Healing Wounds

I have a hole in my head.

It’s about 1mm wide and it’s at the incision site from both of my craniotomies.

The scans of my skull show a thick white outline of what my skull is shaped like. It’s all healthy and round, what you’d expect a skull to look like. Except the incision site– it’s my right side, about 2″ from my right temple. When you look at that part of the scan the think white line becomes broken and infrequent, like a bridge that’s been bombed.

I either have a bone infection or dead bone beneath that area. This is the same area that’s been shot with gamma ray radiation twice. Radiation can make an area extremely difficult to heal, but for small cancerous growth it’s the only early option (besides letting the cancer progress).

After my last craniotomy I didn’t think the scab that kept forming on the side of my head was much to worry about. The entire incision line across my scalp had scabbed up and eventually flaked off and healed. But this area kept forming a scab. At a routine check-up with my neurosurgeon I mentioned it and he referred me to a wound care center to get it checked out.

If you combine a retirement home, a hospital, and a doctor’s office– that’s what a wound care center feels like. My first appointments were easy and quick. They would measure the hole, apply a gel-based lidocaine ask if it was still “draining”, then open the wound back up “debriding” the wound using a sharp circular tool. Debriding the wound opens it up so the side of the wound don’t dig into the surrounding tissue, this resets the wound and should allow it to heal in those problem areas. The doctor said there was a small chance it was a bone infection but that he didn’t think that was it. They would have to see me weekly until it was healed. I was also to consume at least 60g of protein a day and apply an antibacterial ointment to the wound. Ensure has a line of high protein drinks they recommended. Each drink has 30g of protein. But these drinks are not cheap. They scheduled my next appointment and told me that this wound should heal very quickly and they did not expect me around much longer in the wound care center. 

I kept up the weekly appointments through Thanksgiving and Christmas. Since the wound had no real affect on my daily life I wondered if these appointments were necessary but after talking to a doctor friend about bone infections and understanding that it’s an infection and not something to be ignored, I saw the need to address this wound and have it healed. After Christmas, the appointments started to break the usual routine. At one point the doctor came in, looked at the wound, and declared he wouldn’t be doing anything to it today. He made a referral for me to get a CT scan and consult with a plastic surgeon. One of the nurses had previously mentioned the extreme-side of wound care which would involve lots of time and costs not covered by insurance. I hoped it would not come to that but I could see that it was approaching.

I completed the CT scan (where the skull beneath my wound looked like a bombed bridge) and met with the plastic surgeon who told me I would need to have an out-patient surgery to see what’s going on with the wound and to most likely replace that part of my scalp with a healthy part of my scalp. He mentioned that the surgery would need to be “saddled” by something called hyperbaric oxygen therapy (usual abbreviated to HBO or HBOT). Fortunately, the recovery from the surgery would not require any of the limitations I was used to from craniotomies.

I went back to wound care for appointment after completing those referrals. I expected the quick in-and-out that I was used to but it turned into a hyperbaric oxygen therapy orientation. Here I was told that HBO would require me to come to the wound care center every weekday to be be confined to a tube for 2 hours.
I was given a list of “don’ts”: don’t wear deodorant, don’t wear any hair products, don’t apply any lotions, don’t wear glasses. Later I learned that HBO therapy is the equivalent of a dive 33′ below sea-level with a pressure of about 15 psi (pounds per square-inch). I would not be allowed to bring anything in the tube with me as it would be a fire risk. I would most likely experience ear-pain due to the pressure. There would be an increased risk of seizure due to the possibility of oxygen toxicity. Once the nurse finished her orientation, the doctor explained the science about it and how it would help the healing but at that point my mind was somewhere else.

I had anticipated 2023 would start some other way.  I had begun looking into teaching and substitute teaching training for the local school district. I was looking forward to getting back to work and returning to the flow of a routine, and earning money again would help too. But what I thought when the HBO nurse instructed me to follow her to see the HBO room where I’d be starting next week, I walked into a low-lit room with two large tubes, a person lying in each one,  it looked very casket-like, there was a TV attached to the foot-end of the tube so that the patient could watch something, the TVs were both playing black-and-white westerns and there was no noise, the people in the tubes were older, I met another HBO nurse who informed me they were only sleeping, and I asked myself silently Why this?

As I was escorted out I was told I could bring in any DVDs and that they had DirecTV, so I could watch anything on that. I would start whenever insurance approved me. (It would be the next Monday. Insurance only approved me on the condition that I pay out family out-of-pocket max., even though it would only be me, the individual receiving treatment.)

