The Time of Wounded Thinking

Kwija Lee, 1963-2017
Kwija Lee, 1963–2017

After my wife of 27 years was diagnosed with Stage 4 breast cancer, I started to describe her as the world’s healthiest terminally ill person.

The cancer had metastasized in her lungs. She had difficulty breathing when fluid accumulated, but once the fluid was drained, she returned to her active life. She laughed with friends, cooked, cleaned the house, knitted sweaters. She went to yoga class two or three times a week.

I was retired and she was on disability so we had lots of time together. We ate huge dim sum lunches and hiked to the top of a small mountain near our house in Eugene, Oregon. We traveled a lot. We spent a month in Japan where she grew up and where we met in 1983. We stayed with her sisters and took side trips to Hokaido hot spring resorts.

We visited Thailand where we lived in the 1990s. We went to Yellowstone Park in the winter and snowshoed around Old Faithful. We hiked the Grand Canyon of Kuwaii, Hawaii and desert trails outside Tucson, Arizona.

We remodeled our kitchen. We choose stone countertops, tile, light fixtures, new appliances. She haggled with the vendors when they delivered a faulty refrigerator.

All the while, I periodically re-read a passage saved on my smartphone:

People with incurable cancers, for instance, can do remarkably well for a long time after diagnosis. They undergo treatment. Symptoms come under control. They resume regular life. They don’t feel sick. But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses. Eventually, it makes itself known, turning up in the lungs, or in the brain, or in the spine… From there, the decline is often relatively rapid, much as in the past. Death occurs later, but the trajectory remains the same. In a matter of months or weeks, the body becomes overwhelmed. That is why, although the diagnosis may have been present for years, death can still come as a surprise. The road that seemed so straight and steady can still disappear, putting a person on a fast and steep slide down. — Atul Gawande, Being Mortal

I developed a habit — a tic — that I repeated in inconsequential moments. When I rose from a chair, walked from one room to another, or climbed the stairs I’d shake my head and mutter to myself “fuck” or “god damn.”

Nobody noticed it. The dread passed as soon as I started the next task. But it served a purpose. It became a compulsion to regularly remind myself that things would soon be very different — that the night brigade was advancing on the happy life I shared with my darling Kwija.

This is the story of what happened after the night brigade destroyed Kwija‘s defenses and she entered hospice at age 54. I want to write about how she died and how I coped with the grief.

In The Year of Magical Thinking Joan Didion describes grief as “the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself.”

Didion set the standard for writing about the death of a spouse. But I’m here to say she’s wrong. Grief is not a confrontation with meaninglessness. Watching death and coping with grief wear you so raw — so fully tenderize you — that the most insignificant things become more meaningful than you can bear or comprehend.

When the disease finally made itself known, it appeared first in Kwija’s spine and later, overwhelmingly, in her liver. The oncologist showed us the cat-scan. Her liver was covered with ghostly overlapping tumors. The doctor said, “That’s a bad liver.”

We had air tickets to visit our daughter who had started graduate school in New York City. Squeezing in this last trip was a bad idea. She might fall into a coma and be unable to travel back home.

The doctor gave her a choice between experimental chemo and entering hospice “to live out the time you have left as pleasantly as possible.” Sitting in his office, Kwija’s first inclination was to go into hospice. We drove away from the Cancer Center to Eugene’s fancy French restaurant. We ate steak frites together. Kwija decided on hospice.

This was so much like her. When she faced menial tasks — completing tax forms or filing away receipts — she was a champion procrastinator. She could ignore a pile of papers for months. But when she faced a difficult situation, she was fearless: Marry a foreigner, move to another country, give birth to our daughter and son. She’d make her decision and then — no more fuss.

She never thought she was being special. She thought she was behaving like normal person. In this sense, she was an extraordinary person.

The only way I could get a grip on the fact that she was entering hospice — that this was finally, really happening — was to revert to project management mode. I tend to cope with unpleasant situations by breaking them into multiple phases. When I’m overwhelmed, I apportion the future into discrete chunks. This was the only way I could explain what we faced to our children, Julia (24) and Peter (21).

