Saturday, April 29, 2017

James's Crappy Podcast

Since September, I've started nine blog posts and finished none. 

I had thought that being out of chemotherapy, I would get more blogging done, but it appears I underestimated how much more work a full-time writing job would be in the months after treatment than it was before. Hopefully things will get better and the day will come when I can again write in the office, work on side projects, and fire off the occasional blog post. I've decided, though, to work based on where I am rather than where I want to be or used to be. (And by "decided" I mean that I try to decide this every day, with weekly encouragement from my counselor.)

So I started a crappy podcast

The main advantage of the podcast is that it's hard not to finish an episode. Nicole and I jot down a few notes about what we'd like to cover, press the record button, and stop around the 15 minute mark. I have made a firm commitment to myself not to edit. 

In the first episode, we introduced the podcast and talked about three stages many struggles might be divided into. 

In the second episode, I wanted to share some ideas I've been kicking around about collective guilt and the notion of institutional repentance. But it turned out we had a lot to say, so the guilt piece turned into three episodes. 

I'm planning to do future episodes on TV shows Nicole and I have binge-watched, on 19th century dime novels with Mormon characters, and on what it was like to teach Sunday school together with Nicole for two and a half years. I'm also planning to do an episode with my sister about overlap between my training in creative writing and hers in industrial design. 

For those who enjoy the podcast (if any)...any suggestions for other topics you might want to hear about? 

Thursday, September 22, 2016

On Drive and Contentment in Hamilton and My Life

I first listened to the musical Hamilton just after my friend Mel Leilani Larson got back from a trip to New York raving about the show, when she told us the soundtrack would be streamed free on NPR for a while in advance of its official release. My huge respect for Mel's judgment was tempered only by my considerable inertia: I pulled up a tab but didn't actually start listening until about midnight, and even then only because Nicole had a lot of papers to grade and happened to be doing so in bed.

It took about a phrase for me to be hooked for the night and about three songs to be hooked forever. I loved the drama and the wit of the show, loved the way its musical references helped bring the real culture of the late-1700s to life for a listener, loved the characters and the way they duel each other verbally and literally--but what grabbed me most was what I suppose you might call the fundamental forces competing in Hamilton.

Hamilton is about a lot of things, of course, but there's a side of the show, which was the first layer I clung to, that's about wanting really badly--relentlessly, obsessively, all-consumingly--to be engaged in the world and leave your mark there. I was already starting to get sick, though we didn't know why, when I first fell in love with the Hamilton soundtrack. But despite the creeping symtpoms, I was still writing long hours on work projects and side projects. Enough that the Hamilton lyric "why do you write like you're running out of time?" was like a mantra to me. In the show, I saw my own obsession with forging something powerful and beautiful, my own willingness to push others to push beyond the norm toward that vision--"I'm never satisfied," I reminded two co-writers (and fellow Hamilton-heads) when asked for my opinion during one editing meeting, "I have never been satisfied." I wrote like I was fighting, and I fought for the writing, and I exulted not only in moments of success but also over being locked in the struggle. I was sick, and I didn't know why, but I kept pushing, I kept working and wanting to work--though I wasn't getting better and doctors kept pushing further afield for explanations--until keeping sanity, family, and writing all intact started to seem like maybe more than I could keep up with.

It was while all this was happening that I found what, to me, is the other fundamental force in Hamilton. It happened sort of by accident...I'd read an essay that talked about what values the antagonists, Burr and Hamilton, represent and I thought, "That not right. Structurally, Burr is not the antagonist." Which was my old script analysis class talking, telling me that just because someone shows up early or makes bad choices doesn't make them the antagonist unless they also sew the seeds of the conflict that gets resolved in the end.

I don't think I'm going out on a limb among Hamilton fans to say that the character of Hamilton is never really tempted by Burr's wait-for-it philosophy and that  the end is certainly not about a willingness to be vulnerably outspoken versus a desire to keep yourself safe and show your cards only at the right time. No: the end is not about Burr at all, though he is one of many who helps get us there on a plot level. The end is about Hamilton and Eliza.

It feels a bit weird, there, putting his last name and her first--but that's actually the point. The first force is the force of the last name and the second force, Eliza's force, is about the significance of the first name. All through the musical, Hamilton is pushing to do good work through a public persona, a last name level of identity. And from the prologue on, it's Eliza's voice that keep calling him back, constantly reminding him that he is also Alexander. He has a home role to fill: time to spend, attention to be paid, and no matter how he wants to speed up and fight for a legacy, Eliza seems to appear in warning to invite him to slow down, to be content with the essential.