The next Monday I showed up, went to a locker and changed into baggy starch-heavy hospital scrubs (complete with disposable footies– can’t pick up floor germs on the way to the tube). I sat on a gurney where they checked my vitals and ears. Then prepared me for what I was going to experience in the tube as they gave me an oxygen mask (like the ‘in-case-of-emergency’ ones you see in a plane) and a small water bottle. The gurney attached to the tube. I told them I didn’t want anything on the TV for now. I laid down on my back. I was then pushed into the tube and heard the air sealed shut behind me. The nurse demonstrated that he could talk to me from a little phone attached to the tube (it looked like the prison-phone set-up that you’d see in a TV show). And that he could hear me if I talked. The air became still and then I felt a growing sense of pressure in my ears. It was almost like flying in a plane taking off or driving up a mountain road, except the pressure kept coming. I resisted the urge to grab my nose and exhale and pop my ears (this was a mistake). The pressure in my ears kept building. Opening my mouth and moving my jaw didn’t help. The pressure built into pain and the pain somehow traveled from my ear to the my jaw. The nurse checked in on me with the prison-phone. I told him what I was experiencing. He slowed down the pressure. I would get to 15psi and stay there for 1 hour and 40 minutes. It usually takes 10 minutes to build up to pressure and 10 minutes to come down. But this time would take longer since that 10 minute pressure build would be slowed. I got to pressure and my pain lessened. Then it felt like being on a plane, just laying down.

This is my tube for hyperbaric oxygen therapy. I’ve heard some people get claustrophobic but compared to PET scans and MRIs, this tube feels roomy to me.

A few friends knew I was going to be doing this and I heard a couple of ideas repeated. “You’re going to be a Zen master of meditation after this.” and “What will it be like? Since it’s oxygen being pumped in there, are you going to feel amazing afterwards?” The Zen master experience and the Vegas casino experience. I can tell you, it’s never been like any of those. The pressure build is distracting enough that my deep breathing didn’t really put me into a meditative state, as much as I tried. I didn’t feel amazing like I was into a casino with oxygen being pumped into it to make people more amped up and impulsive. That first time in the tube I felt very bored and towards the end, profoundly sad. It wasn’t about anything in particular, although my thoughts sometimes drifted to the game That Dragon, Cancer. I think it’s just the effect of being lonely and not able to access distraction. If you were to lay two in a tube for 2 hours with nothing but your thoughts, would you not feel sadness at some point?  Or the whole time?

After the allotted time the nurse turned a dial on the outside of the tube and I felt the pressure releasing. My ears popped like Styrofoam as a chill passed over me. The temperature doesn’t change in the tube, even though you feel like you’re getting warm when the pressure starts and getting cold when it’s being released. After they checked my vitals I changed back into my clothes and left. It was past 3:30 at this point. My appointment started at 1pm but I arrived at 12:30pm since I wasn’t sure how all of this worked.

The next day I did some googling and found out that audiobooks can be played on DVD players. I checked out a Stephen King audiobook from my local library. I wasn’t too picky, I just needed to start something that day. Over the course of that week I learned the routine. I came in early, changed, and was ready before 1pm (time slots weren’t negotiable). Before and after tube time, I would talk to the nurse about my upcoming surgery. Details were emerging. The number of HBO sessions I needed before the surgery would be 5. The number of sessions I would need total would be 30. (30!) I could feel my willingness as a patient was lagging. Cancer? Ok. Brain surgeries? Sure. Wound Care? Blah. I would never be the favorite patient at the wound care center like I thought I might be at some other doctor offices. I wasn’t trying to be charming or funny, I was simply going through the motions.

When the weekend came, I was excited about not having to spend 2 hours of my day in a tube! I gladly did all of the “don’ts”.

I went back the following Monday to start my groundhog day routine of sitting in a tube for two hours. It was at this session the nurse told me she had heard about my surgery date, it would be next Monday, February 6th. While in the tube I listened to a particularly profanity filled section of the Stephen King audiobook, I realized that if the only way to communicate to anyone outside was by me just speaking, then the nurse would be able to hear everything I was listening to inside the tube. I felt a little self-conscious but there was nothing I could do so I sat back, listened, and waited. As soon as I got out, I asked You can hear the book, can’t you? The nurse confirmed but told me that she can turn down the volume on the tubes so she doesn’t hear anything that’s being played. And she said, “I just can’t listen to Westerns all day.” That same day another patient was starting treatment in the other tube next to mine. An older gentlemen, he chose to watch Fox News for his two hours.

The next day the nurse told me a detail about the surgery I hadn’t anticipated. I’d need a JP-Drain attached while in surgery. The nurse described it as a grenade shaped device connects to a tube that runs into a wound in order to drain it. You have to detach the “grenade” part and dump any drainage it collects from the wound it’s hooked up to. A discussion regarding the necessity of a haircut (or buzz cut) followed. If I am vain about any aspect of my appearance, it’s my hair. There was really no way to know if I should buzz it or not for the moment. The second I got back in my car I googled “JP-Drain” and searched for images of what a JP-Drain attached to the scalp would look like. I called the doctor’s office with my question but could only leave a message (which is standard). Paige had to endure all of my anxieties about these unknowns I would be walking into, and trust me, there were many anxieties.

