【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

 

病と生きる:ピアノを弾き続けたい

大野智子(おおのともこ)島根・隠岐教会員

 9年ほど前の50歳になるころ、私は原因不明の体調不良に悩まされていました。疲れやすくだるい、体のあちこちが痛む、寒いと指が真っ白になるというものでした。それが膠原(こうげん)病の一種である強皮症から来ていることが判明し、松江市の病院で医師から言われました。

 「この病気は現代の医学では治せません。あなたには全身性強皮症が疑われます。寒いと血流が悪くなるので指先が真っ白になりますね。すぐに手を温めること。悪化すると指が硬化して動かなくなることもある。肺など内臓に進んだ場合は、命に関わるので大量に副腎皮質ホルモンを投与します」。頭が真っ白になりました。

 私は隠岐の西ノ島にある隠岐教会の関連施設である保育園で保育士をしていますが、もともとピアノを専攻しており、たまに地元で小さなコンサートをしていました。子どもたちも成長したし、そろそろ仕事よりも音楽に力を入れたいという夢がありました。もうピアノは弾けないのだろうか。恐る恐る尋ねると、こう言われました。「指先の刺激はよくない。やめたらストレスになるだろうなあ。でも生き方を変えるということも大事ですよ」。

 愕然(がくぜん)としました。なぜこんな病気にかかったのだろうか。しかもなぜ手に制限がかかる病気なのだろうか。悲しくて涙があふれました。私はただひたすら治ることだけを願い祈りました。夫も家族も一生懸命祈ってくれました。

 しばらく悶々(もんもん)としていると、病気のことを知った知人が手紙をくれました。「あなたの演奏が聴けなくなるのはとても残念です。せめて手を大切にと思い、綿の手袋を送ります」とあり、中にかわいらしい手袋が入っていました。それをはめると、何だかうれしくなってピアノが弾きたくなりました。そのまま自分の作ったピアノ曲を弾くと、今まで出せなかった柔らかい音が自然に出てきたのです。私の心に聖書の言葉が響きました。「わたしの恵みはあなたに十分である。力は弱さの中でこそ十分に発揮されるのだ」(Ⅱコリント12・9)。

 病気を公言することには抵抗がありましたが、仕事上、公にする必要がありました。島内外の同じ病気の人から連絡が来るようになり、職場や周囲に病気を隠して一生懸命働いている人やなかなか外に出られない人がいることを知りました。私は県の膠原病患者会に入会していましたが、離島に住むため、なかなか参加できません。同じ病気を持つ人たちが気楽に集う場所があったらいいと思い、島の保健師や地元の医師に相談の上、島の患者会を4年ほど前に立ち上げました。

 年2回の定例会はお茶を飲みながら普段のことを話したり、保健師や医師が参加するので、気になる症状や薬のことなどを相談できます。同じ病気の病状が進んだ人と出会い、病気を受け入れることの厳しさを教えられる一方で、その生きる姿勢に励まされることもある場です。

 できないことが増える現実に向き合うときに、神さまが与えてくださった教会の人々や今出会っている専門家たちを信頼すること、広く緩やかにつながり、依存し合うことが病者には必要だと思います。家族は私を支えてくれていますが、家族だけでは崩壊してしまうこともあるのです。

 私の所属する隠岐教会は本当に小さな群れですが、障害や病気について互いに祈り、また問題を社会制度や施設に結びつけることをしています。

 隠岐には難病の専門医がいませんが、隠岐で暮らしていけるなと思ったことがあります。島の医師に「これから何がしたいですか」と聞かれ、「ピアノが弾きたいのです」と答えると、「ではそうできるようにお手伝いをしましょう」と言われたことです。併発したリウマチのリハビリで、作業療法士の方からこんなことも言われました。「僕たちは患者さんがよくなることを望んでいますが、それ以上に元気に生活できることを望んでいます」。

 島での生活は、お節介があったり不自由なこともあります。しかし本当に必要なものが与えられている社会でもあることにも気づきました。私はこれからもここでピアノを弾き、曲を作り続けていきます。私にとって音楽は神さまからの贈り物です。この場所に神さまが導いてくださったことに、そしてさまざまな出会いに感謝しています。(信徒の友9月号)川上善子KNL編集委員長