For me, the show is most fundamentally about the tension between moving/fighting on the one hand and learning to stand somewhere small and specific on the other.

A lot of interviewers asked Lin Manuel Miranda about the political dynamics of an immigrant upbringing and the influence they had on him, basically questions about the public place of immigrants in America. I hope somebody also asked him--even if they decided not to go on record and print it--what the family dynamics were for his dad and other immigrant dads he saw. Did they have the immigrant hunger and sense of struggle so many first generation people have, the hunger Hamilton embodies? And how did that effect their families for good and ill? What did Lin and his mom and the other kids he knew think about their dads' drive? I've certainly known families where the immigrant dads' relentless need to carve out a space in a new country felt a bit out of control.

And in the musical, Miranda seems to side--ultimately--with Eliza, seems to see Hamilton as fundamentally endangered by his inability to stop being Hamilton at times and be Alexander. Looking back, it was ironic for me to identify so much with the drive in Hamilton's life that destroys him without thinking much, initially, about the neglected place of love and belonging that seems most to anchor and redeem him. But then, like I said, I got sick. And I stayed sick. And I stopped writing like I was running out of time and started trying--despite all the pressure on my patience, despite the low energy and the distracting symptoms--to love like that is the purpose of time.

And for almost a year now, I've learned to be away (more or less) from the world. I mean, I still follow news and Mormon discussions and literary conversations a bit, and I watch weather I won't experience except through my hospital window, but none of it has much claim on me. I am not too much Goldberg the writer and social commentator; I'm mostly just James in the Goldberg family and James among some friends. A year ago I was taking pride in never being satisfied--now I work on being content with whatever I have, on being open to the moments of grace and connection that come with it, and I take precious little thought for the troubles of tomorrow, being well aware (as Jesus said) that every day has evil enough unto itself.

I loved Hamilton's side of Hamilton. I'm living Eliza's now--and, of course, she is right.

And yet...

Last night I was taking one of my many walks around the hospital floor, listening to Act Two of Hamilton as I went. I got to the song "The Room Where It Happens," where Hamilton, without hesitation or apology, trades away New York City's status as the national capital in exchange for the votes that will finally give him the financial system he is sure the country needs. Hamilton is still running high on the achievement when Burr comes in to ask him why he was willing to "sell New York City down the river." And in his explanation of how he just got exactly what he wanted, Hamilton gets a bit reflective about what's driven him through the Revolution and through all the hazards and compromises of government. "God help and forgive me," he sings, "I want to build something that's gonna outlive me."

When I heard that line last night, I felt it all through me. I am planning on living, but have also tried to prepare myself today. I am looking forward, to be sure, to the end of treatment, but have also tried to live as if it will go and on far past my expectations. I have tried to be content living in a land between the normal world of the living and the world of the dead.

But that line. God help and forgive me. I want to build something that's gonna outlive me. 

More than I have in months, I wanted to get back to the world. To my fight to change something for good there, to leave a mark. The old hunger awoke: the old restlessness, relentlessness--and I quickened my step, pulling a pole full of intravenous medications behind, as if I could break out into the world faster by walking. As if I could choose my fate by sheer force of will.

God help and forgive me. 

It is not a simple thing to wish so badly for two things that can seem so contradictory. But I suspect God will help and forgive my ambition. I suspect that wish to break out of these walls is a gift from God, just as my wish to find contentment within them is. And maybe my life is preparing me to carry both gifts acceptably. I've known relentless drive; I've known how discontent with things as they are can help you call new things to life. And I've learned stillness and attention; I've learned to be content with the world as grace can help you see it. Maybe this is what the Sikh gurus could see when they called on their people to be soldiers and saints: they wanted them to have the capacity and will to move together for justice and goodness when history demanded it, and at the same time they wanted them to be able to experience the blessings of simple, honest life, aware of but unencumbered by the struggles that always seem to sweep the world.

And maybe I, grandson of a Sikh, can learn to be at once a soldier and a saint, at once the exacting Goldberg and the patient James.

Saturday, September 17, 2016

Grace and Time

In July and August, I had my first round of high-dose chemo, and it was probably the hardest thing I've done in my life. The particular regimen killed all kinds of fast-growing cells: it screwed up my skin, gave me serious sores in my mouth and all through my GI tract, and wiped out my immune system completely, giving space for the bacteria that normally live in me in balance to go haywire. They had harvested bone marrow stem cells from me in advance to rebuild the marrow, but the period between when they put them in and when they started producing was really awful.

