Thursday, November 12, 2009

Making choices. - 日々の選択。

"It is our choices...that show what we truly are,
far more than our abilities."
- J.K. Rowling

- J.K. ロウリング

Awesome blue Seattle sky from our window today!
(Sorry Chris & Ruth - but you got to see Seattle in its natural state :P)

Sometimes we see someone who is far smarter than we are (and I don't mean "smart" in school), and realize how stupid we've been. Such was the case with me yesterday.

Sure, it's a tough season for those with fibromyalgia -- each time I wake up I feel like someone must have beaten me up in my sleep, and wonder from my painful joints if I've developed arthritis to go along with my other stuff.

Sure, my chronic infections (EBV or mono/HHV6) are still active, and I've had fever each time I moved around. So I've done the bare minimum in terms of stretching and such, saying, "I'm hurting too much, & I have a fever."

But I have the luxury of choice.

I can choose to do my stretching, knowing if I don't stretch enough, my muscle may weaken and hurt more in the future. (Not receiving proper advice, there are people with FMS who become severely disabled this way.)

Others don't have that luxury.

Yesterday, I watched a Japanese TV documentary on NHK about two 14-year olds. One of them, a boy, has congenital muscular dystrophy, and the other one, a girl, has cerebral palsy. Both of them discovered boccia (a.k.a. bocce), a Paralympic sport that can be played from a wheelchair, and practice really hard to compete in the Youth Paralympics.

As I watched the boy stretch his muscles every day with his mother's help, I realized I was really spoiled. "Ouch, ow, ow," he cries, because it really hurts to stretch his rapidly weakening muscles, but he is smiling, and his mom is smiling. They know if they don't go through the painful ritual, the only road is down -- he would eventually be immobilized completely. But they have a goal, and are joyfully, sometimes tearfully, working toward that goal. In the little choice they have, they are choosing to make the best of it.

In my defense, I'm new at this -- I've only been sick for a few years, and they have over a decade of experience on me. But still, I felt stupid, because I am blessed to have all kinds of choices. I have a choice to walk on my own feet, I have a choice to stretch, I have a choice to set various goals and live joyfully.

Yet I hadn't taken advantages of those choices lately.

So I need to remind myself: No matter how sick I might feel, I still have choices. And I need to choose to make the best of each day I live.


Another (not so great, I know) pic from our window -- of a maple tree. Pretty!



それに加えて単核症 (mono/EBV) と HHV6 ウィルスの慢性感染がなかなか良くならないので、ちょっと動くたびに熱が出る。だから甘えて、最近ストレッチとか、最小限しかしてませんでした。「痛い痛い、熱がある」って。




昨日、(再放送かな?)NHKで、ヒューマンドキュメンタリー「ふたりの14歳~ボッチャ 自立への階段~」という番組を見ました。二組の親子が出てきて、両方お子さんが14歳。そのうちの一人、男の子は生まれつき筋ジストロフィーを患っており、女の子のほうは脳性マヒなので、二人とも車椅子、介護なしには生活できません。その二人とご家族が、ボッチャという車椅子でもできるスポーツに出会って、懸命に練習してユースパラリンピック出場を目指す様子を追ったものでした。





*おわり* 長いのに読んでくれてありがとう!\(^o^)


Only in Seattle...? We found this cute Vespa w/ a coffee cup holder!

Wednesday, September 16, 2009

A little family bragging -- 手前味噌ではありますが。

You can play Bunni here.

We must thank Kanpai Toastmasters members, as well as Speechcrafters (and those who made his guest speaking possible), for letting Daniel practice his speech and giving him constructive feedback. He just gave his talk at GDC (Game Developers Conference) Austin this morning, & got some instant press coverage!

Gamasutra News:

I'm so proud :-) One down, one more to go...


乾杯トーストマスターズの皆さん、スピーチクラフターズの皆さん、ダニエルの予行演習スピーチを聞いてくださって、論評をしてくださってありがとうございました。 お蔭様で、GDC(ゲーム・デヴェロッパーズ・コンファレンス) Austin にて1つ目のスピーチが終わり、その後すぐに業界のサイトでいくつか報道していただきました!

Gamasutra News:

やったねダニエル。 もう一つパネリストセッション、頑張ってね~。

- 英

Tuesday, September 15, 2009

Weird virus?! (of a different kind) -- 今度は違う種類のウイルス?

I woke up this morning to find that all my Gmail account contacts seem to have been sent this weird message about an online electronic store -- I didn't send it! (And all my Gmail contacts have disappeared somehow.) A lot of them seem to have failed, but if it made through your spam filter, sorry (my recommendation is not to open it). I have a couple of appointments today so I have to run, but if I find out further details I'll let you know. I really don't need a computer virus, when I'm harboring some in my body!

I guess I'm (obviously) not the only person this has happened to, and the only solution seems to to be to regularly change my Gmail password. Don't fret about a virus making it to your computer -- the hacking seems to happen on the Gmail server side, supposedly through SNS sites like Facebook.
(Scroll down to see commentary by "JohnW2".)

