Communion Of Dreams


Machado-Joseph Disease: oops.

As I’ve mentioned, I’m in a long-term project to repair and repaint our 1883 historic home. Most days I put in several hours of work on it, according to what my symptoms allow.

The pic above was from yesterday, just as I was getting to work on painting the ceiling of our large carport. The six-foot stepladder is sufficient for this chore, though not ideal — I need to hold onto the roller pan or paint bucket while I work above my head. Well, just as I was getting started, I went up the ladder … and promptly dropped the roller pan. It just slipped out of my hand.

Now, like everyone, I’m occasionally clumsy. Always have been. And I’ve made bigger messes than that shown.

But in the past, my clumsiness has always been related to some other factor. I was distracted. Or I was doing something I knew was marginally safe/balanced. I’d drank too much. I had a migraine. I hadn’t slept. Et cetera.

Not this time. I felt fine. I’d had a good morning, getting in my walk and exercises. I’d had breakfast, and was sufficiently caffeinated. I’d set up everything properly to paint, and the ladder was stable. There were no unusual or unpredictable factors at play.

Except MJD.

And that was enough. My hand … just let go.

As I picked up the roller and tray, and cleaned up the mess, I was pissed off. And feeling very, very fragile. It was a rude reminder that I have a disease I can’t control. All I can do is manage the symptoms to the best of my ability.

In the end, it was just an hour or so delay before I got to painting. And a lesson in not taking things for granted I have always taken for granted.

Jim Downey



Machado-Joseph Disease: Not Dead Yet*.

So, I got the genetic test results today: I have a mild version of MJD.

That’s not an official diagnosis. I probably won’t have that until sometime next year, after I have different insurance (Medicare) and can find a local Neurologist to work with. Because I won’t go back in to the Neurology Clinic at the local large-institution university hospital which shall remain nameless, for reasons outlined previously. And because they didn’t bother to send me the results — which they have had for over a month — until I called them up. And they’re supposed to post all such results to the ‘patient portal’ within two days of getting them. Grrr.

But the results are clear. And since there is little or nothing that modern medicine can do for me that I’m not already doing, I’m happy to just wait.

Knowing the results makes a difference. And while it’s not good news, it could certainly be worse. I know what is going on, and what to expect. Thanks to my sister’s experience, and the experience of my other family members, I know most of the best strategies to manage the disease. Because of my age of onset (about 4 years ago, I think, so about 60 years old), and the type I have, I should experience a normal lifespan and slowly progressing symptoms. I can plan and work with this information.

I intend to continue to write about this, but those posts will probably be just occasional updates when I feel like I have something interesting to say.

Thank you for your good thoughts and support — it’s helped me these past months while I have navigated this experience.

Jim Downey

* https://www.youtube.com/watch?v=Jdf5EXo6I68



Machado-Joseph Disease: ∞

Eight weeks.

8

Which, on its side, helpfully looks like the infinity symbol: ∞.

Because while it’s been eight weeks since my blood sample was drawn for the genetic testing for MJD, it feels like I’ve been waiting an eternity for the results.

Of course, it took a full month for the Neurology Clinic at the local large-institution university hospital which shall remain nameless to order the test.

And I waited two months before that to get in to see those neurologists, because I thought I needed a referral.

And I waited three months before that in order to get in to see my GP in order to explain why I wanted the referral.

Yeah, count back, and that means I have been waiting all this year in order to get a diagnosis for the disease I’m reasonably certain I have. Little wonder that NORD (the National Organization of Rare Diseases) says that typically, a correct diagnosis for someone with a rare disease (such as MJD) will take upwards of five years. I’m already most of a year in, and I even KNOW the disease actually runs in my family. Imagine what it would be like if it was just a random mystery disease, and we had to start from scratch to determine what was going on.

>sigh<

Yes, it’s frustrating. Friends and family keep asking (just being supportive, not annoying), and I keep telling them the same thing: no results yet.

