Filed under: Brave New World, Connections, Feedback, General Musings, Genetic Testing, Humor, Machado-Joseph, Religion, Science, Society | Tags: ataxia, balance, blogging, Catholicism, confession, dystonia, genetics, health, humor, jim downey, Machado-Joseph Disease, medicine, MJD, National Organization of Rare Diseases, neurology, neuromuscular disease, NORD, pain, peripheral neuropathy, restless leg syndrome, SCAR8, science, self care, spinocerebellar ataxia type 3, testing, vertigo, Wikipedia
I wasn’t going to say anything about this, because it’s largely a distinction without a substantial difference. But I’ve had several friends ask some questions because of things I posted to social media, and I decided to just clarify the matter.
Last August, when I said this:
So, I got the genetic test results today: I have a mild version of MJD.
I lied.
Oh, it’s a small, technical lie, mostly of the misdirection variety. But it’s a lie.
I don’t actually have MJD, or Spino-Cerebellar Ataxia type 3 (SCA3), which is a genetic disease caused by a trinucleotide repeat disorder in a specific gene sequence. Instead, I have SCAR8 (it doesn’t have another name), which is a genetic disease caused by a disorder in a different specific gene sequence, and has symptoms that are like a mild version of MJD, plus a couple of other things that I’d noticed/showed up on clinical exam. Everything else I said in the post from August is true.
If you poke around online, you’ll find that there’s not much on SCAR8, because it’s even more rare than MJD (by like a factor of 10), so there’s even less known about it. But it’s in the same family of ataxias for which there’s no cure and very little in the way of available therapies. You just deal with the symptoms as best you can.
I have always been a fairly pragmatic sort of person, so I figured that since there’s really not much difference between MJD and what I have, there wasn’t a need to confuse the issue with writing about it. But it seems that one of the differences is some mild lower G.I. issues (along with messed-up signals from my body about the urge to urinate), which I had mentioned online and caught the attention of friends.
So there’s that. It doesn’t change anything in what I am doing: treating symptomatically, altering behavior as necessary to account for the disease, and getting on with life as best I can. But having been raised Catholic, I’ve now confessed to the small lie, and gotten that off my chest. 😉
Jim Downey
Filed under: Amazon, Brave New World, Civil Rights, Connections, Emergency, Flu, Government, NPR, Pandemic, Predictions, Preparedness, Religion, Science Fiction, Society, Writing stuff | Tags: America, Covid 19, distancing effect, dystopia, fire-flu, government, Josh Malerman, NPR, pandemic, racism, Science Fiction, St. Cybi's Well, theocracy, Verfremdungseffekt, writing
Why on Earth would you want to read a novel about a pandemic during a pandemic? Or why would you want to dive into a world where America is a dystopia of racial hatred and theocratic overreach when America is, well, trying to sort out racial hatred and theocratic overreach? There’d have to be something wrong with you to join in such a dance, wouldn’t there?
This was touched on in an interview on NPR I listened to this morning on my daily walk. In it, author Josh Malerman said that reading about a pandemic during a pandemic was somehow comforting; it was a way of saying “we know how to deal with this”.
In writing St Cybi’s Well I used an old literary technique to create some psychic space between the reader and my criticism of our American society, by not placing the story in America, but by having characters in the story reflect on and discuss what a dystopia American had become. This way the reader joins me in a dance, following my lead, but themselves moving through the story I’ve set out. The dystopia is there, but together we have defined it, perhaps tamed it enough that we can see it for what it is.
Of course, our reality is not the reality of St Cybi’s Well. Though it is still very early in the Covid-19 pandemic, I don’t think that it will be quite as devastating as the Fire-flu is in my book. And though we are perhaps at a turning point in the political history of our country, we’re not yet in a constitutional theocracy.
Take the lesson — or the warning — for what it is. That’s why you join the dance.
Jim Downey
Filed under: Art, Bipolar, Book Conservation, Connections, Depression, Health, Politics, Predictions, Religion, Science Fiction, Society, Survival, tech, U of Iowa Ctr for the Book, Writing stuff | Tags: art, bipolar, blogging, book conservation, bookbinding, Cheryl Jacobsen, Communion of Dreams, creative process, darkness, depression, Glowforge, goatskin, health, jim downey, Kickstarter, laser, leather, Legacy Bookbindery, literature, manic, mental health, predictions, Robert Funk, Science Fiction, society, St. Cybi's Well, survival, The Gospel of Jesus, The Jesus Seminar, UICB, Westar Institute, writing
It’s … been a while.
