–My Father’s Passing
I lost my father to a terrible disease last November. In the post below, I discuss my memories of my father and what I learned from him. This experience has also become an incentive to resume this blog, which I had been unable to keep up recently.
昨年11月、大好きな父が亡くなりました。下記の投稿では、父との思い出、父から学んだこと、近年は「多系統萎縮症」という病気に苦しんだ父との関わりについて取り上げました。こうした出来事を受け、しばらくできていなかったこのブログへの投稿を再開したいと思います。
My father passed away suddenly at the end of November. He had been fighting a terminal disease, but he was supposed to have a few more years. I’m reeling from the loss and am trying to focus on the many wonderful memories I have of him.
Childhood Memories
My father was kind, above anything else. As a child, I looked forward to his return every night. He often came back from work carrying gifts, from little cakes to books by my favorite author. He carried me on his shoulders at our condo swimming pool in Hawaii, and on his back inside our condo unit.
He was a voracious reader. As a child, he had supposedly read every single book in his elementary school library. As a young worker in Tokyo, he apparently brought an empty suitcase to work on paydays, made a beeline to Jinbocho (an area in Tokyo known for its many used bookstores) immediately after work, and bought a suitcase’s worth of used books. My mother loves reading as well, so as a family, the three of us often spent evenings in the living room, sitting together and each enjoying a separate book.
He was a jokester, especially when he had a bit to drink. After he tucked me in bed every night, I always asked for a glass of water. “Why would you say that now, *after* I’ve tucked you in?!” he’d always say, pretending to be annoyed as he came back with water. But we did this ritual every night, passing by the kitchen on the way to my room but never discussing water until I was in bed.
Sometimes he was the one going to bed first. He’d be reading in bed as I came to say goodnight. “I’m done reading tonight,” he would say. “Come over here.” When I’d approach him, he’d reach over and pretend to close the book on my face. “I’ve found the perfect bookmark,” he’d laugh, making a pun with my name “Shiori,” which is a homonym for “bookmark” in Japanese. We did this routine a few times, too.
Support for Education
As I grew older, I began to see his more serious side. He didn’t give out compliments easily. When I once handed him my report card in high school, he looked at it and returned it without saying a word (unlike him, I was not a straight-A student). When I told him one morning that I was nervous about an exam that day, he said, “If you had studied for it properly, you wouldn’t be nervous.” Years later, when I was accepted to graduate school, he told me point blank, “I didn’t think you’d get into Columbia” (I suppose that was a compliment…??).
But he was always supportive, especially in terms of my education. When I was a high school student in Hawaii and his company transferred him to the Tokyo headquarters, he headed there alone, leaving my mother with me for a year so that I could complete my studies. When I wanted to go to Dartmouth as an undergraduate student, he allowed me to do so, even though financially it was a difficult decision. He accompanied me from Tokyo to New Hampshire, helping me settle into my dorm, open my bank account, and run other errands. That night, I felt incredibly lonely after he’d left–other students had attended a multi-day pre-enrollment hiking trip, which meant they had already found friends. In a moment of desperation, I called my father at his hotel. He responded sleepily at first but increasingly took on an angry tone when he heard me gripe about feeling lonely. He told me angrily that it was my choice to come here, and that I cannot be complaining already. Even though his words were harsh, it helped me realize that I needed to stick to my decision to attend college far from home.
Recent Years
And far from home I was for the following two decades. I studied abroad, went to grad school, and worked in the U.S. and Europe. I only visited Japan once or twice a year, but my parents and I often met up in other countries and traveled together, visiting museums and enjoying the local food. My father, a big foodie who was also a good cook, kept extensive records of what he ate for each meal during those trips.
My father’s diagnosis three years ago came as a shock. He was the picture of health, but his speech had gradually started to slur. He went through extensive tests, and it took several months until we found what it was: he was suffering from a rare neurological disease called Multiple System Atrophy. None of us had heard of the disease. He was one of 10,000 Japanese people affected by it. The causes are unknown, there is no cure, and worst of all, there is no way to stop the progression of this terminal disease.
My father began to suffer from various symptoms, from losing his ability to walk and speak, to severe rigidity and blurred vision. Due to this debilitating disease that affects autonomic functions, every few months, a new symptom struck a new part of his body. His back gradually became more and more bent. He had to give up a lot of things he loved at a rapid pace. Driving (he had trouble maneuvering the wheel). Eating with enjoyment (he had trouble using utensils). Cooking (he could not use his hands, and was eventually so bent over that his face was dangerously close to the gas stove). Reading atlases and art books (they were now too heavy to hold). Listening to classical music (he was too tired to turn on his grand but complicated Westminster stereo system). My mother took care of him around the clock, which increasingly took a toll on her, too.
For the past three years, I spent months in Tokyo (the pandemic allowed me to work virtually) and helped where I could, cooking meals, tucking him in bed, cheering him up with sweets and stories from DC, and buying tools that I hoped made his life a little easier. Witnessing moments when he had to give things up one by one was difficult–the opposite of how a joyful parent witnesses a child gradually develop skills like walking and talking. Seeing him made me want to cry–but I couldn’t do that in front of him, when he himself didn’t complain. So my mom and I cried with each other after he had gone to bed.
The Last Advice
When I arrived in Tokyo this past November, I saw that his condition had worsened further. But one day, he was in relatively good health. Unlike other days, he never dozed off, and instead quietly read books. It was easier to communicate with him, so I asked him about some questions I had been grappling with. I was unsure about the direction of my career, and asked whether I should take certain steps even when I felt underqualified. “You should try anything you’re curious about,” he said.
My father collapsed the next morning. He never regained consciousness. And two days later, he passed away.
There’s so much that I regret. I never got to thank him for all that he’s done for me. It was incredible that I got to seek advice on the last day before he collapsed–but I didn’t get to say goodnight, and don’t remember what our last verbal exchange was. When I found him the following morning, he was on the floor, not breathing, and he had no pulse. His breathing and heartbeat eventually came back as ambulance workers rushed him to the hospital. My mother and I like to think that he held on for two days so that we could say goodbye to him. And I also feel incredibly lucky that I was with him in Tokyo during his final days.
In the weeks since his passing, my mother and I received so many letters of condolences from my father’s friends. Those letters include memories they had shared with him, from elementary school to graduate school (he studied architecture) to the workplace. It’s a bittersweet feeling to get to know my father in another way, but not having the chance to ask him about it.
As I look around his room–we call it the “music room,” since it’s filled with thousands of his CDs and books–I marvel at the amount of information he’s amassed. I don’t think I’d be able to read everything, like he did in his elementary school library. But I will try to catch up and learn more about his interests and passions. And following his advice, I want to resume this blog too. I had been busy with my daily work, but I want to find a way to pursue both.
During his final years, I felt a mixed sense of melancholy and happiness when I helped him lie down in bed at night, putting away his glasses and tucking the sheets around his neck as he closed his eyes and smiled peacefully. While he never asked for a glass of water, it was nice to be able to help him rest, just like he had helped me.
I want to say now the words I couldn’t say that final evening:
“Thank you, Dad–and goodnight.”
And I really hope we meet again.