日本基督教団 The United Church of Christ in Japan

【December 2018 No.400】Living With Illness Ⅰ: A Woman's Desire to Continue Playing the Piano


 by Ono Tomoko, member   Oki Church, Shimane Prefecture, Nishi Chugoku District

Nine years ago, when I was about 50 years old, I was suffering from various undiagnosed physical problems. I got tired easily; I felt lethargic; and my body hurt in various places. Furthermore, when it was cold, the tips of my fingers became white. My doctor at the hospital in Matsue told me that these symptoms were the result of scleroderma, a collagen-related disease. He further explained: “This disease cannot be healed with current medicine. We suspect that you have systemic scleroderma. Your blood flow worsens when it is cold; that is why your fingertips turn white. When that happens, be sure to warm up your fingers right away. If you don’t, your fingers may stiffen and become unable to move again. If this proceeds to your internal organs, for example, to your lungs, it could be life-threatening. Therefore, we are going to give you a large dose of adreno-cortical hormone.” When I heard this, my mind went blank.

I work as a teacher in a nursery affiliated with Oki Church, which is in Nishinoshima Island in Oki Islands. My original field of study, however, was piano, and I sometimes performed neighborhood concerts. Eventually, as my children grew up, I began to dream about spending more time on music than on my regular job; but I also often wondered whether or not I would still be able to play the piano. With fear and trepidation, I raised this question with my doctor, and this is what he said: “Stimulating your fingertips is not good. Though quitting the piano would be stressful for you, it is nevertheless very important that you change your lifestyle.”

I was speechless. I couldn’t understand why this was happening to me. Why did it have to be a sickness that limits my hand movements? I was sad and was often moved to tears. I spent much time praying, hoping for healing. My husband and family prayed fervently for me, and since I was in such a gloomy state of mind, a friend of mine who had heard that I was sick sent me a letter. In the letter, she said, “It’s regrettable that I won’t be able to hear you play anymore. I’m sending you a pair of cotton gloves in the hope that they will enable you to take care of your hands.” Inside the package was a cute pair of gloves. As I put on the gloves I felt a strange sense of happiness, and I wanted to play the piano. As I began to play a piece that I myself had composed, a soft sound that I had not previously been able to produce came out naturally. A Bible verse (II Cor. 12:9) resonated in my heart: “But he [the Lord] said to me [the Apostle Paul], ‘My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.’”

I was reluctant to talk publicly about my illness, but for reasons related to my work, I had no choice. People with the same disease, some who lived on the island and others who lived elsewhere, began to contact me. I learned that there were people who were hiding their conditions from others in their workplaces and communities. There were also people who even found it hard to go outside. At that time, I was part of the prefectural collagen disease organization; however, because I lived on an isolated island, it was difficult for me to participate in the organization’s activities. Four years ago, however, I started an organization on our island for patients with this disease. I began this organization because I wanted to create a place where people with this same disease could congregate freely. I took this step after consulting with local doctors and health-care workers. We meet together twice each year to drink tea and participate in everyday conversation. Since doctors and health-care professionals are present at these meetings, we are able to discuss symptoms and treatment options about which we have questions. Meeting people who are experiencing the same stage of the disease has taught me and awakened me to the harsh realities of this disease. However, at the same time, these people’s approach to life has been encouraging to see.

When facing the reality that I cannot do something, I think it is necessary to trust the people at church and the various specialists I am meeting, whom God has given me, and to depend on others. In addition, I have learned that having peaceful connections with a wide group of people and relying on those around us who are experiencing similar situations is important for patients.Though my family has supported me fully, their support alone would not have been enough.

The church of which I have been a member, Oki Church, is a very small congregation. However, we pray for each other’s disabilities and sicknesses, and we look at our problems in the broader context of social structures and facilities. Oki has no medical specialists for different diseases, but there have been times when I have come to realize that nevertheless, I can live my life here on this island. The island’s doctor asked me what I wanted to do from this point forward. When I told her that I wanted to play the piano she replied, “I will help you to become able to achieve that goal.” Moments like this show me that staying on this island is a reasonable choice for me. During rehabilitation for rheumatism, which developed as a complication of my primary disease, the occupational therapist often told me that although doctors want their patients to get better, even more than that, want them to live a vibrant life.

Life on the island includes having to deal with a few busybodies, and there are also inconveniences. I have come to realize, however, that the island is also a society that gives one everything he or she needs. I will continue to play the piano and write music. Music is a gift from God. I am thankful for all the encounters I have had with people, and I am glad that God has guided me to this place. (Tr. DM)

—From Shinto no Tomo (Believers’ Friend), September 2018 issue

Summarized by KNL Editor Kawakami Yoshiko















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