Meanwhile, I continue to just deal with the symptoms as best I can. And things do continue to evolve. Balance issues are now fairly routine. Hand & feet pain and Restless Leg/Arm Syndrome less so, but seem to be happening more often. And I’ve started to experience occasional vision difficulties (focus/double vision problems) that I can usually ‘reset’ by changing my point of focus to something far away, then shift back to a closer item. It’s not an actual double image, but rather the sort of thing you experience when trying to look through the wrong part of progressive lenses, then shift your vision so things slide back into focus.

The good news is that the MMJ does help most of these symptoms quickly, and I have cut my mild opioid intake by about 50% since I figured out what worked for me.

Meanwhile, I wait. I check to see whether the results have been posted to my account on the diagnostics site or my patient portal for the local large-institution university hospital which shall remain nameless. And I get on with life.

While waiting.

Jim Downey



Machado-Joseph Disease: I’m W A I T I N G !

Tomorrow will be five weeks since the blood draw for my MJD genetic test.

I just checked (for the fifth time so far today), and neither my patient portal for the Neurology Clinic at the local large-institution university hospital which shall remain nameless now the diagnostics lab that handled the test has results back yet.

>sigh<

I don’t really have much to say that I didn’t say two weeks ago in this post, other than the fact that it’s been two more weeks of waiting. Everything there still applies.

But I wanted to whine a bit.

Not that it will do any good, other than allowing me to vent my spleen.

Which sometimes is enough.

Barely.

Jim Downey



Machado-Joseph Disease: three weeks.

It’s now been three weeks since my blood samples got to the testing lab to do the genetic test for MJD.

And I’ve just checked, for the fourth or fifth time today, to see whether the results have been posted to my account on the diagnostics site. They haven’t.

I’ll check a few more times today. And though it’s unlikely that the results would be updated over the weekend, I’ll probably check several more times tomorrow and again on Sunday.

Not that I’m obsessing, or anything.

No, really.

It’s just that in an era when I have literally a dozen 15-minute tests for Covid in my bathroom, when a standard blood panel workup will be done in a couple of days, and when almost any other test results I can think of would be available in a week or so, waiting three weeks seems … excessive.

NORD (the National Organization of Rare Diseases) says that typically, a correct diagnosis for someone with a rare disease (such as MJD) will take upwards of five years. So I suppose I should just consider myself lucky that I know what to look for, and to have the resources to push for the test and get it ordered. A few weeks of waiting for the results are, in the big picture, a minor annoyance. But still, it *is* an annoyance.

Several friends have asked me what the next step is, once I get the results.

That depends on what the results are, of course.

If the genetic test shows that I fall in the zone of either possibly developing MJD (an intermediate number of CAG nucleotide repeats in the relevant DNA segment) or over the threshold considered to be definitive for MJD, then I’ll find a local neurologist who will be willing to work with me to monitor and manage the disease. No, there’s no way in hell I’m going back to the Neurology Clinic for the local large-institution university hospital which shall remain nameless, if I can avoid it.

If the test comes back and rules out MJD (I consider this unlikely, but it is possible), then I need to think about what to do. I just turned 64, so a year from now I’ll qualify for Medicare, and it might make sense to just wait until I have that before starting a series of additional neurological tests. Particularly since if I don’t have MJD, there’s really only one other thing that would explain my symptoms over the last year: CTE. That’s a diagnosis that can only be made during an autopsy, and I’m not ready for THAT test just yet, thanks.

Either way, I’ll probably continue to just manage my symptoms as best as I can, and get on with life. I’ve now experimented with enough different MMJ products to have a handle on what helps and what doesn’t, related to method of ingestion and dosage. Turns out that smoking/vaping has little or no benefit for me in dosages low enough to not trigger all my MJD symptoms, but both tinctures and edibles do have some therapeutic benefits. Small dosage edibles help me sleep longer, with less use of opioid Rx meds. And a mild dosage of tincture seems to very quickly stop Restless Leg/Arm Syndrome (as a friend said, most people don’t understand just how miserable RLS can be). Just figuring out these two things has made a significant difference in my day-to-day life already. And my balance & flexibility exercises continue to help with those issues.

Just checked: still no results posted.

>sigh<

Jim Downey



Machado-Joseph Disease: I ain’t no wizard.

“Your love of the halflings’ leaf has slowed your mind.”

— Saruman, to Gandalf. The Lord of the Rings movie.