A JP-Drain. Attribution: www.oncolink.org/cancer-treatment/hospital-helpers/jackson-pratt-jp-surgical-drain

(Paige also had to endure my anxieties about the previous week. Not just the adjustment to tube-time but I was getting over a cold which turned into a head-cold. The won’t let you go into the tube if you feel sinus pressure in the top of your nose or your forehead. I didn’t feel that. I just had a head-cold. Enduring the pressure with a head-cold generated a lot of headaches for me and some even when I slept later that night at home. It was alarming since that’s how my whole journey started. I asked my doctors about it and the consensus was that the tube can’t do anything to you to exacerbate headaches. Eventually my head-cold went away and the head-aches stopped. But I know what I felt, and it felt wrong. However, head-aches aren’t objective events so I just had to let it go.)

When I arrived for the next session, I had to wait because another patient was in my tube and still needed to finish his therapy before I could go it. For some reason my wound care doctor came into the room and asked how I was doing. I shared my concerns about the surgery details and the JP-Drain. (A doctor has to be present in the office for HBO to take place but the doctor doesn’t need to be in the room during the sessions, a nurse has to be present the entire time in case of an emergency. They sometimes rotate in-and out.) He explained that the tube to the JP-Drain could be a variable length so most likely the tube would go down to my abdomen where the bulb (grenade) would sit. This made me feel better since I was picturing a bulb attached to my scalp.

I later heard from the surgeon that he recommended to have my hair trimmed. So I cut my hair short the day I got that message.

I don’t have all of the details about how long I’ll need to have the JP-Drain attached to the wound. Or what follow-up appointments with the surgeon will look like. I’ve been called by the hospital and given instructions on when to arrive and what to do and what not to do the day of the surgery. Paige will be there to drive me home. Past that, I have to let go what I don’t have control of.

After my first week of January 2023 I thought I’d be working in schools as a sub by late January latest, that date will have to shift again and I’ll have to make peace with it. How’s the saying go? “Time heals all wounds”?

Station Eleven

Station Eleven novel by Emily St. John Mandel, 2014

I feel a sense of urgency to write about the best television series made to date, due to the impending arrival of an adjacent show that will be highly acclaimed, The Last of Us.

But Station Eleven was first. It was very much first. The book was published in 2014. The TV limited series debuted in 2021 into a very much fresh-pandemic world. (Limited series meaning that it only consists of 10 episodes, it’s not an on-going seasonal TV series.)

Stop me if this sounds familiar, Station Eleven deals with a global pandemic that ravages the world and changes the way humanity approaches daily life and forces everyone to ask “What’s valuable?” and “What keeps us alive?”

The author, Emily St. John Mandel is demure when asked about her talent for prophecy. “What becomes really obvious, if you research pandemics, is that there was always going to be another pandemic,” Mandel says. “It’s just something that happens in our history. There will be something else after Covid-19, and something else after that. It’s like if a novelist had written a novel in the sixties about a fictional war. Does that mean they predicted the Vietnam War? No—there was always going to be another war.”She told Esquire magazine in December of 2021.

When this TV series came out in December of 2021, I was not ready to watch it and I even questioned why anyone would watch such a heavy show for entertainment. 2021 was post-vaccine but a variant-heavy time for the world dealing with COVID. I hadn’t heard about the book at all. So this world-ending due to a pandemic show seemed too raw, too real for me, especially since I was not too many months away from my own life possibly ending.

From word-of-mouth and podcast recommendations, I gave it a shot by myself on a boring Sunday night in the fall of 2022. By 2022 kids were going to school without masks on, meet-the-teacher was back, and things seemed to be in a mode of recovery.  The first episode was so heavy I considered stopping. But like all good TV it introduced characters, and you found yourself becoming attached to them– it made you ask questions about their immediate future.

I think the thing that kept me going was that there was an unexpected calm moment in the first episode. And I needed to know more about that moment.  (You’ll know it when you see it.)

Spoiler alert: The “Georgia virus” (only named in the novel) introduced in Station Eleven is way worse and a lot more deadly than COVID.

Most of the time, TV and movie adaptions do not hold up to the experience of reading the book that serves as the source material. The adaption takes short-cuts, the characters are not allowed to develop as much, sometimes entire parts are left out, and everyone walks away saying “The book was better,” with much confidence.  (Unless you’re my children, it seems.)

That can’t be said about Station Eleven. It’s an experience that is wholly different and richer than the book.  It appears that the author doesn’t take this as a slight. “Honestly, I wish I’d thought of that,” she told Esquire regarding the connection and of two central characters in the TV limited series that are both on independent journeys and only have a short, chance meeting in the novel.  

The TV limited series also adds plot elements that enhance the characters introduced in St. John Mandel’s  novel. There is a whole backstory and moving plot with one of the characters that crystallizes a moment in the TV limited series that’s not in the novel.

