Monday, April 25, 2011

Rainy and Sunny Days of My Life.


We had an absolutely gorgeous sunny day on Saturday, and now for the entire week until next Saturday, the forecast is rain. Typical Seattle.

Personally, I don't mind rain. Neither does Daniel. We kind of like looking at it outside our bay window - it gives trees many different shades of green, more so than a washed-out sunny day.

The only drawback is that rain hurts. On a day like this, I'm reminded how much fibromyalgia can hurt. I'm not sure if it's due to the low air pressure or the wetness or the temperature (or combination of all three), but a cold rainy day tends to hurt like hell. I feel like I went to some masochistic boot camp and did a day-long circuit training in the mud yesterday, subsequently beaten with a stick at a Zen temple, after being a couch potato for 20 years. My whole body is sore from head to toe, resulting in walking gingerly to protect the bottom of my feet.

There is a silver lining to all this, however. My noticing this pain means that I don't hurt like this all the time. I used to wake up feeling like this almost everyday, and that's not the case anymore. My pain is more localized and manageable much of the time without heavy drugs. Now that's progress.

Like the many shades of green we can see in the rain, today I can see many shades of pain. On some sunny (or adrenaline-laced) days, the shades of pain are washed out and less visible. But it weren't for the rainy days, we wouldn't know how great sunny days are, would we?

So I'm thankful, on this rainy day, for the sunny and rainy days of my life.

-A

二日前の土曜日は快晴、素晴らしく青い空でしたが、
今週は土曜日までずっと雨の予報です。さすがシアトル。

個人的には、雨は嫌いではありません。ダニエルも然り。
出窓の側に座り、外の雨を眺めるのが好きです。
色が全て一段明るくなり褪せてしまう晴れの日よりも、
雨の日は微妙に異なる、木々の様々な緑色が見えます。

雨の困るところは、体が痛くなること。
こんな日は、線維筋痛症がどれだけ痛いか思い知らされます。

低気圧のせいなのか、湿気のせいなのか、低い気温のせいなのか、
それともそれらが全部相まってのことなのか分かりませんが、
寒い雨の日はとんでもなく痛いです。どんな感じかというと、
20年くらい運動不足でいた後に、足をとられる泥の中で
ビリーズブートキャンプ(←古い)に参加し、
筋肉痛になった後、禅寺に行ってバシバシ叩かれた・・・
という非常にマゾなイメージです(笑)。

文字通り頭から爪先まで痛いので、
こんな日は足の裏もかばって、
カーペットの上もそろそろ〜っと歩きます。

でもこんな状況にも、希望の光はあります!
というのは、今日はすごく痛い日、と特定できるということは、
他の日はこれほど痛くないということだからです。

以前は、毎日のように起きるとこんな感じでした。
でも今は、強い薬を飲むこともなく、
痛みももっと部分的でなんとかなる。
これは大変な進歩です。

雨が降っていると色々な明るさの緑が見えるように、
今日はいろいろな種類の痛さを感じます。
晴れている日やアドレナリン・ドーパミンが
たくさん出ている日には、痛みはは色褪せて見えない。
でも雨の日がなかったら、晴れの日もありがたく感じませんよね。
すごく前より良くなっていることに気付かなかったかも。

だから今日こんな雨の日は、晴れの日、そして雨の日も、
ありがたいんだなあ、と思うのです。

-英

Wednesday, March 23, 2011

The second biggest headline: "Thank You."


What made me cry today:

I was watching the Japanese news (again. I know. I should stop), and watched this 12-year old in Iwate prefecture memorialize what happened to her on 3/11. She was making a home-made, hand-written 'newspaper' to process and preserve what she's gone through. The biggest headline was naturally "Tsunami Came," as the tsunami swallowed and wiped away her home. But the second headline was "Thank You." She lives in the elementary school she goes to, which became one of the local evacuation shelters - and she wanted to thank those who brought her family food, and also thank the people from the local community, who were helping at the shelter.

She wrote:

"I'd never thought such a big earthquake, or a tsunami, was possible. It was scary. We lost everything. But everyone in my family is alive, so I'm glad about that."

