Communion Of Dreams


Take the long view.

Last fall, I embarked on a long-term project: doing exterior repairs and repainting our 140 year old Victorian Italianate home. As I’ve mentioned previously, this place has been in my wife’s family since the early 50s, and in all that time has basically been white with some color trim work. We’ve decided to change that, and here’s a little before & after from last fall to show you the difference:

I started back on this section of the house for two reasons: 1) it was fairly simple in terms of ‘gingergbread’, so it would give me a chance to work out the color scheme and get used to painting, and 2) the small, almost square window there in the corner actually needed a fair amount of carpentry work, to repair a stubborn leak that had caused some structural damage. I wanted to get that done before the damage got worse.

Anyway, I worked on it for a couple months last fall, until Winter settled in. And I got back to it in May, once the long and strange Spring turned reliably nice enough. I’m now finishing up work on the next major section, and as I’m inclined to do I’ve been posting progress pics on Facebook. And I’ve noticed a curious thing.

My friends have been posting encouraging comments as I go, which I expected (and hey, a little encouragement helps). But occasionally someone will post a comment to the effect that with all that I’ve accomplished, I must be getting close to being finished.

Say what?

Now, partly this is just due to the difficulty in getting a handle on just how big this place is. I mean, it’s no mansion, but it is a big ol’ 19th century farmhouse. It’s big enough that I can’t honestly take a decent pic to give a sense of the size. But take a look at the pics above. Note how there’s basically three different walls there. Got that? Yeah. Now, in total, this place has 20+ such walls (including the ones on the second story that are discrete from the ground floor walls. I also need to completely redo the 10′ wide front steps and railings, as well as the little side porch floor and railings. And about a third of the house has more gingerbread detailing that will take extra time.

Let’s put it this way: I’ll be very lucky if I can get it all done this year. Hell, I expect that it’ll take the better part of next year’s good weather to get it done.

And this seems to come as a surprise to many people.

But that’s not the curious thing.

To me, the curious thing is that a lot of people seem to think that working on something of this scale would be daunting. Intimidating. Scary. Whereas for me, it’s the most natural thing in the world, and not daunting or intimidating in the slightest.

Partly, I think that is just the perspective that comes with getting to my age (mid 60s): you tend to see larger arcs to life.

But it’s also because I’m a novelist. St Cybi’s Well took me the better part of a decade to write. Even discounting the long periods when I was just thinking through the novel, or was otherwise preoccupied, I still spent several years actually writing and rewriting it. I’m used to thinking in terms of taking the long view. Of working a little on a project when I can, slowly making progress, page by page, wall by wall. Here’s where I am currently:

For scale, that storm window is approx. 2′ x 8′.

I should get the repairs and priming done tomorrow, and the rest of the window frame painted on Monday. The storm window itself needs some repairs, then painting. Then there’s an identical one just out of the frame of the picture above.

One step at a time.

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: 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: brief update

As the title indicates, this is just a brief update for those following this story.

I’m still waiting for the paperwork for the genetic test to come through. This isn’t surprising, since the local large-institution university hospital which shall remain nameless moves at the speed of most bureaucratic institutions. It could show up any time, or not for weeks. We’ll see.

Since there isn’t any kind of ‘cure’ for MJD, and the disease progresses slowly, I think that unfortunately the medical community doesn’t tend to think that it is a pressing issue. If I had some kind of cancer, or a serious heart problem, testing and treatment discussions would have been much more aggressive. I know — I’ve had a serious heart problem.

I noted in my last blog post that I have no intention of continuing care with the Neurologists at the local large-institution university hospital which shall remain nameless. I have also decided that I need to take my own care into my hands for at least the time being, until I have the test results back and arrange for a new neurologist. I know what treatments are typically used to manage the symptoms of MJD patients, as well as what my family members have found helpful, at least in the early stages of the disease, and I have taken steps to use the same/similar treatments. If it turns out that I don’t have MJD, none of these steps will cause problems.

So right now everything is about mitigation. My balance and flexibility exercises have already shown positive results. The Restless Leg/Arm Syndrome continues to show up periodically. Hand cramping and tremors still happen, particularly after I have been using my hands for intense work. Episodes of vertigo still hit me, particularly when I rotate my head or bend over. Shooting pains and ongoing aches still happen in both hands and feet, though not usually at the same time.

And something new, that I don’t recall hearing about from any of my family, though it is a classic symptom of Type 3 of MJD: instances of blurry/double vision. This isn’t debilitating (at least not yet), and only happens when I am trying to focus on something up close, but it was very surprising and disorienting the first couple of times it happened. If you’ve ever worn multi-focal lenses, it kinda feels like that when you first put them on. I’ve since learned that simply shifting my focus further away resolves the problem instantly.