As I’ve mentioned Station Eleven deals with a global pandemic and its aftershocks on the surviving population. When we say surviving people, we’re talking about 1% of people left. The characters have to make choices about how to survive and what brings meaning to the world, all the while it has the feel like they’re living-in-someone-else’s-house–they move and live in what’s left of a planet that was historically built for a large populace but now has little to no usable resources remaining.  This sounds gritty and difficult– and it is. The novel and adaption don’t hide that but it’s not agony on the audience. A theme among some of the survivors is the phrase “Survival is insufficient.” It’s a phrase that originated in a Star Trek TV episode, but some character choose it as a motto to live by, some even getting a tattoo of the phrase. The novel and TV series are not about just survival but what meaning looks like when the world has to begin again.

The characters are that lived through the on-set of the pandemic (known as year zero) are forced to reflect on a dead world and its former comforts and ease, along with their own regrets and reflections on the missteps of that time. The people born after year zero say that most of those survivors “lost their minds.”

Continue reading “Station Eleven”

Limits & what a sort of early retirement is like

When I last wrote I had a rather quick ending to my post. I think that post was perceived as a lot of Gunpoint, and not much Enlightenment. Well, maybe I can get back on track here.

Thanks to everyone who reached out to make sure I was okay and those who gave me advice to help.  Let me catch you up to where I’m at this fall.

I saw my endocrinologist in late July and the visit resulted in a discussion and the order with a battery of blood tests. She warned me that she was going to require a lot of blood to figure things out, and also that additional money would be needed to require the tests she was going to order (on top of the out-of-pocket max I had already met). I was also instructed to buy a reliable blood pressure monitor and record the results at least twice a day.

Two days later I was working on a pipe under our kitchen sink and experienced a mini-seizure. It was very scary– one second I was hunched over white-knuckling a wrench against a PVC pipe and the next my hands were shaking uncontrollably. I was narrating what was happening to me to Paige who was over my shoulder. My words were cryptic to her at first. “I can’t move,” and “my hands are shaking,” it was difficult for me to consciously describe what was happening to me as it was happening.  Eventually Paige helped me to lie on our kitchen floor and got me some towels to rest my head on.

While laying there, I started some deep breathing exercises and I felt a sensation take control of my face. I knew the right side of my face (also the side of both my surgeries) was twitching involuntarily. Paige later told me it only lasted for four to five seconds, but for me it felt like five minutes. I laid there breathing deep for the next half-hour or so until I thought I could sit up. Luckily, I never lost consciousness and did not have to go to a hospital or any doctors offices immediately afterwards. But my mind raced with the possible implications. I messaged my neurologist and endocrinologist about the event. They put me back on the anti-seizure drug I had previously weened off.

I found out the hard way that I can’t “power through” things— physically or mentally. My blood pressure is too low to take on the tasks I previously had. I suspect the low blood pressure had a lot to do with my mini-seizure.

Being powerless and not being able to trust your body is a profound experience. Some people never have to go through this until very late in life, some people not at all. I feel lucky that it had these experiences as a middle-aged adult and not in my youth. It really drives home the point that nothing is guaranteed– nothing is a given. Raising a glass to your health is not an empty gesture.  Disability can happen to you in an instant. If you’re disability-free, find gratitude in that. And try to empathize with those who do have disabilities.


In another two days I was going back to the endocrinologist’s office to start those lab tests. The very first was a simple blood draw lab test. When the results came back I was told I had almost no cortisol (a stress chemical your body needs to function daily) and that I had, in a sense, been running on fumes since I tapered off my cortisol steroids in November of 2021. My directions not were to start a low-dose cortisol steroid called hydrocortisone (you may have this in your house as a topical cream to put on bug bites), and to come back to for more tests soon.

(We also chatted about Neil Gaiman since I had brought a copy of Coraline to read while waiting. She was currently reading American Gods and enjoying it. We haven’t talked about the Sandman show yet but that’ll happen at our next appointment.) 

These results and the implications made sense to me. I had been mentally foggy and exhausted for almost 9 months. It was impossible to gain weight, energy, or strength. No wonder I slogged through work when I tried to go back, why I couldn’t increase my work hours, why I had no motivation to do the things I loved doing with any free time.

Usually, the feeling that a revelation like this brings about middle aged adults is a light-bulb moment. Even when told about a cancer diagnosis, the immediate feeling is not one of resignation, anger, or disbelief but one of clarity. This happened when I was told about the 2.5cm brain tumor in my right-frontal lobe. Suddenly, the headaches and the vomiting all make sense and the mystery was gone. So there are some brief moments of relief when news like this is passed down to a patient. This makes the ensuing feelings of dread, disappointment, and foreboding more agonizing. The questions are answered by more questions.

So as July ends I started taking my low-dose medicine. For the month of August, were no noticeable side-effects. However, I didn’t see any benefits either. I was stuck at my low weight, not gaining any energy or strength.  I was simply told to keep taking the medicine. Then mid-August rolls around and school starts. I had planned on starting work in some sort of educational capacity when school started. But I consciously decided not to rush things or sign up for a bunch of training or workshops since my body isn’t responding to the medicine yet and my daughter is starting middle school.