About a week after my immune system started to recover, I was eating enough to be off of intravenous nutrition and felt good enough to go off the "pain pump" of on demand pain medication: progress enough to get me out of the hospital.

After the chemo, I had two weeks of outpatient follow-up. At the end of that time, they'd decide whether I was ready to go back in for my next and final round of chemo or go back home to Utah for a while to recover first. Being a "just get it done" sort of person, I was hoping to be healthy enough to just go straight into the second round so I could back to my normal life more quickly. But though other systems had recovered well, my platelet count was still at transfusion-level, so I got sent back for more recovery instead.

It was a little weird, at first, to be home. I was happy to be back, but couldn't get my mind away from the struggle of active treatment. I wondered if that was like what soldiers feel if they get leave home between tours: not knowing quite where you belong or what mode your body should be in.

It was also really good to be home, though, and not just for the comfort of being with my own space--however odd it sometimes felt--and with the people I love most. By coming back when I did, I got to be part of the family rhythm at an important time. Just after I got back, Elijah started school, Kira started Junior High, and Leif started a twice-a-week preschool. Though I was still definitely in recovery, I could sit and work on homework with them, listen to them talk about their days, get their paperwork done and permission slips signed, and generally help them settle in to their new worlds. It meant a lot to me to be able to do that. 

My time home also happened to coincide with a concert at BYU by Leslie Odom Jr. (who had just moved on from the role Burr in the obsession-inducing musical Hamilton). Nicole had bought two tickets--for herself and a friend she had hoped might turn out to be me. I got out of pajamas and into regular clothes for the occasion. His vocal performance was both impressive and fun--and it was really cool to hear a performer I respected share some of his thoughts on art and faith between songs. Over the course of the concert, Nicole and I each happened to start a cheer that spread through the crowd. That was a nice feeling. And after it was done, we got to drive home together and breathe the same air and hold hands and I felt very good about being in the same state. 

Even at home, my platelets stayed quite low for a while and my return to treatment in Texas ended up getting delayed a week. At one point, that would have frustrated me. But that last week was when I got to see Mark and Julie Magleby, who I'd been aching to see since getting home but had delayed contacting for a while because I couldn't imagine doing anything when I saw them but crying. And having the extra week also meant that the day before I left, I got to go to the wedding reception of Rachael Anderson, who'd helped me process my initial cancer diagnosis eight years ago and helped me through the recovery then.

We hadn't seen each other much since, so it was Rachael's first time meeting all my kids. And being with friends who had known me when the cancer started, I thought again about another timing that had worked out: the initial treatment didn't affect fertility and I'd these beautiful children, then Nicole and I had decided after some difficult pregnancies that our family was complete--just before the cancer came back and needed treatment that almost certainly would affect my ability to have more children.

In most cases, life has a certain rhythm and sickness feels like an interruption. I certainly have felt that way at some points in my treatment--like I'm in exile from my regular life. But this last trip home, and especially that moment at the wedding reception, were reminders that there has also been a certain grace to my life between treatments. God gave me a window to have my children. God gave me time to help them start school, and extended that time long enough that I could see and be strengthened by visits with old friends. I even felt well enough at one point to do several days of work from home for my job--and I finished all of the high-priority projects for my talent set a day before my energy levels dropped again and forced me to focus on my body instead.

I'm back in treatment now and trying to trust. Trying to trust that whatever happens: however long treatment and risk extend, or even if treatment and subsequent chance aren't enough to fulfill my three-year-old son Leif's recent prayer that "daddy can not die until he's a great-grandpa," I'm trying to trust. That there is a grace to time, that God will give me all the time I need--sometimes by making it flow in a different way than I first think I want.

Wednesday, July 20, 2016

How to Get Through Chemo (advice borrowed from my wife)

Last week was a busy one for our little family of medical tourists in Houston. The kids continued their epic party with cousins, doing things like opening a massive doll spa and creating new animal-airplane lego hybrids. Meanwhile, Nicole and my mom took turns hanging out with me during long sessions of having my blood cycled through a machine to collect bone marrow stem cells, followed by a flurry of tests and procedures to get me ready for my first round of high-dose chemo.