As I mentioned in my last post:

One of the problems that the industry has (at least in terms of medical use) is that the effects of cannabis are so varied, and standards so inconsistent, that pretty much the universal advice to new users is “just try a bunch of different things at small doses to figure out what works for you”.

So, following this standard advice, when I went to the dispensary for the first time I got a variety of different products. Tincture, edibles, flower, and a couple of pre-rolled joints. The tincture and edibles both have proven promising in my testing, taking the edge off my pain and other symptoms and helping me to sleep better. Last evening before dinner for the first time I tried to smoke some of the stuff taken from a pre-roll, so I could measure it out and be a little more careful about dosage than just lighting up a joint.

I measured out a modest amount, and put it in a glass pipe I’d also picked up. Standard little spoon-style, with a ‘carb‘ (hole on the side that controls airflow). I lit the bowl, drew the smoke into the chamber, and released the carb — and took a deep hit.

The smoke filled my lungs. And immediately I about coughed my lungs out. Hacking, spitting, coughing, tears, the whole 9 yards. Pathetic. But hey, I haven’t actually tried to smoke anything in what … four decades? But clearly, I ain’t no wizard. And I was overly generous in how much to put in the bowl.

Anyway, I went back inside after I recovered sufficiently, and sat down before the effects slammed into me. Good thing, because I was just about useless for the next twenty or thirty minutes. It wasn’t just the high, which I expected. It was also the way it seemed to suddenly multiply all the MJD symptoms I usually experience: vertigo, shaking hands, deep tremors in legs, shooting pain in the arms and feet, difficulty in eye-hand coordination, everything. All at once. About ten times worse than the usual symptoms.

I texted Martha and told her that she needed to take over dinner, that I just needed to sit and ride out the effects for an hour or so. I wasn’t worried; taking psychedelics long ago taught me how to just let the trip unfold without fighting it. The effects backed off and in an hour or so I was functional enough to get up and get some dinner, go into the living room and watch some TV while we ate. The effects then dropped off fairly completely after about four hours.

The worst thing, though? It didn’t do a damn thing for my pain. Oh well.

One strain down, others to try. But only after I get a small vape to allow me to control dosage even better, and take some of the edge off the raw smoke. Live and learn.

Jim Downey



Machado-Joseph Disease: Livin’ outside the norms.

This is going to be a hard post to write. It might be a hard post to read. In part because I’m probably going to come across as a pompous ass to at least some extent. And in part because it’s not yet resolved, so I don’t know where the story goes from here.

But when I made the decision to start writing about this experience, I told myself that I would be honest about it, the same way I was honest about the care-giving experience, however painful or embarrassing it might be. I know that honesty has helped other care-givers; I hope this honesty helps people who may be facing a diagnosis of ataxia or some similar condition, or who have struggled to get the medical care they need.

Yesterday I had my long-awaited neurological assessment at the local large-institution university hospital which shall remain nameless. I’ve mostly avoided medical care within this institution in the 30 years I’ve lived here. Oh, they have a solid reputation, and do a great deal of good both for the community and for medical science. But I had worked for five years at the large-institution university hospital where I went to grad school, and knew all too well what “Big Medicine” is like. That experience taught me that whenever possible, I should stick with independent doctors/medical groups, where there was less chance that I would be treated as a medical file and more chance that I would be treated as a person with a medical concern.

However, with something as rare as Machado-Joseph, I wanted to tap into the best pool of talent/knowledge I could. And that meant at least starting with the local large-institution university hospital system.

The assessment started out well enough, though I felt poorly from lack of sleep the previous couple of nights. The Intern Doctor came in, introduced himself, went over my file info with me, confirmed that I had been referred by my primary care doctor for an assessment for MJD. He then asked me why I thought I was experiencing the onset of the disease. I started by saying that I was a conservator of rare books and documents, so tended to be hyper-aware of how my hands functioned. This didn’t seem to register as anything different than if I told him I mowed lawns or something for a living.

