This is a post about death and dying. “There’s nothing to see here, folks. Move along, move along.”
I didn’t plan on looking at the body, but when my sister and mother did, I had to. It wasn’t him. He was done with that shell. The body that had betrayed him. He had left already, with his last breath — that had been hard to witness, had left me kind of numb. Exhausted. So seeing his body now, in the casket, was more abstract. My sister was crying. My mother silent. I was watching myself in that room.
The crematorium was a bizarre mix of French Rennaisance architecture and well-worn industrial utility. Ornate gothic arches, carved doors, steel platforms, and the cremation chamber. The low, faint rumble of the furnace behind the wall.
The attendants closed the casket, rolled it to the conveyor platform, engaged the electric lift up into alignment, and rolled my father’s body in its wood-and-silk container through the double-double doors, into the furnace. The casket clunked down before disappearing inside.
We walked outside and watched the black and gray smoke, streaked by tears, drift up into the sun.
A year and a half ago, Dad was rushed to the hospital, unable to walk or move his left side. Subdural hematoma. It was mere luck that my sister had come to visit: There he was, lying on the floor of the livingroom.
“What are you doing down there, Dad?” my sister asked.
“So get up!”
We all thought this was perhaps an injury. It’s what the doctors assumed. Maybe he bumped his head and didn’t remember it?
However, as we talked with the medical team more, we learned that, for the previous two years, Dad had been undergoing treatment for metastatic prostate cancer.
He had never told us. Never told anyone. And if the hematoma had not happened, I don’t know when we would have learned of this. He was embarrassed. Always a private person, he didn’t want anyone to know.
I drove out to California to spend time with him. I set up in a hotel where I could get work done for a few hours before heading over to his house. I drove him to medical appointments. We went out for meals. We talked. We got to know each other really for the first time.
A scan revealed a mass in his brain. Tests from the surgery revealed that this was not the prostate cancer. This was melanoma.
We didn’t know if 4 or 40 people would show up for the memorial service. 100 people came. Some in their 80s, many in their 50s, quite a few in their 20s and 30s. As the small chapel filled up, the funeral home silently and efficiently provided extra folding chairs.
There was no murmur of conversations. Everyone sat quietly in their own thoughts while the first two movements of Beethoven’s Appasionata piano sonata played almost too low to hear.
There was no pastor or “celebrant.” We didn’t want a stranger to speak for Dad. For us. We wanted only people close to Dad to speak.
First was a friend and colleague from the university, Linda, who revealed a side of Dad I knew of but never really knew. She shared about first meeting Dad, working with Dad, his regular lunches with his friends. She read from letters he had received from students over the years. “You are why I am who I am now,” was the gist of all of them. He had changed their lives. Encouraged them when they were down. Made it easy for them to try again rather than give up. And invited some to try in the first place. The waitress who became a law student, working as a paralegal. The Iraq veteran who worked his way to being a university professor. It was amazing and awesome to hear all these voices of lives he touched and changed for the better.
Then a friend from the gym spoke, sharing anecdotes from another side of Dad’s life most everyone else never saw: his workout life. There, lifting weights with these guys from other walks of life, Dad talked about us, his kids. We heard about his pride in my sister, who is an amazing RN, who has a beautiful daughter, my niece, who really is smarter, more talented and more beautiful than all the other kids. And then we heard about Dad’s pride in me. Words of praise that I rarely heard from his own lips. Words that I would never hear again. Words that had me weeping.
It was my turn. I read the things I had written on my laptop in bed all through the night before. It’s hard to talk while sobbing. I was completely drained at the end. People came up to me afterwards and thanked me and offered condolences. I was overwhelmed with grief, relief, self-pity, admiration of others, amazement at all these things people said of Dad. I drove to the house numb, and fixed bloody marys. It had been 8 weeks straight, this ordeal. Of course I was ready to get to work next week. Sure.
When my sister had called me last November to tell me Dad fell again and was in the hospital, I somehow knew this was it. I drove out to California again, 15 hours straight, arriving at 5:30am, and was promptly swallowed into a parallel existence, a world where the spectre of death is a constant presence, where “normal” life passes by and through and all around, but without effect. I had been girding myself for this moment, Dad’s final days. I wasn’t prepared for this parallel out-of-phase world.