The first day of school comes, and I can tell that this is going to be a major lifestyle shift. My son is still in elementary school but my daughter is now starting 6th grade at a middle school. The elementary school is our Hobbit Shire. We don’t want to leave our Shire. It’s comfortable, it’s close, and we like the teachers and friends we’ve met there. Mina starting middle school forces us to leave the Shire. Middle school is more like Rohan or Gondor. It’s different, it’s far away, and it’s unknown to us (and probably no “2nd breakfast” or “elevenies”).  By the time I come home from dropping our daughter up, I’m exhausted. And it’s well past the 7:30am mark which is the typical start of an engineering day. It’s past the start of any school day. I am glad I didn’t rush into anything because it wouldn’t have worked. On a positive note however, the longer commute and new routine doesn’t allow me to come home and crash into a morning slumber. I stayed up and drank coffee. I slowly started to be productive.

I found myself walking my dog almost every morning, reading books, playing guitar, and cleaning things around the house. I felt a nagging sense of guilt. “I should be working,” “I should be contributing to our household monetarily,” “I should be contributing to society.” As one friend told me his therapist said, I was “shoulding” all over myself. Eventually I made these voices go away by allowing myself to just have one month off. It’s just one month. Give yourself one month to not think those thoughts and not feel guilt. This ended up being difficult. Our culture does not make this easy. Sometimes I found myself googling employment opportunities of different careers and jobs than the one(s) I’d envisioned. I told myself to join the gig economy one day and then convinced myself to become an entrepreneur the next. At some point while on a post-coffee moment and walking my dog I managed to drown those voices out and take my month off in peace.

Some observations about not working. It’s harder than you think. It’s incredibly lonely, and if you don’t treasure solitude than you’ll be desperate for the social interactions you’re missing. When the topic of what I do comes up with mixed company I dub myself “Mr. Mom.” I made lunches for the kids in the mornings, I act as their chauffeur to schools and back (for Mina). I do the grocery shopping, I try to make dinner (most nights), and struggle finding food the kids like. (Mina tells her friends that my only job is to “feed the dog.”) I plan elaborate projects around the house but tend to neglect routine cleaning. I don’t feel drawn to be a become a PTA parent , or to join any organizations that have attendance commitments. I do want to volunteer for charities here and there. To maintain some sort of social life, I try to organize lunch with a friend once a week. Most of the time people are busy, but I do get to have some good lunches with friends.

Another aspect of taking time off is if you have a working spouse. The concept of retirement that’s been shown to us is a couple enjoying life together with all the time in the world to do everything. But I don’t think that will be the case for most of us. During my time off, I found myself lonely but well rested, meanwhile, my wife Paige is socially fulfilled but exhausted from her daily grind. Time off, or a sort of retirement, is not the “grass is always greener” promise that’s on display during financial investment banking commercials. If you or your spouse really loves their job and it’s a job you don’t typically age out of like teaching or education, or they are ambitious and driven to work until old age, then you may mismatch your timing of retirement or whenever you have extended time off from work. This maybe not a problem if you don’t get along with your spouse, but I want to use my free time to do things together (travel, take walks, baking, crosswords, etc.).  That’s been an unexpected discovery for me during my extended time off.

Continue reading “Limits & what a sort of early retirement is like”

Quality of Life (AKA where I’ve been)

I’ve lost so much weight it’s a problem. None of my clothes fit and I need special belts with no notches to make sure my pants stay up. I think I’m back down to my high school weight or even maybe late middle school.

Every since my first brain surgery I’ve notice a “pulse” in my head when I rest against a pillow. It’s like what you might feel in your finger when you have a finger stick at a doctor’s office. I think of Buddy the Elf saying, “My finger has a heartbeat!” It keeps me awake unless I position my head in the exact center of a pillow. Now with the weight loss, I feel my whole body’s heartbeat at night– It’s strong enough that I feel the movement in my chest. I make an art of finding the perfect position where I don’t feel any pulses long enough so I can sleep.   

My evening routine of sitting and building LEGO sets is met by back pain and body aches when I standup to finish for the night. The act of getting down to a hard surface and then trying to sit and then stand back up filled my head with the pain I knew that would come. My upper-body strength is gone. I struggle to pick up Will whenever he asks, most of the time I needed to leave it to Paige.

Mina and me on her 11th birthday. Cake by Paige.

I try to do push-ups like I would do after my treatment, and my body collapses on to the carpet (forget about trying it on a hard surface).

I find myself in a position that many men fear, empty of strength and endurance. I am emasculated.

When I took my last dose of cortisol steroids in November of 2021, and now I feel stiff and uncomfortable all the time.  I was told the feeling would “probably” last about six months. My vegan comfort food is void of all taste (all vegan food really), so I abandon veganism, ironically to become more healthy. When I need it the most I cannot gain a pound of weight despite indulging on all of the food I was avoiding during my time of cortisol steroid bloat and heaviness. I eat cake, milkshakes for lunch, ice-cream for after dinner. The sugar headaches are gone, and the weight is gone. Yet I cannot do the things I desired the most when I was under the control of the steroids. Even sitting down for long periods of time hurt– I have no butt. It was suggested I take a cushion with me where ever I go, but after seeing a co-workers cushion laughed at as a “booster seat,” I decide to live with the pain.

