after a few seconds, the block letters sharpen: FLIGHT RISK.

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    What People are saying about this

    David B. Angus
    Brain on Fire reads like a scientific thriller, but with a profound and moving philosophy at its heart.”
    —David B. Agus, M.D., Professor of Medicine and Engineering, University of Southern California, and author of The End of Illness
    Mehmet Oz
    “Engrossing. . . . Unquestionably, an important book on both a human and a medical level. Cahalan’s elegantly-written memoir of her dramatic descent into madness opens up discussion of the cutting-edge neuroscience behind a disease that may affect thousands of people around the world, and it offers powerful insight into the subjective workings of our minds.”
    —Mehmet Oz, M.D., Professor and Vice Chair, Department of Surgery, New York Presbyterian-Columbia Medical Center

    Meet the Author


    Susannah Cahalan is a news reporter at the New York Post whose award-winning work has also been featured in The New York Times. She lives in Jersey City, New Jersey.

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    Brain on Fire: My Month of Madness 4.3 out of 5 based on 2 ratings. 223 reviews.
    NJ-Nina More than 1 year ago
    This is a profoundly moving, true story of a young woman who, over the course of a few weeks, spirals into almost total madness. Her loved ones stay by her side throughout her month long hospitalization watching doctor after doctor doing test after test handing down diagnosis after diagnosis. When a doctor mentions a rare disease that may be the cause of the young woman’s illness, her parents are left to decide whether or not to allow a test that may cause permanent brain damage. Susannah Cahalan’s account of her life before, during and after her battle with mental illness is very well written and surprisingly readable. As she delves into the working of the human brain the reading becomes a little dry but by the next paragraph, the reader is once again swept up into a story that is consuming and compelling. I was extremely moved by this book and strongly recommend it.
    Colleen33 More than 1 year ago
    This is a remarkable book. Author Susannah Cahalan is courageous as she shares her personal experience of “madness”. She brilliantly writes about her bizarre and confounding illness that stumped many neurologists and takes us through her and her family’s journey as they searched for answers to restore her health. This book is inspiring for people/families who have ever experienced a loved one who has been misdiagnosed or has experienced loss in brain functionality. I feel more informed and empowered by reading Cahalan’s true story. As a person who has had a loved one experience rapid loss of brain function, I highly recommend reading this book. I also recommend any books written by Ariel and Shya Kane. I found great comfort reading their book “Being Here: Modern Day Tales of Enlightenment” when my father had a stroke. I found answers how to best support him and my family during this period of our lives. I highly recommend reading Cahalan’s book and seeking out the Kanes to support well-being in your life.
    Read-by-Glowlight More than 1 year ago
    Susannah Cahalan, a bright young reporter for the New York Post, a talented writer with a career full of promise, suddenly began losing her mind. One day she was doing brilliant research, and the next day she was too obsessive-compulsive about bed bugs to complete her assignment. Then she couldn’t concentrate, couldn’t track conversations, couldn’t compose a simple paragraph. All for no apparent reason. Day by day, hour by hour, reality slipped away as terror took over. Susannah doesn’t remember the trip to the hospital or being admitted, but what she knew for sure was that she didn’t belong there. The morning after a failed attempt to escape, she told the attending neurologist: “You need to let me out of here. I don’t belong here. They’re all saying bad things about me.” “Who’s talking to you?” “The people on the TV.” She also heard people’s thoughts, frightening thoughts about herself. Then she discerned that her parents set up the whole scene: the doctors, the nurses, all of it, in order to trick her into being forced into the medical center. It was all one giant conspiracy. In this candid and brave memoir, Brain on Fire: My Month of Madness, Susannah Cahalan reveals how it feels to be trapped inside a mind that’s playing tricks and in a body that won’t cooperate. It’s all here: the madness, the details about the team of medical experts who tried every possibility to help her, her family’s and boyfriend’s responses, and the reaction of lifelong friends and strangers. Her story is fascinating, horrifying, and most importantly, educational. We learn about the medical tests, the logic of the diagnostic hypotheses, and how the human brain works. We learn the questions the doctors struggled over, including the bet between two doctors as to what the correct diagnosis might be. It even includes original notes and drawings from her hospital stay. What was destroying Susannah’s mind? Was it bipolar disorder? Schizophrenia? Alcohol poisoning? Allergic reactions? Epilepsy? Demonic possession? No one knew and nothing they tried was working. In the meantime, she lost the ability to read and most of her speech. The one thing everyone agreed on is that something needed to be done fast in order to save Susannah’s life. This is more than a medical memoir; it is also a story of true and enduring love. Her mother and father, divorced and estranged, put aside their personal feelings to stay by their daughter’s side through it all. Her boyfriend, the one her father thought of as a “temporary place holder” showed his true heart and strength by his actions. This part of the story is also important, because it shows the tenacity of love and loyalty. My favorite part of the book is when her father gets down on his knees and prays for his daughter; and her mother, a Jewish skeptic, meets with a Baptist co-worker to join hands in prayer. Right after this, the family is led to a gifted specialist from Pennsylvania. A corner is turned, and in the end, Susannah Cahalan writes this amazing book. Near the conclusion, she writes that she makes a list of people to thank. I have to say, I hope God is on that list. Fantastic book. Highly recommended.
