My Disease Makes Life Seem More Precious
by Hoshino Takuya, member Sugamo Tokiwa Church, Tokyo District
I am a 47-year-old man, and since May 2014, I have been commuting to a hospital three times a week for dialysis treatment due to chronic renal failure caused by an, as yet, undetermined condition. I realized that up to now, I have never really prayed to God to cure me, to heal my disease.
In dialysis treatment, blood is filtrated by machine through two tubes inserted into blood vessels in the arm, and each session takes about four hours. During that time, I lie down in bed and watch movies on DVDs, or I sleep. In four years, the number of movies I have watched has grown to be at least 800. There are even times when I am scolded by medical personnel for snoring loudly! I commute to a hospital that is a five-minute walk from my home, so in my everyday life, I haven't been particularly inconvenienced by having to undergo dialysis. Dialysis treatment involves withdrawing and reinserting blood. Before beginning dialysis I thought it would be scary and painful, but actually, it is relaxing.
Perhaps the reason I haven't been praying for healing is that in my case, the disease and dialysis treatment itself is not so difficult physically. But I was afraid of living as a dialysis patient and as a person with a handicap in a society of healthy people. I thought, "I do not want to live for so long, just for the purpose of having a long life, if I have to live connected to a bunch of tubes." I cannot deny that this thought was a reflection of the way I looked at the existence of sick people and people with handicaps who are living now. In order to avoid being seen that way myself, I denied the fact that I was a patient with an incurable disease. I pretended to be a healthy person even though I was a person with a handicap. As much as my physical strength allowed, I began going to a gym, swimming in the pool, and running at night. With a saxophone in hand, I also began going to a bar to participate in jazz sessions. Basically, I wanted to be considered a member of the society of healthy people and thought I could achieve that by distancing myself from the typical lifestyle of a sick person.
I thought, "I do not want to live, if I have to live connected to a bunch of tubes." And I did not even doubt my assumption that such thinking protects my own dignity. At present there are still just two tubes, but it seems that "life connected to a bunch of tubes" is becoming more of a reality than before. However, I certainly do not think that I want to quit living. Rather, I think that I want to live even more. It is ironic, because I thought that getting close to death meant that as the possibilities in one's life decrease, one's obsession with living would also decrease.
Even though I cannot even see what kind of work I should do, and though the reality is that I have this disease, I still think that I want to live. I think the reason I want to live is just because I do not understand well the task of a living person. Perhaps I want to live because the kind of work I thought I should do and the kind of work God is entrusting to me are different. I have discovered that though we only see reality as being "closed," God announces that it is "open." Let's just say the reason is that God uses us as the world's debris in a way that we cannot even imagine.
Though we know that life and death belong to God, we human beings have a dark desire to control one’s life and death, and other people, and to behave as the ruler of life and death. I think that is the reason for the following phenomenon: when our health is in a serious condition, we request to be notified of the fact, yet it is common for us to hesitate to inform our own close relatives when they are in such a situation.
Living is a process of discarding and giving up on various things but, of course, for a person with a disease, the rate of that process will be faster than that of other people. The number of tubes connected to me will not become fewer than at present; rather the number will increase more and more. Just as I thought four years ago when two tubes were connected to me, the more tubes there are, the more life becomes a precious thing to me. In spite of the way reality appears, we have the strength, the ability, and the will to go on living. I think this understanding itself is from the "Word which was in the beginning," and it is this that supports me even when I have a twisted view of myself. (Tr. KT)
—From Shinto no Tomo (Believers’ Friend), September 2018 issue
病と生きる（２）
星野拓也／東京・巣鴨ときわ教会員
私は、47歳の男性で、原疾患を不明とされる慢性腎不全(chronic renal failure)により２０１４年5月より透析dialysis治療のため、週に３度通院をしていますが、今日まで「病気を治してください、癒やしてください」と祈ったことがなかったことに気付きました。
腕の血管に刺された２本の管を通じ機械で血液を濾過ろかする透析治療は、１回４時間ほどかかります。その間私はベッドに寝転がってDVDで映画を観るか、眠っています。４年間で観た映画は８００本以上になり、いびきが大きいと医療者からお小言を頂戴することすらあります。通院先は自宅から徒歩５分の所で、透析による日常生活の不自由はほぼありません。透析を始める前は、血を入れ替えるという治療がいかにも恐ろしく、苦しいものと思っていたのですが、現実はのんびりしたものです。今に至っても病の治癒を祈らないのは私の場合、病や透析治療自体が肉体的に、それほどきつくないということかもしれません。
むしろ治療以上に私が恐れていたのは、透析患者という難病患者、かつ障害者であることによって、人生においてさまざまな選択肢が少なくなり、社会の周縁に追いやられてしまうことです。言い換えれば、健常者社会の中で患者なり障害者として生きていくことへの恐れです。「延命などのため、管だらけになってまでいつまでも生きていたくない」と思っていました。その思いは、今生きている病人、または障害者といった存在に対する私自身のまなざしそのものの反映であることを否定できません。(自分の)そのまなざしに復讐ふくしゅうされないように、難病患者でありながらそれを打ち消し、障害者でありながら健常者のように振る舞うのです。私は体力の許す限りジムに通い、プールで泳ぎ、夜に走るようになりました。サックスを片手にバーに赴き、ジャズのセッションに参加します。つまり自分自身が病人らしいライフスタイルから遠ざかることで、健常者社会の一員とされたいと思っているのです。そこに在るのは健常者社会に対する肯定に、他なりません。
「管だらけになってまで生きていたくない」それが自らの尊厳を守ることだと疑いもしませんでした。しかし、現在２本とはいえ以前よりも管だらけに近くなったのですが、決して生きるのをやめたいなどとは思わず、むしろより生きていたいと思う。私の考えでは死の側に近づくことは、人生における可能性が狭まる分、生への執着も薄れてくるはずでしたのに、おかしな話です。
なすべき働きも見えない、病という現実の中にある、にもかかわらず生きていたいと思うのは、結局私は生きている者の仕事ということについて、よくわかっていないからだと思うのです。私がなすべき仕事だと思っていたものと、神に委ねられた仕事とが異なっているからこそ、生きていたいと思うのかもしれません。神は私たちが「閉ざされた」と見るしかない現実に、「開かれた」と告知されることを知りました。私たちが思いもよらない仕方で神が私たち自身を世界の破片として用いてくださるが故だと言えましょう。
生死が神に属するものであると知っていながら、人間にはどこかで自分や他者の命に対して操作を働きたい、命の主として振る舞いたい暗い欲望があるのでしょう。自らが重篤な状態にある場合は告知してもらいたいと願いながら、自分の身内には、告知をためらうことが多いのもそのためだと思います。
生きていくことはいろいろなものを捨て、諦めていく過程ではありますが、病にある人はそのスピードが周りの人よりも速いはずです。私につながれた管は今より減ることはなく、どんどん増えていくでしょう。４年前、２本の管につながれて思い至ったように、管が増えれば増えるほど、いのちが一層愛いとおしいものになっていくのでしょう。私たちには、(現実の姿)にもかかわらず生きていくことのできる力、働きがある。思いがある。これこそが私自身の澱よどんだまなざしに、どこまでも抗っていくことのできる「はじめにあったことば」なのではないかと思うのです。（信徒の友9月号より）