OK. Mom’s going into hospice. This will be a project with three phases.
In Phase I, we support Mom through home hospice. We make her comfortable as best we can and ease the process of her dying. If it becomes too heavy, you can turn away. But if you can stick with it, I think you will be glad you did.
Phase I ends when Mom dies.
In Phase II, we organize and hold ceremonies and memorials. We receive her grieving friends and family. Phase II ends when the last out-of-town guest leaves.
In Phase III, we adapt to the fact that Mom is gone.
Phase III never ends.

The medical supply delivery man set up an electric-powered hospital bed in our living room. The hospice nurse gave us a workbook and medicines — pain killers and anxiety reducers. When we gave Kwija medicine, we recorded the time and dosage in the workbook. When we made smoothies and miso soup for Kwija, we wrote in the workbook how much she ate when.

My kids tease me for always being so damned practical. But they appreciated how the project management approach inspired a sense of confidence in us. The confidence did not elimate the pain. But we learned something important: Confidence can coexist with heartbreak.

This combination had a strange effect on me. It provided a clarity that allowed the majesty of what was happening to shine through. I witnessed scenes of heartbreaking poignancy with an odd detachment, as if the events were not happening to me personally.

Early one morning, I looked in the backyard and saw a woman who knew she would die soon (my wife) stand in the garden to rub her belly and soak up the morning sun.

One afternoon, I witnessed a dying mother muster the strength to sit up in bed so she could comfort her grieving boy (our son).

Despite my confidence, sometimes I didn’t know what to do for her. As long as she was able to walk on her own, we slept together in our bedroom — in the bed we shared for years. In the mornings, I’d help her to the living room hospital bed. Then during the night, terrible periods of restlessness started.

She’d reach out to me and try to pull herself out of bed. I wanted to help her but couldn’t figure out where she wanted to go. She didn’t know herself. Eventually, she’d collapse back onto the bed. I explained her nighttime struggles to the hospice nurse, and the nurse said, somewhat ominously, “Her process is moving along.”

I later learned the technical term: “terminal restlessness,” an agitated state that people experience during the “active stage” of dying. As horrible as it is to watch, people do not usually die in the throws of terminal restlessness. It is their last ditch effort to get up and away from death. They still have some fight left.

A couple days later, she could not walk on her own. So she remained in the living room hospital bed day and night. It allowed us to rally around her.

And just when we felt we had figured out hospice care, she fell into a coma. By then we knew how to cool her down with cold compresses and how to pull her up in bed to ease her breathing. We examined her for bedsores. Her two children knew how to rock their mother backwards and lift her legs to change her diaper.

We hit on a fool-proof way to manage the timing and dosage of painkillers and anti-anxiety medicine. We mixed the medicines then filled the mixture into syringes. On each syringe, we stuck a sticky note with the time to administer (11 pm, 3 am, 7 am). We set smart phone alarms to wake us on time. We were on top of it now. We were willing to keep up this routine for the next thirty years.

Kwija was not talking anymore. She could not focus her eyes. I leaned close to her head and said, “See, sweetie. See how me and Julia and Peter are working together to take care of you. See how good your kids are.”

Part of me wanted her to know that her family was around her, that we were capable, that it was safe for her to let go. Another part of me was pleading: “We finally got a handle on this, darling. Don’t die now.”

It was Father’s Day night. It was the first night in a while that we got to bed at a decent time. Peter was stretched out on the living room couch. Julia and Kwija’s sister were in the upstairs bedroom. I was on a mat on the floor next to Kwija, within hand-holding distance.

We all actually fell asleep. I know because the 11 pm alarm woke me up. Peter got up from the couch and brought the prepared syringe to the bed. I stood at the head of the bed and leaned over to cup my palms on Kwija’s cheeks to steady her while Peter inserted the syringe in the corner of her mouth. Peter eased in the medicine.

