What I Learned About Life from Death: Jane Whitlock (Transcript)

Here is the full transcript of Jane Whitlock’s talk titled “What I Learned About Life from Death” at TEDxMinneapolis conference.

Listen to the audio version here:

TRANSCRIPT:

Birth and Death

Birth and death are the sacred bookends to our lives. So why do we prepare so thoughtfully and carefully for one and not at all for the other? Imagine if we treated birth the way we treat death.

So a woman would get a diagnosis of a pregnancy. We wouldn’t know how to talk to her. She would lose friends because people were so afraid they would say the wrong thing. She would go to the doctor, and the doctor, too, would not choose to focus on preparing her for being pregnant and giving birth, but instead would focus solely on the treatment plan.

As the pregnancy progressed and the treatment became less effective, it would be very difficult for friends or family or the doctor to say, “Maybe we should stop this; I don’t think it’s working.” Even the pregnant woman herself, when she said, “Maybe I should prepare for this experience. I feel like this birth might actually happen. Maybe I should go to a doctor who specializes in birth, an ob/gyn,” her friends and family would say, “Oh no, no. You’re not ready for that. No, no. You can’t give up. You’ve got to keep fighting this.” That would be our standard, go-to way to support pregnant women: “You can fight this.”

By doing this, by denying, denying death all the way up until the minute it happens, we lose out on the opportunity to mend ourselves and to heal our relationships, to find purpose in our lives, and to leave a legacy. These are all things that prepare us to die.

Death is natural and totally unavoidable. So why are we so afraid to talk about it?

The Reality of Death Preparation

80% of people say that planning for end of life is a good idea. Only 27% of people actually have a living will. Of those 27%, only 11% of the people who are responsible for enacting that living will know where it is. This inability to prepare effectively for death has very real consequences.

We have hospitals that are full of people on ventilators and feeding tubes, people surrounded by caregivers who feel their only choice is to hope for a miracle because they have no idea what that person would have wanted.

Now, I wasn’t always like this. It was not always my fantasy to talk to a captive audience about death and dying. I used to be normal; I used to be like everybody else. I used to, you know, stand at the sidelines of my kids’ soccer games and complain about annoying habits of my spouse.

I used to plan vacations months in advance, casually assuming that I would still be alive to take them. I used to get ridiculously annoyed at people who didn’t use their blinkers; it was, like, made me crazy. But all that changed in the fall of 2013 when my partner of 26 years developed a cough.

A Personal Journey Through Loss

It didn’t go away. We went to specialist after specialist, and no one could figure out why this seemingly healthy 49-year-old man couldn’t get better. Eventually, one of the X-rays went a little lower than his lung and found a golf-ball-sized tumor on his kidney. And there were more tests.

I called him on break from my job at IKEA, and I was like, “Hey, what’s going on?” And his voice sounded weird. And he said, “Well, I just got this result from my chart. It says I have renal cell carcinoma. And it’s spread to my lungs.” I dropped the phone, and I ran to the IKEA bathroom. I was trapped in there with my hands against the door of the stall and trying to catch my breath, and the only thing I could think was, “I have to get outside. I have to get under the sky.”

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I eventually made my way outside, and I think there is something about nature that can ground us when everything else falls apart. I eventually made my way home, and those first few days and weeks, we were in shock. I had this recurring image – probably highly inappropriate – but of a giant sifter on my front lawn, and our whole lives were dumped into that sifter. And all this stuff that didn’t matter anymore fell through the sifter onto my front lawn.

All the chatter in my head, about what I looked like, “Was I successful? Did I have the least respectable car in the school pickup line?” that I was continually losing the battle with Creeping Charlie — all that disappeared. Concerns of my ego. And the things that remained in the sifter were people and relationships.

I became grateful for things that I had taken for granted just the week before: Taking walks with Rob at sunset. Lying in the hammock in my backyard under a canopy of shimmery green leaves. Playing Nerf basketball with my boys in the living room. Matters that fed my soul.

And you know what else was in the sifter, shiny and sparkly, elevated to a status previously unimagined? Now. The present moment. That is what happens when your future disappears. I also realized how entitled I had been, entitled about time, entitled that, of course, I would live to be at least the average life expectancy, entitled to have the man I loved by my side for my whole life.

The Gifts of Death

This is one of the gifts of death. It makes you profoundly grateful for what has been there all along. Ordinary, everyday things become sacred. So Rob died four months later on Christmas night. Before he died, I made him make me a plan. He said, “Go back to school. Get your master’s in PE. You’ll have the same schedule as the boys. You’ll make more money.” Except I couldn’t do it.

Because after he died, I had this epiphany. I think of it like that board game called Life, where everybody is going around with their little plastic car, putting pink and blue pegs in their car. In my mind, every car has two occupants: an ego and a soul. It is really easy to let the ego do the driving. But from now on, I knew in my car, the soul had to be the driver. I believe that the soul speaks through intuition, and I decided to follow mine.

Following the Soul’s Calling

It led me to learn everything I could about death, dying, and grief. I read books, podcasts, webinars, TED Talks, documentaries. And then I found out about end-of-life doulas, non-medical people who provide spiritual, emotional, and physical support for dying people and their caregivers.

Now I had a new lens with which to see my experience with Rob. Nine out of ten people want to die at home. Hospice is the organization that can support this. However, the hospice model relies on you being in it for several months so they have time to train you. The average stay in hospice in the United States is 11 to 17 days. No one can learn how to care for their loved one in that time frame.

