There is no such thing as normal

“There is no such thing as normal. Let’s stop using that word.”

My neurosurgeon

In my appointments with my neurosurgeon I’m always waiting to ask about a particular milestone or typical level of function. “When will I be able to take in media without any limits, like normal?” “When would I be able to work a normal workload?” “When will my head pain stop, and be normal?” “When will I be able to normally sleep on the right-side of my head?”

And his response:

There is no such thing as normal. Let’s stop using that word.”

His elaborate answer is always something along the lines of: go slow, and listen to your body. I’m looking for the certificate of achievement, a mile-marker, or an acknowledgement that confirms that I can return back to the self I was before April. But there is no certificate, mile-marker, or black-and-white “Yes, you’re good now,” statement. There never will be. And, if we’re honest with ourselves, there never was. There is no such thing as normal.

My habits, my daily routines, my diet, my ability to engage in a typical American 40 hour-per-week career— that has all been changed forever. I’m learning to live with that. Some of it’s good and some of it’s, well, a difficult adjustment.


This past month I started maintenance immunotherapy treatments. The maintenance phase is supposed to be easy. Less side-effects, one drug instead of two drugs, and a less frequent infusion schedule. I thought I had graduated from normal immunotherapy treatments to maintenance immunotherapy treatments. 

As you know, if you follow the “My Journey- Updates” page, within 1 week of my first maintenance treatment I came down with immunotherapy induced hepatitis. Low-fever, body aches, lost of appetite, lost of flavor in food, and extreme fatigue. I was put on a regimen of steroids to get my liver function back, it had an immediate and very good effect on my overall sense of well-being. I was myself again. The fatigue was gone, and food tasted great! I also felt a strange sense of energy. I was more than happy to pick-up and drop-off kids, cook, clean, organize, and play as much Mr. Mom as I could. In a way it felt normal. But there is no such thing as normal.

This past week, the steroid regimen has revealed itself in the form of very noticeable side effects. To begin with, I can’t sleep. Even when I’m exhausted, I can’t get more than 3-4 hours of sleep at night. I don’t wake up groggy but I’m not bursting with energy either. My heart is pounding hard in my chest and all I can think of are to-do list activities for the day. So I start them obscenely early. My energy is frantic and un-contained. By the time other beings in my house wake up too, I’m already tired and stressed.

That’s the second side effect. Mood swings. The kids come down stairs, which brightens my day, right? But then they start fighting over a toy or a cereal spoon, and I turn into Drill Sergeant Dad while they’re wiping away crusty eyes in their superhero pajamas. I immediately over-compensate and start explaining why Dada’s so frustrated while I pat their backs and stroke their hair. They start eating dutifully and I find hot tears streaming down my cheeks. 

Something else happens and I’m back to Drill Sergeant Dad. Paige will come down and say hello to everyone and all I can muster is a very weak, “Hey,” which, I know, comes off as if I’m mad at her for something, but I’m not at all. I just don’t know what else I can say or do or anything. 

Then the situation reaches ultimate tension and it’s the dagger-in-the-heart proposal from Paige. “Listen, I’ll just take the kids and you can do your thing, okay?”

That’s the last thing I want! No, I want to be with the kids! I want us all to be here, together, happy, enjoying the moment with sugary cereals and coffee for the grown-ups. But that’s impossible now, and it’s only 7am. 

When I do have moments of solitude, those are not immune to the effects of the steroids. I can be very peaceful and find a place of relaxation. But then my mind will go somewhere, and trigger a very emotional memory (like our dog Athena passing away), and even in my favorite outdoor chair I’m a tearful mess again.

Third. I’m always eating. Always. Vegan food loading isn’t easy. For me, it’s been lots of breads, high fiber cereals with oat-milk, fruits, nuts, and lots of peanut butter. The post-digestion side of all of this is a house of horrors as well. I feel like I’m walking around in my own toxic cloud, Pig-Pin style. It’s so frequent I feel like I’m contributing to global warming emissions. I tell Paige that I think I’m ruining furniture. I can’t believe she still sleeps next to me.