When I’m at doctors’ offices they measure my blood pressure and once its displayed they exclaim and tell me I should go to my doctor or a hospital. They make me take it again when I’m standing up and its marginally better.  The only reason they let me leave, I think, is because Paige is always there with me. My blood pressure is low but I have little trouble in daily life. If I stand up fast, I steady myself and move on. This continues for months. I return to work. The doctors have cleared me for that.

I arrange a part-time schedule. It’s only supposed to be two days a week. It seems like enough to make progress on projects but not get sucked into the inevitable overtime deadlines and crunch. Returning after two years and after the worst of the pandemic, I know my boundaries, and I won’t let work overstep it’s given place in my life.  During working hours the office has the low hum of computers running and mice clicking, but the human interactions are as silent as a monastery. There’s the half-hearted, “How was your weekend?” or technical questions about CAD features. I sit in the cube-farm of the office. It features brand new standing desks and low-profile cube-walls so everyone is visible. There are project discussions about how late somebody can work that night, if a deadline can really be met, or griping about a new county permitting requirement. But when it comes to actual sharing or getting to know a human being, it’s radio silent.

“I’m a stage 4 cancer survivor and that’s why I haven’t been here for two years,” I announce to no-one in particular.

Engineers do not have the tool set to talk about or address cancer, or at least it’s very rare. They are good at laying out a project and finding the resources to execute the issues, but cancer is not a billable client with a deadline.

To their credit the people around me respond and thank me for sharing. I realize then that most of the office knows except the people I’m sitting three feet away from whenever I’m in the office. “I wanted to tell you because everyone else knows except you all.” I realize it’s the truth as I’m saying it. My disease has been a known quantity to the people that were there that Thursday when they found a 2.5cm malignant tumor in my brain. But its been two years and everyone that was there has an office with a door in this new building, and the cube-farm are all new co-workers to me except one person.  I understand that it would be against the law for anyone to discuss my health in the workplace, but it’s still alienating.

My questions about software changes I’ve missed are met with helpful responses and patience. I still find myself heading out to lunch alone, usually grabbing a milkshake and some fries. Despite the junk I put into my body, my weight doesn’t move. I know this isn’t healthy– I want to gain back weight and feel healthy before making myself a diabetic or give myself a heart attack.

My non-work days usually consist of shuttling the kids to school and picking them up. Some of those days are stacked with doctors appointments once the kids are at school. This routine starts during the winter and my body takes in any cold and holds on to it for too long. At several outdoor winter events I attend, I notice my hands turn white and my teeth chatter. I seem to be the only one this cold, everyone else is commenting on how nice it is outside and we should hold these events outdoors on a permanent basis. Even sitting at home I find my hands turning white. I do everything I can to  warm them up, but nothing stops me from being cold. Especially office air-conditioning. I go to the mens’ room just to run my hands through hot-water.

In a sense, I hibernate through the winter. On off-work days I drop off the kids and go back to sleep until lunch. I might do a grocery run or make insurance calls for whatever latest billing errors that I’m going through, and then I nap until it’s time to get the kids.  In this time I don’t do anything I want to do, even though I have the time for it. Even when the weather changes, my habits stay the same. I don’t write, I don’t play guitar, I don’t take walks, I don’t play video games or watch TV. I live 2 seasons like this. I stay working out for 3 months, and then leave in early June.

We try to squeeze all of this into a mid-June 20 minute doctor appointment with my oncologist.  My scans are good, there isn’t much to talk about from a cancer-perspective. He deems this a “quality of life” issue and says he will refer me to an endocrinologist. We spent the summer waiting for a phone call. The phone finally rings in July and offers an appointment in early August– and our hearts sink. That’s so long from now. I’m on a waiting list for cancellations. I sometimes call to just if there happens to be an opening. There is not.

My phone rings in mid-July and they have a cancellation at the end of July– if I’m interested. I was drained and cynical at this point, but this appointment would be more helpful than my body could anticipate .

Raymond K. Hessel

Make the change before it’s too late

We all have a bucket list (maybe only in our heads– partially complete). A compilation of things we’d like to do, places to travel, and events to experience before we die. Or we have a path we’d like to take that seems too dangerous to go down. I’m not talking about quitting your job to “pursue your passion”. That’s mostly fairy tales. But there is something different we want to do, something that we want to try out. Usually it’s difficult and requires a lot of time and effort, and walking away from something else you’ve spent years building.
When it comes actually deciding when to take that chance, the time we tells ourselves all too often becomes “someday.” But something happens in our lives where it becomes too late to change course. Maybe our brains become hard-wired to our daily routines, maybe our system of values ages and stops allowing ourselves to take lifestyle risks. 
It’s a common thought experiment to wonder what you’d do with your life if you were given a terminal diagnosis or were told you had cancer. What would you do with the remainder of your time? What would you change? At the end of the thought process (most of you) can say, “Well, thank God I don’t have cancer.” Hat-tip to Ryan Holiday

Thank you- An Ode to the Caretakers

Thank you

Thank you, Thank you, Thank you, Thank you. Similar to my recap of the book Thanks a Thousand: A Gratitude Journey.
I don’t think it’s an exaggeration to say, I owe you my life as I live it today.