"Because of the nice people from the Self Defense Forces, my family is able to eat 3 times a day. Although we lost our home, there are people from the local community who are helping us at the shelter, and with their help, we'll be able to try hard [to rebuild our life again]. So I want to say to all of them, 'Thank you.'"

She graduated from her elementary school yesterday, in the gymnasium where they sleep, surrounded by the boxes of essential supplies like bath tissues. She couldn't wear the nice clothes her family prepared, but she was happy she could graduate in a graduation ceremony.

Waaaah. (T-T) ← tears running down my cheeks

In another segment, this 18-year old was trying to clean up the rubble. No one was paying him to do it. Every house and building in his town looked like piles of matchsticks. He apparently had secured a job in Tokyo after he graduates from his high school. He said, "I thought I'd move to the city and make some good money, but I think my hometown is more important now. I want to be here and help rebuild it."

Waaaah. (T-T)

We are so spoiled sometimes (OK, lots of times). As we get older, we start to believe we are entitled to various luxuries, and stop appreciating what we have. I think we could learn a thing or two from these kids, who lost just about everything. (Now that I'm old, I think of 18-year olds as kids - scary!)

-A

Tuesday, March 22, 2011

Life continues in Fukushima - 福島の生活は続く。

Oguninuma Wetland in Fukushima.
雄国沼湿原

We were supposed to depart to Japan today (3/22).

Obviously that didn't happen for a number of reasons, not the least of which is the fact we can't exactly reach Fukushima to see my family. The bullet train service remains closed, the freeway is open to emergency vehicles only, and even if we were to brave the side roads, we wouldn't be able to buy gas. (Blast!) Oh, did I mention my family's home falls in the 50 miles evacuation area imposed by the U.S. Gov't?

I was lucky. My family's home remained intact (sans the stone fence that became a pile of rubble - see below), and everyone is alive and well. They even have running water now, after being out of it for a week.

Still, the situation at the Fukushima Daiichi nuclear power plant remains tense, and there is no end in sight for this plant fiasco. My brother's school became one of the evacuation sites for those who live close to the plant, so he is working there every day in lieu of his normal teaching job.

People in Fukushima seem to be remaining fairly calm, considering what they are going through. I hear there's mild panic in places like Tokyo, but since people in Fukushima don't have many choices, they are staying put, trying to continue or establish their everyday life (even at shelters). When they had to line up for water for 4 hours, my mom said everyone was smiling, chatting, and in general seemed content about it. She attributed it to Fukushimans' (←made-up word) laid-back disposition.

It's not exactly an urban area where my folks live, so usually there is a lot of driving. Since there is no gas available for purchase, they've been walking a lot (including going to get water when water was scarce). They are making the best of it, saying, "It's giving us a good exercise!" (Though they did need it.)

People have asked me, "Don't they want to get out?" "How about coming to Tokyo?" "Do they want to stay in Seattle for a while?" These are all reasonable questions to ask.

The answer is, no, they don't want to get out of Fukushima. Aside from the fact they can't physically get out on their own (no train, no road, no gas), even if they had the resources, they'd choose to stay there unless evacuation is absolutely necessary.

Fukushima is their home. My father and brother are looking forward to teaching when the schools finally open (maybe in May instead of April?); the kids would go back to school; my mom will be an official Fukushima flower guide volunteer (she trained months for it!) - and their life continues in Fukushima.

Life is in fact going right now - my sister-in-law realized the kids have had a week-long vacation inadvertently, so she's making them study at home. Come to think of it, since my family consists of teachers (my father, mother, brother, and sister-in-law), they could probably try to teach the curriculum if they so chose.

When I was talking to my mom about the lack of fuel, more than going to the store or getting around, what she cared about the most was: "I feel bad we couldn't pay a visit to the [family] grave." Amidst all this craziness, I had forgotten about Ohigan. My mother obviously didn't.

(For those of you outside Japan, the time surrounding the spring and fall equinox is called "Ohigan," which is a time to go to the family grave and honor your ancestors. In Japan, unless the grave is abandoned (because the family died off or something), the temple/cemetery doesn't keep up the headstone and its base structure that holds the clan's urns. The family does. Ohigan is one of the many times to do so. You go back home for it even if you live elsewhere.)