Over the weekend, I had no medical appointments whatsoever for the first time in a month or so. As it happened, my energy levels were picking up at the same time and I felt sort of normal for a few days. It was unexpected and sweet. On Monday, I got to eat some of Surinder Riar's Punjabi-style eggplant (glorious!) and spent the evening playing a puzzle game with the six kids in the house plus my mom and Nicole. Seeing it engage their minds while sharing space on and around the couch with them was just perfect. Exactly the sort of thing I wanted from my last day of freedom for a while.

Last night (after ducking out for one last dinner out with Nicole), I checked into the hospital. For the next five days, I'll get a different regimen of chemo than I've had before. This one is supposed to be the toughest of the entire treatment process: it will knock my immune system out entirely and I'll have to wait for the bone marrow stem cell transplant this weekend to gradually rebuild it. I'll also likely have a more extreme experience of typical symptoms like fatigue and digestive problems, along with mouth sores alarming enough that even with pain medication, some patients aren't able to make themselves eat. It can take several weeks for patients to recover to the point where it's safe to release them, so the doctors and nurses told me to plan on 3-5 total weeks.

The first day's dose of chemo is dripping into me as I write. Over the next few days, I'll probably start to feel the promised symptoms. But since this treatment with all its troubles gives me a high probability of cure, as opposed to death, I will take it with thanks on my lips (whenever I am not swearing my way through pain, diarrhea, or vomiting).

In any case, as someone who had made it through six cycles of fairly rough chemo in order to graduate to two cycles of extremely rough chemo, I have decided to write up a brief guide to getting through (with most of the insights stolen from my wife).


Sometimes, I think of myself as a very strong and brave person. I am not sure why. Maybe it's the general human tendency toward overconfidence. Or maybe it's that my good looks and natural charm trick me into thinking I possess all kinds of other virtues. Trust me, though, when I tell you that I am wrong. Put a few pounds of retained water weight on me and the tough person in the mirror is reduced to a groaning pile of blah. And if a nurse says she will need to clean out some blood clots under the plastic cover to my central line, any bravery I imagine myself to have will be washed over by fast-rising anxiety: not because the process is particularly painful, but because it involves tugging slightly on stitches which are attached to my body, and knowing this still weirds me out.

So the bad news is that unless the human average is shockingly low, I am not that strong or brave. But the good news is that chemo patients don't have to be. According to my wife, they need basically two things:

1) A High Tolerance for Absurdity

Chemo is sort of absurd to begin with. Taking known toxins to improve your health? It may work, but it doesn't make any simple, intuitive sense. The symptoms can also be weird and embarrassing.
In my experience, they are manageable if instead of just struggling, you can find times to admit they are weird and maybe even laugh at them.
Case in point: On one particularly nauseated day, Nicole and I happened to drive past an amusement park. Looking across a place I had no desire to go, I told Nicole I planned to start a charity called "Roller Coaster Rides for Chemo Patients" designed to cheer them up. For the next twenty minutes, she and I laughed deliriously as we imagined roller coaster cars full of bald, puking people trying to let a misguided someone give them a good time.
I may not have been stronger than my symptoms that day, but I was sillier. And that, it turns out, was enough.

2) Discipline

There's no problem with experiencing feelings like fear, discouragement, panic, and/or defensive paranoid hostility toward anyone the people you. As one doctor recently told me, anxiety is a sign that her patients are really listening to what they're being told. But you have to find a way to separate your emotional state from your behavior enough to follow directions anyway.
As a chemo patient, you'll often do better if you can eat when you don't want to eat. You may be encouraged to walk when you don't want to walk. And there may be lots of other regimens to keep up with. At home, it was a sometimes-dizzying assortment of medications. In the hospital now, I have four different mouthwashes with different protocols. For about five hours per day, I will be rinsing out my mouth or else keeping an eye on the timer until I can next eat or drink--or until it's time to start four minutes of rinsing with the next mouthwash. (Come to think of it, that one requires some tolerance for absurdity as well as discipline.)
The word discipline comes from "disciple," which meant a student, often of a religious teacher. Disciples needed both the humility to listen to their gurus' instructions, the consistency to follow them, and the creativity to figure out how apply them in their lives.
During chemotherapy, there is an awful lot you cannot control. But you can control how much discipline you exercise in following through on your doctors' instructions--and that humility, consistency, and creativity can make a big difference.

Those two things, as Nicole observed, are enough. You don't need to be exceptionally strong or brave (or for that matter, good-looking or charming). You just need to be tolerant of the strange experiences you have and a little stubborn when it comes to following medical directions, and you'll get through.

