Recently I posted that apparently much of my shortness of breath was attributable to a heart issue (an atrial shunt) that might be fixable. In the words of a famous (“I am not a crook”) crook, that statement is now inoperative. Well, not actually a lie. But further testing has persuaded my docs at Brigham Hospital that the shunt, while present, is not a significant enough factor to warrant the risks of heart surgery. Which puts us right back where we started: my lung issues are, in fact, lung issues and not something else masquerading as lung issues. In other words… never mind. This is a little discouraging, but at least I seem to be stable, and with the new exercises I’ve added to my morning regimen, I am oddly, in some ways, in better shape than I’ve been in years.
It turns out, by the way, that I may not have idiopathic pulmonary fibrosis (IPF) per se, but rather hypersensitivity pneumonitis (HP), which is similar but different. Both involve fibrotic scarring of the lungs, but with different patterns visible on CT scans, possibly different causes, and maybe slightly different prognoses. I don’t really understand all the technical details, but HP may be produced by an inflammatory process, possibly with identifiable causes. The treatment is the same either way, and my doctors don’t consider it worth an invasive biopsy to nail it down. However…
A little while back, we had a professional air-quality scan done in our house. One finding was high levels of particulates in the air on the third floor where my office is located. The offending pollutants were identified as fiberglass particles and cellulose particles. Guess what kinds of insulation we have in the attic space directly next to my office. Right, cellulose and fiberglass. Could this be a factor in my problems? Maybe. To address it, we now have two HEPA filters running 24/7 in my office. We have plans to better enclose the insulation with Tyvec-style house wrap. (A similar condition exists in our basement. Hong, who often does work for us, has already started putting up the house wrap over the fiberglass insulation in the basement ceiling. Bottom line is, if we can remove air pollution that may be aggravating (perhaps even causing) my lung disease, it can only help.
All of this coincides with ongoing downsizing efforts in the attic and library and office, preparatory to moving down to the first floor apartment later this year. More on that next time.
E.L. Doctorow once said: “Writing is like driving a car at night. You can see only as far as your headlights, but you can make the whole trip that way.” My version is: “Writing this novel has been like driving a car at night in the fog. With no headlights. Holding a flickering match out the window.” I’ve burned through a lot of matches on Masters of Shipworld.
This has been kind of a big problem for me. I mean, I’ve worked through blocks before. But this is orders of magnitude beyond any creative block I’ve previously experienced. Some of the reasons I think I know. I’m not going to discuss them all in detail here, because they’re between me and my shrink and God. But let’s just say that I see the compounding effect of a variety of things getting in the way of my creativity. Some are fairly obvious: recent multiple losses of a personal and professional nature, health concerns that I can forget only until the next time I take a breath (or get my O2 hose stepped on, usually by me), and the looming practical concerns of preparing for a move downstairs while also prepping for some major needed home renovations. I’m not sure how well I’d handle any of these separately. But cumulatively, I feel as if I’m surfboarding in slomo over the Falls of Rauros on the River Anduin.
It’s possible that that’s a mixed metaphor.
A recent conversation with my shrink (yes, I’m getting professional help with this) highlighted an interesting dichotomy in my lifelong patterns of work and play. At least I think they’re interesting; maybe you will, too. Bear with me while we rocket back in time.
In my teen years, I was a real grind at school, and I didn’t know how to loosen up and have fun. I did well academically. I wasn’t a sports fan per se; but on the wrestling team, I achieved a good record through dedication and determination, even though I lacked certain native attributes such as speed and upper-body strength. But did I have fun with the sport? Well… I achieved satisfaction in my accomplishments, yes, but truthfully, I was too tightly wound to have much fun. Okay, then, what about off the mat and outside academics? I enjoyed band (clarinet and drums) until I didn’t anymore. I definitely enjoyed reading science fiction and had a few friends (and teachers) I could share that with. But socially I was deep down an impossible introvert, and hopelessly shy around girls. A lot of what I did, frankly, was to apply my nose to the grindstone and not look up. Those were my high school formative years.