This really touched me. For my mom and many before her, Fukushima is *the* home, where they have Ohigan. They couldn't imagine leaving it. So I felt very silly to even bring up getting away from it.

People looking in from the outside may think, "Why would you want to stay there?" or "Why would you want to rebuild where it's dangerous/possibly radioactive?" I suspect most, if not all, of the people who evacuated from the area surrounding the power plant would want to go home if they could, and continue their lives. Because that is their home.

-A

Good thing they didn't have the car or one of the kids next to the fence!
車を塀の隣に停めてたり、子供が横にいなくて良かった〜。

実は今日(22日)、日本に一時帰国する予定でした。

当然ながら一番の目的は家族に会う事だったので、
新幹線、東北自動車道などなど使えない状態の今、
実家の福島に帰れない以上行く意味がありません。
普通の道をなんとか繋げて行くにしてもガソリンが
買えないのですからしょうがありません。
(八方塞がりとはこのことですね!笑)

家族が全員助かり、家も塀が崩れたのを除けば
ほとんどダメージがなかったので、
その点はとてもラッキーでした。
水も数日前に出るようになりましたし。

とは言え、福島第一原発では安心できない状況が
続き、完全な収束には時間がかかるでしょう。
兄の勤める高校は原発周辺の住民の方々の避難所となり、
普段の仕事の代わりにお手伝いをしているそうです。

母は福島の人はのんびりしているからだと言いますが、
この状況下でも、みんな意外に落ち着いているそうです。
東京などでは(特に、海外メディアから情報を得ている
人達は)「どうしよう逃げるべき?」と思案したり、
もう既に関西や海外に行ってしまった人達も
いるようですが、何しろ選択肢があまりない福島の人達は、
いるところが避難所であれ自分の家であれ、
今できるだけの「日常的」な生活をしようとしています。
先日、給水所で水をもらうのが4時間待ちだったときも、
みんなニコニコおしゃべりしながら待っていたそうです。

家族の住んでいるところはあまり人口密度が高くないので、
普段は車での移動が多くなります。
燃料が手に入らなかったので、水をもらいに行ったのも
もちろん徒歩ですが、「運動になって良かった!」とか
言っていました(運動はいいんだけど、待つのが寒そう)。

地震があって、原発がこんなことになってから、
いろいろな人に聞かれました。
「ご家族は疎開とか考えたのかな?」
「東京の親戚のところに身をよせるとか?」
「シアトルに来るっていうのはどう?」
どれも、もっともな質問です。

答えはどれも、「まさか〜」でした。
出たいと思っても出る手段がない、ということは
別にして、本当に危険で必要がない限り、
福島を出る事は考えていない、とのことです。

それは福島が家族の家で生活のベースだから。
父と兄は(5月になるのかいつになるやら)
学校が始まったら教鞭をとるし、
子供達は学校に行くし、母はふくしま花案内人
ボランティアがあるし、そして今ももちろん、
福島での生活は危機で止まっているのではなく、
続いているのです。

義理の姉は、ふっと気付いたら
一週間子供達が遊んで過ごしてしまったので、
勉強をさせ始めたそうです。←えらい。
(家族は全員教師なので、もしかしたら殆どの科目は
家でも学校のカリキュラムを教えられるかも!?)

昨夜、母とガソリンがないことを話していて、
彼女が不便を訴えたのは買い物のことでも
出かけることでもなく、
「ただ、お墓参りに行けなかったのが
悪かったんだけど」ということでした。
海外にいて忘れていましたが、
お彼岸だったのですね。

これには心を打たれました。
母や、福島にずっと暮らしてきた人達にとって、
福島はほんとうの「家」でありルーツなのです。
逃げ出す事なんて考えられないのも無理はありません。
それを、「シアトルに来られたら来たい?」などと
言った自分はとんでもなく浅はかでした。

外から見たら、「なんで危ない(かも知れない)のに
留まるの?」とか、「放射能が危険かも知れないのに、
またそこに帰るの?」とか思われるかもしれません。
でも、原発のまわりに住んでいて避難した人達も、
帰れるものならそこに帰って、また生活したいと
願っていると思います。

そこは彼等の家だから。

-英

Monday, March 14, 2011

地震のなかで、詠むうた。

東日本大震災、被災地の福島で母が詠んだ歌です。

「うた按ずる幸せ知れり子を孫を探す大地震(おおない)余震の中に」

Wednesday, February 2, 2011

What to learn from sweater pills - セーターの毛玉から学ぶこと。


I gave Daniel a sweater for Christmas. He likes it so much, he wears it way too often - as a result, it's ended up with lots of pills after just a month of wear. (-_-) Pills were everywhere!

