Love As Healing: Documenting a Family's Devoted Emotional Struggle with Functional Movement Disorder (FMD)

By Young-hee Shim and Sang-jin Han

'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, depre

• Language: English
• Publisher: Joongmin Publishers
• Release date: Sep 11, 2023
• ISBN: 9798988728818

Young-hee Shim

Young-hee Shim graduated from the Department of English and Sociology at Seoul National University, and received a Ph.D. in Sociology from Southern Illinois University in the U.S. She spent time at Bielefeld University in Germany as a researcher, was a visiting professor at Columbia University in New York, and a visiting professor at Beijing University. She has been a professor at the Hanyang University Department of Sociology and Law, a chair professor, and currently is an Professor Emeritus. She served as president of the Korean Association of Women's Studies and as co-representative of the Women Making Peace, an NGO. She has started an on-line cafe for FMD patients (https://cafe.naver.com/jmfmd), where FMD patients and their families can help and encourage one another with information-sharing and self-help tips.

Book preview

PROLOGUE

• • •

One Day, My Body Began to Scream

IT WAS ONE DAY IN 2017. I was having tea with my son’s family after dinner.

Mom, your head is shaking.

Who, me? Is it? I don’t think so.

Until I heard those words, I wasn’t aware of any symptoms.

Yeah, you’re trembling . . . 

It’s nothing. It doesn’t matter.

I was a little concerned, of course, but that’s what I said anyway, lest the kids worry. If my eyelids were trembling, it would stop after a while. In my own way, I’ve always been confident when it comes to my health. I didn’t take the matter seriously because up to that point I hadn’t experienced any problems or impediments to my work.

A similar thing happened in 2018 when I was attending Mass at a Catholic church. My husband, standing next to me, whispered as he gently supported my back with his hand.

Can’t you just stand there without swaying?

A Mass involves a lot of standing and sitting. My husband pointed out that while standing I kept moving my body forward and backward.

Your body never stays still.

At this point, I began to feel a little worried.

When spring came, I told the attending physician at the hospital about these symptoms and he gave me a referral to the Department of Intractable Diseases. The doctor there examined me and listened to my health history, and without telling me what kind of disease it was, said that there was no need to take medication for the symptoms. I took that to mean it was no big deal, so I left it there.

It was early December, near the end of 2018. A couple, dear friends of ours for many years, came to visit and we were having tea together at a cafe near our house. We were sitting outside the cafe and it was a little chilly. Even though I didn’t let on to the others, I was trembling so badly that my teeth started to rattle. It was nippy out, yes, but I was unaware at the time that the shivering might be caused by an illness. My body was definitely sending me a signal, but because of my ‘old habit’ of thinking that one’s physical condition can be managed by one’s own will power, I disregarded it.

We hadn’t spoken in person in such a long time, we decided to catch up by strolling along the neighboring Picheondeuk Trail. We talked and swapped memories well into the evening. It was late before we knew it, so I invited them to supper at my home. Despite the fact it was a very pleasant get-together and my spirits were high, my body felt cold and trembled as though I were suffering from a body ache.

At the end of June 2019, after receiving a diagnosis and a doctor’s prescription, I went to the hair salon to get a perm. As the hairdresser started cutting my hair, I told her that my head might shake and make it challenging for her. She then said she’d noticed the shaking before, but hadn’t brought it up. This proved that the symptoms existed before I became aware of them.

I began to worry about my health. Numerous things came into question, like the fact that I sleep on my left side most of the time. Was it connected to my symptoms? I started lying on my left side because sleeping that way promotes digestion and eases pressure on the stomach, which is located on the left side of the abdomen. Anyway, the claim seemed credible to me.

I eventually developed the habit of needing to sleep on my left side. Then one day, I realized I was losing strength in my left arm. Then it started feeling numb, my left shoulder hurt, and my left hand felt colder than my right hand. When I slept, I started to experience pressure on my left side. I questioned whether my nervous system was the cause of the problem.

When I was young, I often suffered from diarrhea, and even in college I always complained of stomach pains and headaches. But these were minor ailments. In fact, indigestion was a frequent cause of my headaches.

When I was studying in the U.S., I played tennis and exercised a lot, so I maintained a rather good level of health. Even after I became a professor, I walked back and forth to lunch on weekdays when I was on campus. At home on weekends, I didn’t walk after meals and was apt to suffer from indigestion. I usually took a digestive tonic called Hwalmyeongsu that I purchased by the box. Anyway, since I was a kid, I had trouble with digestion and falling asleep. My health may have suffered as a result.

