What Gives Life Its Shape?

人生を形づくるもの

(The Japanese text follows the English./ 日本語は英文の後にあります)

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Everyone makes choices at key points in life. I once dreamed of becoming a copywriter, but after graduation, I joined a TV production company and took the path of a producer. I got engaged under the social expectations of the Japan I grew up in, but I chose to prioritize my career and decided not to get married. A few years later, I quit my job and moved to New York with nothing but a suitcase. What was meant to be a one-year stay in the U.S. turned into more than three decades—over half my life.

I've made most of my life decisions on instinct. I rarely overthought them. Because they only affected me, a bit of recklessness was allowed. But eighteen months ago, I was forced to make decisions that would shape the lives of others—my family. It came from nowhere and was a game changer.

Illness in the family, caregiving from afar, endless paperwork, and a deep sense of isolation—those days were intense but not tragic. In a time that felt like it might fall apart but didn't, the instincts and experience I had built over the years became my survival tools. Everyone's circumstances are different, but what happened to me could happen to anyone. I write this partly for myself and in case it happens to speak to someone else, too.

In November 2023, I visited my family home in Tokyo from New York, worried about my mother and sister, who had caught a bad cold the month before. One day, I came back from a daily run to find my mother crouched in the living room, reaching under the cabinet for something. As I got closer, I realized she wasn't moving. The silence in the room was only made sharper by the blaring voice of someone shouting on the TV. A spoon and a soft, overripe persimmon sat on the table—two small bites taken from it.

My father had passed away five years earlier, and since then, my mother has been living with my younger sister, with physical and intellectual disabilities. When my mother collapsed, my sister was in the bath. I didn't call out to her—I didn't want to scare her. The paramedics said it was a critical emergency, but I couldn't leave my sister alone. I called one of her care staff and begged her to come to our home immediately. I decided to send my mother to the hospital first in the ambulance and wait behind until the care worker arrived, then follow.

But then I thought—what if my mother died in the ambulance? She would be alone, with only strangers beside her. That idea made me ache. I remembered a handwritten phone number my mother had taped to the side of the fridge. I didn't know whose number it was, but I called it, thinking she must have had a reason for keeping it there. The call was answered by a woman from our neighborhood association who lived just five houses down. She knew my mother and kindly rode with her in the ambulance.

As the sound of the ambulance carrying my mother faded into the distance, it suddenly occurred to me—if she could hold on until the hospital, maybe I could make my sister see her one last time. I fought the urge to rush. Instead, I calmly helped my sister out of the bath, careful not to alarm her. She looked annoyed. I threw clothes onto her as gently as possible, explaining the situation in the simplest words she could understand. While calling her care worker—already on her way to our home—I half-guided and half-dragged my sister into a taxi.

My mother was conscious in the hospital and able to hold my sister’s hand. My sister kept quietly staring at her, sensing something was different. I thought that moment would help her accept that our mother wouldn’t be coming home. But from that day on, she barely ate anything at home.

My mother had a stroke. She survived, but her doctor warned that she would have lasting aftereffects. It became clear that she wouldn't be able to live on her own after discharge, and a senior care facility would likely be necessary. At the same time, I had to figure out a new way forward for my sister, who had spent her entire life alongside our mother. My mother’s rehab period was set for six months—essentially a deadline by which I had to decide the course of both their lives.

I began by searching for a care facility for my sister. After that, I flew back to New York to work on a TV production. Then I returned to Japan again—this time for a film shoot—while continuing to search for where my mother could live after discharge. I had been away from Japanese society for so long that navigating the welfare system, or even daily life here, felt like fumbling in the dark.

I pulled down a large, poster-sized calendar from my mother's wall and started covering it with color-coded sticky notes—for my mother, my sister, and myself. I also made to-do lists and checklists for each of us. Even as family, deciding someone else's future is a lonely and nerve-wracking task. I couldn't move forward without something concrete—visible reasons to guide the way.

I learned that there were no nearby facilities that could immediately accept someone with severe physical and intellectual disabilities like my sister. That meant I had to travel to the countryside's care homes, which were contracted by the Tokyo city government. Altogether, the visits added up to 1,200 miles.