なぜか Gmail のコンタクト大勢(全員???)に
届いていたらとりあえず無視してください! あいすみません。

そして Gmail のアドレスブックのアドレスも全部消えてる。。。
なんなの〜?!(涙) 体のウィルスと戦ってる最中に、


Facebook などを通して Gmail のサーバー側でハックされてるので、
ないようです。 ただアドレスブックが全部消えてしまって、
作り直さなきゃいけないところが涙 (T^T)
Gmail のパスワードを時々変えて防御するしかないみたい。


Monday, September 7, 2009

Wow she's getting started early. - これは目が肥える・・・かな?

I'm 36 and now just getting into jewelry, but our niece Olivia's starting out early!


Check it out:


Also another cutest picture ever (I'm guessing there'll be a lot of those...), Olivia & whom I assume to be her cousin Zoe:


Awwww. かわいい~~~。


Sunday, September 6, 2009

Miracles all around the world. - 世界中で起きてる、奇跡。




する体温。 この免疫不全による慢性感染ってのは、



例えば親友みっちゃんの赤ちゃん! (大きな奇跡。)

眉と口元。 かわいすぎる~。



今度は、小さな奇跡。 今年は調子が悪かったので夏休み(?)も


(来なかったけど)と植えたもの。 外に出かける元気が


それはまさに奇跡。 ふたりでその日はニコニコ。


雨も落ち着いてきました。 また、寝るのに挑戦して


How is everyone nowadays?

It totally seems like fall already in Seattle. It's 2:30 AM after a big game (UW) night.
The night outside is dark and quiet; I hear the rain come down harder once in a while. It's very soothing.

This summer has been a bit rough. It seemed, every little thing I did elevated my body temperature at night. This whole immune deficiency and chronic infections business has been trickier to treat than I thought -- a year ago, I was feeling all feisty and ready to beat it in a couple of months. (I'm competitive, so when they say "It takes a while for most people," I hear in my head, "Oh yeah? I bet I can beat it faster!")

The chronic Epstein-Barr (mono) and HHV6 viruses seem to be still well (?) and active in my body. The viruses and my temperatures have their ups and downs like a teenager's emotional drama. (I should maybe make a sitcom out of it.) I become weirdly sweaty and clammy at night; the cool-down patches (they should sell them here! It's a godsend) my mom sends me really come in handy, esp. when I have them chilled in the fridge. It feels so good on my forehead right about now.

But all those physical challenges aside, miracles are happening everywhere! And they provide me with joy and hope that the world is a nice place.

Exhibit A of a big miracle is the first picture above. He's my best friend Michiko's first baby! How adorable is he? I know, I know, they say we all become partial to the kids we are related to or associated with, but he is genuinely positively darling. I love his willful eyebrows and mouth. I can't wait to meet him some day!

Continued exhibit of a big miracle is the second picture of our dear niece Olivia. She's growing leaps and bounds, it seems like, and the way she really stares and observes people is uncanny (or so I hear). Look at those big eyes and pouty lips! I just wish I could touch her plump cheeks.

Next up: A small miracle. There are a lot of those. This year, since I wasn't feeling so hot, we were doing an ever-so-trendy stay-cation at home. I haven't even made it to downtown Seattle. But there are miracles you encounter precisely because you are spending your time slowly.

Our ancient camera's picture is not the best, but the third picture is the proof of our precious memory this summer! This spring I saw a hummingbird fly by, and in a faint hope one might come to our balcony, I started growing a pot of fuchsia. (Turns out there are huge bushels of fuchsia by the mall next door and everywhere in between, so the chances are slim a hummingbird will come to our meager one-pot wonder.)

In an attempt to feel summer-y despite persistently feeling horrid, Daniel and I did a lot of "Al Fresco!" dinners on our balcony. (It basically consists of eating our regular meals on our balcony and watching the sky and the birds and people who go by.)

One day we were having our Al Fresco dinner, and I noticed: One of the fuchsia flower looked like it was about to burst open. I pointed it out to Daniel, and at that moment, a petal went "pop!" (OK, so there wasn't really a sound, but it really felt like it went "pop!") Over the next five minutes or so, we blissfully watched other petals pop open one by one. By the end of the dinner, the flower was in its full glory. It was amazing. I mean, how many people get to witness a beautiful flower pop open, petal by petal, as it happens, with your one and only?

That was a miracle. We couldn't stop smiling that night. Such an experience probably wouldn't have existed if we had been jetting around, taking vacations like busy bees.

Over the past couple of years, we've shared a lot of emotions. Some heavy, some light, some painful, some delightful. I think we are very lucky to have done so. There have been experiences we couldn't have had if we had led "normal" lives, and our relationship is richer for that.

The rain is calming down... Maybe I'll challenge this thing called sleeping again :)


Wednesday, July 8, 2009

A ray of sunshine. -- ひとすじの光。

The sky might be cloudy and my body might be achy, but there is a ray of sunshine: We have a new niece!

Meet Olivia:

All the more motivation for me to get well enough to travel, so I can go meet her in Maine someday. My best friend Michiko recently had a baby in Tokyo, too, so I have to go meet him as well. In fact, I haven't met most of our friends' babies... So many possible future itineraries!