So there I was the other night, trying to remove pills with one of those de-fuzzing combs, as well as a shaver. After about 10 minutes of effort, it looked much better. But as it got better, less noticeable ones stood out more: "Oh, there's some over here too!" "Oh wait, I missed this whole section." It seemed there wasn't an end to this.

These little ones didn't stick out when there were big pills everywhere - then they became suddenly bothersome when it became close to being perfect, with the big ones gone. I figured, life is a lot like this.

A few years ago, on many days I could barely walk. Just about a year ago, I was tormented by the sore throat (complete with white spots!) that lasted for almost two years. It seemed I couldn't function without the weekly immune support IVs.

Now, things are much better. I still can't talk very much or I suffer, but I don't wake up with a sore throat every day. Most of the time I can drive myself to appointments. I'm not afraid to walk around our neighborhood - I no longer fear pain would stop me in my tracks.

So compared to before, I'm like the sweater with much smaller pills. I still notice the painful fingers when I type or knit (or just browse); I still tire easily; my eyes hurt when I look at the computer screen. But you know what? Those things only happen because I'm able to be up and about doing things. Before, the bigger problem was that I could never get up and use the computer (though I still used my laptop sideways in bed).

Nowadays my chair gets much more use because I have enough energy to be upright. Complaining that my body hurts from sitting in it is not unlike chasing after the smaller pills on the sweater. The closer something is to being perfect, the more smaller flaws we notice.

Every time I'm tempted to complain, I will remember: Life is actually pretty good right now, just like that sweater.

-A

P.S. The crowning achievement(?) of the past year: Now I can carry my own purse much of the time! Though I do appreciate that I have a nice husband who is willing to carry it when I start hurting.

Sunday, January 2, 2011

A New Year and Back on the Earth - 地球に帰ってくる新年!

(For those of you who are curious:
this letter means "road" or "path.")

Happy New Year!

In Japan, a lot of people whip out their brush, paper, and ink, then do calligraphy on January 2nd, writing letters, poems, new years resolutions or haikus as their first and pristine effort of the year. They call it Kakizome (first writing). This is my Kakizome, in the form of a blog post!

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I recently read an interview of Laura Hillenbrand, who is the author of the novel Seabiscuit: An American Legend. It turns out, she was struck by chronic fatigue syndrome (CFS) too when she was 19 and in college. The time was 1987. She was exhausted, felt ill, and could barely get up because of severe vertigo. That state has continued till this day with ups and downs.

CFS is still little understood (researches have attributed it to various chronic infections in the past, but none of that has been proven to be the direct cause), but it was even less understood back then.

It took several years for doctors to diagnose her--she was first diagnosed with strep throat, stress, laziness, anorexia, depression, or even an "attitude problem." Jay Leno was calling it "the yuppie flu" on TV and making fun of it. It must have been devastating when she could barely move from the overwhelming fatigue, and all she wanted was to get up and be well again.

She says that her friends and family just expected that she would get better and go back to college--go back to where she was, and resume her old life. When that didn't happen, her friends, probably busy with their own lives, seemed to forget about her, and her family "offered a collective shrug." The only person who offered real support and kept her afloat was her college boyfriend, who later became her husband.

She describes the feeling of isolation: “It’s like you go to another place, like you’re not on this planet anymore,” “You reach a level of despair and suffering where you just don’t feel like the rest of the world.” She also says of the way she saw herself: "For a long time I felt stuck at 19 forever, stuck in the way people saw me."

I know those feelings all too well, and it made me cry.