While finding a facility for my sister meant coping with a painful lack of options, searching for a place for my mother was the opposite problem—there were too many categories and too many choices. It drove home just how aged a nation Japan has become. I was overwhelmed.

It took two months to find a facility where my sister could live with peace of mind. It’s in a quiet, green town in the Tohoku region. As soon as I made the decision, everything moved so fast, and within weeks, she was set to move. The reality of her leaving home broke my heart. At her farewell party at the welfare center she'd gone to every day, she didn't quite understand why she was leaving but smiled anyway, surrounded by friends and staff who'd known her for years. Seeing her smile only made it harder—I wanted to scream, "I'll move to Japan and take care of her myself!" But I knew that wouldn't help anyone. Even if my sister had allowed me to take care of her, what would have happened if I collapsed like my mother did? Her condition forced us into a crisis, but we were also—strangely—fortunate. It happened on a Friday evening. If I hadn't been in Japan, no one would have noticed until Monday morning, when staff from the care center came to check on my sister's absence. My sister, locked in the bathroom during her bath, might have been freezing by then.

My mother moved into a senior care facility near our home after her discharge. I tried to be honest with my mother and sister throughout the process. Even with disability or dementia, I believed that plain, straightforward words reached them best. But when it came time to help my mother accept the idea of moving into a facility, I had to choose those words carefully. She insisted she didn't want to move anywhere. So I told her, "You'll still live at home, just like always. But ONLY while I'm back in the U.S. you'll have a little stay at a new place. No need to worry about forgetting things—they'll take care of the meals, too. It just means you'll have two homes now." She reluctantly accepted that.

Even after my mother and sister moved into their respective care homes, the paperwork continued. I kept going back and forth between their facilities to make sure their new lives were settling in smoothly. The traveling itself never felt like a burden. What struck me the hardest was the silence in our home. Seeing the recipe clippings, my mother had saved, or my sister’s pajamas made it feel like their presence still lingered, as I could almost hear them. But everything had come to a stop. I had never known that kind of loneliness before.

I couldn’t help wondering if I had made the right choice about their lives on their behalf. And that uncertainty came with a quiet sense of guilt. I had dreams where I was sinking into a swamp, or where I lost sight of my mother or sister, even though they had just been there. I would wake up shaken and exhausted. A psychiatrist prescribed lorazepam. To steady myself, I kept going back—sometimes in the middle of the night—to the worn-out checklist, reading it over and over again.

Still, I was fortunate to be surrounded by people in Japan who answered when I reached out for help—friends, relatives, neighbors, staff at my sister's care center, and government workers. As well as friends in New York who stayed close through video chats.

Over the past year and a half, as I traveled back and forth between Japan and the U.S., my mother and sister's new lives in Japan slowly began to take shape. That allowed me to spend more time in my own apartment in New York—and that stability gave me the grounding I desperately needed.

The beginning was shocking, but in many ways, it was a turning point our family would have had to face sooner or later. It took me a while to understand that I needed to see it that way, or I wouldn’t be able to move forward.

When writing my business website's "About" section, I wonder—what has really shaped my life? Of course, many things. But after everything that's happened over the past year and a half, I've come to realize just how deeply I've been shaped by what I've gained—from my late father, from that mother, and from that sister. Growing up in a family where everything revolved around my sister, I thought for a long time that I’d been left to shape my life by myself, with no help or direction. But it turns out, I hadn’t.

Before my mother moved to her care facility, we traveled to the Tohoku region to visit my sister at her new care home. It had been six months since my mother and sister had last seen each other. They embraced, overjoyed. Watching them, I felt like all the struggle had been worth it. And I'll admit—alongside my love for them, there was a quiet, familiar sense of accomplishment. Something not unlike what I feel after finishing a good piece of work.

Now, the three of us live in separate places—Tokyo, Tohoku, and New York. Twice a year, in the summer and at the end of the year, we gather at our home in Tokyo, spend a few days together, then return to our own lives. Each of us still feels the strain of adjusting to this new rhythm in our own way. But this is the life we've chosen. This is what moving forward looks like for us now.

Our second summer reunion is just around the corner.