回復するモチベーションがぐ〜っとあがりました。 早く旅行できるくらい元気になって、メーンに会いに行きたいです。 日本にいる親友の赤ちゃんも最近生まれたので、彼にも会いたい。 (待っててねかのくん!) と考え出すと、お友達の赤ちゃん数人に会ってません。 将来の旅行の可能性、いっぱいです。

- 英

Saturday, May 2, 2009

チューリップと、雨。 - Tulips and rain.


それと足並みを合わせるように体はひどく痛く、これまた久しぶりに、壊れた蛇口のように、泣いた。 それが私を弱くしたかも知れないが、体が痛かったから泣いたのでは、ない。


今週は同じように友人の死を悼むお友達と会い、一緒にお買い物をし、気分が明るくなるかと思いチューリップの花束を買って家に生けた。 確かにそれらは綺麗で、家は明るくなったが、気持ちは残念ながら明るくならなかった。


でもこれを書いていて涙は止まったし、生きていれば、明日また(雲のむこうにしろ)日は昇り、新しい日がやってくる。 雨が植物の恵みであるように、涙も心にしみて栄養になるのかも知れない。



We've had a good run of sunny days, and today it's finally rainy.

Along with the rain outside my body ached terribly, and as if to match the rain, my eyes leaked like a broken faucet. The pain may have buckled my will, but it didn't cause the tears.

Our feelings, as much as we'd like to believe, aren't always controllable.

This week I saw a friend who also mourned our friends' untimely deaths, so we could support one another. We shopped together at Whole Foods, and in their glorious cheerful display, I spotted beautiful tulips. I thought flowers were supposed to cheer us up, so I bought some and arranged them in a vase.

They did brighten the room, but they didn't cheer me up.

We try all sorts of tactics to control our emotions. I learned today that emotions don't work like a neat formula.

But by writing this my tears stopped, and if we're alive, a new day will come in the morning, and the sun will rise again (even if it's behind clouds). The rain will surely nourish plants. Maybe tears, too, will sink into our hearts and nourish us in the end.

I hope I can smile at the tulips tomorrow.


Tuesday, April 28, 2009

私が自分の髪を好きになった訳。- How I came to like my hair.


(今もかわいい靴とか欲しくなると、それを思い出しどきっとする・・・。 笑)


人間は欲張りで、ないものねだりだ。 衣、食、住がひととおり揃うと、今持っていないものがなんだか欲しくなってしまう。

それはもっといい車であったり、もっと大きい家であったり。 シワのない顔(そんなのあるのか?!)、欧米の人なら日焼けした肌、アジアの女性ならそれは真っ白な肌であったりする。 (これはバカンスの余裕があるとか、使用人がいて箱入りとかいう階級社会に所以してるのだろうが。。。)


もともとちりちりふわふわしていたものが年をとってから余計うねうねしてきたのだが、カールとかになるほどでもない。 昔から日本人に多いまっすぐストレートな、黒くて多い髪質が羨ましく、ほとんどの場合まっすぐにブロードライしてきた。

30代半ばになって最近、やっと自分の髪の毛が好きになってきた。 まっすぐにブローするのに体力がいるので疲れていて出来ないことも多くて、だんだんそのままでもいいか、と思うようになった。 ウエーブつけるのにわざわざパーマかける人もいるくらいだし(そういう風にきれいにはならないのだが)、と開き直ってきた。


去年、小学校低学年のときとても仲が良かった友人と20年ぶりくらいに話をし、彼女が13歳くらいのときから、全身脱毛症に悩まされてきたことを知った。 これも私のセリアック病と同じで、自分の細胞を間違って攻撃してしまう自己免疫疾患の一種らしいのだが、眉毛もまつげもなくなってしまった彼女からしてみたら、毛深いとか髪の毛が薄いとか天パーだとかいう私の悩み(?)は、贅沢なお話なのだ。



返ってきたのは、「何言ってんの、あやの髪はいい髪だよ! カールもすぐ作れるし、そんなにカーリーじゃないから真っ直ぐに伸ばそうと思えばそう出来るし、スタイルし易い、守備範囲の広いいい髪だよ。 君の髪で作ったカツラに当たる子は幸せさー。」と、とてもポジティブなお言葉。 そんな風に考えたことはなく、まっすぐじゃない、カーリーでもない、量がない、と、ないものねだりばかりしていた。 ものは本当に見ようである。

カツラをひとつ作るには何人もの髪の毛が必要なので、他の人のものと混じる訳だが、少ない私の髪でも、伸ばせば誰かの前髪ぐらいにはなれるかも知れない。 と思って、今は成長が遅い髪をなんとか伸ばそうとしている(それにこうして公言しておけば、切りたくなる誘惑にも勝てるかも)。

そんなふうに、物事にはいろいろな側面、見方がある。 例えばうちはアメリカの家にしたら狭いが、その分光熱費は安く、いつもあたたかい。 甲状腺機能低下症で手足がいつも冷たい私にはとてもありがたい。 大きい家に住めば収納スペースが増えていいだろうが、寒そうだし、守るものも経費も増える。 たとえばこの景気で失業して、自分の家でなく安アパートに住む、ということになった場合、前の家が大きくて落差が激しかった場合なんだか寂しくなりそうだが、もともと狭いところに住んでいたら、そんなにショックではないだろう。