So that’s where things stand. While I wait for the test, I’m just doing my best to learn to cope with the symptoms. It’s been an interesting process of adjustment to my new reality, and again confirms just how plastic/adaptable humans can be.

Jim Downey



Machado-Joseph Disease: Changes in attitude, changes in longitude

Yeah, I know it doesn’t scan as well. But I don’t want a noted songwriter’s lawyers to sue me. And it’s more accurate for my use.

Yesterday my sister (who, as I’ve mention, has MJD) had her semi-annual check-in with her neurologist’s office, this time a virtual chat/exam with a staff Physician’s Assistant she hadn’t worked with previously. I popped over to St Louis so I could be with her for it, as it would give me a chance to see how it was done, have an introduction to the P.A., and get a direct handle on her current condition and challenges.

And I wanted to talk a little about the difference between this virtual session and my experience with the local large-institution university hospital which shall remain nameless. Obviously, I’m not going to get into health/medicine details, and I have cleared this with my sister.

The difference was striking. Rather than an almost patronizing “I know about this, because I’m the doctor” that was the overall vibe of my exam, the P.A. shared that she herself has M.S., and so personally understands the difficulties of having a neuro-muscular disorder which may be treatable, but for which there is no cure. Even with the limitations of a Zoom call, she exuded empathy, nodding as my sister described recent challenges and changes to her condition, discussing what meds have been working and which needed to be tweaked. They went over vital stats, overall health and wellness, chatted about the possibility of different kinds of therapies which might help, and so forth. The whole thing was personal, friendly, and very helpful.

Now, my sister has a diagnosis of MJD that has been confirmed by the genetic test, and a long care history with this neurologist and their staff. So none of that is an issue, whereas in my case things are still indeterminate (frustratingly so, as I’ve noted). So that’s certainly a very big difference between us, and the care we might expect to receive.

But as my sister was discussing her symptoms with the P.A., I couldn’t help but check off how I had a less severe version of most of them. And I couldn’t help but notice how the P.A. really listened to her, and her own assessment of how she was doing, what she was experiencing. Lastly, I couldn’t help but compare the care and attention she had received versus how I had been treated in my initial exam and in follow-up communications.

Now, you might think that comment is a little harsh, given what I said in this blog post. But I haven’t mentioned here that after that post, I received a response from the Attending Neurologist which … rather curtly doubled-down on the attitude of the initial assessment, and said they knew what they were doing, he knew more about the disease than I did, and that I was presymptomatic for MJD in all their tests, whatever I might happen to think I was experiencing. Though he did grudgingly allow that the genetic test may show something, and if so they’ll address that.

Well, actually, no, they won’t. Because once I have the test results, whatever they show, I’ll be finding a new neurologist. I’ve just seen the difference in how people can be treated, and I know which way I want to go.

Jim Downey



Machado-Joseph Disease: Nervous

I honestly didn’t expect this.

Arrangements have now been made for the genetic test I’ve been wanting, and now I’m nervous about it.

Yeah, sure, it makes sense that I might be nervous about finding out I have MJD. That’s perfectly understandable. But I’m also weirdly nervous about finding out that I don’t have MJD.

WTF?

See, there’s a part of me that, well, as I said previously:

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?

After all the fuss I’ve caused. After all my own worrying. After troubling friends and family. If it turns out that I don’t have it …

Well.

< deep breath >

If it turns out that I don’t have it, I’ll have dodged a bullet. It’ll just mean that I have been overly vigilant, perhaps over-reacted to some aspects of normal aging. Yeah, that might be a little embarrassing. But I think anyone who has had a health scare will understand.

And, as a friend said recently, it’s not like I’ve just invented this disease out of whole cloth. The fact that five close family members have had it in my lifetime means that it is a reasonable thing to check out, once I detected symptoms which could indicate onset.

Sometime in the next couple of days I’ll have the blood draw, and that will be sent off to Massachusetts. I should have the results back in about a month.

Keep your fingers crossed.

Jim Downey



Machado-Joseph Disease: Adjustment.

[I’ve decided to be public about my realization that I have the onset of MJD, the diagnosis process, and then living with the disease. Given the rarity of this disease, my hope is that this series of blog posts will help educate others, and perhaps provide some insight into it and related conditions. This is the third post in the series, written about a week after the second, as I started reframe what this would mean for me going forward.]

Been an interesting week, as I have been adjusting to the new normal of having MJD (as noted in my previous post, this is now where my head is at, though I won’t have an official diagnosis for about two months yet). It’s mostly been a process of re-calibrating my body awareness: noting that I have these muscle spasms in hands, feet, and legs, that the pain levels are there, and so forth, and then just moving on with my day. Living with chronic pain from a torn intercostal muscle that’s never healed properly, along with the random aches & pains of various abuses I’ve subjected my body to over the years of living life fully, means that to a certain extent the new aches & pains associated with MJD are just more of the same.