About five weeks ago I wrote this:

I’ve never really defined myself in terms of my job, but it has always been one of the interesting things about me. Conservators are so rare that it’s always a talking point when I introduce myself to someone; they always ask about what sorts of things I work on, what’s the oldest/rarest/most valuable item, et cetera. Even surgeons, who seldom suffer from a self-esteem deficit, will pause and with a note of respect ask how I got into such a profession.

So … well, I was surprised at his lack of reaction. I then told him that I had been a highly accomplished martial artist and athlete in my 20s & 30, with exceptional reflexes, sense of balance, and eye-hand coordination. Again, he took this in stride, as though I’d just told him I played Little League Softball. I explained that I’d always had a heightened awareness of my body, and invariably knew when there was something wrong with it. As an example I told him about my experience with detecting a subtle problem with my heart, finding out that I had a congenital defect, and having the stents put in … when almost no one else would have noticed a problem (and, in fact, nothing has shown up in routine physical exams). Again, he nodded, as though I told him I’d once diagnosed a hangnail. Then he shuffled his papers and said, “Well, let’s do some tests, shall we?’

He ran me through a bunch of tests, checking balance, reflexes, body sense perception, eye tracking, hearing perception, hand movements, and a variety of other things I was unfamiliar with. I was shocked at how poorly I did at a number of these, even being aware that I had been having problems with some of them for months. When we finished, we sat down again, he looked over his notes and then back at me and said, “well, almost all of your tests are within normal parameters, and the ones that aren’t aren’t *that* bad. Are you sure you’re having a problem?”

I must’ve looked like an idiot. Lord knows I felt like one, sitting there, mouth agape. When I finally shook off the shock, I said “well, yeah. I have these pains, frequent urination, these tremors, hand spasms, etc etc etc …” and I ran through the list. Again.

He frowned, looked over my information again. “Well, I see you drink a lot*. That can cause problems. I think we should run some labs, maybe do an MRI. We can also do the genetic test for MJD, if insurance approves that. But I don’t think you have a big problem. Let me go consult with my Attending Physician, see what he says.”

Time passed. I was … bewildered. I honestly had not expected things to go like this. What was so OBVIOUS to me in terms of my changing abilities (and which my wife has likewise noticed), seemed … normal? I felt a little stunned. Well, more than a little, to be honest. I felt completely adrift.

A tap on the door, then the Attending Physician entered, followed by the Intern. It was NOT the Attending Physician I had been expecting. Evidently, something had come up, so this other person was handling cases today. He introduced himself. He was polite, and going off what the intern had told him, he started out the same way, asking why I thought there was a problem. I said that I knew there was a problem with how my hands were functioning because I’d been a conservator for 30 years, and losing control of my tools suddenly was not normal. That got his attention. I also explained that with my family history of MJD, both my sister and uncle had experienced very similar onset symptoms, etc etc.

He said that he’d had experience with MJD patients at a hospital back East where there was a large Portuguese population, and asked if I knew there was a Portuguese connection in my family. (Machado-Joseph is also known as Azorean Disease due to the high frequency in that population … but it is well known to occur in unrelated populations around the world.) I told him not to my knowledge. He then said that I “didn’t have the look” of someone with MJD. Meaning, I suppose, that I didn’t have the narrow face and protuberant dark eyes that many people (including my aunt and cousin) have. But neither my sister nor my uncle have/had those characteristics.

But he said that they’d put in for the genetic test, and that they’d get me a prescription for a beta-blocker to help with the hand tremors. Oh, and he chided me for drinking 2-3 scotches each night. Told me to cut back to just one. With that, he was out the door.

The Intern sat down, started making notes on the computer. He explained that they wanted me to have my B-12 levels checked with a blood test, just to be on the safe side, and instructed me where to go in the hospital complex to get that done. He confirmed which pharmacy I wanted to use for the beta-blocker. And he told me that he was leaving at the end of the month (next week), but that someone else would be in touch if they saw a problem with my labs or needed info for the genetic test. Otherwise, I’d probably be sent info from the hospital about how to have the genetic test done, where, and when.

Then, politely, he showed us out.

We went over and got the blood draw done. My mind seemed to slowly be coming back online as we walked, parts and pieces of the whole session coming back to me and starting to integrate. I was discussing it with my wife, who confirmed my recollections and understanding of what we’d just been through. But I felt completely bewildered and full of self-doubt when we got home. I wrote my sister and a couple of close friends, explained briefly what had just transpired.

