Last Words: What Really Matters at the End of Live

We’re going to talk about the rain, and I’m glad it is actually raining so that makes sense.

From what I hear, I’m the second linguist ever to be on this stage. The first one lost his voice.

I’m going to try not to lose mine. I might cry, but I’m not going to lose my voice.

That is ironic because a linguist is someone interested in the languages of the world, language in the brain, and language in social life.

In my book, Bye Bye, I Love You, I wrote about the first words of babies, the last words of the dying, the relationship between them, and what remains when language fades.

People ask how I became interested in that subject.

I remember holding my newborn son in my arms, listening to his coos and gurgles, and realizing I was witnessing the beginning of something.

It was not language yet, but it would become language. Sixteen years later, it is still going, and it is amazing.

He was reaching out. He was beginning to interact. I felt privileged to witness it.

But it also struck me that, if life unfolded as it was supposed to, I would not be there to see how his language ended.

For some strange reason, because this is how my brain works, I thought of his first vocalizations as a kind of memento mori, a recognition that we all die.

First and last words were an irresistible pair for the writer and linguist in me. I wanted to explore the rhythms of linguistic finitude and the linguistics of care.

Who would not want to write about that? I certainly did.

But I was not ready to confront the death and dying part of that arc in any concrete way.

A few years later, I had the opportunity.

I was foraging for wild blackberries in the woods in Maine, where I lived at the time, when I encountered human remains.

They belonged to a woman named Tanya who had lived on the streets and disappeared about a year earlier.

Her story came to shape my own because the discovery shocked me. It stopped me in my tracks.

I became consumed by questions about who she was to me and how to care for the dead, particularly under circumstances in which I had never known the person.

I turned to the anthropology of death and dying and did a great deal of reading, which led me to the work of people like Stephen Jenkinson.

After years of this, I realized I was ready to examine language at the very end of life in a concrete way.

I wanted to know what really happens.

What do people say and do at the end of life?

All I had in my mind were the same things many people probably have when they lack the experiences that many of you have. I had collections of the last words of famous people. I had what movies show us. And I had what my grandmother said to me.

But as a linguist, I wanted to know what was typical and what range of experiences people might encounter.

It turns out that what happens is not necessarily what we hope will happen.

We hope for words. We hope for sense. We hope for words that make sense.

We hope for eloquence, something profound, or perhaps something witty.

We hope for a message that provides connection or redemption.

We expect the individual to retain their linguistic abilities long enough to say something unique, spontaneous, and unscripted about where they are and who they are in that moment.

Perhaps they will reflect on their life and bring it to a close like the final stanza of a poem.

I compare moments like that to rainbows.

They happen, but they are unpredictable. They emerge under a narrow set of conditions, which makes them relatively rare.

You would not want to plan around the rainbows.

As someone who lives in a very wet country in Northern Europe, I can tell you that it is smart to plan for rain.

You wake up, see whether it will rain, and dress accordingly.

It is about more than staying dry and comfortable. I would not want to live in a city that planned only for rainbows because its residents would be vulnerable to floods.

So what does the research tell us about the rain?

When I examined it as a linguist, I found that people tend not to lose their linguistic abilities all at once.

The process is progressive and nonlinear. As one person described it, it is wildly fluctuating.

People may continue speaking, but what they say might be banal. It might be bizarre or difficult to interpret.

You may realize only in retrospect that something was the final thing they would ever say.

Much of what we know comes from research involving cancer patients rather than people dying along other trajectories.

Just as speakers are diverse, dying speakers are diverse.

There are patterns among Deaf people, multilingual speakers, very young children, and people with dementia that have yet to be fully mapped.

Still, there is interesting research that can help us form more realistic expectations.

People approaching death appear to rely heavily on what I call formulaic utterances.

These are groups of words we learn and store in our brains as complete chunks. We say them frequently throughout our lives, so they remain relatively easy to access during stressful situations.

“I love you.”

“Thank you.”

“I’m sorry.”

“Am I dying?”

“Nurse.”

Names and curses also fall into this category.

I found several other useful and interesting things.