なーんて言うと、物欲のない生活、物の少ない生活を奨励しているようだが、自分の生活・性格はそれからかなりかけ離れている(笑)。 そりゃあ物が少ない生活のほうが潔くっていいのだが、自他ともに認めるショップアホリックの自分を変えるのは難しい。 かわいい靴は私のプロザックだから~。

という訳で(どういう訳だか。。。こじつけっぽいなあ)、ちょっとのご褒美/贅沢は、いいと思う。 自分やまわりの人をちょっと幸せにするもの、例えば趣味のもの、本、お花、プレゼント、音楽、おいしい物、友達と飲むお茶。 自分でやれる事、変えられるもの(なにかに関する能力とか)に関しては、貪欲でもいいと思うし。 自分が幸せでないとまわりも幸せにできないから。

なにかをなくすことによって学ぶ幸せもあり、病気になることも決して無駄でもないし損でもない。 まえは当たり前に思っていたこと - 例えば喉が痛くなく飲み込めることや、体が痛いことなく起き上がれること、座れること、歩けること、走れること。 それらがとても有り難いことなのだと、ここ数年で学んだ。 まえは高いレストランでデザートを食べても、「う~んここのデザートはいまいちね~」(<- 自分が料理下手なくせに生意気・上目線。)とか言ってたのが、乳製品・卵・小麦を食べられないと分かってからは、ココナッツミルクで出来たアイスや、乳化剤の入ってない板チョコを食べられるだけで奇跡のようで、すごーい贅沢をしてる気分。


- 英

Growing up, as I frequently wanted a new something, my mother would say: "Ah, humans' greed knows no limits."

(When I desire a new purse or a cute pair of shoes, these words haunt me to this day... lol.)

Lately I've been thinking those words were very true.

We are often greedy and desirous of things we don't already have. Once we have basic food, shelter and clothing, we're always seeking that something extra.

It could be a nicer car or a bigger house. It could be a wrinkle-less face (can such a thing exist?!); if you are pale Caucasians you want "sun-kissed" tanned skin, whereas Asian women want pale skin. (I guess this came about from the long-standing classism, where the rich could vacation in exotic resorts or, in Asia, the rich could have helpers that they didn't need to labor outside.)

Today, as I was drying my thin, brown and wavy hair, I was thinking about such things.

My hair has become more wavy as I got older, but it's not committed enough to be called curly. It's mostly fuzzy and goes in random directions. As I grew up in Japan, I was always envious of the typical Japanese hair type: full, thick, straight and black. There aren't too many curly-haired people there. Most of the time, I blow-dried it straight.

In my mid-30s, I've come to like my hair more. Since I often don't have enough energy to blow-dry my hair, I've kind of let it be on many days (when I'm feeling well enough to shower). I've come to think, "Hey, people pay good money to perm their hair, to make it curly."

There are also other reasons I've come to appreciate my hair.

Last year, I had a chance to talk to a friend from elementary school -- we were close when we were in 2nd grade, and we hadn't talked to each other in decades. I happened to learn that she had struggled with alopecia since age 13. Alopecia universalis (hair loss of whole body) is an autoimmune disease like my celiac disease -- your body attacks your own cells for no known reason. To someone like her -- who lost all her hair including her eyebrows and eyelashes -- my gripes about having thin wavy hair or unwanted body hair are, in short, luxury.

After learning about her condition, I thought about growing and donating my hair to one of those organizations that give real-hair wigs to kids struggling with alopecia or going through chemotherapy.

But I wondered: Is my hair nice enough? I always had a complex about my hair being thin and uncommitted-ly wavy. So I asked my hairstylist, Tim (who happens to be a cancer survivor), "Is my hair nice enough to donate...?"

His answer was an enthusiastic "Yes!" He radiates optimism, and I love him for it. "Of course! You have nice hair. Are you kidding? You can curl it easily if you wanted to, you can blow dry it straight easily if you wanted to. What you have is nice, versatile hair. Whoever gets your hair would be very lucky." I never thought of it that way. I was always wanting things I didn't have: straight hair, curlier hair, or more hair. I had nice hair all along. He made me realize it's all in how you look at something -- in this case my hair.

To make a wig, they need hair from multiple persons. So if donated, my hair will be mixed with others' hair. As such, even my thin hair, when grown, could be somebody's bangs or something :-) After hearing Tim's words, I decided to grow out my "nice" hair. (I'm hoping that by publicly saying this, I wouldn't be tempted to chop it off as I usually am when it goes past my shoulders.)

There are many ways to look at one thing. For instance, our place is small (636 sq. ft.) by American standards, but it's energy efficient -- so the heating cost is low and it's always warm. (This is nice for me, because I'm always cold from hypothyroidism!) We could have a bigger house, and more storage space is nice, but it seems cold in bigger houses, and there would be more expenses and more to keep up/protect. In this economy we could lose a job, and if you have to move to a small apartment instead of your own place, it seems more shocking if the move is from a big house. As it is, such a move doesn't seem that traumatic for us.

When I babble about such things it may seem like I'm promoting a virtuous lifestyle absent of materialism. I wish I could (I do realize less stuff makes life simpler), but as a known shopaholic, I couldn't really change myself that much. Cute shoes are my Prozac!

