Communion Of Dreams


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: testing time

So, late Wednesday FedEx delivered this:

That’s the sample collection kit for the MJD genetic test.

The paperwork included indicated that I could just take it to a local Quest Diagnostics and they would do the blood draw and send the samples off. I made an appointment for the next morning, and did just that. That done, now we just wait for the results. Ideally, I’ll get a copy of the results (I’ve formally requested one, and they should comply, since that’s part of the HIPPA guidelines) and not even have to meet with the Neurologists at the local large-institution university hospital which shall remain nameless. About the very last thing I want to do is deal with those people again. Yes, that experience has continued to annoy me.

And on that point, on one of my recent morning walks (I walk ~3 miles most mornings), I found myself walking with a couple of neighbors for part of the time. They were chatting about healthcare for another neighbor who was recently injured, and the conversation turned to the local large-institution university hospital which shall remain nameless. I mentioned that I’d recently had to deal with the Neurology Clinic there, and they both exclaimed words to this effect: “Oh, Jim, why the hell did you do that to yourself?!?!”

Yeah, the local large-institution university hospital which shall remain nameless has a bit of an image/reputation problem with the locals.

* * *

Late last week I also received my state Medical Marijuana card. I decided to apply for it, as part of my decision to be more active in managing my symptoms, whether they’re due to MJD or something else. Approval was all but certain, since on the ‘chronic pain’ criteria alone I qualified, having been on mild opioids for 10+ years. As I mentioned in one of my early posts about MJD, I’d noticed a persistent uptick in my use of my Rx pain meds (rather than just the occasional up and down variation I see over the months), particularly to aid in sleeping. Symptoms like Restless Leg/Arm Syndrome tend to disrupt my sleep in the early morning hours, contributing to spiraling problems associated with lack of sleep.

So I wanted something to help me sleep, without increasing my use of opioids or getting into a cycle of taking additional Rx meds. Many of my friends who deal with chronic pain has found MMJ (Medical MariJuana) to be efficacious in dealing with sleep problems, so I figured it was worth a try.

Let me tell you, there’s nothing like going to a medical cannabis dispensary for the first time to make one feel *REALLY* old and out-of-touch. Seriously, I gave the budtender a nice tip not only for his assistance, but also for not calling me “Gramps”.

The whole experience was a little overwhelming, even though I had done my research and spent a fair amount of time exploring products on the dispensary’s website. It’s clear that this is still an immature industry, figuring out how to do branding/marketing, communicating with different clienteles, tapping into demographic groups who are not already savvy about cannabis use.

But I was able (with the help of the budtender) to select some different products to try. 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 that’s what I’m doing at present. So far, it looks promising.

* * *

Not all the tests we face in life are big. Or obvious. Or dramatic.

Sometimes they’re just a simple challenge: how to deal with this small problem. How to help someone. How to get through the day, or night.

With luck, in another couple of weeks I’ll have more information about my MJD status, and know whether and to what degree I have the disease. I was always very good at taking tests in school, and those I’ve faced in my life since I like to think I’ve passed reasonably well.

Waiting is hard. But it is just one more test to manage, piece by piece, day by day.

Jim Downey



Machado-Joseph Disease: bitch, bitch, bitch

OK, this is going to sound like I’m complaining. And I am, to the extent that if this wasn’t bothering me I wouldn’t write about it. But I’m mostly writing about it as documentation: documentation for when I get the neurological assessment in a week, documentation for how things are now as a baseline to compare in the future, and documentation for anyone who wonders what this weird and rare disease is like. The truth is, presently all these elements are mostly just annoying rather than being really painful or debilitating. I’ve been so sick that I can’t get out of bed, and this ain’t it. I’ve been in significant pain where I can’t think of anything other than hurting and trying to make it stop; this ain’t that, either.

A lot of people have experienced Restless Leg Syndrome, a fairly common minor neurological disorder that isn’t very well understood. For me, it comes with a kind of itch or burning sensation, mostly on the surface of my lower legs and feet, that just makes me want to move them to avoid an unseen irritant. Now, this is one of the earliest symptoms I can point to, and it goes back at least six or seven years. Was it an indication of MJD onset, or just due to something else? Who knows. I will say that it has become more noticeable in the last few months, and now happens every day or two.