Though Nicole's observation came fairly early in my treatment, my experience has continued to confirm its validity. At this stage, all I might add is an optional third recommendation: an openness to small joys and unexpected blessings. A chaplain I talked to a few weeks ago explained it well. He showed me his hands tightened into fists. This is what we want to do in the face of suffering, he said. We want to recoil, cling to our lost sense of control, and close ourselves off from everything. Then he opened his hands, palms facing upward. It's only if we open ourselves to the things we are asked to pass through, he said, that we are also open to receive the moments of grace and blessing along the way.

We will see how I feel about this all in a few weeks, but I'm feeling confident today. I have a pretty good ability to laugh at odd and troublesome things. I have discipline to hold onto while things still seem easy and to carry me through the times when things get rough. And for the most part, I am willing to keep my palms open to trouble and joy alike.

In other words, at age 33 I am finally feeling relatively prepared to face life on this earth.

May I emerge from the coming months, as statistics suggest I will, to linger in this life for many years to come.

Friday, June 24, 2016

Hospital Scripture Study (part two)

A week or so ago, I wrote about focusing on a single passage while thinking about--though not reading--the scriptures. Zooming in on a (mostly) memorized passage is only one of many options, though. During the same hard hospitalization, I also spent time thinking about the whole Book of Mormon.

It worked like this. After years of reading, I know what the books of the Book of Mormon are and what order they come in. I also know roughly what's in each one. But in my regular reading, I'm too stuck in chapter and verse to think much about how they all fit together.

It was different in the hospital. It was a pain to pull up chapter and verse, but even lying down with eyes closed, I could just think through the books and kind of feel for a rhythm or shape to the whole book. I'd try to feel the rise or fall of each group of books and then play the shape in my head like music.

Trying to put it into words afterward, here's roughly what I noticed:


Origin Story: 1 Nephi, 2 Nephi, and Jacob cover the origin of the Lehites. There's a strong forward rhythm through 1 Nephi as they follow crazy faith to get to their promised land, then this shift to a slow, long notes feel as they try to lay out the core of their spiritual foundation for the new life in 2 Nephi and Jacob.

The Grind: Enos, Jarom, and Omni shift to a new rhythm. They take life for granted in the land, and the routines of everyday life--from hunting for food to fighting wars for survival--are just part of that life. Little strains of spiritual life streak out from time to time, but it's mostly about the grind: this is what we do, this is who we are. The musical phrases get shorter as you go as if to say "this is shorthand. This is shorthand for the song that never ends."

Complications and Reversals: Mosiah and Alma. It's almost like the song wants to talk back at itself. It's been saying "this is the same old, this is the same old..." and then all at once it splits into these different streams of new melody and starts intertwining them. It's saying that it's not just all the same old grind after all.
New songs. We've got people following a dream, a mirage, of claiming the old land of Nephi. But everything turns around. Zeniff is supposed to hate the Lamanites, but he sees good in them. Then he tries to trust them and things fall apart. Noah is a great king for building and prosperity, but spiritually empty. Abinadi compares him to a cloth dropped in flame, but it's Abinadi they burn. Then a bad priest named Alma turns good, but can't dodge the curses Abinadi prophesied. Except that for almost everyone, sooner or later, curses turn to deliverance. And did I mention half of this is told backwards in to a report to a man from a people our heroes thought had all died in a field of bones?
Never mind that. Get back to the story. By most of the way through Mosiah, all is set right. People have wandered in the woods, so to speak, but after the troubles four groups finally come together and there's a good king and a good priest and...the next generation is trying all kinds of crazy stuff out and their sons are at the head of it.
So then boom an angel and another big reversals, and now it's Alma #2 on God's side and trying to unwind the consequences of his past. Two-life father, two-life son and the histories of their people chugging on below them with equally dramatic reversals. Remember the constant war with the Lamanites that was the constant rhythm through the Grind? During Alma, so many people leave Nephites to join Lamanites or leave Lamanites to join Nephites it's almost impossible to tell who's who anymore.
And the mixed up rhythms of a new melody of war, where it's hard to tell where the real enemy lives--this snake of an enemy that works it way through Nephite and Lamanite nations, that wreaks havoc whenever there seems to be a chance for peace. The mixed up rhythms of the new war rise, and strains of the old origin melody of faith and courage shine through, and things resolve sort of neatly in the end with a new set of sons and new lands to disappear off to and the old generation passing reverently away. And it almost feels like it should stay that way, like the piece should pause at this moment of calm where the torch is passed and the hard won tranquility should stick. It almost feels like the song should end here.