Come my college years at what is commonly regarded as an elite university, I flipped all that over. I realized I wasn’t enjoying wrestling anymore, and I quit. I realized that academically I was not nearly as smart as a lot of my peers, and furthermore, despite my love of science, I really did not want to pursue an academic or professional career in it. It was too specialized, and I was a generalist and a romantic at heart. Instead, I wanted to nurture my imagination that had been fed by science fiction and develop it into an SF-writing career. There was no good academic help available for that, so I was really on my own. The other thing I realized was that I wanted to stop being a grind and learn how to goof off and have a fun—a skill that most of my peers had mastered years before. I learned to scuba dive. I learned to drink and cuss and be rude. I became marginally less shy around girls.
In the years following graduation I returned to nose-to-grindstone, but in a different way. I applied myself to writing and getting published. (The other aspects of my life more or less flapped in the wind, as I had learned no marketable skills for earning a living, and my social life was going nowhere. I turned to things like substitute teaching, diving for quahogs, and sorting packages for UPS to stay alive.) That last part is parenthetical because my real point here is that developing a career in writing, for me at least, and I suspect for many writers, involved a supremely tricky balance of cultivating my own creativity and imagination with dogged work and perseverance in writing and rewriting and rewriting some more, and—finally—getting published. At first intermittently, and then on a regular basis. (Oh, in the meantime, I stopped being shy around girls and I married a real keeper.)
Jump to now, when the same requirements exist—to juggle free-thinking imagination with determined work—except that I have changed. I’ve experienced life, with, in particular, losses such as we all endure, such as important people dying on me, the aggravating possibility of dying prematurely myself, the seemingly limitless disintegration of decency and honesty in the culture I live in, and so on. I know it would be helpful to find a way to integrate all of that into my writing, and eventually the stories—maybe even the current project—will be better for it. But right now, the link between the imagination and the grindstone seems to have come apart in my hands. There’s a puzzle—or maybe a labyrinth—between me and where I want to go. I seepieces of it, but I haven’t yet figured out a workable solution. I will, because I have to. Coincidentally, as a part of downsizing, I’ve been reading the Zelazny Amber series—to decide whether or not to keep the books, which I’d not read before. His descriptions of walking the all-powerful Pattern are highly resonant with my impressions of the creative process.
In a different metaphor, I’m wandering in the wilderness and trying to find my way back to the path. It can be very discouraging. But discouragement is the enemy of imagination, so… take another deep breath and try to get back on track?
Why am I describing all this on my blog? Well, partly to clarify it for myself, partly to let you, my faithful readers, know why things are taking so long, and partly in hopes that it will offer solace to others who may be similarly struggling. (You’re not alone.) Anyway…
Sometimes readers who have to wait a long time for the end of a story become irate, if not outright disillusioned and cynical. I can understand that. But no writer does this intentionally or because they don’t care. If you’re one of my readers waiting for the rest of the story, all I can say is, please continue to be patient. I’m working on it. In order to do that, I’m working on me.
Happy Easter greetings to all of my friends and family! I hope you are gathered with people you love. And to my Jewish friends, belated wishes for a blessed Passover. And to those of you who are of neither persuasion, enjoy a gorgeous spring day! (Or autumn, depending on where on this big ball of wax you live.)
In the doctor’s office, they call it a “communication” in the heart or sometimes a “shunt.” When I asked if that was another way of saying a “hole,” the doctor laughed and said, “Sure, if you want to call it a hole, it’s a hole.”
What we’re talking about is called a “patent foramen ovale (PFO)”—pronounced foh-RAY-mun oh-VAY-lee—a hole in the heart that didn’t close the way it should have after birth. It’s a small opening between the upper heart chambers, or the atria. It’s normally present during gestation in the womb but closes up during infancy—except when it doesn’t. Then it’s called a patent—or open—foramen ovale. That’s what I’ve got, and it turns out to be the cause of most of my shortness of breath when I’m exerting myself. What’s happening is that some of the blood that should be getting pumped to my lungs for fresh air is getting shunted instead to the left side of my heart and sent back out to the rest of my body. And then my saturation O2 drops.
We learned this during some recent tests: one where they did an echocardiogram while injecting micro-bubbles into a vein, and another where they ran catheters into my arteries to measure various parameters, while having me pump away on an exercise bike until I was gasping. They gathered lots of good data, I was assured. They thought I might have pulmonary hypertension, but I don’t.
What does this mean about the pulmonary fibrosis? Well, I still have it; that hasn’t changed, alas. But it’s milder than my breathing needs would indicate. The accusing finger points at my heart for that.
