A global quandary: Writing illness, protecting dignity

A recent post from Liane prompted me to start writing about this question:

Towards the end of The Good Shufu’s story, My beloved father-in-law, whom I refer to among friends as “Shogun Senior,” begins seriously to decline physically due to Parkinson’s Syndrome. He’s relatively young–only 72–but the illness is brutal and his body, and then his mind, have started, literally, to wither.

Time, I learn, is a thief.

In Japan, the eldest son (known as chonan) and his wife inherit the responsibility for caring for aging parents. My husband T (known among my friends as Shogun Sama–what the Japanese called the North Korean dictator Kim Jong Il–b/c, like his father, he is incredibly stubborn, despite all his charm!) is chonan, and so we live right near Shogun Sr, and much of his daily care has fallen to me while we are waiting for him to move into the care house (what the Japanese call a nursing home).

To illustrate what a sweetie Shogun Sr., is: He barely speaks any English. A few weeks ago he fell and was on the floor, heartbreakingly, overnight. He couldn’t reach his phone, even though it was in his pocket, where we insist he keeps it at all times, since he has refused 24-hour care. When the morning helper-san (“respected helper,” or care worker) came in at 7:30 am, she couldn’t lift him alone, so she handed him the phone and he called me.

“To-ray-shee,” he said into the phone, pronouncing my name, Tracy, like all Japanese people do. “Es, o, es-u,” he said. SOS.

Anyway, I’ve struggled with how to write about Shogun Sr and my role taking care of him, sometimes in the way I would have imagined taking care of our baby, if it had been born. With a baby, though, you don’t have to worry so much about dignity when it comes to their physical needs or helplessness. With Shogun Sr., I want desperately to protect his dignity.

So: How do you write about the physical decline of someone you love, without compromising their dignity?

How do you write the truth and still honor them with the incredible respect they deserve, just for bearing their own decline?

Would love to know if anyone has struggled with this at all, and any answers you’ve come up with!

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About the Good Shufu

What happens when you meet the love of your life, but being together means you must give up almost any plan you’ve ever had? When you fall head over heels for someone from another world, and then must forfeit your entire way of life for his?

The Good Shufu: A Wife in Search of a Life Between East and West is a true story about finding love, meaning, hope, and self in the least likely places in the world: the places we always swore we’d never go. It’s about what we gain, and lose, when we forfeit our plans, goals, and even sometimes homes for that age-old cliche, love.

The book The Good Shufu is forthcoming from Penguin’s Putnam imprint.

In the meantime, here’s how the story begins:

On a typical morning eight years ago, I would wake in my studio apartment in the South End of Boston, with the sun streaming through my large bay windows, and take stock of the life I had planned so carefully over my 36 years. Lying content in my soft white sheets, I’d think gratefully of the PhD in English Literature I had earned at 29, the academic career I had painstakingly built, and the fierce independence I cherished.

On most mornings, I’d linger a while, no complicated marriage or crying child to claim my attention, and luxuriate in the stillness, watching the early light bathe the brownstones of my city. Then I’d climb out of bed, shower, dress, add a swipe of mascara and lipstick, kick on my heels, and dash to my neighborhood café for the chai-soy latté that would fuel my day teaching writing at a Boston-area university.

Before leaving my apartment, I might stop a moment at the bookshelf by my door, run a finger along the spine of my feminist dissertation on gender and sexual violence in early-20th Century literature, and feel thankful once again that I was a woman in contemporary urban America: safe, independent, and yes, over-educated. On my way out, I’d pass the mezuzah my mother had insisted I hang on the doorframe, its tiny Old Testament scroll shrouded in silver, ignored by both me and all my gay neighbors.