Because of this, there can be some very painful gaps in the dying experience. As a hospice volunteer, I frequently got texts that went something like, “Patient actively dying. Caregiver exhausted, overwhelmed.” Or “Patient very anxious about dying. Has no friends, no family, dying alone.”

These people as well as I myself – and frankly, I believe most of us – could have used a calm presence by our side, someone who had wisdom gained from experience of walking this road before, someone who could help us enter the sacred nature of this time and someone who could stay with us as long as we needed them to – a death doula. This is what I was being called to become; what I did become.

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Personal Stories from the End-of-Life

I want to share with you some stories from my line of work. Meet Bill and Shirley. They are my parents and primary guinea pigs. I wanted to practice an end-of-life review; it gives people a sense of peace if they can see purpose to their lives. One of the ways to do this is to write your own obituary.

So I asked my dad if he would ever consider doing this. Without missing a beat, he said, “Oh, that’s how I get to bed every night.” He said, “Yeah, I just go through the obituary until I fall asleep. So I wrote it down, and then when he got to the part that said, ‘He will be remembered – ‘ he said, ‘Oh, you kids have to do that.'”

So I sent it out to my three brothers and sister, and they wrote back the most amazing, beautiful things about how they will remember our father, and I got to read them to him. He was verklempt; he did not know what to say. He said, “Well, I guess a life well lived.”

Meanwhile, my mom says, “Well, I’m going to have a terrible obituary.” I was like, “Why?” And she said, “I never went to college. I didn’t have a career.” And I said, “Well, what did you do?” And she said, “I always knew I wanted to be a mom.” So I asked her questions, and then she discovers that, in fact, she did become a mom of five fabulous children. And she’s a second mother to everyone who crosses her path.

The Power of Presence

Meet Bea. Bea’s family hired me because she had been in this sleep coma for over a week, and they felt like she might be holding on, but they didn’t know why. The first time I visited Bea, she had a deeply furrowed brow and this worried look on her face. She was in the sleep coma, but hearing is the last sense to leave.

So I sat with her for a while, and then I suggested doing a guided meditation. And I knew that she had grown up by the sea. So I had her imagine walking along the sand, feeling the wind on her face, smelling the sea breeze, and hearing the roar of the surf. It’s an exercise to get people into their body and out of their head. At the end of this, I told her I would come visit again.

She grabbed my hand and said, “I love you.” I don’t know who she was talking to or what she was talking about, but I knew I had made a connection with her. Later, she developed this fear of being alone, and everyone in the nursing home that she was at knew about this fear, so as I was sitting with her, after about the fourth person to come in, lean over her bed and say, “Don’t worry, Bea. We are right here with you. You’re not alone,” it dawned on me that no matter how many people say that, she’s still alone.

So I said, “Bea, you are alone. You are on a solitary journey. No one can come with you. It must be scary.” She looked me right in the eye and nodded. And then we talked about courage and how she had found courage throughout her life. Bea died three days later.

Lessons of Love and Presence

Meet Reese. Reese was nine when this story happened, and he is my son. He came with me Christmas morning to see Rob. I was in the hallway, debriefing with Rob’s friend who had spent the night with him. Reese went into the room.

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I came in 10 minutes later. Rob was in his sleep coma, one he would never come out of, and his mouth was open and his lips were dry, and he had that disarming look of someone who is actively dying. Reese had crawled into bed with his dad, was holding his hand, was stroking his face, saying, “I am the luckiest boy ever because I had the best dad. I am so sorry for every tantrum I ever threw. I am so sorry for every bad word I ever said. Thank you for all the fun things that you did with Caleb and me. I will never forget you.” This went on for over an hour.

And then he says, “Well, Dad, I’ll be seeing you around.” And he says to me, “Mom, I’m ready to go.” So we know how to do this; we know how to show up for each other.

Embracing Mortality

In Caitlin Doughty’s latest book, “From Here to Eternity,” she quotes a psychiatrist, Irvin Yalom. He says, “The adult who is racked with death anxiety is not some exotic bird who’s contracted some exotic disease, but a man or a woman whose family and culture has failed to knit them their protective clothing to withstand the icy chill of mortality.”

Well, I have a challenge for you. Who out there is up to be a knitter? It’s our job to take up the yarn and the knitting needles and open the door and let death in the room. We cannot prepare for it if we can’t talk about it.

So how do we do that? I think a good first step is getting comfortable with your own mortality. And this is a practice; it’s not something that you do once and you’re good to go. So I like to look for death everywhere I am. I told you I am not normal. If I’m outside, it’s really easy – right? – because there’s death and decay in the natural world, even in the green things because they only have one season.

But if you’re sitting at a wooden conference table, fine. If you’re looking at your dinner plate, death. So, for me, it puts me naturally in the cycle, like it is not a stretch to see that I too will become part of the natural world. Another game I like to play is, What will outlast me? So you can look around this auditorium. This auditorium is going to exist after every single one of us is gone. It’s a good perspective builder.

I do it until I get that perspective shift – from me being the important one to me being completely inconsequential, right? You are fleeting, you are small, and we are mortal. And lastly, remember the car with the soul driving and the ego firmly in the back seat. I recommend letting death ride shotgun.

Because death has a way of reminding us to be our best selves, and I don’t mean best self like whitest teeth, buffest body, fanciest car. I mean best human self: kind, loving, and grateful for this amazing thing called life.