I said, “I don’t think she’s breathing.” Peter put his ear against Kwija’s chest and started to cry.

She must have just died because, as I held her face in my hands, it was still so beautiful. She was beautiful from the first moment I saw her until the very end. I knew her face so well that I could tell with a glance if she was happy or angry or sad… or if she was hiding her feelings from me.

I adored her face. Her body was the object I most cherished in this physical realm. And suddenly all attraction fell away. She did not need her body anymore. To me it became an inanimate object of no interest at all.

In almost every photograph the two of us are in, we are holding hands, or leaning into each other or I have my fingers wrapped around her arm. Now I couldn’t touch her. I asked Julia to take off her wedding ring. Julia removed it and placed it on Kwija’s chest. A few minutes later, I picked up the ring, dropped it into a silver bowl and said in a loud voice hoping she would hear, “Thank you darling for a wonderful marriage.”

I called our good friend Patrick who is the priest at the Buddhist temple in Eugene. He was ready for us. He came with his wife and eldest daughter. He chanted. One by one, we bowed to the body and offered incense. Then we put on Kwija’s favorite singer, Otis Redding, cracked a couple beers and had a short wake.

Eventually Patrick called the morticians to come collect the body. And again, I witnessed a scene of heartbreaking poignancy. I saw the strength of a daughter dissolve into uncontrolled sobs after her mother’s body was carried out the front door of the house where she grew up.

The senior mortician — a dignified old pro — had prepared the body for transport with calm mastery. His adolescent apprentice — earnest but awkward — had fumbled with his end of the gurney. As they guided the gurney away from our house, the apprentice accidentally crushed a plant that my daughter had recently planted. That’s when she collapsed in tears.

At first, it was impossible to grasp the enormity of what happened and how to respond. But strangely, after a terrible night’s sleep alone in our double bed, I would wake up and the next thing to do would be obvious. This is how we muddled through Phase II: ceremonies and public grieving.

She wanted a cremation. We assembled items she loved so they could be burned with her. Yarn and knitting needles. An Otis Redding album, wild flowers, extra toe socks, chopsticks with her name on them. Flip flops. Yoga mat.

On the wall in the living room near where she died, we put up a shelf to serve as a home altar. On the shelf, I put a picture of her from when we first met and another picture of her on our last trip to Thailand. There is also a Japanese ceramic pot for burning incense, a small urn with some of her ashes and a bud vase for holding a single wildflower.

Kwija said she wanted a wisteria planted in the backyard in her memory. We built an arbor around the deck and planted the wisteria in a ceremony with a few close friends. I plan to prune assiduously so the vines grow in straight lines and the flowers hang like a curtain when they bloom.

A surprising thing about Phase II was the cascade of reactions that came after I told people my wife died. I learned to gear myself up for the exchange like this:

O.k. I’m going to tell them now. They are going to immediately react in accordance with their acceptance and understanding of death. Immediately after that, I am going to react to how they reacted.

I reacted to some reactions better than others. One of Kwija’s yoga friends just shook his head and kept repeating “Yeah. Wow. Yeah. Wow.” I liked it when people were tongue tied. I’d let them stammer a bit then interrupt: “You don’t have to say anything.”

My favorite was from an acquaintance who I’d not seen for a while and who wasn’t aware of Kwija’s condition. He screwed up his face incredulously: “Dead? She’s dead? She died?” Yep. That’s just how I feel.

Other reactions I liked less. Some people tried to comfort me by saying Kwija was still with me. What part of her could still be with me? A neighbor asked, “How is the hospice going?” Now how the hell are you supposed to answer that question? “It went well. She died.” Blank stare.

No matter the reaction, I came to see that the important thing when talking to people about Kwija’s death was to invoke memories we could share about her. That is the purpose of public grieving. Her Celebration of Life was coming and I knew I had to deliver a eulogy. I wanted my eulogy to invoke her memory but I also had to respect instructions she gave me before she died: “No long speeches.”