Rising Toward Climax: But of course, it doesn't. Helman. Third Nephi. Fourth Nephi. How can it? When things are going well, for one thing, you naturally want to build on them. And sometimes you do that by building big, heavy castles in the air.
It's not just the same old song of human pride, though, because this time there's this urgent underbeat: the prophetic "the time is coming" from the rest of the book  is now "the time is almost here." And it gives this urgency and direction to the prophets' story. And in time with it, the stories of pride get faster, wilder, more desperate. Kishkumen running with a dagger bathed in blood. The secret oaths of Gadianton. Then more plots, more blood, more machinations and divisions and resolutions followed fast by collapses until WHOOSH the whole world seems to go up in flames and then descend into three days of darkness and a moan rises through the land.
And then in the midst of the moaning, there's a calming whisper. And in the midst of the darkness, darkness so thick you can feel it, there's a light. And then there, before you, is the promised Redeemer and there, on his hands, are the prophesied marks and he blesses the children who grew up in chaos and the peace of it flows through their families for generations.
And we've done it now. We've finally learned what it's like to live right and live well and live in peace.

Warnings: Except. Mormon, Ether, Moroni. Except.
Something melts in the melody of righteousness. Something small gives way, and then it all gives way, and then we're sliding fast again into an oblivion which we seem to want, which we seem willing to make all kinds of horrific sacrifices for. Not much of the faith-filled beat of the origin stories, not really any of the reversals of Mosiah and Alma. It's like the grind again, but this time under the grind is just something ugly. This rising and swelling will to meaningless power and through it to death. And over it, the only song is Mormon's lament for his people, his beautiful people, who gave themselves over piece by piece to the will of destruction.
And the tales that were hinted at early in the book: of the valley of bones, of the records found telling the tale of the people of bones--all that ancient history rises here to the foreground. For this people, and for the next people who will inherit it, the truth: that the will to meaningless power, the will to destruction, can consume an entire people. Yes, they all die at this part of the book. Everyone. Or rather: they were all dead to begin with wherever we started to look for something new. They had been great, like we strove to be, and they all killed each other as thoroughly as a nuclear holocaust.
And I'm alone now, says Moroni, through the layered memories of two dead peoples. A man sitting on the bones left by a people who sat on strangers' bones. And I will speak out from the grave to warn you and to give you what little teaching and ritual and spiritual gift I knew from a time when this fate was still something to be avoided.
And the day will come, Moroni says in the last plaintive note, when I will meet you before God oh people-who-lived-over-bones-and-bones. And then you will all know that what I tell you is true.


That is a long-ish written version of what the scripture-study-without-scriptures in my head felt like. I didn't do all the details every time, just started simply thinking about what the books feel like, and then ran through it again and again until it fell it the sort of loose groups or patterns I described above, and tried to just listen to them.

And the point was: to think. To remember. To engage in whatever way, whatever way I could come up with eyes closed stuck in the bed and in my head, with the book.

Because it's in that life of connection, not just in disciplined routine (though discipline is a great thing) that we come to know the scriptures.

Wednesday, June 15, 2016

Hospital Scripture Study (part one)

I've had a reputation in the wards I've live in as someone who knows the scriptures well. And while it is a tragedy, in some ways, that I will be remembered for this instead of for being really really ridiculously good-looking, I kind of like being the guy people text when they have a scripture question.

Because of my relative expertise, I am often asked during lessons on scripture study to divulge my study secrets. Unfortunately, unusual discipline about daily scripture reading is not one of them. I try to be pretty consistent for my kids, but my personal study habits have varied widely at different times in my life. Sometimes I do OK at reading a little each night (I've rarely even attempted to read in the mornings). Sometimes, I go an embarrassingly long time without reading scriptures on my own at all.

The most I can ever remember reading the scriptures is the month or so when I struggled with insomnia. I read the scriptures every night, focusing on books like Isaiah that have a reputation for being difficult. If I fell asleep reading, I counted it as a win. If I stayed awake for hours, increased scriptural literacy was an acceptable consolation prize.

I'm not convinced, though, that my familiarity with the scriptures comes from the occasional late nights we've spent together. What has mattered most, I believe, is the time I spend thinking and talking about the scriptures when I am not reading them.