* * *

Last night I took extra pain meds, crashed early, and got a decent night’s sleep. This morning I woke to an email response from my sister. We’re close, and she is fiercely loyal & loving. The email was furious that I’d had the experience I’d had, at least in part because she had almost the exact same thing happen to her some fifteen years ago when she first started experiencing the onset of MJD.

After thinking it all through again this morning, and in writing this, I’ve set aside the self-doubt. I know what I’ve experienced. I may or may not have MJD, that will likely only be determined by the genetic test. But I know that my balance has been compromised, that I have been experiencing a wide range of symptoms that point at MJD onset. Perhaps it is a mild case (I think this is most likely) and hopefully will progress slowly. But even in the last six months since I first noticed the symptoms, things have gotten worse.

And this is why I decided to write about this at such length. Because if I, a very privileged, highly educated, white, middle class professional man can be subject to such dismissal of a medical complaint, then I can only imagine how others without such advantages must fight for proper care.

This will not come as news to many people who are less privileged, or who exist at the margins of our society. Actually, it wasn’t news to me, either. But I thought it might prompt others to perhaps give it another thought.

Jim Downey

* As noted a month or so ago:

I’ve also noticed an uptick in the amount of alcohol I’m drinking. Self-medicating, in other words. Again, this does tend to cycle, with some times of the year it being a little higher (2-3 double Scotches in the evening) and other times lower (just 1 double, occasionally 2). Years ago I stopped worrying about it, after discussing it with my doctor, because she observed that it was probably healthier for me than increasing my use of even mild opioids (the Tramadol and codeine), so long as I didn’t develop an alcohol problem.



Machado-Joseph Disease: wabi-sabi

“Jim Downey was a noted book artist, conservator, and author who, at the height of his skills, was betrayed by his body with the onset of Machado-Joseph Disease in his early 60s …”

That could be the opening line of my obituary some (hopefully many!) years hence. Or perhaps a change to my Wikipedia entry.

But the thing is, I don’t feel betrayed by my body. Not in the least.

Yes, I likely have MJD. And yes, it has started to cause me physical difficulties in accomplishing things, as well as additional pain, as I have been outlining here on the blog.

But we all live with limitations. Of strength. Of endurance. Of skill. Of intellect.

I can’t fly like a bird. Should I say that I am therefore ‘betrayed’ by my body? Of course not.

I can’t think as rapidly or as clearly as I could when I was, say, 40. Again, that’s not a betrayal. That’s just change that comes with being a normal human. Of living a normal life.

There’s a Japanese concept of wabi-sabi that informs a traditional aesthetic common in the culture. It has roots in Zen Buddhism, which I studied and tried to embrace as a young man. It can be a difficult concept to explain, but concerns an appreciation for that which is imperfect and/or impermanent in nature and beauty, as all life is imperfect and impermanent. A classic example of wabi-sabi is an elegant teacup which has a flaw (perhaps broken accidentally), but made more beautiful by the application of a gold filling to repair the cup and make it functional again. It is an understanding that all things can only be fully appreciated by respecting their limitations, and that experiencing the thing in the moment, as it is, with all the flaws it has.

As I noted a couple of months ago, I’ve been working to finish the leather-bound edition of St Cybi’s Well. Though this has been complicated by the onset of MJD, I’m almost finished with the edition of 14 books. As I was working to “turn in” (the process of folding the leather around the edges of the bookboard for the cover) the covering leather on one of the first of these books, I made a mistake. My hand slipped. And the tool I was using, my favorite thin bone folder, marred the cover.

Dammit.

I took a deep breath, finished what I was doing, and set the cover aside to think about it later. When these things happen, the >worst< thing you can do is panic and over-react. A lot of times if you just leave it be and revisit it later, you can usually mitigate the damage with a little careful pressure, or extra moisture, or one of several other techniques.

I turned my attention to the next cover.

And as I was finishing that one, almost the exact same thing happened. Not in the same place, but a similar, though worse, tool mark. Like this:

Gawddammit.