That was fine because, as I wrote the eulogy, my mind wouldn’t settle on any specific stories about her. Instead my mind buzzed with a general essence of Kwija, with non-specific Kwija vibration.

My eulogy told of the ordinary things that caused the Kwija vibration to wash over me: How she moved and acted with quiet concentration. How she enjoyed her food with such deep satisfaction. How she moved her hands when she talked. How she smiled.

I told how, in the mornings, I loved to watch her tuck and smooth the various layers of her clothing as she dressed for the day. And at night, how I loved to watch her tuck and smooth the various layers of her pajamas before she got into bed with lucky lucky me.

But more than anything, I wanted everyone to know how my life was now completely filled with her absence.

Phase III. Adapting to life without her. The final never-ending phase we’d each have to tackle on our own. Her sisters went back to their husbands in Japan. Peter and Julia went back to school. Everyone returned to a previously-scheduled life. Not me. I had to create a new one. During her illness, death and ceremonies, I had a handle on the situation. Now I didn’t have a handle on anything at all.

Where will I go? What will I do? Who will I do it with? In a happier situation, these might be inspiring questions. But in grief, these questions seep down deep. They mess with the structure of your identity. You wonder who you are and why you are here. You can’t see how your inner-landscape will ever be reconfigured to account for the fact that your beloved is gone for ever.

Normally, the human mind excels at quickly evaluating and re-evaluating other people. The mind instantly slots people into categories: friend, foe, cheater, cooperator, high status person to fear, high status person to suck to, possible mate, outsider.

In most instances when a relationship with a person changes dramatically, the mind effortlessly updates that person’s status to a new category. While we may be upset by the change, there is no doubt about the person’s new status. But I believe the mind simply lacks a ready-made category for “dead loved one.”

I rationally knew she is dead, but it did not feel like it at a visceral level. While I could easily update the status of a colleague from “trusted cooperator” to “unreliable cooperator,” there seemed to be no way to update Kwija’s status from “beloved wife” to “dead wife.” The part of me that was bonded to her assumed she was just away for a while. She’d be back soon.

I therefore believe that grief results from a design flaw, or at least a missing mental ability. Death of a loved one is inevitabile. But the mind has no way to allow for it. There is no pre-defined category for dead wife.

Some people say grief is the body’s natural healing process in response to death — as if the body possessed an unbounded wisdom. I take a more constrained view simply because it is obvious that human bodies do not always know what is best for us. I don’t believe grief is a healing process. I think grief is what happens because of the inability to process.

That’s why, in the weeks and months after her death, my mind continued to buzz with a general essence of Kwija — the collection of feelings and memories that form my bond to her. The mental and physical pain of grief arise from the impossible craving to renew this bond.

When she was alive, renewing our bond was fun and easy. We’d hold hands, joke, kiss and I would feed my attachment to her. We’d share a snack, talk about the kids, look at the moon and I would recharge myself with essance of Kwija. This topping up was the joy of our marriage. Then she died and my mind could not process the fact that she was dead. I craved renewal of a bond that would never again be fulfilled.

It is unlike any other challenge I’ve faced. The only thing you can do is cope. You can’t visualize any goal and or determine a reasonable response. It is not something you can “nail” or “hit out of the park.” You are broken and all you can do is pull yourself from the wreckage and brace for the aftershocks. Positive thinking becomes impossible because thinking itself is wounded.

Wounded thinking makes you ask yourself some strange questions:

  • Where do I get off having fun while she is dead?
  • If I was only happy when she was happy, how am I supposed to know when I’m happy now?
  • If I were the one who died and not her, what would she be doing now?
  • I need to replace her, immediately. Where can I find another woman to whom I have been married for 27 years?

Wounded thinking gets you talking to yourself. Example: The last time Kwija and I said “I love you” to each other, I started to feel overwhelmed. She waved me off. She didn’t want to see me breakdown. She had to do what she had to do. My negativity was just going to make it harder.