There are mental games too. Thoughts about the permanency of these effects. Is this stuff better than the ailment? What got us here? Why did we do choice A instead of choice B? Are our lives over because I’m on a steroid regimen for who-knows-how-long?


I thought I was on the right path and had it down. 

After the September PET scan I thought it was all going to get easier, a downhill motion, a return to normal

But there is no such thing as normal.

I’ve made the decision to take a break from work again. 

I have a few dates on the calendar out there for trips and events, but I’m not adding to them. 

I have to do this even slower than one-day-at-a-time. This is going to require six-hours-at-a-time style evaluating. That’s my choice, at this moment.

It is mass hypnotism? Is it the shear inertia of habits, incentives, rewards, and a strange-acceptable-flow of what a normal life is supposed to look like, that makes most of us take one career-like pursuit and call that our “work”? And then further to take that “work” and self-identify with it and use that as the defining mark of who we are.

What do these statements say about these people?

“Oh, Steve? Yeah, he’s an accountant.”
“Oh, Ashley? Yeah, she’s a doctor.”
“Oh, Bryan? Yeah, he works in finance.”
“Oh, Russ? Yeah, he’s a minister.”
“Oh, Tom? Yeah, he works at Lowes.”
“Oh, Bob? Yeah, he’s an über driver.”

NOTHING. There might be some helpful handles there about what schooling they made or may not have. But besides that…?

All of those people could be working a 2nd job. Or have a very enjoyable side-hussle. Or be workaholics. But in their adult life, no one has physically forced them to pursue any of those choices. 

The choice is yours. What do you want your day to look like? What do you want your life to look like?

Do you need to wait for cancer? Do you need a tragic-death-in-the family? Do you really need to wait to the point of over-the-top misery before doing something radical about it?

It’s your choice. Because there is no such thing as normal.

The Greatest Showman / The Perennial Tradition / Don’t Find Your Solace in Politics

The Greatest Showman. Image credit: 20th Century Fox

Again, my son Will picked the movie for a Friday-night movie night.  His choice was The Greatest Showman, which overtook our household last September and forced us into a late costume change from Moana characters into characters from The Greatest Showman for our church’s Halloween family costume contest (side-note: we won).

Will put it over-the-top for us. Shouting, “THIS IS THE GREATEST SHOW!” everywhere he went.

 
If you haven’t seen this movie of finding hope, beauty, and redemption in the wonder and diversity of humanity, I hope you’ll give it a chance. It’s a movie that is a loose biography of Phineas T. Barnum and his journey of putting together the Ringling Brothers and P.T. Barnum & Bailey circus. Sure, the movie might gloss over his penchant for profiteering or bending the truth slightly to sell a show. But the movie does recast P. T. Barnum as a “woke” Barnum. One who finds beauty in all of the diversity of humanity, then dresses it up (maybe with some exaggeration), and organically sells it as a extraordinary show. He brings people together previously outcast as “freaks” or “oddities,” from the fringes of society. Instead of shunning them, he brings them front and center, and celebrates them. 

Continue reading “The Greatest Showman / The Perennial Tradition / Don’t Find Your Solace in Politics”

Hootie and the Blowfish: Group Therapy

I was lucky to be invited by a friend up to Charlotte, NC for the Hootie and the Blowfish, and Barenaked Ladies concert. Hootie was the headliner and they put on a great show. It felt like a celebration. Something was strange about the weather that day (most likely due to Hurricane Dorian) and the Charlotte weather was fantastic. There was an ever-present gentle breeze almost throughout the entire concert. The crowd was nearly Canadian in their politeness. What a good time.

During the concert, Hootie sang their anthem hit song pretty early. The opening words, after 25 years, still have a loving power to them. As if Martin Luther King Jr. was a songwriter.