You’ve been so kind and generous,

I don’t know how you keep on giving….

And I never could’ve got this far without you.

Natalie Merchant, Kind and Generous

One thing I don’t give enough credit and thanks to are the many people that have served as my caretakers on my journey.

First and foremost I’m thinking of my wife and the mother of our children, Paige. Not only has she taken care of me and been by my side this whole time (even sleeping in hospital chairs so I won’t be alone). It’s also her gainful employment and health insurance which has allowed me to seek out and obtain the care I’ve needed to get to where I am today. I keep telling her to mention to the higher-ups at Anderson University that I’m ready to get my AU Trojans tattoo wherever they deem appropriate. I’m also thinking of my parents (who are always there to offer any type of support they can) and every healthcare professional who has stuck me with a needle, brought me food, administered scans, and dealt with my seemingly endless lines of questions that I write down beforehand and write in my journal before each appointment. The doctors and nurses now know to yield the floor for my many questions after their initial introductory remarks / results updates. I’m also thinking of friends and family and my church, of course, especially my friends that have taken up the duty of childcare during my surgeries and recoveries. First, in a non-COVID world (first craniotomy in 2019) and then, in a COVID-world (2nd craniotomy in 2020). I have had friends and family send practical and thoughtful gifts, I have had friends send seemingly random gifts that I’ve fallen in love with (for example, a vinyl record player), and I have had folks that are almost strangers reach out to offer material and emotional support. It’s been uplifting.

It’s reminded me of when we had our first child and then outings somehow became different. When you take a baby / child with you, Suddenly you’re not a number in a line anymore but folks go out of their way to give your kid a sticker or draw a smiley face on your receipt for them. It restores your faith in something just a little bit more.

And I feel like my experience has been like that. Folks do just something a little bit extra and it goes along way for me and our family. At the beginning, people do stuff for you, like get you a cup of coffee or a gift card for some take-out, and you think, well– when I get to the other side of this, I’m going to do something for them to show them how grateful I am and it’ll help them. But then so much happens, so much is given to us, there’s really no way to keep up. It’s grace in motion. There’s no return gesture to cover it, no perfect thank-you card, post to Instagram or emoji that comes even close to covering it. What I’ve learned is that it’s grace, and just like the divine grace we’re all given, you can’t do anything to earn it or say thank-you (even though we’ll still try both because we’re human). I think the best you can do is pause and reflect and meditate on it. Use all of those moments of grace and try to help someone else when the time is right and when it’s not forced. We’re still human and we’ll still put this some in our ledgers and somehow try to balance it all out in our heads but there really is no balancing. In a sense, we’ll always be in the red. But that’s okay. There’s something so stubborn (or maybe it’s smug?) about us, that we think we can somehow brute force our way into returning grace. And we really can’t. The best we can do is to sit there and meekly say, “Thank you.” And let that be it. So: Thank you.

Mindfulness and games, part 4 (and final part) Tabletop gaming

Mina and I playing the beautiful game Wingspan by StoneManaier games. Gift from my brother, Thanks Rob! You can tell by my hair that this was close to my recovery from my 2nd brain surgery.
The setup and stuff included in the tabletop game Wingspan. It’s beautifully done and yes that is a bird house at the end of the table
Even Will gets mindfulness time playing Candyland solo at nights before bed, “the Gumball always wins!” You can tell by Will’s hair that he’s starting to really get into the slicked back look.
My brother and I got a chance to play Everdell when I was in Tampa this past June. Another fun, beautiful game! I often find it helpful when someone familiar with a game’s rules and flow can “quarterback” the game play for my first play through. Thanks Rob for quarterbacking this one!

So my last part in the Mindfulness in Gaming series is going to touch on tabletop gaming (AKA Board games). tabletop gaming has come a long way since games like Monopoly and Sorry.

These days tabletop games can be beautiful and complex. Some lasting for a couple hours, some lasting for 30 minutes or so. The price tags have also increased too. I would expect to pay something around $30-60 for a top rated tabletop game. (Wingspan is about $60, as is Everdell).

These games have taken every tiny detail into account and feature incredible artwork. After a game of Wingspan I want to go birdwatching with my camera and add some birds to my Audubon app (Which is great, BTW).

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Mindfulness in gaming series 3: The Overstory

A character driven mystical novel about how trees really communicate with one another and the infinite complexity of nature

This book has come the closest to describing a mystical experience I myself had– which I think is nearly impossible to do since I think mystical experiences are ineffable.
But here’s the passage, which I think is simply beautiful. I don’t even think it needs any context.