The good news is, this is something they can probably fix. First, though, I have to get scheduled for another test, to get clearer images of the shunt. If that goes as expected, then I’ll be, er, shunted to cardiology for the next phase.
Stay tuned. It should be exciting.
This is a railway shunt. Not really what we’re talking about.
We’re in the final throes. We leave Monday morning, and it takes at least a day to clean up and put everything away. Myriad small repairs underway. The wooden door just got its fourth and last coat of polyurethane. Looks pretty good, if I say so myself.
Allysen is taking a crack at sanding the surface of one of four giant mahogany disks cut from the tree that went down in Hurricane Maria. These will make great table tops, if they can be smoothed from the uneven cuts and finished adequately. (I’m amazed anyone was able to slice these things at all.) Dunno if it’s doable or not, but they’re quite beautiful pieces of wood.
You know how I said I was reserving time in this trip for writing and enjoying the tropical environment? That proved to be mostly a lie—at least the time for writing. There was just too much to do, and no one else to do it. At least the pauses between tasks, looking out over the hill, were restorative.
Last night we finally got together with our dear friends and neighbors Frances and Che. Frances is recovering from a medical procedure, but she looked great. Che’s English can be hard to understand, but there was one thing he said that I got: “If there’s anything you need, anything at all, you’ve got it. We are family.” Pause to make sure I understood. “We are family.”
That seems like a good place to wrap this season’s run of The Ponce Chronicles. Probably the next time you hear from me, I’ll be back in Boston.
Yesterday was Allysen’s birthday! We celebrated by…er…spending the day waiting to see a doctor at the “urgent” care clinic in downtown Ponce. In a freak accident, Allysen somehow scratched her eye with her thumbnail and was in considerable pain. After waiting four hours to be seen, we were told “We’re not really equipped to treat eyes,” which would have been nice to know at the start. But we came away with a prescription for some eyedrops, and they seem to be doing the trick. She’s feeling much better today and was able to do her regular work at the computer.
We did celebrate in more proper style with a nice dinner at Vistas rooftop restaurant, overlooking the city.
This was Crystal’s last day here, so I drove her to Mercedita Airport at the obligatory 4 a.m. hour to catch the JetBlue flight out. Before leaving, Crystal singlehandedly painted an entire bedroom for us! Bless you, Crystal. (For readers who do not know Crystal, she was the one who first introduced me to Allysen back in the day, when she—Crystal—was a housemate of mine in Cambridge.)
I know I said I would do no sanding, because lungs. But we had a half-sanded varnished door which had to be finished or it would be ruined by the elements, and I absolutely was not going to let Allysen keep sanding it with a possibly scratched retina. So I extended my O2 hose, donned an N95 mask, and finished it with a power sander. I was covered with dust, but my airways remained clean under the N95, and now it’s finished. Sanded, I mean. We still have to polyurethane it.
Too much remains to be done to leave on our original date, which was tomorrow. So I changed our flights, and we are staying until next Monday. Wish us luck!
Here’s another shot of the pony that sometimes comes up to our back fence, munching on an offering of greens. We don’t know his real name, so I call him Horsie.
Work continues apace, here in Ponce. Our friend Crystal flew out from California to join us, and she’s been painting up a storm in one of the bedrooms. I have been working on a multitude of nagging repairs. Allysen has been project-managing, while holding down her regular job, no mean feat.
On my first trip to Home Depot, in the evening, I was driving down Las Americas Avenue and found myself looking straight ahead at a breathtaking view of the crescent moon and two planets. The first chance I got to take a picture was in the parking lot at Home Depot. Not great resolution, but here’s the moon with Jupiter (above and to the right) and Venus (below).
We took most of Friday off to drive into the mountains to a coffee plantation and café. Unfortunately, they were no longer giving tours of the plantation, but we had a nice lunch including coffee from beans grown right on site. And the drive along the winding mountain roads was exciting, as always. At a stop for gas, I learned of the existence of something called Skrewball Peanut Butter Whiskey. I did not buy a bottle to try, but I sort of wish I had.
Here’s the three of us in front of a water wheel at the coffee plantation.
And here, from the café, you can see some coffee trees growing on the hillside.