It’s also, weirdly, spread to my arms. Yeah. Exact same kinds of sensations, mostly confined to my forearms and the area around my elbows. I’ve never heard of this before, but one of the sites I checked about RLS mentions it happening to some people. I guess I qualify.

Something that is kinda like RLS, but is more intense, is a sharp, spike-like pain. It really does feel like I just stepped on a nail protruding from a plank. A nice, rough & rusty one like the one I remember as a kid, going through some dilapidated old house, that went through the sole of my tennis shoe, through my foot, and then out the top. Graphic memory, eh? Yup. And that was the exact same kind of pain I get with these spikes. These are usually a one-off, can happen to either foot, ankle or calf, or in my hands. I’ve joked with my wife that it’s just memories of my crucifixion as a rebellious slave. These are kinda rare, occurring a couple of times a week.

More common are unexpected cramps in the foot, leg, or hands. These are classic “Charlie Horse” type, and just about anyone who has over-exerted themselves at some point has experienced them. One of these happen every couple of days, and can be so intense that it leaves my affected muscle aching the next day or two. I’ve got a couple of sore feet right now due to this (one the bottom of the foot from last night, one the side of the ankle from a couple of days ago). This can also be triggered by using my hands in a repeated motion, like I do when doing book conservation. Or typing.

Related, but not as intense, is a “tightening” of the muscles/ligaments on the back of my hand or top of my feet. Makes it feel like it’s pulling my hands back towards my forearm or my feet towards my shins. Usually happens to both hands or both feet at the same time. Not really painful, just weird.

Then there are the twitches. Like a tic, or a spasm. These tend to come in clusters, lasting for a few minutes at a time, and usually just hit one hand or the other. Again, not particularly painful, but an annoying reminder that my body is not entirely under my conscious control.

I’d mentioned recently the problems with balance. Random vertigo happens rarely, but balance problem are one of the more consistent symptoms I’ve noticed. It happens when it’s dark and I don’t have a visual reference to help stabilize. It also happens if I’m moving and turn my head quickly. Or if I twist to look up and behind me.

Another frequent symptom I experience I didn’t actually know was a symptom of MJD: frequent urination. Yeah, overactive bladder. This one I’ve had for a decade or more, though I attributed it to my blood pressure meds. Maybe that was the case, but it has definitely increased in recent months, to the point where just about whenever I get up from sitting I want to pee. TMI? Sorry.

While each of these are fairly minor, together they usually conspire to do one of the things that most people who have MJD complain about: sleep disruption. Yeah, it’s hard for me these days to actually sleep solidly more than about four hours. Typically I take my usual pain meds (for chronic problems) and crash, then wake about four hours later to have a pee and take the next round of pain meds. In the past I’d usually be able to get fairly soundly back to sleep quickly, and sleep another three or four hours. Now, almost always one or more of the above symptoms will either stop me from getting back to sleep, or wake me frequently for the next couple of hours. At best, I doze in a light and fitful sleep.

So, there we go: a nice summary of where things stand for me.

Of course, that’s the physiological stuff, not the psychological stuff. Because yeah, there are stresses involved with this disease. Knowing what it can do. Knowing what it means. Knowing that there is no cure, and only limited treatments that have been proven effective. Knowing that it is rare to the point of almost being unknown by those outside a few medical specialties and the other families that have the genetic disorder. I was startled the other day when I was on Reddit (a huge online community/news site) looking for something else, and thought to see what kind of support groups exist for people with MJD. There aren’t any. None.

But then, the best estimates are that only about 3-5,000 people in the US have MJD. About one person in a hundred thousand. I’m guessing that I won’t be able to find a local support group, either.

So, thanks for being there, dear reader.

Jim Downey



Machado-Joseph Disease: It’s all in my head

I’m in this curious grey zone currently. On the one hand, I’m about 99% certain that I have the onset of MJD, for all the reasons that I’ve mentioned. On the other, I don’t yet have a diagnosis or the results of the genetic test for the disease (which is definitive).

So there’s some small doubt in my mind sometimes as to whether I actually have the disease, or if I’m just concocting it from a variety of lesser symptoms of normal aging and my own rather rough & tumble life. And boy, wouldn’t that be embarrassing? I mean, I’ve told all my family and friends that I’ve got this happening, I’ve posted about it on Facebook, I’ve blogged about it. What if I’ve just imagined it all? What if I’ve got a case of hypochondria going on?