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When I started this blog back in 2007, I almost had those same expectations as her family and friends. I was newly diagnosed with fibromyalgia syndrome (FMS), CFS, and celiac disease, and I thought to myself: "I'll beat these things, emerge victorious, and resume my life."

I think "resume" is the key word here that should never have been used. I never accepted that the life I have been living since then was the very life I got and ought to be living. I looked at my illness as a temporary state--a pause of sorts in my life. I looked at it as a setback that held me back from my true state, to which I would go back.

2010 was a tipping point, in that I became truly frustrated that this "temporary state" had lasted for so long. When it's been over 3 years, it seemed no longer reasonable to call it a pause. I presumed my family and friends probably expected me to get better in a couple of years, and since I couldn't do so, I felt like I was letting them down. My other presumption was that I was only an acceptable person in my old state: healthy, with a career and/or school to go to, zipping around from place to place with purpose.

Like Ms. Hillenbrand, I felt like I dropped from the face of the earth, like I wasn't part of the rest of the world anymore. My expectation of "what should be me" was stuck in 2006 before I first got sick; I used to think I'd go back to that version of me, and somehow make up for the time I lost in between. Except that wasn't really possible. And in a state of depression, I assumed that was everyone else's expectation, too.

Of course, many of these presumptions were mine. My family and friends have been far more supportive than the experience Ms. Hillenbrand describes, and luckily, I was diagnosed with various conditions far more quickly than she was. Yet, the feelings that accompany chronic illnesses transcend time, culture and place. One of the most prominent is the tremendous feeling of guilt that you are not getting all better to go back to being the person that you were before you got sick.

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So my new year resolution is this: Less guilt! And to celebrate the life that I have. I'll try to throw out the presumptions and self-imposed timelines, and cherish what I do have: A comfortable life with a husband who loves me in a town we both love, loving family and friends, and three loving cats who've been with us through thick and thin. I also have my mind that lets me write. I couldn't ask for much more than that.

Life is not perfect. Even when I hurt physically or feel exhausted, I will embrace that as my present state and work with the hand I've been dealt with. I will be Me: Version 2011, and no longer look back to the old Me: V. 2006.

-A


明けましておめでとうございます。m(__)m
舌足らずなブログに寄っていただきありがとうございます。
今年もまたよろしくお願いします!

日本では正月2日に書き初めをしますが(日本にいてもしないけど)、
久々のブログ更新というかたちで書き初めにかえたいと思います。
(また長くてすみません!)

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この間、トビー・マグワイアが主演した映画「シービスケット」の
原作本の作者であるローラ・ヒレンブランド氏のインタビューを読みました。
彼女も、大学に行っている19歳のときに慢性疲労症候群(CFS)を発病し、
とてつもない倦怠感にみまわれ、いつもめまいがしたため起き上がることも
なかなかできなかったそうです。1987年に発病して以来少し良くなったり
悪くなったりを繰り返しましたが、今もなかなか家から出られないという話でした。

CFSは今でもあまり理解されていない病気です。最近になっていろいろな
慢性感染との関連性が研究されていますが、直接の原因は究明されていませんし、
確立された治療法もありません。1980年代には殆ど理解されていなかったと
いっていいでしょう。

彼女がきちんと診断されるまで、5〜6年はかかったそうです。
連鎖球菌性咽頭炎ではないかとか、単に怠け者なのではとか、拒食症、鬱、
または、単に人生に対する態度の問題だとか、彼女はいろいろな診断、偏見を
うけました。その頃、テレビ番組の中でコメディアンのジェイ・レノは、
CFSのことを「金持ちのインフルエンザ」と呼び笑っていました。
(余裕があるからかかっていられる、という意味のジョーク。
慢性の病気を患って、余裕がある人なんて滅多にいませんが。)

自分ではどうしようもない倦怠感から起き上がれず、健康になって
歩き回りたかった彼女にとって、それがどんなにつらかったことでしょうか。

大学の友人や家族は、彼女は多分すぐに良くなって大学に復学し、すべてが
もとに戻るものだと思っていました。それが起こらなかったとき、みんな
それぞれの生活で忙しかったのでしょうが、友人にはだんだんと忘れられ、
家族には「まあ、どうしようもないからしょうがないね」、という感じで
放っておかれたそうです。唯一そばについていてサポートしてくれたのは
大学時代のボーイフレンド、後に夫となるフラナガン氏でした。