Sunday we took off to the beach, which is about an hour’s drive west from Ponce. There’s a lovely secluded stretch away from the main public beach, which Allysen’s parents discovered decades ago, and is still the preferred place to go. We couldn’t see much evidence of it, but we were in the part of the island hardest hit by the earthquakes a few years ago. The epicenter was not too far offshore from where we were.
Because my meds require me to be very careful about sun exposure, I didn’t spend much time in the water, but here’s the splendid view I had from under a shade tree. That’s Allysen and Crystal cavorting in the Caribbean. Lunch afterward at a nearby hotel got me my first tostones of the trip—excellent.
Here in Ponce, Puerto Rico, folks have been busy for a while. Allysen and Jayce came down in late January, and Allysen’s brother and a friend joined them, and a little later, their wives. I stayed in Boston with McDuff for that part. When I came down on February 14, everyone except Allysen had gone home, and I caught the baton in midair. Lots to do! (In case you missed the previous installments, this is work on the house that Allysen’s parents built in the 1970s and ultimately retired to.) If you look really closely at the picture above, you can see Allysen in the living room, working away at her job. And here she is, having just heard some horses go by on the hill above.
Some important stuff was already done. Andrew and his friend Paul replaced the two skylights that had blown off in Hurricane Fiona, and the bent gate was fixed, and Allysen and Jayce between them scraped and painted the stairs down from the parking pad. All of which was work I was delighted to miss! Because of my pulmonary fibrosis (can you hear the O2 machine puffing in the background?), I am officially off the “strenuous and hazardous” work details, meaning no heaving lifting, sawing, painting, etc. Nothing with dust or chemicals in the air.
That’s left me with a bunch of smaller jobs, like drilling into concrete to reattach a door to the tool shed (masked!), figuring out how to cover up a counter gap left from the earthquake a couple of years ago, figuring out how to put mosquito screen over various odd-shaped openings around the skylights where you have to attach to concrete, figuring out how to replace the broken cover over the pool pump equipment. But no deck building! No, no, no, not this year, and not any year ever again. Oh, and figuring out where and how to store the backup generators that somehow got stashed in a really inappropriate place.
Part of “figuring out” things is figuring out how to buy what you need. There’s Home Depot and Costco, of course, but they don’t have a lot of what we need. Take storage for the generators. The obvious solution is a small shed, and we even agreed on where one could go. But the two stores I just mentioned don’t have the right size. Amazon, of course, has everything, including exactly what we need. But most Amazon merchants won’t ship to Puerto Rico. Why? I don’t know. I’ve probably complained about this before, so I will spare you the rant.
Still, we’re making progress. We have vowed to spend some quality time on this trip actually enjoying the island where Allysen spent several years growing up, and we even have plans of where we want to go.
I am reserving more time to myself, to work on the book. So far, though, I have not found my way through the quicksand that has impeded my progress with the story. (If you are tempted to ping me and ask, “When is the next book going to be done?” please don’t. When I have something to report on that, I will report it.)
Meanwhile, I have seen only one (!) stray cat and no dogs, and that makes me a little sad. But we do have the occasional hummingbird, and a very sweet horse that wanders into the yard just below us, and that always brightens our day. And the trinitaria behind the house are beautiful!
Title: The Mysterious Midnight Ride. Completion date: circa 1961. Age of the author: ~12. Circumstances of discovery: cleaning office.
Here it is, folks. You’ve been clamoring for the archivists to uncover this work (seriously, a few of you have), and now it’s before you. My first story set to paper, when I was in 6th grade. My co-conspirator in this was my childhood best friend, Mike, now better known as classical music composer R. Michael Daugherty. I say co-conspirator rather than coauthor, because while we devised the story together, we each wrote our own version. I wonder if his has survived. I seem to recall that he wrote in the first person; mine is in third person. That’s about all I remember about it.
Kudos to the LAX Lost and Found department, the L.A. Airport Police who actually do the work to reunite 5-7000 items with their owners every month, and the shipping company that handles mailing the items home. Eridani and Tabula Nova were very well packaged and sent out promptly after I paid the quite reasonable $35 for Priority Mail. Hey, kudos to the USPS, as well!
E.L. Doctorow once said: “Writing is like driving a car at night. You can see only as far as your headlights, but you can make the whole trip that way.” My version is: “Writing this novel has been like driving a car at night in the fog. With no headlights. Holding a flickering match out the window.” I’ve burned through a lot of matches on Masters of Shipworld.