Think of it as an inverse version of imposter syndrome, and you’ll see what I mean. After all, the symptoms I have are currently episodic, lasting a few hours here or there, then disappearing for a day or three. When I’m not actually experiencing them, it’s almost easy to think that I was imagining it all. And not having the disease is how I’ve lived some 63 years of my life, so it’s the norm.

But then, there are days like yesterday.

We’d had some heavy rains, and I needed to go down into our crude basement to see how much flooding there was. It’s not a real basement, as most people think of such. Rather, there’s an area about 10×20′ that has a concrete floor, but then the floor slopes back to be just a crawlspace for the rest of the rambling structure. What passes for a foundation is a porous brick structure, and during heavy rain, it floods. Where there’s the concrete floor is where the boiler for the radiator system sits, and close by is the hot water heater. Such is the state of a 139 year old sprawling house that has seen multiple additions and changes.

Anyway, I’d installed a sump pump to deal with the worst of the flooding, and it works to do that reasonably well. But still, I usually go down and check when we have heavy storms. So that’s what I did yesterday.

After seeing that the concrete area was OK, I went further back just to look around at the rest of the crawlspace, using a flashlight. I had to crouch down a bit where the floor was rising. And the combination of bending over a bit and having a limited amount of light for visual reference triggered a quick and intense vertigo.

This is a classic MJD symptom. Because MJD is largely thought to cause disruptions in the cerebellum, people who have the disease are prone to balance and coordination problems. Without visual references to confirm my vestibular and proprioception, things got quickly out of whack.

Now, this never used to be a problem for me. I always had an exceptional sense of balance and awareness of my body in space, regardless of whether my eyes were open or closed, regardless of movement or orientation of my head. Having this happen is affirmation that my suspicions are likely correct, and I do have MJD and it’s not just my imagination/hypochondria.

I suppose either way, it’s all in my head.

Jim Downey



Machado-Joseph Disease: Hilarious

Wait, how can MJD be “hilarious“?

Well …

… so this morning (4/9/22), I got a call from a book conservation client. Since I screen my calls, he left a message, identifying himself, and said he was someone in the University administration. The call was otherwise fairly routine, asking if I could refer them to someone else for a small job they needed done, since I am not accepting new clients. [My website says it’s due to arthritis, which I do have in my hands, but it’s really due to the problems with the onset of MJD. I’ll change the website once I have an official diagnosis.]

I called the fellow back, as I would for anyone who called and left a message. We discussed what the client has, what he thinks he needs, etc. As is commonly the case, he didn’t really need conservation work done (the book is more valuable leaving it alone), but instead just needs a proper archival storage box. Since he’s here in town and associated with the University system, I ask if he is familiar with Special Collections at the University library, since they could easily make a custom box for him (and would likely welcome the chance to do a favor for someone in the administration). He admits that he’s only been in town for a year or two, and was mostly involved with the Medical School. So I tell him who to contact, and what to ask for, and to say I referred him. Easy, simple solution, but the sort of thing that makes people very happy for the help provided and has earned me many references and additional clients over the years.

Then, in chatting a bit, he asked why I was no longer taking clients. I explained that it was due to arthritis, and just left it at that. I told him I’d send him a text with the contact info again, just as a courtesy (as I would do for any client).

After I hung up, I looked again at the name he’d given me. It was a little unusual, and for some reason rang a bell. Then it hit me — he’s the attending physician in the Neurology Clinic I have an appointment with to evaluate my MJD in about six weeks.

I mentioned that I had an appointment with him in my follow-up text with the info I’d promised. We had a bit of a chuckle back & forth over how it’s a very small world sometimes …

Jim Downey



“Did we actually go there, or … ?”

One of the early reviews of St Cybi’s Well added this note under “TRIVIA”:

Most of the chapters start with information that looks like it came from Internet websites. I typed in some of the URLs, and they are exactly what they seem to be, lending credence to the book.

And several people have commented both on Amazon and on Facebook that the book could function as something of a travelog.

That’s very much by design. The chapter header URLs & info I used in the book are straight from real sites online, though I intentionally used versions which date back to ~ 2012 (the date in the novel) whenever possible. And likewise, each location specified in the book is real. As well as every bit of Welsh history or myth I used.