But weeks after her death, I found myself muttering “Darling, I love you so much.” The fact that I was muttering to myself did not bother me. But I thought it wise to nudge my wounded thinking. After three months I forced myself to mutter, “I loved you so much.” After six months I tried, “I loved her so much.”

Wounded thinking fed my head shaking habit. I was still shaking my head and whispering “fuck” every time I walked into the kitchen. I started to ask myself, what am I dreading now? The rest of my life?

I did not want to dread the rest of my life. Especially not out of habit. Fortunately, a friend gave me an helpful way to view my situation. Assuming I live to 90, my life will include three acts of 30 years: zero to 30; 30 to 60; 60 to 90. Since Kwija died when I was 59, the curtain was now rising on my Act 3.

My Life in Three Acts
Act I In which I am raised and live as single adult. Ends with my marriage.
Act II In which I have a career and raise two children with my wife. Ends with my wife’s death.
Act III In which a whole heck of a lot more stuff is going to happen. Ends with my death.

With Act III beginning, it didn’t feel right to wear my wedding ring any more. But it didn’t feel right to remove it. After 27 years, the skin at the base of my finger was compressed into a pale indentation.

I decided to fill the blank with a tattoo. I never wanted a tattoo before. Still, some part of me sensed that having a tattoo would be mean a lot. That part of me drag dragged the other parts into the tattoo parlor.

My tattoo artist, Etzel, said “I won’t lie. This is not going to feel good.” He grabbed my ring finger and bent it to expose the pale skin where my wedding band used to be. He lowered the tattoo machine and drew a single stroke — a black line to divide all that came before and all that will come after.

I regretted it immediately. It felt so permanent, so “not me.” I soon saw this as another layer of the tattoo’s symbolism.

Being a tattoo, it was an indelible change, at first unsettling, but something I would eventually adapt to. Being black, it represented widowerhood. Being on my ring finger, it was a memorial my marriage with Kwija. Being a thin line, it could be covered with another wedding band should I ever remarry.

I got used to it quickly. So much so I imagined everyone knew a black tattoo on the ring finger meant widower. If people asked “Are you married?” I wanted to show them the back of my left hand. “Widowed. See.”

Everybody warns you that the first Christmas and New Year’s are hard. As badly as I missed Kwija my wife, when the holidays came, it was Kwija mother of my children who I missed terribly.

I never appreciated it before, but in the days before Christmas, Kwija and I reinforced our deepest bond. We’d clean the house, make the beds and fill the fridge. Together, we’d feather our nest for Julia and Peter’s homecoming.

Now I had to put fresh sheets on the kids’ beds all by myself. I never felt so bereft as when I reached across Julia’s mattress to pull the corner of her sheet tight. Kwija and I had made our kids’ beds together hundreds of time. I doubted my ability to generate the necessary Christmas homeyness without her.

Julia and Peter never complained. Just the opposite. They took the lead in generating the homeyness. It was our tradition to work in the kitchen together all day to prepare a complicated Christmas dinner. In all previous Christmases with Kwija, we stuffed and roasted a turkey. Peter and Julia decided to switch this year to something equally complicated — a Beef Wellington.

But after the presents were opened and time came to start cooking, I broke tradition and kept out of the kitchen. I stretched out on the living room carpet and maintained a low-level buzz by sipping plum wine all day.

The Beef Wellington came out fine. We cut three thick slices for our dinner plates and set them on the table. A smaller slice on a smaller dish went on Kwija’s altar. Christmas Dinner 1 without her.

The three of us decided the Beef Wellington was too rich. We’ll try something else Christmas 2.

New Year’s was harder because New Year’s was Kwija’s holiday. The Japanese have lots of New Year‘s traditions and Julia appointed herself guardian of all. She prodded me join the year-end deep cleaning and once I got into it, I felt better. I enjoyed watching Julia scrub and sweep with the same fervor as her mom. But Julia was not as sure about many other traditions. How do you make the sauce that goes with mochi? She wished she had paid better attention when her mom was alive. I said, “You didn’t know there would be a test so soon.”