We all make mistakes. “It’s inherent in hand process”, as is commonly said by artisans. But making two very similar such errors?

That was likely thanks to MJD symptoms. Which I had been working through.

I quit for the day.

And as I thought about what it meant, I had to consider how I thought about myself, and my art. I am now an artist/artisan who has this additional limitation, this new part of who and what I am. Allowing that to be reflected in my art — indeed, embracing it — was the only honest thing I could do.

It was time for a little wabi-sabi.

So I did this:

A little gold leaf, to embrace the imperfection.

In fact, I added a wabi-sabi element to each of the 14 books. Because I made more mistakes as I finished the edition. Not all of them had tool marring, but many did (and, curiously, all along the top edge of the covers). I decided that for the edition to be complete, for it to reflect this particular moment in time, each needed to have a similar flaw/enhancement, though each one is unique.

Here they all are:

As a conservator, I can’t afford to celebrate my mistakes. There will of necessity come a time when I need to stop doing conservation work, out of respect for the items entrusted to my care. That time is rapidly approaching; indeed, it may already be here. I’ll know more after my neurological assessment tomorrow.

As an artist, I’d be a fool deny my mistakes. Because denying them would be to deny myself, and what has brought me to this point in time. This particular, wonderful, moment.

Jim Downey



At long last …

It’s been five years since I last wrote about my efforts to come up with a satisfactory cover design for the premium leather edition of Communion of Dreams. Well, needless to say, a lot has happened since then. Not the least of which was getting, and learning to use, my Glowforge laser.

And now I’ve finally resolved the many different design and execution issues to my satisfaction, to the point where I’m completing the promised leather-backed copies for my Kickstarter supporters. Here it is:

This is going to be a bit about this binding, and how it differs from the hardcover cloth binding.

First thing, the sewing is different. Rather than just being sewn onto linen tapes, the books are sewn onto heavy linen cords:

Why the weird arrangement? So that those cords provide additional texture to the spine of the finished book, along the location of where the tree branches are (see the first pic above). Once the sewing was done, the text blocks were glued up and rounded slightly. All of that was very straight-forward.

However, as noted in that blog post in 2016, the problem I had was trying to achieve the raised texture of the tree for the rest of the cover. I played around with a bunch of different solutions, until I settled on using the laser to cut out a slightly abstracted version of the Burr Oak image:

That’s in the bed of the laser. The material is archival 50pt board. Trying to cut out such an image by hand would take me hours, probably. The laser does it in about four minutes. (Though I did spend some considerable amount of time coding the design so the laser would do it.)

Here’s the image free of the surrounding board:

That is then pasted onto a sheet of paper, and the book cover boards are mounted on the back in the appropriate location. Then it is time to mount the leather, and impress it such that the tree is in relief, with this result:

(Actually, that was a practice piece, not the final version pictured above. But I forgot to take an image of the final version at this stage.)

The edges of the leather are then turned-in, and the corners formed. This gives you a finished case (what bookbinders call the cover).

Next, need to do the titling. And this is where the laser once again comes in very handy, though it took me a while to get just the right technique worked out. After the design for the title is done, the leather is masked and then engraved with the laser to an appropriate depth:

Once that is done, the engraved areas are cleaned of residual charred leather, and gilding size applied:

Once that cures, then it’s time to apply the gold leaf:

Now, that’s real gold, in multiple layers, about $25 worth. This process is different than traditional gilding done by bookbinders, so I had to work up a whole different process to do it (based on my experience with traditional gilding). The result is very satisfactory, though, since I have a much greater range of options for the final design.

Once the titling work was done, it was time to prepare to mount the text block to the case. First, I tear the outer page of the outer signature, and trim the cords to the appropriate length:

This combination, with the two liner tabs, will make for a *very* secure mounting to insure the cover and text block stay together. Then, you fray out the linen cords, so that they will not present excess bulk inside the cover:

Then the whole thing is pasted out and mounted inside the case, similar to how the hardcover cloth bindings were done. Once everything is dry and secure, I added endpapers of hand-marbled paper I made:

Giving the finished product:

I tried a lot of different color combinations, and have decided that this is the one I think works the best (and echoes the original cover nicely). My Kickstarter backers have the option of choosing a different color, but henceforth this will be the only color option available for other collectors.