The nursing home was awful. The staff was nice, but also overworked. The rooms had three or four beds each. This place felt dingy, dark. A place of death.
Dad was being admitted for physical therapy to recover his balance, but when we arrived there from the hospital, we all looked at each other and didn’t say what we feared: “This is where Dad is going to die.”
The saddest thing was that the other patients were, for the most part, alone. Few if any visitors. They were just dumped there by relatives, like unwanted pets at an animal shelter. Yes, death and dying are hard to face, but to hide from such suffering seems beyond selfish, bordering on cruelty. They were there to suffer and die alone, out of sight.
We tag-teamed to stay with Dad most of the day, every day.
On Thanksgiving, we took him to his house for a few hours. He was wheelchair-bound at that point, but he was in great spirits. He told stories. He ate a ton of turkey. His energy was up the entire time. It was a great day. We took him back to the nursing home, encouraged.
The next day he slept most of the day. His energy never returned to the same level. When it became clear the physical therapy was not helping, we took Dad home.
The HMO set up a hospital bed in his living room, and provided oxygen and palliative meds. We had to hire an in-home caregiver to help. And then we all did what we could to make him as comfortable as possible.
I took every opportunity to go out to run errands — groceries, meds, take-out meals. I felt like such a coward, but I told myself I was being useful. And while I could get away for an hour or two from the surface reality of Dad’s decline, it did nothing about getting away from the overwhelming truth that death was coming.
The Christmas carols playing in the stores was surreal. Way out of sync with where I was at. I could feel them pressing down upon me, pressing in. These songs had always been there, and always would be there. But now they didn’t touch me, they alienated me, painting a reality that was all around me and without relevance.
Online it was the same. I watched tweets flying by, Facebook streaming, feeds updating on subjects that normally would interest me, but didn’t now. Tech, politics, food, it didn’t matter. I couldn’t get myself to care. Only one voice connected with me in this time. Xeni Jardin was facing down that dread diagnosis. Hers was a voice from the other side of the same vortex, a voice crying out defiance of that spectre of mortality. Her strength and determined optimism was a welcome respite from the terminal gloom all around me. She understands. She is on an opposite vector, but then and now, her words have been in phase with my reality.
Breast cancer has taken away from me the illusion that life stretches on into forever, but has illuminated the fact that love does.
—Xeni Jardin (@xeni) February 14, 2012
I think of her frequently, look up her tweets to see how she’s doing.
Before all this, three years ago, we had Christmas at my sister’s house. We came from all over to be there. Dad flew in from California, but he wasn’t his usual lecturing self. He was mostly withdrawn, sometimes reading, sometimes just sitting there thinking, staring off into the infinite. He didn’t engage much with any of us, even his granddaughter. We didn’t think much of it, though. He could be moody. Disappointing for his family on the holidays, but not necessarily out of character.
The New Year came and we went on with our lives. Dad went back home, back to his routine of teaching and going to the gym. We kept in touch by phone. My sister visited him occasionally. I confess I did not until after the hematoma incident. He and I had had a rocky relationship most of my life, and had found a comfortable equilibrium with thousands of miles between us. But now he was much nicer on the phone, and we had some really great conversations. He went on with his secret oncology treatments, of which we knew nothing. Because of his regular workouts, he was in great shape, much better than I. He was in his late 70s but looked 10-20 years younger. I was convinced he’d live to 100.
Dad’s last day was almost unbearable to witness. In the middle of the night his breathing became very labored, very rapid. The “death rattle” of every inhale, every exhale. Heart racing. Unable to talk. I’m not what you would call a religious person, but seeing him struggle like that, I closed my eyes and prayed for god, angels, the flying spaghetti monster, anyone to ease his suffering. A few moments later, he muttered, “No, I don’t want to, I don’t want to,” and he hung on.
I stayed by his side. I couldn’t imagine it being easier leaving him to die alone. The sun rose, daylight streamed into the house, and he hung on. We stayed with him. My sister comforted him. I held his hand, talked to him, rubbed his shoulder, stroked his brow. There was nothing else we could do but be there with him.
Hours later, his breathing slowed. He was exhausted, with no more fight in him. Then he inhaled, let it out, and there was not another. And a tear rolled from his eye.