Over the holidays, the kids and I developed a new ritual. When we parted, we’d hug and exchange pro forma sympathies:

“Bye. Sorry your mom died.”

“Bye. Sorry your wife died.”

The day after New Years, I was ready to get the heck out of Oregon. I knew once the holidays were over I’d have three months of cold, dark and rain with nothing to do besides mope around the house, muttering to my dead wife.

So I planned an escape. I’d spend this first winter in Thailand. Kwija and I had lived in Thailand for a couple of years when Julia was little. I had friends in Bangkok. I spoke Thai well enough to get around and make Thai friends.

It seemed like a no-miss proposition: A healing journey in the Land of Smiles. But the journey began with a slide down a pit of suicidal despair.

I can’t believe I described my beloved Thailand as a pit of despair. On all previous arrivals, walking out of the Bangkok airport into the tropical heat always promised excitement and adventure. But this time during the taxi ride into the city I was weeping. Thailand was an important place for me and Kwija; we enjoyed so much about it together. I felt I couldn’t enjoy it without her.

The despair struck on the flight over. I was wedged between two middle aged Asian guys. For six hours, we were shoulder to shoulder, ignoring each other. I remembered how you can feel utterly alone in Asia, even when you are surrounded by crowds of people.

So different from the many flights Kwija and I took to Asia during our marriage. She would lean into my arm and I would squeeze her knee. We’d toast each other with complementary beer and congratulate ourselves that the planning was over and our trip was finally, really happening.

This time without her, the simple reliable pleasures of Thailand made me choke up. On my first morning, I went out to buy cut pineapple and papaya for breakfast, just as I did when I lived there with Kwija. I could still see her smiling and talking as she stabbed fruit chunks and popped them in her mouth.

I tried to snap out of it: “Come on! It’s Act 3…in Thailand!” But all coping mechanisms failed and wounded thinking spiraled down with depressing logic.

I don’t want to live in Bangkok without her…I don’t want to live without her…I don’t want to live. If her death us did part, maybe my death us will rejoin.

I have enough detachment to call out suicidal ideation when I see it…and not go there. I figured it was the jet lag and sleep deprivation. I figured it was because I was suddenly in a far away place with nothing much to do and therefore was helpless against pent-up waves of grief. It was all of those, but mostly it was because I was coming down with the flu.

I almost passed out in a crowed Bangkok department store the day before the flu leveled me. I spent the next 36 hours in bed sobbing with fever and chills, counting my breaths, trying to hold on. It was the first time in decades I’ve been that sick and all alone. At least I didn’t have to admit myself to a Bangkok hospital.

I did recover, but it took three weeks to start feeling good about being in Thailand. Maybe there are lower lows to come, but I’d like to think that the period of illness and suicidal despair was a dark night from which I emerged with a more stable stance.

The stability came because my despair never felt “meaningless.” I did not experience “the void.” I experienced an overflowing of intense and unpleasant emotion. There was a richness to it — perhaps even a welling of gratitude — because I always knew my despair arose from the fact that I was in love with a good woman. And she died.

Soon after, I started to write this essay. I started writing not so much to “get my feelings out” as to “settle my memories down.” It hurts to type these words: All I have left of my darling Kwija are memories. It seems that in order to move forward I have to settle these memories into stable passages so the waves of wounded thinking can flow through.

Post Script I wanted to start this story with Kwija’s picture. I selected an image where she is smiling her squinty smile and holding chopsticks in her resting hand. For a caption, I typed the dates of her birth and death. I hit preview. The tall rectangular photo looked like a tombstone: “Kwija Lee, 1963–2017”. Yeah. Wow. A tombstone I posted to the internet.

Julia, Jourdan, Kwija and Peter
Julia, Jourdan, Kwija and Peter

Jourdan Arenson lives in Eugene, Oregon and writes essays, op-eds and satire. See more here.