[Check out the new menu on the home page. In case you didn’t see I post weekly health / well-being updates on the “My Journey” section. Fixed for mobile, too.
Thanks to the WordPress helper who assisted me to fix this. I recommend WordPress with all the accolades I have as a blogging platform.]
When I was in the hospital I signed up for a weekly email summary of daily devotionals from Richard Rohr. (I’ve already written about how I gobbled up Falling Upward by him while in the hospital and at home during my recovery.) I enjoy many of them, but this one stuck out enough that I feel moved to write more about it.
In it he discusses Inner and Outer Freedom, and uses the phrase “on the edge of the inside.”
…On the edge of the inside. I like it. It’s got a certain ring, doesn’t it? If someone said Warren Buffett described himself that way, everyone would say, “Of course! Such a folksy genius!”
I swear I’m not trying to make a habit of posting about books I haven’t read yet. But I feel compelled to post about Chris Arnade and his searching.
Some of this may be apocryphal but I find that telling stories in your own words (as opposed to citing and footnoting the daylights out of a document) can add flavor.
Chris Arnade is a former Wall Street trader who reached his limit and decided to walk away from it all. Like Forrest Gump, he decided to just start walking. But he chose to walk in the places that people had advised him not to go to. Neighborhoods where “people like him” shouldn’t walk around. He sought out those places. He walked them, and then he started to talk to the people there.
Preface: In this post I refer to some music styles and their designed appeal to the troops. This is not a commentary on people in military service or their music preferences. As I’ll say in the post, troops (or members of military services) are not a monolith. They are complex and cannot be grouped or labeled. For a more insightful analysis of military service members, veterans, and their treatment in our society I recommend Sebastian Junger’s book Tribe: On Homecoming and Belonging.
Americana music. What is it? The word “roots” seems to come up a lot. Is it something still involving singing and guitars but not Nashville country and not alternative rock? Is it folk music with an edge? I don’t know. I’m not a music blogger (I think that requires a lot of work and energy), but I would like to dive into 3 songs from 3 different artists that have resonated with me.
Josh Ritter. How can you not love this guy? He is so happy at every show he plays. He’s got so much on-stage energy. His songwriting is deep and reflective, sometimes even dark. His band, The Royal City Band, plays as if they’re the successors to Bob Dylan’s backing band, The Band.
I haven’t read the book yet, but I pre-ordered it and it arrived on my doorstep on Tuesday. I am so excited about this book.
Some background. I found Ryan Holiday on a podcast when he released Ego Is the Enemy. The podcast was simply a sample of him reading a selected chapter, entitled What’s Important to You? It tracks the post-Civil War careers of Ulysses G. Grant and William Tecumseh Sherman (known to us as General Sherman). While Grant was swept along into politics, eventually becoming president, he was out of his depth and did not know when to say no or how to be comfortable with himself. He accomplished little in office, and then was caught up in a Ponzi scheme. He finished his days trying to write his memoirs in order to leave something behind for his family.
“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. 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.
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).
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).
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.
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.”