I did this to lend the book verisimilitude. I really want readers to wonder just how possible the story is, to feel that ‘thinness’ I describe between one reality and another in the book.  I want them to visit the sites mentioned, to feel what I have felt there.

I didn’t start writing the book with this in mind. I figured that I would simply use my own experience in traveling in Wales to ground the book in reality, and use what little I knew of Welsh history & mythology to help add color. But as I wrote, I found myself digging deeper and deeper, spending more time visiting sites virtually, until they became very well known to me.

After a while, I started to lose track of whether I had actually visited some of the sites in person, or had only visited them online. This led to the very surreal experience during a trip we took in 2017 where in going to Craig Rhosyfelin I was absolutely certain that we had visited the site previously … but also absolutely certain that we never had (the latter which was confirmed by my wife). I had spent so much time exploring the site virtually, working through the descriptions and history of it, writing the interaction of characters there, that it really did feel like I had my own personal memories of the place. Bizarre.

The same is true of several other locations in the book, to the point where my wife and I now joke about it. “Did we actually go there, or … ?” has become a standard in our travels.

And of course now, with the limitations imposed by our own real pandemic, such virtual travel is all we have at present. So if you need a vacation, maybe spend a little time in my novel. The links included on the website will help.

Jim Downey

 



“Whatcha gonna to do with the bat, Jamie?”
July 4, 2020, 2:48 pm
Filed under: Humor | Tags: , , , , ,

There’s an apocryphal story told in my family which has amused my friends for years, but which I haven’t bothered to ever write up. Today seems like a good day to correct that, since it happened on a July 4th almost 60 years ago …

It seems that my family was gathered at the home of my maternal grandmother for a 4th of July party, sometime in the early ’60s (I don’t actually remember this particular event, since I think I was just five or six years old, though I trust that it’s true). Now, the 4th of July was a big weekend for such celebrations back then, and we’d regularly get together for barbecue, beer, and fireworks. Watch some baseball. Play games. And have a birthday party for me. See, I was born on the Fourth.

Anyway, we’d been playing baseball out in the yard, some of my cousins and me. Or, more likely, since I was one of the younger kids in the extended family, I was probably watching my cousins play. And the time came for dinner, so everyone hustled inside, to sit around on various chairs in the big living room and watch some pro sports on a little black & white TV while balancing paper plates of seared meat, baked beans, and salad dressing on their laps.

Now, I’ve never really enjoyed watching sports. Just not my thing. And evidently this was the case when I was really young, too. Because I had finished my dinner, and bored with everyone else just sitting around, had wandered back outside.

Where I found one of the baseball bats we’d been playing with earlier. I picked it up, swung it around, then plopped it on my shoulder and went back inside. Because an idea had struck me.

As I said, I don’t actually remember this, because I was so young. But I imagine that I had been watching some slapstick TV earlier — probably the 3 Stooges or something — and I thought that it would be fun to emulate that.

So I walked over to where my dad was sitting, eating his dinner, watching the game. My dad was a tough, burly, Irish cop who was beloved by many but evidently someone not to be messed with. And I stopped and stood there next to his chair, just looking at him. Finally, he noticed me, looked away from the television, leaned forward and asked “Whatcha gonna do with the bat, Jamie?”

I smiled a little smile, and smacked him upside the head with it.

I have NO idea why I thought this was a good idea. Probably, like I said, because of something I saw the 3 Stooges do, or in a cartoon, or something. But evidently I thought it would be funny.

I knocked my dad cold. Boom, right out. Unconscious. Probably a concussion, though we didn’t worry about such things as much back then.

Before he could wake up, the story is that my mom hustled me off to hide me with friends or other family members for a few days, so my dad wouldn’t kill me when he came to.

Well, it blew over and became something of a standing joke in the family, and later among my friends.

But everybody knew not to ask me damned fool questions like that.

 

Jim Downey

(For other “Jim Downey” stories, I refer you to my old archive site.)

 



Easy to predict.

In Communion of Dreams, I have “experts” who are A.I. assistants. As I describe them in that book when I introduce one as the character ‘Seth’:

His expert was one of the best, one of only a few hundred based on the new semifluid CPU technology that surpassed the best thin-film computers made by the Israelis. But it was a quirky technology, just a few years old, subject to problems that conventional computers didn’t have, and still not entirely understood. Even less settled was whether experts based on this technology could finally be considered to be true AI. The superconducting gel that was the basis of the semifluid CPU was more alive than not, and the computer was largely self-determining once the projected energy matrix surrounding the gel was initiated by another computer. Building on the initial subsistence program, the computer would learn how to refine and control the matrix to improve its own ‘thinking’. The thin-film computers had long since passed the Turing test, and these semifluid systems seemed to be almost human. But did that constitute sentience? Jon considered it to be a moot point, of interest only to philosophers and ethicists.