For most of my life, I've spent time after I closed the book--or on days when I didn't even open the book--thinking about what a particular character went through or trying to imagine what they might have felt like in a given situation. I've spent a lot of time thinking through different teachings and wondering how they fit together. I even spend time thinking about the whole structure of a given book of scripture, trying to figure out how the parts contribute to the whole.

That's how I've gotten to know the scriptures so well. It's not just a matter of a physical habit. It's learning to let them linger.

I've spent a fair amount of time in hospitals lately, and it hasn't been conducive to sitting and reading hard texts. I've still thought about the scriptures a lot, though. One night, unable to sleep, I ran through what I remembered of the Lord's prayer dozens of times. Even though the simple language of the King James translation is hard to beat, I decided to come up with different wording for the ideas in my mind as a mental exercise in pondering their meaning. The next Sunday, having been discharged from the hospital, I wrote down my "translation" as well as I could remember it.

Here's the text from Matthew and from my hospital version. Matthew first:

The Lord's Prayer

Our Father
which art in heaven
hallowed be thy name
Thy kingdom come;
thy will be done
in earth, as it is in heaven.
Give us this day our daily bread,
and lead us not into temptation,
but deliver us from evil:
for thine is the kingdom,
and the power,
and the glory,
for ever.

And then here's my exercise:

Jesus' Prayer

Let the holiness of your name
reach down into the dust beneath our feet.
Let your kingdom rise among us,
your will fill us to the brim.
Give us the day's bread to eat, Father,
and cancel yesterday's debts
as fully as we forgive each others'
unfulfilled promises.
Guard us from our weakness, Father--
save us from our darkest selves.
Because the kingdom is yours,
power is yours,
glory is yours
in the moment and eternity,

Looking back at both, I'm reminded that I like the version from Matthew much better. But I'm glad I took the time to come up with my own, that I thought hard enough about the scriptures to rephrase them.

I've read the scriptures before. Memorized some passages even. Having once put that time in, I didn't need to open them to continue the lifelong project of writing them on my heart.

Different techniques will work for different people. As a writer, mentally rewriting worked for me. Something else would certainly work better for someone else. But the time we let the scriptures pass through our minds when the books are closed does matter, and I hope we can all find ways to keep their words and stories active within us.

Friday, June 10, 2016

Back to chemo

In life, there are things you can change and things you just have to find a way to make it through.

I think modern American culture tends to make meaning in life mostly out of the first: we measure ourselves by the difference we made, the things we chose and accomplished. We tend to see the other things, from minor inconveniences to major problems, as distractions on the way to building the lives we want. A successful life is one where we finish the things we wanted to get done.

It seems to me, though, that older cultures--preserved in part through our religious cultures--take another view. While religions call for plenty of personal and community change, they seem to treat being alive as its own important challenge and to place significant value on learning to endure life well. A good life means more than the luxury of accomplishment: a good life is learning to carry a difficult world with some kind of grace.

I'm a modern American. I like to choose my path and make a difference. My religion has also given me more of a vocabulary and tool set for thinking about what it means to endure well, but it's not a skill set I have traditionally wanted to spend too much of my time and attention developing.

That is changing.

Last Wednesday, I got discharged from MD Anderson Hospital in Houston after five days of intensive chemotherapy. It was the first cycle in a new set of treatments, planned for the rest of the summer and into the fall, which are supposed to make up for the failure of three months of chemo early this year to finish the job. By the time I was let out of the hospital, I felt the familiar, insistent sorts of gross I've come to except: twenty-five pounds of retained fluid weight and three days of delayed bowel movements pressing down on my guts, numbness and tingling from damaged nerves in my feet making my steps strange, head a little dizzy and body more than a little weak.

I was not thinking particularly philosophically at the time. Just paying attention to the strangeness of my body and trying to get out of the building. Even through the fog of physical unease, I felt a patient's sort of gladness--a mixture of muted excitement and profound relief--to be going home. Since my house is maybe two thousand miles away from the hospital, "home" in this case meant my cousin Manju's house,* a more than welcome place to spend my two weeks off before the next round of treatment. And I felt all kinds of grateful to have my little sister Judith in town to help me do all the little things a patient is supposed to do, if also little embarrassed that our quality time together had, thus far, mostly consisted of her watching me lie around and moan or else shuffle around and moan.