And a lot has happened. Mostly good.
* * * * * * *
Many years ago, a friend got involved in something called “The Jesus Seminar“, which eventually produced (among other things) The Gospel of Jesus.
My friend commissioned Cheryl Jacobsen, well-known calligrapher and friend of mine from my UI Center for the Book days, to do a hand-lettered edition of the book as a gift for Robert Funk, the founder of the Seminar. The work was done on calligraphic vellum, and when it was completed, I did the binding. This is it, which I have used as the main image on my business homepage for at least a dozen years:
And here’s the descriptive text from my site:
The Gospel According to Jesus: Full leather contemporary case binding, shown here as tooling is being done. Collaborative work with calligrapher Cheryl Jacobsen of Iowa City. Sewn on linen tabs, cover mounted to text block using adhesive. Covered full in burgundy Chieftain Goatskin, blind tooled using a hot brass folder.
It’s a lovely, but very simple and traditional binding.
* * * * * * *
Filed under: Art, Book Conservation, Publishing, Religion, Reproduction, tech, University of Missouri, Wales | Tags: art, book conservation, bookbinding, calligraphy, Diane M. von Arx, Donald Jackson, illumination, jim downey, Legacy Bookbindery, MU, photography, Special Collections, technology, The Saint John's Bible, University of Missouri, Wales, Wikipedia
In 1998, Saint John’s Abbey and University commissioned renowned calligrapher Donald Jackson to produce a hand-written, hand-illuminated Bible. We invite you to explore this work of art that unites an ancient Benedictine tradition with the technology and vision of today, illuminating the Word of God for a new millennium.
This was no small project. The finished bible, produced on animal skin vellum, was in seven volumes. Each volume was two feet tall, and three feet wide when opened.
Recently Special Collections and Rare Books at the University of Missouri — Columbia asked me to archivally mount special dedication pages to six of the seven volumes in their Heritage Edition set of the book. Since this very limited edition (just 299 copies) is the full-size, fine art version which very few people will ever have a chance to see in person, I thought I’d take some pics and share them here, along with some notes and observations.
Each volume comes in its own conservation clamshell box:
As you can see, these things are huge. They’re so big, I couldn’t store them in my large safe — so I picked up a pair of the books at a time, did the mounting (which takes two days to do properly), then returned them to Special Collections.
And that style of clamshell box is a work of art itself. I occasionally do (smaller) ones for clients, and they can take three or four hours of labor for me. Doing one that size would take special equipment and workspace I just don’t have.
Here’s the first volume in the set, in gorgeous hand-bound red calfskin:
And here’s the dedication page, along with the facing colophon:
The calligraphy for the dedication page was done by Diane M. von Arx, who was part of the team which worked on the St John’s Bible. If you look closely, you can see some of how I mounted the dedication pages: in the gutter there’s a slight discoloration from the Japanese Kozo tissue paper. The process of mounting the pages was easy: first mount the Kozo strip along the back of the dedication page, then allow to dry under restraint overnight; the next day, position the page and then paste out the Kozo ‘tab’, and secure it to the facing page and again allow to dry under restraint. This kind of mounting allows for a very natural movement of the page, as though it was part of the original binding, with minimal chance of the additional bulk of a page causing long-term problems. I also had to trim each dedication page to the specific dimensions of each respective book (they vary by a couple of millimeters — no surprise, given the size of the things and the fact that they were bound by hand).
And here are some additional images from the books, again available in full scale:
A fun project.
Jim Downey
If you are interested in supporting conservation work at Special Collections and Rare Books at the University of Missouri, here is their “Adopt a Book” page. And if you might be interested in sponsoring the last of the seven volumes of the St John’s Bible, you can contact MU Libraries Director of Development, Matt Gaunt.