In the world of 2052, when Communion is set, these “experts” are ubiquitous and extremely helpful. Seth is an “S-series”, the latest tech, and all S-series models have names which start with S. I figured that naming convention would be a nice way to track the development of such expert-systems technology, and in the course of the book you see earlier models which have appropriate names.

So when the time came to write St Cybi’s Well, I figured that I would introduce the first such model, named Andi. Here’s the first bit of dialog with Andi:

“Hi, I’m Andi, your assistant application. How can I help you?”

“Andi, check local restaurant reviews for Conwy and find the best ranked Fish & Chips place.”

“You’re not in Conwy. You’re in Holywell. Would you rather that I check restaurants where you are?”

“No, I’m not hungry yet. But I will be when I get to Conwy.”

“Very good. Shall I read off the names?”

“Not now. It can wait until I am closer.”

“Very good. Shall I track your movement and alert you?”

“No.”

“Very good. May I help you with something else?”

“Not right now.” Darnell shut off the app, then the phone, and dropped it back into his pocket. The walk back to his car was uneventful.

Now, I wrote this bit almost eight years ago, long before “Siri” or “Alexa” were announced. But it was predictable that such technology would soon be introduced, and I was amused as all get-out when Amazon decided to name their first assistant as “Alexa”.

Anyway, I also figured that since the technology would be new, and unsophisticated, that Andi would be slightly annoying to use. Because it would default to repetitions of scripts, be easy to confuse, et cetera, similar to encountering a ‘bot on a phone call. And you can judge for yourself, but I think I succeeded in the book — the readers of early chapters thought so, and commented on it.

So this article in the morning Washington Post made me chuckle:

Alexa, just shut up: We’ve been isolated for months, and now we hate our home assistants

“I’m not a bad person,” Angela Hatem said. “I’m so nice to people.” But Alexa, the voice of Amazon’s home devices, isn’t a person, despite how hard “she” tries to emulate one. And coronavirus/self-quarantine/2020 has Hatem feeling a bit stressed out.

“I say things to Alexa that I wouldn’t say to my worst enemy, if I had one. And I don’t know why. She makes me crazy. … I curse at her. I call her names. I’m very, very mean to her,” said Hatem, who lives in Indianapolis with her 1-year-old son. “There’s really few things I can vent at or vent to, and I’m making Alexa my virtual punching bag.”

 

Heh. Nailed another prediction.

* * *

It’s the first of the month. That means that both novels and our care-giving memoir are available for free download, as they are the first of each month. If you haven’t already, please help yourself and tell your friends.

Jim Downey

 

 



With apologies to Ursula K. Le Guin

So, since I haven’t been blogging here much in the last couple of years, I haven’t said anything about just how surreal it was working to finish my novel about a global pandemic … while an actual global pandemic was unfolding around us.

Yeah. Seriously. Real Lathe of Heaven stuff, making me wonder about just how much my envisioning a given reality was bleeding into this reality.

To a certain extent this had been an ongoing problem with writing St Cybi’s Well, as I had mentioned previously. I had to keep going back and making the ‘dystopia’ of SCW worse as our own world took a turn for the worse with the election of Trump, elements of Christian fascism seemed to be in ascendancy, et cetera.

But this year, after I had gotten a solid re-start on finishing St Cybi’s Well, watching the Covid-19 virus start to spread, was just … bizarre. And as you’ll see when you read the book, how the virus spread and the efforts that various governments tried to curtail it was pretty much exactly as what happened in real life. Fortunately, of course, C-19 hasn’t proven to be nearly as deadly as the Fire-Flu.

Well, at least not yet.

< shiver >

Jim Downey



Reboot.

“This new reboot of Star Trek: TOS succeeds on several levels, and all audiences are expected to find something they like in it. The choice to cast @@@$F%(&*&^^ in the role of Captain Kirk is not without controversy, however, as it is the first time a non-human actor has been selected to play the iconic character.”