‘Functional Movement Disorder’ (FMD) is a disease not yet clearly identified why it happens and how it can be cured, nevertheless causing fearful involuntary movements of the body such as severe muscle spasms and paralysis, affecting physical functioning and making basic daily life impossible. It causes insomnia, indigestion, perspiration, depression, and shortness of breath, and pain to both the patient and family members.
This book offers a vivid account of a couple’s devoted emotional struggles with FMD syndrome, published for the first time in Korean and now in English. Composed of three main parts, the first and third parts were written by Young-hee Shim, the patient who suffered severely from FMD, and the second part by Sang-Jin Han, her husband and care-giver as well. Part 1 describes the onset and progression of the disease, its symptoms, the recuperation process including medical examinations and diagnoses, drug treatment, and exercise therapy. Part 3 describes the day-to-day course of relearning everything anew beginning from breathing and stretching up to the recovery stage beginning with therapeutic walks. Part 2 shows the care-giver’s observation and records of the factual trajectories of the illness in great detail, in a meticulously careful and reflexive manner, thereby candidly disclosing his lived experience of what love means and how family supports could have continued.
When someone in the family becomes ill, it affects the entire family. Anxiety eats away at the soul, and disease even more so. As the saying goes, ‘A long illness will break even the most filial son’. The family member caring for the patient suffers as much as the patient, and is placed in a difficult situation that requires patience and dedication.
However, readers of the book will meet a warm couple and their family and friends, who comfort and care for each other even in times of extreme pain and fatigue. The book offers a moving story fully describing how the patient, despite the lack of memories except her own experiences of illness could have recovered her narratives and combined them into the vivid daily records prepared by husband while she immersed into sleeping every night.
The two Korean co-authors, Professor Han at Seoul National University and Professor Shim at Hanyang University remained closely united emotionally as husband and wife even in a desperate situation where there is no clear cure or prescription. In a chaotic situation due to the absence of reliable information, the book shows how husband led the whole family to a consensus, trusting on the treatment by the medical staffs while doing everything he can to support his spouse.
Singing to his crying wife in the middle of the night as he tends to her needs, he is an active caregiver who seeks a vehicle for treatment through frequent walks and exercising rather than staying in bed, and who, while getting angry from time to time amid the frustration of his situation, soon realizes his fault and humbly apologizes for losing his temper. This can be said to be the power of an intellect that controls emotion and manages struggle through constant self-reflection, and at the same time, is a testimony to the couple’s decades-long intellectual and mutually engaged social life.
In this book, readers encounter a powerful example of love and care that avoids falling into the sad, gloomy, tragic atmosphere of battling illness. This is another virtue. In doing so, it may provide comfort and courage to patients and their families who are tired and depressed from the pain and responsibility that disease incurs. The authors hoped to be of some help to those patients and families suffering from FMD and other rare diseases, offering hope for recovery by their own example.
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Foreword v
Endorsements to the English Edition xiii
Endorsements to the Korean Edition xv
Prologue
One Day, My Body Began to Scream xxiii
PART 1
Why Is This Happening to Me? 1
Chapter 1
‘This Is Functional Movement Disorder Syndrome.’ 3
The Obscure Disease Called ‘a Syndrome’ 5
The Correlation between Muscle Tremors and the Mind 14
Let’s Do Everything We Can 19
Chapter 2
Daily Life with Tremors, Stiffness, and Paralysis 29
A Physical System Out of Control 31
The Fear of Paralysis Becomes a Reality 40
A Huntington Genetic Test and Cerebrospinal Fluid Test 47
Oh, My Life is Over! 54
A New Movement Disorder Pattern: What Should I Do Now? 61
PART 2
It’s Okay, I’m Here 67
Chapter 3
The Wisdom to Find the Best Solution 69
Regret Cannot Erase How Sorry I Feel 71
The Sadness of Watching Her Suffer 79
‘The Lord’s Prayer’ Song at Midnight 84
Gradually Uncovering Life’s Clues 90
You Have No Idea How Difficult It Is 96
Chapter 4
How We Can Be Different 103
There Are Good Days and Bad Days 105
There Are Faint But Small Noticeable Changes Now! 110
Change Me, Lord, Not the Circumstance 116
The ‘Here and Now’ Is Our Paradise 123
Chapter 5
I’m By Your Side 131
Music To My Ears: ‘Shall We Go Outside?’ 133
What More Can I Do? 139
The Lover I Long For, Even When She Is by My Side 149
PART 3
Relearning Everything 161
Chapter 6
Deep Breaths Instead of Sighs, Walking Instead of Idling 163
Was It This Hard to Breathe? 165
Walking Again! Thank You, Legs! 173
How About Muscle-Strengthening Exercises? 180
The Armchair I Bought Because Sitting Was Difficult 185
Chapter 7
The Small World I Began to See While Walking 193
You’re Getting Better, It’s Nothing to Be Ashamed Of 195
My Right Arm Now Lifts Easily 202
Hope is the Heart of the Flower, the Heart of the Person 205
Epilogue
The Basis For Turning This Case of FMD Syndrome Into a Narrative 211
About the Authors and the Translator 215
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Sang-jin Han graduated from the Department of Sociology and Graduate School of Seoul National University, and received a Ph.D. in Sociology from Southern Illinois University in the U.S. He served as President of the Academy of the Korean Studies, and Chairman of the Presidential Commission of Policy Planning during Kim Dae-jung administration. He taught as Visiting Professor at Columbia University in New York, Beijing University, Tsinghua University, and Jilin University in China, Ecole des Hautes Etudes en Sciences Sociales in Paris, University of Buenos Aires, Argentina, and University of Kyoto, Japan. Currently, he is Professor Emeritus of the Department of Sociology at Seoul National University, and the Chairman of the Board of Trustees of the Joongmin Public Foundation.