    TheRelentlessReader More than 1 year ago
    This book made me terrified of my own body. This can actually happen? Your brain can turn against itself and make you appear, for all intents and purposes, as completely off your rocker? It can happen. While reading Susannah's story you can easily imagine how this must have happened to others. And not to the lucky ones with access to healthcare and tenacious doctors. You have to wonder how many people were shut away, given up on, relegated to the attic. Brain on Fire is well written, thought provoking, educational and compelling. Read it. Jennifer @ The Relentless Reader
    Anonymous More than 1 year ago
    Im going to be short and sweet here. I loved this book, couldnt put it down, found it fascinating, well written, and engrossing. Highly recommended.
    kfawv More than 1 year ago
    When I purchased this book I wasn't sure what I was going to find. I grew up with schizophrenia, bipolar and depression from within my family. I encounter stereotypes of these illnesses all too often. I have to admit that early on in the book as Susannah begins to exhibit schizophrenia-like symptoms I wasn't sure if I could continue reading it as I care for a loved one who suffers from schizophrenia, and dealing with the paranoia and delusions are very painful for family members. You can only watch them suffer and there's not much you can say that will change it, although you never stop trying. ~ Once Susannah's illness begins to evolve I became very interested in how this was going to turn out. This couldn't be easy for Susannah to write, but I applaud the fact that she did. Stigmas come from ignorance. And even though her illness was only schizophrenia-like in the beginning, it reminded me of the shame our family suffered every day trying to appear as if we didn't experience such a thing. I feel I was meant to share my experiences with others who are hurting and who also struggle. Painful experiences only hurt when we hold onto them and try to cover them up. Life begins when you can break free from the stereotypes and come to accept yourself/family member and experiences for what they are/were, limitations and all. ~ Thank you Susannah for not allowing embarrassment or shame to keep you from writing your very important and educational story. ~Kris
    Anonymous More than 1 year ago
    A well written book on a very interesting premise. Insightful, succinct and educative account of a crippling disease of the mind and the patience's odyssey back to normalcy. True to life and helpful stories like Susannah Cahalan's Brain on Fire: My Month of Madness, and other Janvier Chando's educative story The Grandmothers, help give us strength and hope in life.
    Anonymous More than 1 year ago
    This book has been a great help for me in a situation regarding a family member. My brother's behavior changed overnight and he was hospitalized with dizziness, confusion, and memory loss. Asking him how he was feeling was impossible, and the doctors were puzzled since his tests did not show any immediate problems (tumors, stroke, etc). The doctors began moving towards autoimmune encephalitis as the problem and suggested this book as an easy to read explanation of the syndrone. As I said, it has been a great help. I'd also recommend this book for anyone who wants to better understand how the brain works, how diagnoses are (aren't) made, and how, in some cases, encephalitis better fits the definition that we have given to autism.
    Perdita9 More than 1 year ago
    Twenty four year old Susannah Cahalan is a reporter in New York city when she becomes convinced her apartment is invested with bed bugs. Then she is sure her boyfriend is cheating on her. Soon she's having seizures and descending into full blown psychosis. It's harder to say what's scarier -- Susannah's illness or the endless parade of clueless medical professionals. MDs are quick to provide a variety of diagnoses from DTs to Schizophrenia but no one has any real answers. It takes a real life Dr. House to classify Susannah's illness as anti-NMDA receptor encephalitis, a condition that could possibly be used to explain cases of demonic possession. People with this disease go THAT crazy. "Brain on Fire" is a riveting account of one woman's descent into madness and her long climb out of the pit. Highly recommended.
    The_Busy_Bibliophile More than 1 year ago
    What an amazing story. This would be a great fiction story, but the fact that it’s true makes it all the more incredible. Susannah takes us on the journey she took as she fell ill to the mysterious illness. The book starts at the first sign that something is wrong and takes us through her time in the hospital, her diagnosis, treatment and the follow-up care and research. Even though she can’t remember anything from that time, she has pulled together doctor’s notes, videos and interviews to create a thorough timeline that makes the reader fell like they’re living through it with her. And it was scary. One minute she was an outgoing, confident young woman and the next she was a paranoid, delusional mess. It came on so suddenly and there were only a few signs that something was wrong before she ended up in the hospital. The tests and incorrect diagnoses she went through before they ever discovered