I don't really have a logic to back it up, but I think a little luxury is a good thing. Little things that makes us, and those around us, a little happier -- like our hobbies, books, flowers, little gifts, good food, or tea/coffee you have with your friends. I also think it's all right to be a little greedy about things you can do or change about yourself (like your ability to do something). Because if you aren't happy yourself, you can't make others happy either.

Sometimes, we learn about happiness by losing something. So it's not exactly a waste or loss to be sick. Things I used to take for granted -- for example, being able to swallow without pain, being able to get up without pain, being able to sit, walk, or run -- I learned those are precious. Before, I would go out to a nice restaurant and critique the dessert chef (kind of obnoxious when you think about it, considering I'm not much of a good cook myself). After learning I couldn't eat dairy, eggs or wheat, eating a scoop of coconut milk ice cream or a dark chocolate bar seems so decadent and awfully luxurious.

Maybe, just maybe, these conditions and allergies were gifts of wisdom from up above, to a girl who was whining about things she didn't have.

- A

More info:
A real-hair wig can cost as much as $1,200 or more.

Locks of Love: A nonprofit organization that provides free hairpieces to financially disadvantaged children in the U.S. and Canada under age 18 suffering from long-term medical hair loss from any diagnosis.

Pantene Beautiful Lengths
: A campaign (launched by Pantene & the Entertainment Industry Foundation) that encourages people to grow, cut and donate their hair to create free, real-hair wigs for women who've lost their hair due to cancer.

Wednesday, April 22, 2009

一歩一歩、前に進むこと。 -- One foot in front of the other.

(Sorry about the long post... it's two months' worth, hahaha.


すみません m(__)m



クリニックに来ている人の中には10年、20年、30年と FMS・CFS とお付き合いしている人もいるので、私はまだラッキー(?)なほうなのだけれど。




2人とも親しい友人と呼べるほど知っていたわけではないのだが、そのうちの1人は親しくなりかけだったけれどなかなか会えなかった、という状況だったので、果てしない罪悪感におそわれた。 ちょっと落ち着いてきた頃にもう1人の方が亡くなったので、まさにダブルパンチ、両側から頭をでっかいハンマーですこーんと殴られて、ぽかーんと穴があいてしまったような気分が続いている。

一番やるせないのは、多分それがうつによるもので、個人的な経験から、うつ病は治るものだと分かっているからだ。 そして良くなりかけ、ちょっと元気になった頃があぶない、ということも分かっている。 治るとはいえ、本人が「治りたい」と願い、総合的な、そして継続的な治療を続けないと、再発しやすい病気でもある。 (薬だけでは治らないし、時たまの心理療法(カウンセリング)だけでもなかなか治らない。) 

その「ほんとうに治りたい」というところまでたどり着くまでに、大抵かなり時間がかかる。 自身や、家族がふだん強かったり、プライドが高ければ特にそうだ。 だんだんまわりの世界が色をなくし、灰色になっていくのに、「私/うちは大丈夫、自分の力でなんとかなる」と考えてしまう。

すると今まであった感覚はだんだん麻痺していって、毎日が同じ灰色の日になる。 体は重く、自分の体がどこで終わって外の世界がどこで始まるのかぼんやりしてくる。 起きてるのも寝てるのも、生きてるのも死んでるのもあまり変わらなく思えてくる。 自分の体に傷をつけても痛くなくなる。 心の痛みよりずっと楽だからだ。 そして多くの場合眠れなくなる。 何日も眠れないと、ホルモンバランスは崩れ、気持ちはもっとあやふやになってきて、判断力がなくなってしまう。

私の場合、若いときそれで死にそうになった。 セリアック病患者は栄養不足もあってうつ病になることが多いそうだが、他にも高校生の時点で、[言葉ができなかった]+[顔面複雑骨折して顔半分マヒでブス]+[落ち込んで過食したら15キロほど太った]+[寮の個室で孤立]+[暴行にあう]=という殆ど完璧なレシピも手伝い、人と接しているときはなんとかかんとか喋れる、でも一人になるとくらーくなる日々が続いた。 

(それに日本の英語の教科書って、"How are you?" "I'm fine, thank you!" か "So so" と、まあまあ元気なときの挨拶しか教えてくれなかったので、「落ち込んでいる~」とか、「ストレス~」とか言えるまでに何年もかかった。 今も条件反射で、機嫌の悪いときでも、殆ど "I'm good!" とか "Fine!" になってしまう。 笑)

20代はじめのあるとき、1週間ほどよく眠れなかったあと、3~4日一睡もできなかったことがあった。 頭はがんがんクラクラ、頭痛薬ももう効かず、判断力がそこでもうなくなっていて、眠れさえしたら、その時間は人生ばら色になるような気がした。 意外と真面目な性格なので、なんでこんなことになっちゃったんだろう、私なんてめんどくさい奴、この世界にいないほうがいいかもね、と時々頭をよぎったことは否めないが、決して自殺しようとしたわけでは、ない。 とにかく眠りたかった。 あとはよく覚えていない。