Once a week, my ritual differed somewhat. I’d wake at dawn, forgo the makeup and the moment communing with my dissertation, slip into plain scuffed flats, and drive the barren highway to Norfolk Corrections Center, a men’s medium-security prison. I’d have to reach the barbed-wire enclosed complex early, then pass through a series of electric gates before arriving at the classroom, where I’d spend three hours teaching college-level seminars in gender studies to male convicts considerably less feminist than I. Either way, though, whether I was headed to lockup or the Ivory Tower, I’d always begin my morning grounded in the knowledge that I was living, for the most part, the exact life I had planned, in the city I always had—and believed always would—call home. Each aspect of this existence felt like a kind of bulwark, a sturdy negation of the things I swore I’d never do: take blind leaps of faith, move permanently from Boston, become financially dependent on a man, build a traditional nuclear family like my parents, or, perhaps most importantly, cook dinner on a regular basis.

But all this changed the day I fell desperately in love with the least likely partner in the world: a traditional Japanese salary-man—who could barely speak English.

My husband and I met when his company sent him to earn an Executive MBA at the university where I taught. Within three days of meeting, I fell in love, T’s calm movements and thoughtful eyes somehow snaring my heart more completely than any man’s eloquence ever had. Within three weeks, T said, “Lub you” (which I made him repeat three times before realizing this was “love” with a Japanese accent), and we were contemplating a life together across two hemispheres. Within a year—when the sudden death of his mother sent him home permanently to Osaka—I found myself in an entirely new existence, deeply entwined with T, yet utterly lost in his world.

Japan proved both fascinating and profoundly alienating, a place where I could neither speak the language nor read the simplest cultural clues: where I was completely dependent on T to give me money, answer the phone, and order my food; where “yes” only meant yes depending on the tone of its utterance; where, when T’s aunt welcomed me to the family with a full-on kneeling bow, I crouched to the floor alongside her, thinking she had dropped a contact lens; and where, when a doctor first diagnosed my infertility, it was with the words, “I’m sorry, Mrs. Tracy, but your own hormones are out of range.”

The Good Shufu: A Wife in Search of a Life Between East and West traverses this unexpected journey I took from proudly independent, Jewish-American, skeptical academic living a perfectly planned existence in Boston, to illiterate housewife (or shufu) in Osaka, trying desperately to build the very nuclear family I had always disdained—only now with a Petri dish and an army of doctors who barely spoke my language. In the U.S., my mother (whose own meticulously mapped plan involved me under the chuppah with a nice Jewish doctor) fretted over my marriage to someone from, she helpfully pointed out, a former Axis Power.

Meanwhile, in Japan, when I made my first foray into cooking for my future father-in-law, I learned two shocking lessons: 1) most Japanese houses lack ovens, so I had to try stuffing chicken Parmesan into a 3”-high fish grill, and 2) even with breaded Italian cutlets, my new family expected white rice. In my Japanese-language class, I was the only non-Asian and the only woman who did not introduce herself as a “shufu,” or housewife, although this is what I had essentially become, except now I was also completely unable to drive a car (since they drive on the other side of the road), dependent on my husband to handle all my finances (because I could neither communicate with the bank tellers nor read the Japanese ATM screen), and considered an eternal outsider in an utterly insular country.

But through it all, T’s calm, quiet love sustained me. “I feel proud you,” he’d say, beaming, every time I tried to take a new challenge, or embarrassment, in stride. “I love you first in world and always will,” he’d assure me, and somehow that felt more like home than anything ever had. Perhaps more surprising, it made me, at age 41, optimistic enough to want to start a family with him, even though I had no idea how to manage that in a bi-hemispheric marriage, or how I, once a confirmed critic of modern motherhood’s demands on women, could have come to want such a thing—and then undergo four years of rigorous hormone treatments in its pursuit.

Eventually, I find myself still half a planet away from home, and still childless after two miscarriages, hundreds of injections, and countless heartbreaks. But I’m also still deeply in love with my husband, grateful for our life, and more grounded, even hopeful, than I have ever been—not despite all the challenges, but somehow because of them.

Japan will never be easy, but it proves endlessly fascinating; Perhaps, I come to realize, a life worth living doesn’t always have to be easy, comfortable, or a happy reflection of one’s intended plan, as long as it’s filled with wonder and love.

Stay tuned for more posts about the book and its story of clashing cultures and identities within our increasingly global world, but also, ultimately, of unexpected joys found amidst these very collisions, and of traveling to far-flung places only to discover essential truths about self and home.