Love As Healing

'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.

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