起きたときは、真っ白な病院の中にいて、胃を炭で洗浄されて黒い液体を吐いている真っ最中だった。 「へ?何が起こってるの?」というのが最初の反応。 (悪いイカスミでも食べたかと思った。) どうも、あまりに眠りたくていつもより多く薬を口に入れて、これでもっと眠れるかなと台所にあったカンパリかなにかを飲んで(一口だったと思った)、わけがわからない状態になり、さらに薬とアルコールをガーッと飲んだらしい。 酔っ払っただけなら良かった(?)のだが、抗うつ剤が大量に混じったことで錯乱状態になって、その後ぐったり起きなくなったらしい。 発見したハウスメイト(命の恩人)には非常にお気の毒なことであった。

病院では当然自殺を図ったと思い込まれて、やさしい看護師さんが「生きていればいいこともあるよ」とか毎日こんこんと語り聞かせてくれた。 しばらく狐につままれたような気分だったが、退院時体重が80パウンド(36キロくらい?)に落ちてたことも考えると、あまりいい状態ではなかったのであろう。 (その後太るまで栄養ドリンクを飲みなさいと言われて律儀に毎日飲んだのだが、そのときはグルテンだの乳製品だのにアレルギーだと知らなかったので、ほとんどアレルギー成分でできてるような飲み物を体が思いっきり受けつけなかった。。。 ハハハ。 おかゆで生き返ったけど)

知らなかったのは、「自殺」とか「自殺未遂」、「自分でやったケガ」と判断されると、保険が全く適用されないこと。 オチ -> 救急車代から救命士の人件費、心臓の専門医の問診から入院費から検査から、全て実費の請求書が、何ヶ月か後に次々と届き始めましたとさ。 うん百万単位の借金を分割払いにしてもらって払うのに5~6年かかったので、いくら眠れなくても落ち込んでいても、こういう行動は絶対にお薦めできません! 自分も(生きてたら)まわりも(どっちにしろ)ひじょーに大変です。 生命保険あるし~、とか思っても、自殺で保険金=お葬式代は出ません。 そうなる前に誰かに相談しましょう!!

これで懲りたので、こんなしょーもない私を愛してくれる家族や優しい看護師さん、命の恩人たちのためにも、その後私は「治ろう!」と、お医者さんの言うことをよく聞く患者になりました。 (って言うか、お金の無駄だと分かったからかも。。。 予防のほうが何かあってからの治療よりよほど安い、と身をもって知ったのです。)

・・・とお金のことはさておき、そんなことがあったので余計に、なんでもっと苦しんでた人達のこと気付いてあげられなかったんだろう、と胸が痛くなったわけです。 でも離れていて電話やメールだけだと、外から見えないことって沢山ある、というのが今度の教訓。 「大丈夫、元気よ~」って言われても、「ほんとかな~」としばらく疑り深くなっちゃいそう。

うつ病の発症は、30代が一番多いそうです。 (女性の場合はホルモンバランスが崩れてくる時期だからかしら~。) 世界で一番規模の大きい精神疾患の研究所である NIMH(National Institute of Mental Health - 国立精神疾患研究機関)によると、アメリカでは人口の 9.5% 、実に10人に1人がうつ病にかかっているそうです。 診療をうけていない人口を含めると、もっと多いことになる。 アメリカではもうすぐ保険法の改正で、精神疾患と身体疾患に対する保険適用限度の差がなくなります。 (ワシントン州の法律ではすでにそうなっています。) これで、精神疾患治療に対するイメージは少し変わるでしょうか。

うつ病は日本では「心の風邪」とか呼ぶそうですが、風邪もそのままにして悪くなると肺炎になって死んでしまうかも知れないし、うつ病もしかり。 アメリカでは保険がなくて十分な治療が受けられない人もたくさんいる。 うつになった人がみんな、ひどい風邪やインフルエンザになったときのように、気軽に(?)診療を受けられるのが私の夢です。 セリアック病や睡眠障害のように、他の疾患が関係してる場合もあるし。

人生の中では、前に進むのがすごーく難しく感じられる日もある。 時にはどう歩くものなのか忘れてしまうかも。 ダニエルは、そんな日は、「I just put one foot in front of the other」、つまり、頑張って右足を左足の前に、そして次は左足を右足の前においてみて、それをたんたんと繰り返すのだ、と言います。 そうしているうちに素敵な場所も見つかって、また歩き方も思い出す。 時にはスピードが遅くても、そうして一歩一歩前に進んでいればいいのだと。


私のお友達、家族へ: ひとりで落ち込んでいることがあったら、泣いててなにも話せなくてもいいから、死ぬ前に連絡ください!!! きっと同じようなことで悩んだことがあるのはあなただけじゃない。 一歩一歩、少しずつでも歩くうちに、いいことが必ずあります。

- 英

I recently realized I hadn’t posted in a couple of months.


It’s not as though I didn’t have things to write about. No, that wasn’t it.

It was because the time was coming up on my two-year anniversary of various diagnoses – fibromyalgia (FMS), chronic fatigue syndrome (CFS), and celiac disease. I’ve put in various efforts for these two years, but I felt as though I wasn’t making as much of a progress as I’d hoped, and I was depressed about that. I really didn’t want to talk about it.

When I put it in a perspective, though, I meet others who’ve lived with these conditions for multiple decades, so I should maybe feel lucky. Should, would, could. Keywords of guilt!