By the spring of 2019, the tremor was clearly noticeable. But I still didn’t take it seriously. I believed it was just a case of the shakes and that it would pass quickly. After all, I’d already undergone a health checkup earlier that year, and had also received a diagnosis from a neurologist who assured me it was just a hand tremor.

At that time, I reported feeling a sudden loss of strength in my left arm, which got better, although a slight numbness persisted, and my hands felt cold. For that reason, a brain MRA was requested as an additional test. The doctor said that there was a bud-like cluster of blood vessels in my brain, but it was very tiny and posed no problem. The overall assessment was that the head tremor wasn’t a huge matter and there was no need to be concerned.

But the tremor grew worse over time. My neck and back muscles violently contracted and knotted up. I was trembling so badly that it made me perspire and moving became difficult. I was admitted to the hospital again and underwent a thorough examination. My neck and back muscles were involuntarily contracting with violent spasms, and I wanted to know how to stop it. The biggest problem wasn’t the insomnia; but if I lost sleep, my condition would worsen the next day, and the symptoms grew more severe over time.

Looking back, part of the problem was caused by the fact that I was overworked in the spring of 2019. I typically went to bed at two or three in the morning that semester. I couldn’t sleep, even if I didn’t drink coffee, if the slightest thing was bothering me. From February to May especially, my workload increased dramatically, and I got even less sleep than usual.

At the time, I was getting ready to publish a Korean translation of La dynastie rouge by the French historian Pascal Dayez-Burgeon. I proofread it five times by myself, in an effort to make a better book. If sleep wouldn’t come, I’d work through the night; or I’d go to bed and wake up at the crack of dawn to continue working. The fifth and last revision was enough to make me sick. I’m fairly accustomed to reading on a daily basis, but this was the first time in my life that I experienced such a reaction. I worked very hard on the translation, but when the author came to Seoul in October, I was physically unable to attend any of the events, including the presentations the author gave.

Also, there was a succession of academic events taking place that spring. Following my presentation at an East Asian Sociological Association meeting in Japan, I met Japanese academics to discuss the new worldwide research network we’d launched. Immediately after that, I assisted in organizing an academic gathering for which a British sociologist had been invited. This event proved to be very demanding because we had to accompany him to several universities and locations. Early in May, my husband and I had to host Chinese professors for a number of academic events and even give presentations in English.

By March, the body tremor had become much worse, and I experienced muscle contractions, making my neck and back uncomfortably stiff. The tremor was so violent that anyone holding my hand would feel it pulsate in their own body. Additionally, I would frequently get fevers because of the chaotic physical tos and fros. Even though summer was a long way off, I felt so hot that I couldn’t survive without air conditioning. I sweated so much that the back of my head and neck were often dripping wet. Also, when I was lying down immobile for extended periods of time, I experienced constipation and had major difficulties using the restroom.

In addition, I had to make a presentation at the Joongmin Forum in May. The day of the presentation, my body was trembling, worsened by the fact that I hadn’t gotten any sleep the night before. I could hardly function with all the throbbing and the stiffness. It made eating, using the computer, or composing an instant message on my cell phone all but impossible, let alone a public speech. My left shoulder hurt like it had never hurt before, and I was drenched in perspiration.

I couldn’t go to my office anymore because I was physically exhausted. I was able to carry on with my daily activities up until April, but by mid-May, it was out of the question.

PART 1

• • •

Why Is This Happening to Me?

CHAPTER 1

• • •

"This Is Functional Movement

Disorder Syndrome."

The Obscure Disease Called ‘a Syndrome’

Exactly what kind of disease is it? Does it have a name?

Does Anyone Know About This Illness?

I SANK LIKE A CLUMP OF gray ash. On May 15, 2019, after exhausting all of my energy making a presentation for the fiery Joongmin Forum that year, my daily existence came to an end. Instead, angry muscles wrangled and clambered under my skin.

It’s not some serious disease, I hope?

Don’t worry. You’ll get an answer when you go to the hospital.

What if it’s Parkinson’s, or . . . ?

The names of all the diseases I knew began to flash through my head, and with each name, the fragmentary information I’d learned about each one heightened my fear, which was fast building up like a snowball. My terror was approaching the point of panic.

I knew I needed to visit a hospital, but I was unsure about which facility or type of physician to choose. When I did an online search of my symptoms, I couldn’t figure out whether it was Parkinson’s disease or simple tremors.

I personally or indirectly questioned a number of doctors about it. Several mentioned the medication Synthyroid, which I’d been taking since my 20s for hypothyroidism. They speculated that it might be a side effect of taking the medication in excess. So, from May 17, I cut my thyroid medication dosage in