誰もが人生の節目で選択をする。私は学生時代にコピーライターを志望していたが、卒業後は映像制作会社に入り、映像プロデューサーの道を選んだ。私が生まれ育った日本の当時の風潮に流され婚約したがキャリアを優先し結婚をやめた。その数年後に会社を辞め、身ひとつでニューヨークへ。1年のつもりが、気づけば30年以上、人生の半分以上をアメリカで過ごしている。　

私はほぼ直感で人生を選んできた。深く考え抜いた決断は少ない。自分の人生だから無責任さが許されていた。でも1年半前、家族の人生を決める、という現実に直面した。それは突然やってきたゲームチェンジャーだった。

家族の病気、遠隔地からの介護、手続きの嵐、そして深い孤独 ー 大変な日々だったが、悲劇ではない。壊れそうで壊れなかった時間の中で、これまでの直感とそこからの経験が切り抜けるスキルだった。状況は人それぞれだけれど私だけに起こるわけじゃない。備忘録も兼ねて書いている。

2023年11月、その前の月にひどい風邪をひいた母と妹の体調が心配で私はニューヨークから東京の実家に戻っていた。ある日、ジョギングから帰ると、母が居間でキャビネットの下から何かを取ろうとしていた。近づくと母は動いていなかった。テレビから聞こえる、誰かがガーガーとがなり立てる声が居間の静かさを強調し、テーブルの上にはスプーンですくって二口ほど食べた、熟し過ぎた柿がひしゃげて乗っていた。

私の父はその５年前に他界していて、母は心身障害がある私の妹を世話しながら二人で暮らしていた。母が倒れたとき妹は風呂に入っていた。私は彼女を不安にさせないよう敢えて声をかけなかった。救急隊は「一刻を争う」と言ったが、妹を一人にできなかった。私は妹の支援員に電話し、すぐに家に来てほしいと懇願した。先に母は救急車で病院に向かい、私は妹の支援員の到着を待って追いかけることにした。が、救急車の中で万が一のことになったら看取るのが見知らぬ救急隊員では母は心細かろうと思った。そこで冷蔵庫の横に貼られていた母の手書きの番号に電話をした。誰なのか分からなかったが、母がそこに貼ったのには理由があると思った。電話に出たのは５軒先に住む母と顔見知りの町会の人で彼女が母に付き添って救急車に乗ってくれた。　

母を乗せた救急車のサイレンが遠くなり、ふと母の容態が病院までもてば最期に妹を会わせられる、と思い立った。逸る気持ちを抑えて妹をゆっくりと浴室から出した。不機嫌そうな彼女に簡単な言葉で説明し、手当たり次第にバサバサと洋服を被せ、我が家に向かっている妹の支援員に予定変更の連絡を入れながら、妹を引きずるようにしてタクシーに乗り込んだ。

病院の母は意識があり、妹と手を握り合えた。妹はいつもと様子が違う母をじっと見ていた。私はこれで妹は母が家にいなくても納得してくれるだろうと思った。しかし妹はその日から家でほとんど食事を摂らなくなった。

母は脳出血だった。命は助かったが後遺症が残るので退院後の生活は高齢者施設を視野に入れる必要が出てきた。同時に母と一心同体のように生きてきた妹の生活も考えなければならなかった。母のリハビリ入院の期間は６ヶ月間。このいわば「締め切り」までに彼女たちの新しい人生の方向を決めることになった。まず私は妹が入居する福祉施設を探しを優先した。そしてニューヨークに帰ってテレビの仕事をし、再び日本に来て今度は映画の撮影をしながら退院後の母の高齢者施設を見つけることにした。日本の福祉どころか日本社会での生活から離れている私にとってすべてが手探りだった。

実家にあった、ポスターのような大きなカレンダーを壁からはがし、母・妹・私で色分けした付箋を貼っていった。それぞれの「やることリスト」と「チェックリスト」も作った。家族とはいえ、人の人生の選択をするのは不安で、目に見える判断材料と理由がなければ前に進めなかった。

妹のような重度の心身障害者をすぐ受け入れてくれる施設は、私たちが育った街の近くにはないということが分かった。そこで東京都の委託で運営されている地方の施設を回ることになった。見学の移動距離は合計2000kmにもなった。一方で母のための高齢者施設は、分類も数も多すぎて、日本が高齢者大国である現実を突きつけられ、途方に暮れた。

