How do you make a mindful game out of saying goodbye to your child with a terminal illness?
Continuing our series, I’m shifting gears away from myself and my own reality to examine another familys’ struggle. Before my first craniotomy to remove my metastatic melanoma brain tumor, a friend told me something odd but honest “John, the good thing is, is that this is happening to you.” It may seem like something odd for a dear friend to say to another going through brain surgery and cancer but he was right– his point was that it was not happening to either of my children– Will or Mina. But what if it had? There is an “game or experience or whatever-you’d-like-to-call-it” out there that showcases what happens when a child goes through a terminal illness: cancer. The name of that game is That Dragon, Cancer. And I’ll be discussing the game, the game’s subject, Joel Green, and the follow-up showcase documentary: Thank you for Playing, which gives in inside look into the Green family’s struggles and Ryan Green’s families’ and teams’ role in the production of the game while managing his child’s terminal illness. This is a heavy subject and will be a heavy post. If you’re in vulnerable location, it might be best to read this post later.
Despite some recent health setbacks, I’m not going to start up the weekly updates tab again. Instead, I’ve decided to write a post and then put some health updates at the end for those interested. If you’re mostly concerned with the health update, then jump down to the writing below the 2nd divider.
I’ve been thinking a lot about suffering since New Year’s Day. I’ve endured my own small form of suffering (more on that below the divider) and I’ve read some fascinating ideas about the subject.
Previously, I’ve mentioned suffering in a post with some quotes and anecdotes from Maharajji. “I love suffering. It brings me closer to God,” he is quoted as saying. As I deal with my small issue and think about my trials since last April, I can realize the truth found in that statement. There is something very real about suffering. It forces you to be in the moment. I read recently that some mystics have thought that all suffering is the same, that there is only one suffering. When you suffer, it’s almost a sacred and communal act.
“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.