Next, after finishing these bindings: designing the premium leather binding for St Cybi’s Well.

Jim Downey



Let’s talk economics.

Last week I went through the mechanics of turning words into books. Today I’d like to talk a little bit about the economics of that, as well as being an author.

When I set up the Kickstarter for St Cybi’s Well lo these many years ago, a lot of my estimates in deciding on what goals to shoot for were based on … blind faith, to be perfectly honest.

I’d published Communion of Dreams, and had some sense of the possible income that could generate, as well as the amount of work that went into writing/editing/formatting it. But I really had no idea what the costs would be for printing and hand-binding copies of that book or the yet unwritten St Cybi’s Well. I had a pretty good handle on how much time it would take me to do the hand binding, based on my book conservation work. And likewise, what the cost of materials would be, other than the printing. Now that I’ve gone through all of that with both books, I have a much better idea of how costs break down, so I thought I would share all of that.

Based on 55 copies (edition of 53, plus two author/artist proof copies), the actual out-of-pocket expense runs about $50 per copy for the two different books. That covers the cost of the oversize archival paper (so the grain/drape of the pages is correct for hand binding), the printing, and going to collect the printed pages. It also covers the cost of archival bookboard and cover cloth. (The leather copies are two or three times as much, depending on the actual leather used.) Were I to bind a single copy, it would take me about 2 hours of labor. If I bind multiple copies at a time, that drops to about 1.5 hours of labor. (Leather is about 2x the labor.)

My Kickstarter goal was $17,000. Which succeeded. After deducting the fees paid to Kickstarter, and the costs of the different “rewards/premiums” for the backers, I wound up with about $12,000. Which, truthfully, isn’t a bad advance for a relatively unknown author.

It took me seven years of writing work to finish St Cybi’s Well, rather than the one or two years I originally expected. That was both embarrassing and stressful, since I made promises to people I didn’t fulfill. But it’s over, and everyone seems happy with the end product, so let’s just talk about the amount of labor that went into it. I’d conservatively guesstimate that I have something on the order of 2,000 hours of labor in writing, rewriting, editing, and then composing (the last is mostly thanks to my Good Lady Wife) the book. That *might* be as much as twice as long as it took me to do the same with Communion of Dreams, though spread out over a longer period of time. So, do the math, and I earned about $6 per hour.

That’s just the Kickstarter, of course. Now that the book is done, I’ll continue to earn money on purchases of the downloads, printed paperbacks, and special order hand-bound copies. How much is hard to say. I have had about 40,000 downloads of Communion of Dreams, though a big chunk of those are free downloads. Still, with Amazon’s system, 2/3 of every sale goes to the author (as opposed to like 5-7% for conventional royalties with a publisher), and that adds up. To date, I’ve only had about a thousand downloads of St Cybi’s Well, and most of those have been free downloads. Which has been a little disappointing, but we’ll see how things go over time.

As for the printed paperback copies, there I earn a bit more from Amazon than I would for the downloads, but not a lot. And they don’t amount to very many sales. The signed copies I sell directly do a little better still, but again, that’s just a handful of books per year.

As for the handbound books, there I do make a lot more, about $150 per copy. But my conservation labor is billed at $200 per hour, so at 1.5 hours of labor, I’m making half of what I would professionally. The return on the leather bound copies is even worse.

So, why do it? Why even offer those books on the websites?

Because I enjoy it. I enjoy knowing that the books that I create will be enjoyed, perhaps cherished. Read, and passed down to children and grandchildren. Like most artists, I’m willing to trade some financial reward for that satisfaction, and I can afford to do so. Maybe it shouldn’t be the case, and it wouldn’t be the case ideally, but we do what we can under the circumstances.

Finished product.

Anyway, my books will be available for free download tomorrow (the First of the month, as always). Give ’em a try. If you like ’em, you’re always welcome to either purchase a download or one of the physical copies later, if you can afford to do so. But don’t feel guilty if you can’t; as noted I can afford to give them away, and take joy in knowing people read them.

Jim Downey