Filed under: Architecture, Civil Rights, Privacy, Religion, Science Fiction, The Prisoner, Travel, Wales, Weather | Tags: 12th century, B&B, Black Lion pub, blogging, Caernarfon, Criccieth Castle, jim downey, Llŷn Peninsula, Portmeirion, privacy, Science Fiction, St Beuno, St. Cybi's Well, The Anglesey Arms, The Prisoner, travel, TV, Wales, Wikipedia, writing
Part 1. Part 2. Part 3. Part 4. Part 5. Part 6. Part 7. Part 8. Part 9.
Took this the next morning at breakfast in the Black Lion pub, just had to share it:
While we’d had exceptionally nice weather through most of our trip, the next day we woke to more low-hanging clouds, light rain, and mist. In other words, characteristically Welsh weather.
We next had an Air B&B up outside of Caernarfon. Charming place. Lots of character. Bit too much for my tastes, actually. Would have been fine if I were a grad student again, but I’ve now come to like more luxury when on vacation. Like a bed which isn’t a foot off the floor. A bathroom which isn’t down the hall, up some stairs, then down another hall. And a door which *doesn’t* lock from outside the room. It made me … uncomfortable. At least the host was pleasant, though in a way which a murder mystery writer might describe. Yes, I have an over-active imagination, but still. We stayed the one night, but high-tailed it to a conventional holiday hotel elsewhere in the area the next day.
But before we went there, we took a trip south to pay homage to Number 6. Yup, we went to Portmeirion:

“Rover! Here boy!”

OK, this is hard to make out. But there in the middle of the image is a modern security camera. Given how Portmeirion was used as the setting for The Prisoner, with it’s all-encompassing monitoring, I just thought it a bit ironic to actually see this.
After a nice afternoon in Portmeirion we went up to Caernarfon and strolled around a bit. I was surprised at just how much the city shuts down at the end of the business day — they really roll up the sidewalks.
But there was still one pub going strong, at least: The Anglesey Arms.
Where we saw this. I thought the paint job would appeal to a number of my friends.
The next morning we decided to go out onto the Llŷn Peninsula, first going to Criccieth Castle. Here’s the description of Criccieth from St Cybi’s Well — see if you think it fits with the image from Castle Wales below.
Darnell went across to the exit into the castle grounds proper. The path turned left, then right into a copse of trees. When he emerged from these, the massive gatehouse seemed to loom directly overhead. The path cut up the hill at an angle on the north side, climbing steeply, then switched back before coming around to the front of the gatehouse. There was little doubt that when the castle was in operation, taking this path would mean that any attackers would be under constant fire from arrows, bolts, and heavy stones coming from the walls and the outer gatehouse. Trying to go straight up the hillside would have been even worse, because while it was a shorter path, it was much more precarious footing, and still under direct fire from the outer gatehouse tower and curtain wall.
And of course, if you made it past the outer gatehouse, then you had to contend with the huge inner gatehouse, a massive structure of twin D-shaped towers sporting a delightful array of arrow loops and murder holes.
Do go and check out the castle itself: it’s damned impressive, even in its ruined state. And the lump of hill it sits on is a stunning site, with fantastic views of the town and country around:
From Criccieth, we did some exploring on the peninsula, then thought to go find a small church we had heard about from friends years before. This is St Beuno’s at Pistyll, on the north shore, and its so small that it doesn’t even have a Wikipedia entry:
St Beuno’s is a 12th century structure, though it has seen some updates and repairs over time. Still, it’s largely intact, and feels like it both inside and out:

If you look carefully, you can see the holes in the rafters for where thatch was held in place. The slate roof is only about 100 years old.
I love these two pans of moss & stone in the window ledges, an old tradition related to Easter:
Outside:

The narrow window is called a “Leper’s squint”, where those who were not permitted inside the church could witness mass.
And around:
Lovely.
Jim Downey
Filed under: Religion, Science, Science Fiction, Travel, Wales, Writing stuff | Tags: art, Black Lion pub, blogging, CADW, Capel Soar y Mynydd, Cenlisinus stone, Church of Saint David, Cilgerran Castle, Dallas Dumelus stone, Elenydd, jim downey, Ogham stone, Pontrhydfendigaid, Say Something In Welsh, science, Science Fiction, St. Cybi's Well, Strata Florida, travel, Wikipedia, writing
Part 1. Part 2. Part 3. Part 4. Part 5. Part 6. Part 7. Part 8.