But just then…

A couple of incidents happened recently, and they made my little dilemma seem miniscule.

Within days of each other, two people I know took their own lives.

They were both “tough” women, and I was shocked, like electric shocks ran through me.

I wasn’t that close to either of them. With one of them, though, I was developing a friendship. I couldn’t see her as often as I’d hoped, so I was tormented by strong sense of guilt for a while. I was almost settling down after her memorial service, and the news came in about the other person. I felt as if my head had been hit with a huge hammer from both sides in succession, leaving huge holes. I’ve felt like my brain (and heart) had been put through a blender. It really hurts.

I think what’s eating me up the most is the fact that they were both probably going through severe depression, and the fact that I personally know depression is treatable. (I also know that it's most dangerous when the person is starting to feel a bit better and have a little energy.) But – and this is a big but – the person, not family or friends, has to feel she/he wants to continue treatment and get better. And the treatment plan must be holistic, consistent, and comprehensive. Pills by themselves usually don’t quite do the job, and psychotherapies on their own have limited reach.

Usually, the hardest part is reaching that point, where the afflicted person feels he/she wants to fully get better. It takes some time. If that person and their family are known as “strong,” or if they are too proud, it becomes that much harder. Despite the fact the world becomes more and more gray and lose more and more color each day, they think to themselves, “I'm fine. I/We’ve always been strong. I/We will deal with it.”

Then the numbness sets in. Everyday becomes a gray day. The body becomes heavy, and it becomes difficult to decipher where your body ends and the world begins. Being awake or asleep, dead or alive, doesn’t seem to make much of a difference. It doesn’t hurt anymore to hurt your own body, because the pain in the heart is so much more. And you often lose sleep. As you haven’t slept for days, your hormones go out of whack, you can’t tell what you’re feeling anymore, and your judgment goes out the window.

I almost died feeling like that when I was young. They say celiac disease patients, before they’re diagnosed, often become depressed (makes sense if your whole body including the brain isn’t getting nutrients). In my case, I had an almost perfect recipe for depression in addition to that: [Can’t speak the language and can’t communicate] + [Bashed my face and with half of it paralyzed, felt completely ugly] + [Overate feeling depressed and gained about 30 pounds] + [Isolated in a single-person dorm room reminiscent of a jail cell] + [Assaulted]. I was a walking zombie, a “functional depressed.” I could form complete sentences when I was with people, but my heart was in a complete darkness once alone.

After a while, the depressed state becomes the norm. Once upon a time in my early 20s, I'd had a particularly rough week, unable to sleep. After being awake for 3 or 4 straight days and nights, my head was dizzy and ringing. Headache medicines did no good. I’d lost any sense of good judgment – it seemed, to my dizzy head, if I could only sleep, that time would be completely delightful. A utopia. I’ll admit, in the past with my (surprisingly) serious personality, the thought had crossed my mind a few times: “What have I become? I’m such a mess, the world would be probably better off without me.” But I swear, at that time, all I wanted was sleep. I wasn’t trying to kill myself. I don’t remember much else about what happened.

It seemed like the mission was accomplished, because everything became dark. When I woke up, it was under blaring fluorescent lights, in a very white hospital room. My mouth was spewing out black liquids as they washed my stomach with charcoal. (I thought, for a moment, maybe I ate bad squid ink pasta or something.) My first reaction was, “Why am I here and what’s happening???” From what I gathered later, it seems, I first took some “extra” antidepressant pills, thinking they might help me sleep. Then I chased those with some liquor, thinking that might further aid my sleeping. That mix apparently made me lose control, I went nuts, and followed up with more pills and alcohol. Apparently when my poor housemate (to whom I owe my life) got home, I was screaming things he couldn't understand, and later became limp. To this day I feel very badly about what he had to go through.

At the hospital, understandably, they determined I was suicidal. I was bewildered by this and couldn’t understand why people were so nice to me. A very gentle nurse would come by every day and tell me, “If you stay alive, things will get better, surely.” I wasn’t fully aware, but considering I’d dropped to about 80 pounds by the time I was discharged, I must have been in a pretty bad shape. (Then they told me to drink those protein drinks like Ensure until I gained weight – not knowing back then I was allergic to things like dairy ingredients and gluten, my body seemed not to accept them. Lol. I eventually recovered on rice porridge.)

What I didn’t know was that when such an incident is considered to be suicide, suicide attempt, or self-inflicted injury, insurance doesn’t cover any treatment. So the lesson was learned: After I recovered, numerous bills started arriving. Ambulance transportation, EMT’s pay, a cardiologist’s 5-minute visit, hospital stay, tests and supplies – I was to pay tens of thousands of dollars. I was on a payment plan for several years.

So the gist of this story is: I really don’t recommend staying depressed and losing sleep and becoming crazy. For you (if you stay alive) and those around you (either way), things will be haaaard! Even if you think “Oh, my life insurance will pay out and pay for the funeral,” insurance companies don’t pay when you commit suicide! Before you do such things, talk to someone!!!

After my own lesson, for those who love me/the nice nurse/those who saved my life, I decided I’d really be serious about my treatment. I became a really good patient who listened to her doctors, and got over my depression for the most part. (Well, I mostly learned that prevention is much cheaper than treatment of a catastrophic event.)