It was raining on our way back: first gently, then in quantities that triggered flash flood warning text alerts. We made it back home just fine, despite the Houston monsoon, and I made it through the night OK, peeing off maybe ten pounds by morning. By Thursday a little before noon, I remember sitting on a couch and feeling surprisingly decent. For the first time in days, I could actually breathe deep and just think.

I looked over at my sister. And then, without any warning, I started to cry. I felt totally overwhelmed and intimidated; just beaten down by the prospect of going through all the troubles and uncertainties of treatment again.

I'd been fairly patient through my prior months of chemo. I'd done a good job accepting it with a mixture of humility, humor, and really boring but important discipline. And yet, with a moment to think ahead, all that experience didn't feel like enough to carry me through again--especially given that the coming rounds are likely to be significantly physically harder.

It was after the panic that I got philosophical. Looking back, I think I've made it through cancer treatment before, both after the initial diagnosis in 2008 and the discovery of a metastized tumor in November of last year, by framing it mostly as a distraction.

As soon as I suspected I might have testicular cancer in 2008, I read about outcomes and focused my attention firmly on the 95+% survival rate. By the time the doctors gave me my diagnosis, I was already willing to think of this as something to go through on the way to other things. It was the same when doctors confirmed late last year that a colony had survived in my digestive system and decided, after seven years of keeping a low profile, to try to take over. I was fairly intimidated by the intensity of the coming treatment, but quite confident that after a few months of disruption I'd be back to my goal-driven life. "It's not going to be fun, but it is going to be fine" became our family motto. We were able to endure by looking for the light at the end of a not-too-long tunnel and pushing through. 

Then came scans in March and April that showed half of my tumor is left, wrapped around the main artery to the liver. It turns out to be an important artery, so surgery was out as anything but a last ditch option. It turns out more chemo, first in higher doses than I've had and then in higher doses than I could survive without a transplant of my own stored stem cells, is the best treatment option. The percentage chance that I will be fine is still quite high--probably in the upper 80s to low 90s--but given the length of treatment, it's getting hard to see cancer as a distraction I'm holding on through. It's starting to feel like this is my life for now.

 And maybe, as far as making meaning out of life is concerned, that is an acceptable thing. Maybe the work of learning to carry this difficulty is an important part of my time living in a body on earth.

I am trying to move forward with that mentality. Whatever I can endure, whatever I can learn, whatever humor I can find in absurdity and whatever beauty I can find, as it were, in ashes--those things can be my milestones.

It's been ten days since chemo.

One day I made it out of the house to walk and stood under a canopy of trees. This is my life, and it is good.

One day while lying on the couch, I watched my nine-year-old cousin Jasleen put together a puzzle of the presidents and told her stories of Ulysses S. Grant's bad driving and John Quincy Adams' secret to eavesdropping in the House of Representatives. This is my life, and it is good.

One day, I vomited and swore through the morning then felt good enough by 1 pm to go to church. I asked two men I barely knew to bless me, and they spoke not only with comfort from the Holy Ghost and eyes for eternity, but also about my two-thousand-miles distant children and the comfort I could be to them even in the midst of the stress my pain caused them. This is my life, and it is good.

One night, I woke up with a fever high enough to need to go into the hospital and did so despite my distaste for hospital stays. They found that my absolute neutrophil count (normal=1,500 to 8,000) was 6. I braced for a stay of many days. This is my life, and it is good.

One night, I struggled to ignore neuropathic pain in my feet, digestive pain, lower back aches from the hospital bed, fever, and body-wide exhaustion to finally get some overdue sleep. For hours, I failed. I started to wonder if the universe is really worth its suffering. I tried to pray, and failing to find words, settled for crying out in my mind, again and again, the single word "father" until I fell asleep in the midst of my many pains, the sharp sensation of ice against my neck dimming other stimuli just enough to let my mind go. This, too, is my life. And it, too, is good somehow.

 One night, having had more sleep and knowing my white blood cell count was improving, I took advantage of the hospital time to watch an NBA playoff game. The players danced across the court and in a few consecutive possessions seemed to execute each play flawlessly. I let my eyes follow them, then let my eyes rest. I felt proud to share a world with such mastery of a craft. Sometimes, findings ways to be grateful for this world is my life. And it is good.

*Manju is actually my mom's cousin, but is close to my age. Being from an older generation than me, she's happy to take on the role of overprotective auntie when needed. Because we remember playing as kids together, though, there's also a nice feeling of shared experience and comforting closeness. It's a great combination.


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