We were going to head north, to meet up with another of Martha’s friends from the online Welsh language community. But we decided to explore a bit along the way. Exploring, we discovered a castle we hadn’t visited previously: Cilgerran.
Here’s the nice image/intro discription from CADW:
This beautifully located castle has a romantic air. The coracle, a one-person boat native to these parts, has a history dating back thousands of years. Cilgerran Castle, which overlooks the Teifi, a river favoured by the peculiar vessel, isn’t doing too badly either. Almost 800 years young and counting.Take the wall-walk to truly appreciate why it was built here. Stunning location. Perfect for stunning attackers. The Normans first saw the potential and established an early ‘ringwork’ castle here, but the imposing masonry castle we see today was probably the work of William Marshal, earl of Pembroke.
It really is an impressive structure, and we enjoyed poking around it for a good while.

The walls were surprisingly thick — about 10′. Which is about half again what you normally see in castles of this age.
Definitely glad that we stopped to check it out.
Martha’s friend Huw lives outside Aberystwyth, and we took a room at the Black Lion pub in nearby Pontrhydfendigaid. He met us there, and we went over to Strata Florida, another Cistercian abbey which played a very important role in Welsh history, and was a major center of learning. It also plays an important role in St Cybi’s Well, with one of the chapters titled with the name. Here’s a bit of that:
He led Darnell through the gateway, onto the smooth green lawn which once had been the floor of the abbey church. To the left and right were the foundations of the original walls, less than a half meter tall, and somewhat wider than that. Beyond those were the remains of the exterior walls of the north and south aisles. Looking down the long nave, and across to the far wall of the north transept, Darnell saw a small group of people before a large slate sign. From his previous visits, he knew that this was a marker dedicated to a famous Welsh medieval poet who was buried on the grounds.
This was familiar ground, ground he had walked before. And yet, for the first time he felt something different. It was an echo of that resonance he had felt at St David’s Cathedral, of the shimmering energy of Stonehenge. Something deep. Powerful. Old.
Whether the ground was so imbued with this strange … energy … before the monks had chosen this spot for their abbey, or whether the energy was the effect of hundreds of years of worship on the location, he didn’t know. But there was something there which touched him, which opened a door he had only recently come to realize even existed.
It really does have a special feel. See for yourself (first image is from Wikipedia):
From Strata Florida, Huw took us up into Elenydd, the so-called ‘green desert of Wales’. It’s an upland plateau, a wild and largely empty place. And it is beautiful in its starkness, particularly with the clouds hanging less than 100′ above us:
Huw had one more treat in store for us that afternoon: the Church of Saint David at Llanddewi Brefi. While most of the current structure dates to the 19th century, the central tower is clearly 12th century:
The interior of the church:
But what is most impressive are the Ogham stones, probably dating back to the 6th century:
The next day the low-hanging clouds which had been threatening rain delivered on their threat. It was a good day for driving again in the Green Desert, with a visit to “the most remote chapel in all Wales”, Capel Soar y mynydd:
And while the chapel may be remote, they’re up with the times:
Jim Downey
Filed under: Religion, Science Fiction, Travel, Wales | Tags: Ash Farm Country House, blogging, jim downey, narrowboats, Pontcysyllte Aqueduct, Science Fiction, St. Cybi's Well, The Swan with Two Nicks, Thomas Telford, travel, Valle Crucis Abbey, video, Wales, Wikipedia
Part 1. Part 2. Part 3. Part 4. Part 5. Part 6.
It was the last day for my sister and her family, so we decided to hit a couple of interesting places on our way from Dolgellau to Manchester, where we had a B&B for the night.
First was Valle Crucis Abbey, outside of Llangollen. Valle Crucis is another of the big Cistercian abbeys, and one of the best preserved, giving you a chance to walk through and really get a feel for what it must have been like to live in:
It’s a cool place.
Next up was the Pontcysyllte Aqueduct outside of the town of Llangollen.
Most Americans know very little of the early industrial revolution in Great Britain, and the role which the early canal system played in helping launch that fundamental societal change. Prior to the development of railroads, canals were crucial for moving goods and materials in the UK. And Thomas Telford was one of the greatest civil engineers of the era, who helped to construct the network of canals.