Among the cancer patients studied, only about half were capable of meaningful communication during the final three days of life.

That proportion fell to approximately one-third on the final day.

One of the most reliable indicators that someone will die within three days is that they stop responding to verbal stimuli.

Even when people stop speaking, they may shift to nonverbal communication through hand squeezes, gestures, eye contact, and other movements.

Many of the most moving stories I heard were not about last words at all. They were about facial expressions and silently moving lips.

I like to think about it this way:

Throughout our lives, we interact with one another through a kind of window.

At the end of life, the structure holding that window begins to collapse. It starts to wobble.

The opening through which we interact becomes smaller and smaller.

We try to maintain the connection. We use whatever space is still available.

That is one reason people shift from verbal to nonverbal communication. Humans are very good at making that shift, and we continue doing it until the end.

As the window begins to collapse, people may experience intermittent consciousness, sometimes intensified by the medications they are taking.

There may be moans that are difficult to interpret, delirium that is difficult to understand, and silence.

A great deal of silence.

Contrary to many popular accounts, dying is not a particularly talkative time.

The challenge is to connect with one another in the silence between the utterances.

Perhaps this is difficult to hear. Perhaps these are things you already know or have experienced.

For me, learning them was incredibly comforting because care begins with having the right expectations.

I believe there is a form of radical bravery in claiming and setting those expectations.

It is also clear that we have been distracted by words.

Personhood, language, and consciousness can be recognized through nonverbal communication and even through the back-and-forth structure of interaction itself.

When I set out to discover what really happens, I also encountered religious traditions that prescribe particular things for people to say or hear near death, including sacred sounds and prayers.

In Islam, there is the confession of faith called the Shahada. It is also whispered by a father to a newborn child as the first thing the child should hear.

In Judaism, there is a piece of liturgy called the Shema.

Hindus believe that people should hear sacred words and, if they say anything at all, it should be the name of a god.

These practices are intended to help unlock a desirable afterlife for the person who is dying. They also provide comfort to family members.

It was important for me to discover that the expectation in these traditions is not necessarily that someone will say something individual.

They may say something everyone else has said, something shared by the entire community of believers.

These are rainbows too because it is unclear how many people are able to perform the rituals. For obvious reasons, the rituals must be flexible.

But I would never have encountered these ritual last words had I not looked beyond the skies of my own culture.

Last words, like first words, have histories.

They are part of larger histories. Understanding those histories helps us recognize how we came to believe there was only one way to do things.

Rainbows are important.

All of this brings me back to the woman I found in the woods.

No one knows how Tanya got there. Because of the way she lived, her death is not even treated as a cold case.

She died off the map, outside the rituals that mark a person’s biological death and social death.

The responsibility fell to me.

What was my role in trying to restore the balance?

I called the police. I saw a crisis counselor. I attended her memorial service.

Were those the right things to do? Yes.

Were they the entire set of right things to do? I wondered.

I met her family. I learned everything I could about her life. I wrote her story.

Were those the right things to do?

Yes. I am a writer, so that part came easily.

But it turned out that my job was not to bring her back to life through literary witchcraft.

I had a different responsibility.

My job was to reconnect her to communities of the living and communities of the dead, and to bring her to the place where she belonged.

Perhaps the discovery affected me so deeply because I had found her lingering between states.

My culture, unlike some of the cultures people have described today, had no rainbows to offer me.

There I was, a linguist, a father, and a writer standing in the rain.

So I fashioned a rainbow.

Under that rainbow, I say Tanya is one of my dead.

I talk to her.

On our Day of the Dead altar, we place a photograph of her in happier times.

I say that she is one of our dead, even though we did not know her, she did not live in our neighborhoods, and she did not attend our book clubs.

Even though she was not a soldier or a firefighter, she is one of our country’s dead.

There are rainbows that help us, and I believe this is one.

Some rainbows are no longer useful. They come from another time and have become obsolete.

But I believe we are living through a period in which all of us are inspecting old rainbows, evaluating them, and perhaps creating new ones where they are needed.

You can only do that when you go outside and reckon with the rain.

Thank you.