Something different for this week. I’d like to share a poem and a prayer. Both have meant a great deal to me and have helped me in even the lowest parts of my journey.
The poem is by Jellaludin Rumi (a 13th century Sufi mystic) and it’s called The Guest House. The prayer is the St. Francis Peace Prayer or sometimes called the St. Francis Prayer. This prayer is used by Alcoholic Anonymous in their 12 step recovery process. I’d like to write more on addiction and recovery and am working on a large piece on exploring the spiritual side of that. Have a good weekend, everyone. And have a good Thanksgiving week!
The Guest House
This being human is a guest house. Every morning a new arrival.
A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor.
Welcome and entertain them all! Even if they are a crowd of sorrows, who violently sweep your house empty of its furniture, still, treat each guest honorably. He may be clearing you out for some new delight.
The dark thought, the shame, the malice. meet them at the door laughing, and invite them in. Be grateful for whatever comes. because each has been sent as a guide from beyond.
The Saint Francis Peace Prayer
Lord, make me an instrument of your peace: where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; where there is sadness, joy.
O divine Master, grant that I may not so much seek to be consoled as to console, to be understood as to understand, to be loved as to love. For it is in giving that we receive, it is in pardoning that we are pardoned, and it is in dying that we are born to eternal life. Amen.
I learned my MRI results this week. My brain is clear of any lesions (tumors). Except for the resection (the cavity from my brain surgery), my MRI looks like a typical brain. In doctor-speak, this is a complete response. In August, my MRI was a partial complete response. I’ve been upgraded. There was little else to talk about for my appointment. We set the next scan for 4 months out.
I took my last steroid pill this morning. Tomorrow will be my first day in 8 weeks with no steroids. I’m already feeling very good. I think by the end of the weekend I’ll be feeling even better.
I have a PET scan at the end of the month and I find out the results in the first week of December. I’m going to hold off on the weekly updates until then. Things have calmed down considerably. It feels forced to give weekly updates during long periods of inactivity. No news is good news.
I’ll still keep the main blog going and write weekly. Initially, I set the goal writing once a week for 1 year. I’m still aiming for that.
All of this good feeling has me basking in the awe of feeling put back together again. I feel like I was broken, and broken for a long time. It’s only through the love and grace of my family, friends, and professionals (medical and otherwise) that I became functional first, and now exceptional. I am not worse for the wear- my past has become wisdom, and the scars I bear show the power of love and community. I find the Japanese art of kintsugi tells a small part of the journey I’ve gone through in becoming a New Man.
When I was little I never liked westerns. I thought they were boring. They didn’t have spaceships or new planets, and worst of all, they took place in the past. Yuck. I always went for more Star Wars replays over watching a dated Western. Even the combination of western and sci-fi, the 3rd Back to the Future movie, was a bummer for me as a kid (and still is, sort of). And now, as I age, I realize westerns might be more dear to me– because they take place here, on Earth. I think the magic of westerns comes from the “anything is possible” framwork of the chaotic Old West. But it’s an “anything is possible” within boundaries– there are still deeds, and laws, and justice. And only a tiny, tiny, tiny bit of beaucracy (which is always vilified). I think we’re attracted to westerns on an unconscious level because they take place in nature, and in a version of America hasn’t yet turned into Pavement-Land. It certainly appears that living in the present was a whole lot easier when adventuring in frontier territory.
I grew to love westerns as I came into adulthood. I’m realizing now, it was thanks to music, and not TV or movies. I’m still not completely taken with western movies or TV shows. HBO’s Deadwood is the closest I’ve come to really being taken by show set in the West (the show is essentially Game of Thrones without the dragons and it’s set in an Old West frontier town. Also explicit like Game of Thrones).
Now I can recognize that I have Bob Dylan to thank for my love of the Old West. And Josh Ritter, too.
This past weekend my hometown buddies gathered together at a friend’s beach house and celebrated my latest PET scan. It was an opportunity to see me, hang out, give me a high-five and some hummus, and for a bunch of guys to see friends they rarely see, and engage in….dare I say, “guy things.”
Well, maybe it’s our age but “guy things” turns out to be pretty tame, but really really fun. I had to be the first to bed both nights because of my steroid / head pain issues but I wish that I had been able to stay awake and chat with those fellows until the early morn.
[I did wake up early on Saturday and watch the sunrise for an hour. That was a powerful way to start a morning. Picture below.]
The type of crew assembled that weekend really enjoys games- video and table top. (Tabletop gaming is just another way of saying board games. Blame the “kids these days”.) We all had brought an assortment of video game consoles and contemporary tabletop games (no monopoly, or yahtzee to be found there).
The game that stole the weekend was a tabletop game called Red Dragon Inn.
[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.”
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.
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).
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.