The canals no longer play a critical role in the economy of the UK, but they have become a popular holiday destination, and people often take tours on narrowboats or even rent them as a short-stay vacation home. Narrowboats like these:
After walking across the aqueduct, we decided to take a ride on one of the narrowboats from “Jones the Boats.” We got tickets, then went and had a nice lunch at the Telford Inn while we waited for our turn.
The trip back and forth across the aqueduct takes about 45 minutes, and the views over the Dee River (the river is some 125′ below) are quite lovely:
Note the lack of any kind of rail or ledge on the one side. And the edge of the trough is only about 6″ up out of the water. You can hang right over the edge of it if you want.
Everyone seemed to enjoy it.
I certainly did. And I could see doing a couple days on one of the fancy narrowboats.
After the aqueduct we continued on to Manchester. Our B&B (which we’ve used on previous trips) was a charming place: Ash Farm Country House. After getting settled in, we popped next door to a fantastic gastro-pub for dinner and some real ale: The Swan with Two Nicks.
It was a great way to close out the portion of the trip which Celeste, Steven, and Haley shared with us. The next morning we dropped them off at the airport, and Martha and I headed back into Wales.
Jim Downey
Filed under: Religion, Science Fiction, Travel, Wales | Tags: blogging, Cader Idris, CADW, Castell-y-Bere, Castle Wales, Cistercian, Cymer Abbey, Dolgellau, Hafod Eryri, jim downey, Minffordd Path, Rhyd Ddu, Science Fiction, Snowdon, St. Cybi's Well, travel, Tŷ Te Cadair Tea Room, Wales, Wikipedia, Yr Wyddfa
Part 1. Part 2. Part 3. Part 4. Part 5.
Some years back my wife Martha and I climbed Snowdon. This trip, my brother-in-law Steven and niece Haley decided that they wanted to do it. But being somewhat more into hiking than I ever was, they wanted to try a more adventurous path than we used, and consulted with an outdoors shop owner in Dolgellau they had made friends with to see what he recommended. After discussion, they decided on the Rhyd Ddu Path, which they were told would take between 2:30 and 3:00 hours for hikers in good shape to do.
So after keeping an eye on the weather, they decided to tackle it on Thursday morning of our second week in Wales. We dropped them off at the trailhead in the small town of Rhyd Ddu:
My sister Celeste, Martha, and I took a leisurely drive over to Llanberis, where we’d arranged to take the Snowdon Mountain Railway (SMR) up Yr Wyddfa. The timing on this was a little tricky: your ticket for up and back only allows a 30 minute stay on top of the mountain. And our plan was to meet Steven and Haley there, and to have them get stand-by tickets to take the train back down with us … if there were any. Because there frequently aren’t, and they’re only sold on a ‘as available’ basis. One additional possible complication: even under the best conditions, the weather on top of Snowdon is very changeable, and the SMR will only go to the very top (where the station is) if visibility it clear.
But Steven and Haley were confident that they could do the hike in the time allotted, and if worst came to worst, they could also hike back down and we could then pick them up.
So, we drove to Llanberis, enjoying some sight-seeing along the way:
Well, the plans worked perfectly. Steven and Haley made it to the top of Snowdon in just 2:15, and got their names on the top of the stand-by list. The train made it all the way to the top, where we joined them at the Hafod Eryri, the station/visitor’s center which was new since the last time I had been to the top.

The path heading up from the lake is the Miner’s Path, which Martha and I climbed previously. The one above it is the PYG Track, which is the way we went back down.
Yeah, it’s that wonderful. You should go sometime.
One the way back to the cottage we stopped at Cymer Abbey, just outside Dolgellau. Cymer is a late 12th century Cistercian ruins, but still quite charming:
The next day we decided to visit one of my very favorite places in Wales: Castell-y-Bere. It’s one of the native Welsh castles, dating back to about 1220, and was brilliantly designed to take advantage of the natural features of the site, as can be seen in this image of the ruins on CADW’s site:
You can see a rendering of what the castle may have looked like in the information plaque there at Castell-y-Bere:
And here are more images from our visit, but I would also recommend the Castle Wales entry.