A man in the boreal north lies on his back on the ground at down. his head extends from his one-man tent, facing upward. Five thin cylinders of white spruce register the breeze above him. Gravity is nothing. The evergreen tips stretch and scribble on the morning sky. He’s ever really thought about the many miles a tree travels, in smallest cursive increments, each hour of every day. Forever in motion, these stationary things.

The man with his head sticking out of the tent asks himself: What are those treetops like? They’re like the cog-toothed drawing toy, spinning out surprise patterns from the simplest nested cycles. They’re like the tip of a Ouija planchette, taking dictation from beyond. They are, in fact, like nothing but themselves. They are the crowns of five white spruces laden with cones, bending in the wind as they do every day of their existence. Likeness is the sole problem of men.

But the spruces pour out messages in media of their own invention. They speak through their needles, trucks, and roots. They cord in their own bodies the history of every crisis they’ve lived through. The man in the tent lies bathed in signals hundred of millions of years older than his crude senses. And still he can read them.

The five white spruces sign the blue air. They write: Light and Water and a little crushed stone demand long answers. Nearby lodge poles and jack pines demur: Long answers need long time. And long time is exactly what’s vanishing.

The black spruces down the drumlin put it bluntly: Warm is feeding on warm. The permafrost is belching. The cycle speeds up.

Farther south, broad leaves agree. Noisy aspens remnant birches, forests of cottonwood and poplars, take up the chorus: The world is turning a new thing.

The man rolls over onto his back, face-to-face with the morning sky. The messages swarm him. Even here, homeless, he thinks: Nothing will be the same.

The spruces answer: Nothing has even been the same.

We’re all doomed, the man thinks.

We have always all been doomed.

But things are different this time.

Yes, You’re here.

The man must rise and get to work, as the trees are already doing. His work is almost done. He’ll strike camp tomorrow, or the day after. But this minute, this morning, he watches the spruces writing and thinks, I wouldn’t need to be so very different for sun to seem to be about sun, for green to be about green, for joy and boredom and anguish and terror and death to all be themselves, beyond the need for any killing clarity, and then this- this, the growing right of light and water and stone– would take up all of me, and be all the words I need.

The Overstory, A Novel, Richard Powers

So it’s a character driven mystical book, based partly on the real life and research of Suzanne Simard— don’t get too attached to anything. Richard Powers kills more darlings than George RR Martin. But this book has a narrative and a character that has helped me reconcile my own link between a digital and physical love of nature. I’ve pondered before on how I could be so attracted to the digital when I also have a deep love and enjoy spending time in real, unfiltered nature / creation and how my role models include nature loving mystics like St. Francis of Assisi, Rumi, Buddha, and Christ.

20 minute TED talk but the stories about grizzly bear escapes and the revelations about how forest trees communicate make it worth it for sure.

The latest issue of WIRED magazine also ran a small feature on The Overstory, mentioning Suzanne Simard’s work.

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Mindfulness in gaming series 2: That Dragon, Cancer

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.

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Mindfulness in gaming series 1: Why games make Us better and How they Can Change the World

Reality is Broken: Why games make Us better and How they Can Change the World

Reality is Broken: Why games make Us better and How they Can Change the World

…I’m healthy enough to get back to my ponderings.

I’ve been mulling this over for a while and I’m like to have a multi-part series on mindfulness and gaming (digital and non-ditigal). For the first part I’d like to share a book I read soon after my seizure called Reality is Broken (why games make us better and how they can change the worldby Jane Mccgonigal).

Cover of Reality is Broken by Jane McConigal (Why games make us Better and how they can Change the World)

For me, the title alone caused me to gravitate to it. As I’ve shared previously, the concept of my life (and death) went through a heavy overhaul after the seizure.

Why go into a topic like mindfulness and games– two subjects that seem at odds with one another? For me personally, I’d really like to reconcile my own gravitation to both. I think each is can be immensely helpful and both have helped me significantly in my own journey of healing, thus far.
On one hand, I have my love of nature through historical figures and some of my own mystical experiences. I’ve written before about how St. Francis and his unique bond with nature and how there is something mystical about dying slowly outside (St. Francis, Christ, and Marcus Aurelius are good examples) On the other hand, I still really enjoy games (digital and non-digital) and, the environment, the challenge, and the happiness they bring me– how do those fit together? For one thing, when you’re playing a game you are never alone. I’ve heard a game defined as

Playing a game is the voluntary attempt to overcome unnecessary obstacles.

Bernard Suits

When you’re playing a game (even solo) you’re engaging with the designer of the game, people who have played the game before you, and in a way people who will play after you (think about high scores and leader boards.) This helps with the problem of the paradox of self-help (which I’ll get into later). After a lot of thought and reading, I have my own ideas but it’ll take a few posts to hash it all out. Not all of these posts will be easy to read, but some (like this one) will.

Part of my interest also came from a podcast I’d heard here as a guest on. If interested, I believe it was the Tim Ferriss podcast, link here.

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