彼女はずっと長年感じた孤立感をこのように表現していました。「私がもう
この惑星にはいないかのように、どこかに行ってしまったかのように思われる
のよね。」「絶望感と苦しみの中で、まわりの世の中の一部ではなくなって
しまったように思える。」 そして自分をどのように見ていたかについて、
「ずっと、自分のなかの時間が19歳の自分で止まってしまっていたの。
それが、まわりの人間がみとめた自分だった」

その気持ちが痛いほど分かって、読んでいて涙が出ました。

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2007年にこのブログを始めたとき、私も自分に対して、彼女の友人や家族が
持ったような期待をもっていました。線維筋痛症(FMS)、慢性疲労症候群(CFS)、
セリアック病と診断を受け、こう考えていたのです。「病気かあ。そんなのには
(すぐ)打ち勝って、また元の生活を回復するから平気!」

この「回復」であるとか、「取り戻す」とかいう言葉がくせ者だったのですね。
(だいたい人生、ずっと同じ状態であることなんかないんだし。)考えてみると、
毎日過ごしていて、それが今の自分の生活であるということを、自分のなかで
受け入れていませんでした。頭のどこかで、一時的な状態であると思っていた。
すごろくで言ったら、一回休み、の休止状態だと。今の生活が、自分に課した
「あるべき自分」に到達/回帰する前の、障害物であるかのように考えていました、
ここ何年かずっと。

2010年はつらい年でした。この「一時的な状態」が長く続いて、3年もすると、
休止状態とは言っていられなくなったからです(苦笑)。家族や友人は多分、
1〜2年で良くなるものだと思ってただろうな、と考え、とすると、それが
できなかった自分がもどかしくて悪く思える。そして自分の頭の中でまた勝手に
とらわれたのは、年齢的にも(だいたいは)健康で、仕事をしたり勉強したり
(人によっては育児をしたり)して、かけずりまわっていなければ駄目、
という強迫観念。(考えてみれば、他人にはあまり関係ないので、じゃあ
しなかったから何?ってことになるんですけどね。)

ヒレンブランド氏と同じく、地球上から落っこちてしまったような、世の中の
一部ではなくなってしまったかのような気持ちになっていました。
「あるべき自分」の姿は、病気になる前に見た2006年の自分のまま。そこに戻って、
そして遅れてしまった分を取り戻して・・・と考えていたのが、もうそれが
できないところまで来てしまった。そして鬱々としていた中で、まわりの人間も、
私が2006年当時の元気な状態に戻るものと思っている、と勝手に考えていました。

もちろん、こうした推定の多くは自分の頭で勝手に生み出したものです。
私の家族や友人は、ヒレンブランド氏の話よりもはるかに思いやりをもって
支え励ましてくれますし、幸運なことに、診断された環境ももっと速やかでした。

とは言え、慢性的な病気にともなう感情には時代、文化、場所を問わず
共通するものがあります。中でもひときわ強く感じるのは、猛烈な罪悪感。
良くならず、病気になる前の自分に戻れない、という自責の念です。

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そこで新年の目標としてかかげるのは、できるだけ自分を責めない!ということ。
そして、今自分が持っているもの、ある生活に感謝して大切にするということ。
勝手にまわりが何を考えているか推定するのはやめて、いついつまでに治る、
とかいう時間や状態を設定・予測することもやめて、いまの生活を大事にします。
考えてみると、文句は言えないくらい色々たくさん持っているのです。
大事にしてくれるだんな様との、好きな街での快適な生活、愛情深い家族と友人、
辛いときも幸せなときもいつも一緒にいてくれた猫たち。

何もかもパーフェクトな人生なんてありません。たとえ体が痛くても、
疲れて動けなくても、そのときどきの状態を受け入れて、これが今の自分だから
大切にしていこうと思います。2006年バージョンの自分をふりかえることはやめて、
2011年バージョン、今の自分で今年はやっていきます。