Life after the Existential Slap

“And so, and now, I’m sorry I missed you.

I had a secret meeting at the basement of my brain

It went the dull and wicked ordinary way…”

The National, Secret Meeting

This blog post is inspired (as I suspect they often will be) by a piece of reading material I came across that struck me. This time it was an article in the Atlantic, titled quite simply, “What it’s like to Learn You’re Going to Die.“ I’ve included the link herein for your perusal and to ensure proper credit.

https://www.theatlantic.com/health/archive/2017/11/the-existential-slap/544790/

Since my diagnosis, I’ve had some people tell me that they understand what I have gone through because they have had near misses with potential diagnosis in the past or other moments where they “felt like they were really going to die.” And I believe that those people who have told me these things really do believe what they are saying with all of their heart.

I’ve had a couple of near-misses myself, such as that time when I broke five vertebrae in my back at 12. Perhaps when I got called back last April for an ultrasound after my first mammogram?

Maybe those count, but probably they don’t. Because I can honestly tell you that in each of those moments, I never really felt pure terror. I always believed on some level that everything was going to be alright.

I was sitting in the hospital, with the resident “hospitalist” over the phone breaking to me the news that there was a giant tumor in my colon, and that it was probably cancer. THAT should have been that moment, right? It wasn’t. I had never in my life been close to cancer, but I knew that most cancers were curable. That most of them had high survival rates. I had fears for sure, but on some level? I still believed that everything was going to be okay.

The sensation- for me- first crept in when I started googling my biopsy report. Around that time, staring at 50% survival rates, I first began to feel the cold grip of terror. And disbelief. In this moment, I think I might have been somewhere close to the emotional state others have described to me as that moment that “they felt like they were going to die.” It was my first taste of terror. But was that my full-on existential slap? No. Not yet.

A sinking feeling is is not the same as a free fall. It’s just a first taste. Feeling and fearing are not the same as knowing.

The existential slap didn’t come for me until I KNEW, I mean really knew for the first time that I was indeed going to die.

It’s that chilling moment when you realize that you are out of possibilities for mistaken interpretations. You are out of alternate outcomes. This is not just a nightmare and it won’t be okay again after you wake up.That moment is when you realize,Yes, this is really happening and no, there isn’t any way out.

And the moment when that hits you? It’s like no other feeling in the world.

The author of the article describes the sound one of his parents made when breaking the news of his mother’s diagnosis: “There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral.” I’ve made that noise, sitting in my car.

• It’s the fateful mistake that has hurt someone that you can never undo, make better or apologize for.
• It’s waking up on the train realizing that it’s heading off a cliff and there’s no time to react before the fall.
• It’s the life-changing event that you can never turn around.
• It is real, it is there, it can’t be fixed and it can’t be denied.

My existential slap hit the was the moment that I found out with 100% certainty that this had metastasised to my liver. I had read the stats. They could not be denied. I knew I was going to die. That was the quake, but there were still two strong aftershocks to come.

These shocks came in doctors’ offices, after periods of denial; periods of trying to regain hope.

I had been told that I was resectable, then after MRI was told I was not. I had read many stories of survival and believed that it was possible. And then I was told by doctors that I was incurable and that my chances of making it long term were very small.

Slap! Slap! The existential slaps are those moments when you’ve lost all hope, but also haven’t figured out how to land at a place of peace.

The loss of future? That one is the most unsettling of all. Everyone assumes that they will grow old. Everyone assumes that they will retire. Everyone talks about how their children will be when they grow up. Everyone talks about future trips and vacations they will take. Everyone assumes that they have a future.

Go for a day. Any day. Challenge yourself to go the whole day without speaking or even thinking of any events that will occur at any point past, say- the next two years. You might get a glimpse of how completely profoundly this loss of future changes a person.

The following two paragraphs in the article are the ones that especially hit home:

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment.

All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis … Whether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three [My note: All Three] They grieve. [Yes] They grapple with a loss of meaning [Briefly]. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” [An existential crisis is a moment at which an individual questions if their life has meaning, purpose, or value. Source? Wikipedia]

Here is another mind-blowing section of this article that really got to me:

Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. [Yes, yes and yes] The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months {Again, yes. This seems about right.} For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once.

I had surgery to remove my colon tumor on Labor day. My first existential slap was on Columbus Day. Another was after an appointment on Veteran’s Day. I need to stop scheduling appointments on holidays.

Somewhere around mid-December the rawness wore down into a constant low-level depression. I didn’t know if treatment was working. I was facing cold. I was in the thick of chemo. And I was trying to figure out how to live with dying.

But then I began to feel better around the end of December. I wish that I could say that it was coming to a place of peace. I was working on that, to be sure, but can I really give myself credit? I can’t.

I started feeling better because the news started to get better.

• Beacon of hope #1- Chemo was working.
• Beacon of hope #2- It was working enough that I am now resectable.

Remember those islands I spoke of in my first blog post? I am passing them now. I see those islands of hope. They hold the promise of respite. They hold the promise of a future.

But unfortunately, my boat isn’t docking there. There are still many more miles on this journey. I don’t know how many, but the trip is looking to be a longer one now an I am grateful for that. I will have resection surgery. I will have more chemo. And then my journey continues. The real test of how much better I am handling this will come when the news isn’t so great.

Between the nature of the disease and various other prognostic factors unique to me, I am almost certain to have a recurrence. I don’t know when it will be. I don’t know where it will be (lungs? liver? lymph nodes? peritoneum? brain?). I just know that it’s going to happen. And may possibly happen again after that. And again after that. And more likely than not, one of those recurrences- whether it’s the first, second or fourth- is going to kill me. Two years from now? Three years? Five years? Seven? Ten? Forty?

I don’t get to know. I don’t ever get to know. Until, once again, I KNOW.

So how do I live a life on this boat? How does anyone? Everyone has to find a way.

My life as of late has seemed almost normal. Whatever the hell that is now. Normal is work. Normal is family activities. Normal is talking about how your weekend went. Normal is normal, but with a permanent asterisk.

As the palliative care specialist in the article states, “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

• You know that commercial that aired a while back for a depression medication? The medication helps the person turn the giant cloud into just a little cloud of depression that follows her around like a balloon? Death is that cloud.
• Death is the back seat driver. I am steering through life, but death is in the back seat yelling at me to watch where I’m going, and to drive more slowly. Because we don’t know how many miles are left and we don’t want to miss any.
• Death is the secret meeting I’m attending in the basement of my brain while you are talking to me about your future vacation, or about your kids going to college or about how many days you have left until retirement.

I don’t want it to be that way. And it’s nothing against you, but it is what it is. A life in increments. A life of living my best for today. A life after the existential slap.