妹が安心して暮らせそうな施設を見つけたのは２ヶ月後だった。自然豊かな東北の街だ。私が決断した途端、物事が一気に進み、妹は家を離れた。妹のための荷造りは胸が張り裂ける思いだった。妹が毎日通った福祉園の送別会で妹は理由が分からず戸惑いながらも、長年の仲間や指導員に囲まれて笑顔を見せていた。その笑顔を見てまた辛くなり「私が日本に引っ越してきて面倒をみます！」と叫びたくなった。でもそれでは誰のためにもならないと分かっていた。　

たとえ妹が慣れない私に世話をさせてくれたとしても、私が母のように倒れたら妹はどうなるのか。今回、母の病気で大変な事態に直面したが、同時に幸運にも守られていた。母が倒れたのは金曜の夕方。私が日本にいなかったら、登園しない妹を心配した福祉園のスタッフが家を訪ねてくる月曜の朝まで誰にも気づかれなかっただろう。入浴中だった妹は浴室に閉じ込められ、凍えていたかもしれない。

母は退院後、実家近くの高齢者施設に居を移した。私はこの一連の出来事の中で、母にも妹にもできる限り正直に説明することを心がけてきた。障害や認知症があっても、率直な言葉が一番伝わると信じていた。でも母に施設への入居を納得してもらうには、少し言い回しを工夫するしかなかった。どこにも引っ越したくないと言い張る母に、「お母さんは今まで通り家で暮らすよ。ただ私がアメリカにいる間だけ、新しいホームに『お泊まり』に行くの。モノ忘れを心配する必要はないし、ご飯も出る。これからは家が2つあるってこと」と説明した。母は不安げだったがしぶしぶ承諾した。

母と妹が施設に移ったあとも様々な手続きが続き、私は彼らの新しい生活を確認するためにそれぞれの施設を行き来した。母と妹のために飛び回ること自体は苦ではなかった。一番辛かったのは家の中に誰もいないことだった。母が切り抜いて集めた料理のレシピや妹のパジャマを見るとついこの間まで彼らがここで生活していた様子、声までが聞こえてくるようだった。でもすべてが静止していた。あれほど深い孤独をそれまで感じたことがなかった。

私はまた、彼らの人生を私が決めたことに罪悪感があった。夢の中で泥沼に足を取られて沈んだり、目の前にいたはずの母や妹の姿を見失って目が覚める夜が続き、心療内科でロラゼパムを処方された。気持ちを落ち着けるため、夜中でもヨレヨレになった「チェックリスト」を見返した。

それでも私は、助けを求めるたびに応えてくれた人々に恵まれていた。日本の私たち家族の友人知人親戚、妹の福祉園の人々、行政の担当者、町会の人々。ニューヨークの友人たちとのビデオチャット。

この１年半、日本とニューヨークを幾度も往復するうちに日本の母と妹の新しい生活が少しづつだが落ち着き始め、その分私はニューヨークの自分のアパートに戻る時間が増えた。そのことは私の精神を安定させた。

きっかけはショッキングだったけれど、私たち家族にとって遅かれ早かれやってくる人生のターニングポイントだったのだ。

そう思わなくては前に進めないのだ、と分かるまで時間がかかった。

　最近、自分のビジネス用のウェブサイトに載せる「About」を書いていたとき、ふと私の人生って何によって構成されているのか考えた。まあいろんな要素があるのだけれど、この１年半の経験から私の人生を形づくっているのは死んだ父、あの母、あの妹から得たことの影響が思いのほか大きいのだと初めて知った。子どものころから妹が中心で動いてきた家族の中で、私は自分の人生をずっと独断でやってきた気でいたけれど、そうではなかった。

母が施設へ移る前、一緒に東北に暮らす妹を訪ねた。母と妹が抱き合って喜ぶ姿に、それまでの苦労が報われた気がした。そして家族への愛情とは別に、どこか仕事で味わう達成感に似た感情も確かにあった。

　母と妹と私の現在は、異なるそれぞれの場所で暮らし、夏と年末の年に２回、東京の実家に集合して数日間を一緒に過ごし、再び自分たちの生活に戻る。この生活パターンに慣れるために未だ全員それなりのストレスはあるけれど、これが私たちの新たな人生の選択なのだ。

　もうすぐ３人で集まる２度目の夏がやってくる。