With a little love, and some tenderness
We’ll walk upon the water,
We’ll rise above the mess

With a little peace, and some harmony
We’ll take the world together,
We’ll take them by the hand,

Hootie and the Blowfish, Hold My Hand

Don’t we all need to hear this so much right now? The name of the tour, fittingly, is Group Therapy (which is also the name of a Columbia, SC bar). 

Continue reading “Hootie and the Blowfish: Group Therapy”

The Kingdom of Heaven is Within You

I’m excited to share that my PET scan came back with phenomenal results. The melanoma has not spread anywhere new. Of the existing 6 tumors that lit up previously, only 1 tumor showed up on this PET scan, registering at 5mm (down from 1.2cm in May). 5mm is also the smallest measurement a PET scan can pick up. This is the nodule in my right lung. I don’t have pictures of the scans to share with you, but I will tell you that the May PET scan of this nodule and the August PET scan are night-and-day. My oncologist even remarked that they wouldn’t even notice if they weren’t looking for it. The term “remission” was used (more on that in a bit).

Continue reading “The Kingdom of Heaven is Within You”

True Self and Self 1 & Self 2


I’ve used the term “True Self” in earlier posts. It’s a phrase I’ve lifted from Richard Rohr and his work on finding our True Selves in absence of ego and other “shadows”. (Which, he most likely picked up from Carl Jung.) While it’s a theme found in a lot of his work, he really develops this in his book about True Self and False Self, The Immortal Diamond. (Spoiler: The True Self is the Immortal Diamond.)

But I’ve had this nagging feeling that I’ve heard something very similar in a book I read about, of all things, sports.

The Inner Game of Tennis: The Classic Guide to the Mental Side of Peak Performance (first published in 1972) is a book by W. Timothy Gallwey and in it he develops his findings as a tennis coach into a philosophy for teaching and learning.

Continue reading “True Self and Self 1 & Self 2”

Camp is a Pure Land

At the beginning of this month, I had the chance to take my wife and children to the camp I grew up going to and worked at during summer breaks during college. The camp is called Cedarkirk and it’s loosely Scottish for “church in the trees.” A lot of my friends from my hometown church, and my camp days were coming back to join me, and introduce their families to Cedarkirk. It was a remarkable homecoming.
Initially, I was a little apprehensive about how much my wife would enjoy it. When given the choice, there was never a debate with her about whether to “rough it” or choose air conditioning and a hot shower. Her susceptibility to bug bites and the quarter-sized welts they leave for days convinced me not to push the extreme camping adventure with her any time soon.    
But at the first night at camp, we met in a hallway after getting the kids to bed. We embraced and she told me, “I get it. I understand why. There is no ego here.”   

Continue reading “Camp is a Pure Land”

An Experiment in Dying

When talking with friends and family about what I’ve been through, the topic of my radical perspective shift comes up over and over. And I always say that “staring down the barrel of that gun” or “dangling on the edge of that cliff” or “looking straight into the abyss” will do that do a person. But I am also quick to follow up with the qualifier that a person can’t force that experience onto themselves. It just has to happen— and dying will do that. 


In my much loved (now dog-eared and marginalia-covered) book Falling Upward by Richard Rohr, he writes the same sentiment— that one cannot force the second phase of their spirituality to happen. It just does. But he also mentions that it seems common for it to happen to people sometime around their mid-40s. 


I have heard of someone who did manage to simulate their own dying experience and come away changed forever as a result. Kevin Kelly is former editor-at-large at WIRED magazine and has his hands in a long list of fascinating projects. He’s written several books about technology and the future. I’ve read his latest futurist book, The Inevitable, and recommend it if you’re interested in things like what automation will look like, AI, and the singularity. At the heart of his futurist predictions there are very rooted and optimistic outlooks on what we as humans will learn from our own advancements. To paraphrase his take on automation, when robots learn to do everything we do and obviate the need for work, the result will be that we will learn, deeply, what it is to be human. 