The economics of depression aside, since I’d gone through such periods in my life, I’ve felt especially badly that I couldn’t spot someone else’s depression. But when we live far away from one another and communicate by just phone or email, there are a lot of things we can’t see. For a while, I might become suspicious when someone says they’re "fine" or “OK,” because that’s what my two friends said.

On average, the initial onset of depression is said to be most common in people's 30s. According to National Institute of Mental Health (NIMH), at any given time, 9.5% of the American population is depressed. That’s about 1 in 10 people. If you include those who are not reporting their depression, it would probably be more. The good news is that legally, it would soon be illegal at the Federal level to limit insurance coverage for mental health treatments compared to treatment for other conditions. In other words, mental health treatment will gain the same status as other "physical" illnesses. (In Washington state this is already a reality.) I hope this will remove the certain stigma associated with mental illnesses.

In Japan they say depression is “a cold of the heart.” A bad cold or flu can develop into pneumonia and kill people, and so can depression. In the U.S., there are a ton of people who are uninsured or underinsured, who can’t get appropriate treatment. My dream is that all depressed people can someday have easy and prompt access to treatment, like when people go to clinics for bad colds or flu. Who knows, like me, they might also be affected by celiac disease or sleep disorders (I keep saying this, but more on this later)!

In life, it may seem reeeeally hard to go forward on some days. Some days we might even forget how to walk forward. Daniel says, on days like that, “I just put one foot in front of the other.” Then keep going. As we keep going, we find nice places again, and remember how to walk again. Sometimes we might be slow, but what matters is that we keep going.

At the beginning of this spring, I was feeling as though I was walking in circles. But during this past week, I realized, once again, how fortunate I am. I have a family with whom I can talk about most everything, and I’m surrounded by great friends. Even if I’m slow, I will keep walking forward.

To my friends and family: If you are feeling depressed alone, even if you feel like you can’t say anything because you’re just crying, PLEASE call me before you die!!! You are not alone in feeling that way. As we walk forward, one foot in front of the other, we will find a better place.


Wednesday, February 18, 2009

I ate GF delivery pizza! (& didn't get sick!)

This is my 100th post on this blog! Hooray!

For those of you who were wondering if I was alive, I am... I'm trying to get used to sleeping with a machine that puffs air up my nostrils. (Which has been taking away my sleep, which in turn makes me hurt more and be tired.) The hope is such that it will, eventually, improve my health. I shall explain more in another post.

Right now, I'm excited about having had pizza on Valentine's Day!

Having delivery pizza may not seem like the most romantic Valentine's date, but for us, it was the ultimate luxury... A few companies like Bob's Red Mill and Ener-G make gluten-free pizza crust mix/pre-made shells, but GF delivery pizzas are still few and far in between. I once went to pick up a GF + egg-free pizza at a restaurant near Kirkland, but the crust tasted like cardboard, and I felt crushed. :( (It also didn't help that I was bringing it to attend a gourmet pizza-baking party.)

Then recently, Daniel spotted this sign in our neighborhood: "Garlic Jim's Famous Gourmet Pizza: Gluten-Free Pizza now available!"

Still, I was cautiously optimistic, because things that say "gluten-free" could still have dairy or eggs in them. Usually eggs are the culprit.

So I wrote in to their website to inquire. To my delight, the GF crust they make is dairy- and egg-free! This was music to my ears.

They don't offer any vegan (i.e. dairy-free) cheese alternative, but the company rep told me the pizzas would still be good without cheese (with just the sauce).

So we took the plunge. We were so glad we did -- it was the best tasting gluten-free, egg-free crust we've tasted to date! AND we can get the pizzas delivered!

I used to be a bit of a pizza snob and didn't exactly jump to order delivery pizzas in the past, but two years of deprivation can do wonders...

Happy belated Valentine's Day!


Thursday, January 1, 2009

A happy, healthy, delicious new year! - 明けましておめでとうございます!

A *happy* new year!

I may be able to compete in the "least frequently updated blog" contest, but I haven't forgotten I have a blog! These couple of months have been slightly rough... partially due to the cold weather. (You hear a lot of fibromyalgia sufferers talking about wanting to move to Hawaii around this time of year in Seattle.)

Nonetheless, I'm filled with hopes for the new year. I learned a lot more about myself in the past year, and I can't help but be grateful for all the great things I have in my life.

My ever-so-supportive husband and I still get along famously after two years of marriage, as we both type away on our laptops at the table by our bay window. Both my family and his family have been so loving and supportive, I couldn't have asked for more. We have wonderful friends whom we'd love to see more of any day. Our cats are so loving and sweet it makes me want to cry (OK, maybe I'm a bit woozy from pain medication, but it's true). I'm getting great medical care and am finding out all sorts of new things. And we're becoming an uncle and aunt both in Japan and the U.S.! How cool is that?

Well, enough with my blabbering. What I wanted to say most of all:

I'm wishing YOU, who's reading this blog, a happy, healthy, delicious new year! (The word "delicious" came about because I had one of the most amazing meals last night -- more on this later.)

I love you all.


We can all use a little boost in our life --
y'all have given me a boost! Thank you.


新年あけましておめでとうございます。 m(__)m











I love you!

- 英