1 Liter of Tears (Ichi Litre No Namida)

EXTRAS II: First meeting with Little Aya

I had just returned from a three-year stay in the United States. I was working in the 4th Study Room of the 1st Department of Internal Medicine at Nagoya University Hospital (now the Department of Neurology) with Professor Itsuro Sofue. I was helping to analyze nationwide data on sinocerebellar degeneration. I also wrote the professor's findings about the outpatients in their case records.

One Monday, a junior high school girl with a short bob was brought to the examination room by her mother. In recent years, the number of specialists who examine nervous diseases in pediatric departments has increased.

So it was unusual for a child to come for a consultation at the Department of Neurology. I learned later that Aya's mother was a nurse working for a health center in Toyohashi. She had discovered that the professor was the leader of 'the research team on sinocerebellar degeneration, a disease specified by the Ministry of Health and Welfare.' That explained why Aya had bothered to come all the way to our Department of Internal Medicine as an outpatient. It had been her mother's decision.

On the medical chart of the girl who sat in the middle of that bright consulting room in the early afternoon was written 'Aya Kito, 14 years old.' Her small round face with eyes wide open gave the impression that she was a bright girl. Her eyes looked worried as she glanced in turns at the professor and her mother as they talked.

After the first examination, the professor diagnosed spinocerebellar degeneration. He explained to Aya's mother about the disease. He gave instructions on how to get a CT scan for Aya to check the inside of her brain, a center of gravity oscillation test, and an eyball motion test. Those tests would provide a better analysis of the symptoms. He asked Aya to come back as an outpatient about once a month to check her condition.

I was impressed with the positive attitude of both Aya and her mother despite the great anxiety pressing down on them. I felt a strong affinity with them. Soon I came to have my own outpatients in a different consulting room, so I no longer had the chance of seeing Aya being examined. But we often went to the hospital on the same day and met each other in the corridor.

Aya's mother grasped the progress of the disease very well. She sometimes told me in a sad voice that Aya's swaying was increasing and she had stumbled, or that her writing had become more disordered. Sometimes she also reported happily that Aya was doing well at school, was getting good grades, and had had an internal school report praising her good attitude, so she could enter a public high school. She also told me Aya had passed the 3rd level of the Practical English Proficiency Test. I kind of championed Aya who was doing her best to fight against her disease. "The third level of the Practical English Proficiency Test is quite difficult, you know," I said proudly to my colleagues, as if she was my own daughter."

One day, around the time when the cherry blossoms in Tsurumai Park were budding and the light pink petals were started to emerge, Aya's smiling face appeared round the corner of the curtain of my consulting room.

"Dr. Yamamoto," she said, "I passed the entrance exam!"

As I replied "Congratulations and good luck!", I couldn't help wishing that her disease would at least not develop too far before her high school graduation. That also encouraged me to press on with my research on a possible remedy that was being developed.

The high school that Aya entered was located in Toyohashi in Aichi Prefecture. It was oriented toward preparation for university entrance examinations. Her lively high school life began. But soon Aya's balance worsened. She could no longer commute to school an a crowded bus every morning. Even though her mother was busy as a nurse, she took Aya to school by car every day. Aya sometimes fell over in her school days and came to the Outpatients' Department with cuts on her knees or a lump on her forehead. Her mother's face darkened momentarily as she told me that Aya's scores at school seemed to be getting worse little by little.

But immediately after that she smiled cheerfully and said, "But because her writing is so slow during tests, she runs out of time. So it can't be helped, can it?"

In fact, Aya couldn't take notes properly. She also had to change classrooms for different lessons, and was always late for classes because her movements were so slow. Her high school apparently regarded that as a big problem. However, her classmates helped her a lot, carrying her textbooks or holding her hand when they saw her desperately trying to walk. I can imagine how grateful she was, but also how frustrated she must have felt about her disabled body. However, she was always smiling and her big eyes were active in her face as it gradually went thinner and smaller.

It was decided she should enter the hospital during her summer holiday in order to try out the new medicine.