After a nice long visit at Castell-y-Bere, we stopped off at the entrance to the Minffordd Path up to the summit of Cadair Idris and had a pleasant late lunch at the Tŷ Te Cadair Tea Room. I love this tree-shaded little road leading up to it:
It was a good day.
Jim Downey
Filed under: Faith healing, Religion, Science, Science Fiction, Travel, Wales, Writing stuff | Tags: architecture, blogging, CADW, Caernarfon, Communion of Dreams, jim downey, Llanrhaeadr-ym-Mochnant, lych gate, movies, Pennant Melangell, photography, Pistyll Rhaeadr, rood screen, science, Science Fiction, St. Cybi's Well, Tanat, travel, video, Wales, Wikipedia, writing
Part 1. Part 2. Part 3. Part 4.
“Water and old stone” pretty much sums up Wales, for me, I think. But I have an admittedly biased perspective.
We started the next morning with a trip to Pennant Melangell, a small pilgrimage church in the Tanat valley in north Wales. Here’s the preamble I use in the first chapter of St Cybi’s Well, which is titled ‘Pennant Melangell’:
Melangell was a female saint of the 7th century. According to tradition she came here from Ireland and lived as a hermit in the valley. One day Brochwel, Prince of Powys, was hunting and pursued a hare which took refuge under Melangell’s cloak. The Prince’s hounds fled, and he was moved by her courage and sanctity. He gave her the valley as a place of sanctuary, and Melangell became Abbess of a small religious community. After her death her memory continued to be honoured, and Pennant Melangell has been a place of pilgrimage for many centuries. Melangell remains the patron saint of hares.
– St Melangell’s Church website
It’s a wonderful little place.
Here’s the entrance to the churchyard, with the classic lych gate:

The 15th century rood screen.

Back of the tympanum, containing a plaster panel with The Lord’s Prayer and Ten Commandments, all in Welsh.
In the churchyard:
I love this place. Maybe it shows:
We got some lunch in the charming little town of Llanrhaeadr-ym-Mochnant (where parts of this favorite movie was shot), then went to visit Pistyll Rhaeadr, one of the “seven natural wonders of Wales.” The waterfall is mentioned in Communion of Dreams, and one of the major chapters of St Cybi’s Well is titled ‘Pistyll Rhaeadr’. Here it is:
I did the same:
Here’s a description of the top of the falls, taken from St Cybi’s Well:
As he came around past the rock outcrop, the sound from the falls increased. There was the distant rumble from the bottom of the first long drop, but closer now were the sounds of water scrambling over rock and root, gathering in the small pools at the top before the plunge. Darnell made his way to the last of these pools, near the edge of the cliff, and stood there, listening.
He closed his eyes, took a deep breath, and relaxed, opening himself as he had tried to do at St Cybi’s and St Seiriol’s, allowing rather than reaching, feeling rather than thinking.
And he felt something. A whisper in his mind. A whisper as though someone were speaking his name. A whisper of invitation, to step through the wind and over the edge of the cliff, to come to freedom. It was a beckoning, a subtle and supple call to pass through to the other side.
This was the thinness Megan spoke of. He understood it now, at least a little.
Releasing the breath, he slowly opened his eyes, then knelt down to the pool in front of him. The silver-grey sky reflected in the pool had a new shimmer to it, an intensity he had not seen before. He reached out, as he had done before, and placed the palm of his hand against the surface of the water.
There was no slight electric thrill, but neither was there just the crisp coldness of a mountain stream. Rather, there was a vibrancy, almost a … depth … there, more than the few inches of water in the pool would suggest. And while the roar of the falls to his left called loudly, it was the trickle of water coming from his right which whispered to him. He stood, and followed it further up the mountain.
After hiking back down to the base of the falls, we enjoyed a snack in the little tea shop, then headed back to our cottage. The magic of the day continued, as we watched clouds form midway down the mountain:
The next day we decided to visit Caernarfon castle, the massive fortress in the north Wales town of the same name. This one:
And from displays inside one of the main towers:
Time enjoying the castle was followed up with lunch on the castle square:
That afternoon, we went to St Cybi’s Well, itself:
Jim Downey