her problem were immense and I’m impressed that her family didn’t give up on her. Their persistence is a testament of their love. Also? I think she might have the best real-life boyfriend ever. You know it’s going to end well (she did write the book, after all) but the writing is so immersive and intense, that you wonder how it will all work out. This could have had a very different outcome, and Susannah is very lucky that the right doctor found the right test at the right time. The last section of the book deals with the aftermath – how Susannah continues to be affected and the research and development that have gone into the disease since her diagnosis. That section wasn’t as intense as the earlier parts, but it was interesting. In fact, there are interesting facts and tidbits throughout the book, which were especially useful so we would know exactly how Susannah’s brain was misfiring. The narrator did a great job, she had the moods and affectations down perfectly. When combined with the fabulous writing, I really felt like I was there in Susannah’s head while she was going through this. The sum up: An intriguing story made even better by the tight writing. Susannah is a gifted writer and I’m amazed this is her first book. Don’t miss it.
    books4gail More than 1 year ago
    Gripping story highlighting the breaking boundary between psychiatry and physical medicine. I read this in two days. I recommend this for those who liked My Stroke of Insight or even Girl Interrupted.
    Anonymous More than 1 year ago
    I found the chapters leading up to and during her hospital stay to be extremely interesting. The later chapters when she details her recovery period felt redundant. Overall an OK read.
    Anonymous More than 1 year ago
    The topic was interesting. The substance fizzled out. Good quick read and it was enlightening.
    dave61 More than 1 year ago
    Cannot put this one down. Cruising through it in a few days and getting short on sleep. What a riveting story and thanks Sussanah for sharing it with us. Very intereresting condition and I just love when peopel are so open and sharing of their most personal feelings, fear and ove through adversity. Absolutely Inspiring. Please keep writing you have a gift.
    Anonymous More than 1 year ago
    What a wonderful read! I was very intrigued when reading about the book and was not let down at all! Susannah Cahalan did a wonderful job of telling her story and keeping me interested throughout the book!
    Anonymous 10 months ago
    This book kept me emotionally drained.
    Anonymous More than 1 year ago
    This is a courageous book by a courageous author writing from her firsthand experiences. It reminds me of a similar book I have read recently, Enlightened or Mad?, by David Y. F. Ho, a psychologist and no less a courageous author, who bears his soul about his encounters with "madness". Both authors have a lot to teach the world by sharing their personal experiences with others.  
    AundriaChristine 5 months ago
    I couldn't put this book down, and hand it out all the time for others to read.
    TheMomWhoRuns 8 months ago
    Busy moms beware: Journeying with Susannah Cahalan on her month-long descent into “madness” and the grueling climb back out is fascinating and spellbinding, all the while depressing and frightening. First, from the perspective of the reader, her experience is tangible with every page you turn. Her frustration is yours. The moments of her denial has you shouting and shaking the book “No! No! You’re not fine!” The jubilation at her final diagnosis is also yours, emotionally fatigued and delighted to have an answer. A treatment plan. The light of hope at the end of a long, dark tunnel. Then, from the perspective of a mother, the truth that not every disease is well understood, that you, your family or your child may suffer some similar experience, will hit you where it hurts. And give you hope that, should you find yourself in a situation so frightening, so unfamiliar, all is not lost. Persistence, faith and hope can result in resolution. From the memories she retained with the help of her family, written and videotaped medical records, interviews with her medical team, the journal her father wrote and hospital communication notebook her parents maintained, Ms. Cahalan weaves the evasive truth of her illness into a memoir and cautionary tale. Part medical mystery, part memoir, it’s a fascinating tale. I found myself less engaged following her diagnosis and successful treatment, mainly because the tale of her recover seemed anti-climactic. This is not to suggest it was dull, to discount its importance or to downplay the challenges she faced. Rather, for me the primary source of tension in the book was her elusive diagnosis, so what followed after her recovery began, difficult as it was, did not hold my attention as well. Despite this, the book and the story are well-written and will transfix most readers. This book should be on a ‘must read’ list for busy parents, and medical practitioners. Following a patient, a daughter, a partner, on a dismal decline, hoping in the face of hopelessness and struggling to find the truth, the treatment, the person who was lost to the disease, are life lessons for all of us. Happy trails, and may good books (and good health) be plentiful!
    Anonymous More than 1 year ago
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    MedusaTM More than 1 year ago
    Great read!
    Anonymous More than 1 year ago
    Love this book. It is a very well written account and preview of what my patients go through.
    Anonymous More than 1 year ago
    I was sucked into this book immediately, and finished it in less than 24 hrs. Couldn't put it down!
    Anonymous More than 1 year ago
    WOW! This was such an amazing story! Than you for sharing and enlightening us all!