The following summary of this story was made into the very first episode of This American Life. He also reflects on it during a long-form interview on The Tim Ferriss Show podcast.

Continue reading “An Experiment in Dying”

Mark Twain and Nassim Nicholas Taleb on Religion: Two different lights cast on the diamond


Image by Jackie Ramirez from Pixabay, Nassim Nicholas Taleb’s pictures available for public use.

Mark Twain has some good zingers when it comes to a well-placed jab at organized religion. Although his eloquent critiques of doctrinal organization and dogma don’t completely aim to do away with religion, they do provide plenty of fuel to the fire for people who like to scapegoat religion as The Problem in the world. Consider the following:

“So much blood has been shed by the Church because of an omission from the Gospel: “Ye shall be indifferent as to what your neighbor’s religion is.” Not merely tolerant of it, but indifferent to it. Divinity is claimed for many religions; but no religion is great enough or divine enough to add that new law to its code.”

Mark Twain, A Biography

Or:

“Man is a Religious Animal. He is the only Religious Animal. He is the only animal that has the True Religion–several of them. He is the only animal that loves his neighbor as himself and cuts his throat if his theology isn’t straight. He has made a graveyard of the globe in trying his honest best to smooth his brother’s path to happiness and heaven….The higher animals have no religion. And we are told that they are going to be left out in the Hereafter. I wonder why? It seems questionable taste.”

Mark Twain, “The Lowest Animal”
Continue reading “Mark Twain and Nassim Nicholas Taleb on Religion: Two different lights cast on the diamond”

Don’t get sucked into the American Success Agenda

This confusion about our True Self and False Self is much of the illusion of the first half of life, although most of us do not experience the problem then. Only later in life can we perhaps join with Thomas Merton, who penned one of my favorite lines, “If I had a message to my comptemporaries it is surely this: be anything you like, be madmen, drunks, and bastards of every shape and form, but at all costs avoid one thing: success…if you are too obsessed with success, you will forget to live. If you have learned only how to be a success, your life has probably been wasted.” Success is hardly ever your True Self, only your early window dressing. It gives you some momentum for the journey, but it is never the real goal. You do not know that, however. In the moment, it just feels right and good and necessary- and it is. For a short while.

-Richard Rohr, The Immortal Diamond, Thomas Merton, Love and Living

What to do or say when your friend is dealing with cancer; or, What NOT to do or say when your friend is dealing with cancer

So this one’s a bit of the blog post and leaning towards a bit of the “My Journey”, right? Well, we all know both of those distinct sections are going to merge together sooner or later, that’s where we’re headed, right?


For my birthday, Paige got me a quick-read book entitled Everything Happens for a Reason and Other Lies I’ve Loved by Kate Bowler. I hadn’t heard of it but after reading a blurb about Kate (35 years old, married with an 18 month-old son when diagnosed with stage IV colon cancer) I raced through the book in two days. 


Kate Bowler also has a very active website, articles, podcast, and book club. She is a divinity professor at Duke Divinity School who has specialized in the prosperity gospel. [An aside for my a-religious friends. Prosperity gospel focuses on receiving rewards such as money, health, or success in exchange for being a faithful Christian, or in some crude cases, in exchange for money given to a church. Thinking televangelists. It’s the worst example of a very conditional arrangement.] I feel very drawn to Kate’s work and her perspective throughout her diagnosis, surgery, and treatment. Not that she would take me up on it, but I wished I would’ve been familiar with her work when Paige and I went up to Duke Cancer Center for our 2nd opinion consult so I could’ve asked to meet for coffee or lunch. Stage IV besties probably isn’t a thing but it would be fantastic to have a conversation with her.

Continue reading “What to do or say when your friend is dealing with cancer; or, What NOT to do or say when your friend is dealing with cancer”