[A Sip of a Book] A Son Living in a Fragmented World, a Story of a Mother Who Became a Tree

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This is an essay written by a mother whose son was diagnosed with schizophrenia, documenting the past 18 years. It tells the story of the battle with the illness, described as "a time of resistance, constantly trying to return to the center to avoid being thrown out of life." It shares intimate stories from the anxious period of lacking information about the illness and treatment methods, through life in a protective ward, to becoming a thirty-year-old young adult after discharge. Centered around the keywords illness, care, and independence, it unfolds realistic concerns and intimate stories of living as a family member of a person with a chronic illness.

The child said that bad people were gathered in front of the apartment shopping area. They threatened him and kept telling him to come out. They said those people would harm mom and dad. He ran out. I went to the shopping area. I walked around the apartment complex once, twice, three times. There was no one anywhere who could threaten the child or our family. What on earth is going on? What is this situation that has befallen us? I must pull myself together, keep my center. It was a message to myself.

The child's stay in the pediatric psychiatric ward lasted from the 6th grade of elementary school to the 3rd grade of middle school, with 12 repeated admissions and discharges. It took a full 3 years and 6 months to find the right medication for Namu. In the 3rd grade of middle school, he commuted daily from his school in Paju, Gyeonggi Province, to a hospital in Seoul. (Omitted) After consulting with the medical staff, it was decided that he would commute from the hospital to school. The medical staff knew this illness would be long-lasting. And especially for pediatric patients, a school diploma is important. Namu changed into his school uniform in the hospital room, traveled 1 hour and 30 minutes, attended a 1-hour class, then left early and returned to the hospital. That’s how the child graduated from middle school.

I do not know this young man's anxiety. I cannot even imagine the fear that the world might disappear. Nevertheless, I have to keep speaking. There are people who suffer from such symptoms, people who cannot do anything when gripped by this anxiety, and young men who appear physically healthy but have difficulty with daily life due to these symptoms. (Omitted) Even within this anxiety, this person manages life and takes care of himself.

Voices are heard within the delusions. For the patient, these voices are real. "Come out, come out." The bad people who want to harm mom and dad keep shouting to come out. Namu still sometimes asks if these voices are real. "Mom, there are no people bothering you, right?" I say no, no one is bothering mom and dad. Even if I say no, when the auditory hallucinations come, anxiety seems to follow. Namu paces the living room. He repeats going back and forth endlessly. Sometimes for 7 hours, sometimes for 2 hours. Night comes. The food gets cold. And so the day passes.

There is neither a cure nor a definitive answer for schizophrenia treatment. Therefore, it requires patience to support the patient, observe their response to treatment, and help maintain their daily life. Treating schizophrenia is like running a three-legged race with an unknown finish line.

If the family is the only one who can physically care for the patient, how long can the family endure? Care relying solely on private structures is unsustainable. If the community and society do not share the care of schizophrenia patients, the reality will become one where serious incidents frequently reported in the news become widespread. Demanding that families provide 'sole care' is tantamount to telling them to endure until they collapse. And since this child is not just my child but a child of our society, a community that shares care as members of society is necessary.

Disability registration became a social mechanism that allowed Namu to live less lonely. In this way, Namu is gradually creating a path toward self-esteem and independence. This was possible by accepting that illness is part of life. There is a life lived with illness, and that life can also be beautiful.

Namu kept moving and searching. It seemed to say, "Here I am, living with illness, taking medicine, and getting injections." Graduating from university might not seem difficult, but for Namu, those six years were a continuous challenge. In February 2023, on a beautiful winter campus, Namu threw his graduation cap into the blue sky. We applauded loudly for Namu, who worked harder than anyone else.

Now I know that building perfect days is both practice and treatment. For very ordinary perfect days, the child does something every day, and in doing so, we become Namu. Not a flower that blooms and withers quickly, but a tree that stays in place for a long time.

My Child Lives in a Fragmented World | Written by Yoon Seo | Hankyoreh Publishing | 200 pages | 17,000 KRW