That’s not to discount the disease, nor the pain that comes with it. That’s real. And it has an impact. More pain, even if it isn’t worse pain, takes a toll. It wears me down faster. It’s more distracting, so it makes it harder to focus on any given task, especially creative ones. For the most part, though, I can just acknowledge the pain, listen to what it is telling me, account for it, and then get on with whatever I’m trying to do. So the pain isn’t the problem.

What is the problem is the degree to which this interferes with my bookbinding/conservation work. I’d been attributing the aches and pains in my hands to arthritis for years, and in truth I actually do have arthritis in some of the joints in my hands. That’s the result of the trauma inflicted by martial arts (primarily SCA combat) for about a 15 year period when I was a young man.

But worse than the aches and pains is the stiffness, spasming, and occasional loss of control in my hands. So far, the latter has only happened after I have been working using my hands (specifically while putting up the stamped copper ceiling in the kitchen this past winter). But I know it is just a taste of things to come. Dystonia is a classic symptom of MJD, and the spasms and pain in my hands that I’ve noticed the last few years is only likely to get worse and become more of a limitation. I had already started to scale back the conservation work I do, but now I need to be thinking in terms of finishing up pending obligations, handing off clients to other conservators, and becoming officially ‘retired’ as a book conservator. That’ll be a hard adjustment to make, since so much of my self-identity is tied up with it.

* * *

(a few days later… 4/7)

Something I’ve been thinking more about is the difference in the types of pain I’ve been feeling. This is distinctly muscle pain, as opposed to the kind of pain one has from arthritic damage to a joint, or tendon damage, or a broken/bruised bone. This is the kind of thing pretty much everyone has experienced at one time or another, from over-using a muscle (or a group of muscles). It feels almost exactly like what you experience the day after a really hard physical exertion, except it also feels a bit like what you experience shortly after exhausting the muscle in exercise. Think how your calves/feet feel after a five mile hike in street shoes: tired, twitching, and sore. Then add in how your calves would feel the next day, in terms of stiffness and that deep ache. It’s unusual in my experience to have both of those at the same time, but that’s pretty much what my hands and feet/legs feel when I’m having an episode of the MJD effects.

And that’s another thing: this isn’t constant. Not yet, anyway, for me. It’s episodic, lasting for a few hours, at most a day or so. Then it fades for a while. I haven’t yet been able to identify a pattern to the episodes, unlike my intercostal tear (which usually acts up in response to a change in barometric pressure or certain kinds of exertion). It’s possible that there isn’t one, and no way to predict what might trigger an episode. I suspect that may be the case, given that the episodes typically become longer and more frequent over time, until the pain is pretty much constant.

I’m sure I’ll find out. *sigh*

* * *

4/8

Bad episode today. Spasms, twitches, RLS (Restless Leg Syndrome), and a fair amount of muscle pain. Particularly in my hands. Possibly a connection to the cold front (we’ve had spitting snow and wind today, with a hard freeze forecast for tonight)? Whatever, been a rather annoying day. Particularly so since I had been planning on getting some binding work done, and my hands are just in no shape for it, even with having had them in the microwaveable mitts I use to loosen things up.

As I noted above, this is a psychological blow, as much as anything. 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.

I’ll miss that. And I’m honest enough to admit it.

Jim Downey



Machado-Joseph Disease: Realization

[I’ve decided to be public about my realization that I have the onset of MJD, the diagnosis process, and then living with the disease. Given the rarity of this disease, my hope is that this series of blog posts will help educate others, and perhaps provide some insight into it and related conditions. This is the first post in the series, as I started to come to terms with the realization.]

3/13

I’ve known this disease for almost 50 years. From well before my family even had a name for it. I’ve seen it kill family members by millimeters, and do its best to ruin the life of my sister over the last 15 years.

So, why did it take me so long to recognize that I have it?

* * *

Denial, perhaps. This is not the sort of future one particularly wants to face.

Or perhaps a sense of entitlement? That I have had enough other pain and suffering in my life, that I deserved to be missed by this curse?

Or maybe a lingering perception of invulnerability? It’s said that none of us can really envision our own mortality until it steps out of the shadows and confronts us face to face.

All of the above.

What I know is that I first experienced tremors & cramping in my hands several years ago. The stiffness and ache I had felt I attributed to osteoarthritis — I had abused my hands considerably during my years of jujitsu and SCA combat, after all. At first, I just figured that the tremors and cramping were due to the same.

Except arthritis doesn’t cause tremors and cramping. Some part of me knew this, but discarded the information.

The same was true of the foot/leg cramping, the RLS (restless leg syndrome). I figured it was due to walking. Or climbing ladders. Or digging through turf. Or just ‘one of those things’.

All plausible explanations.

Because some part of me didn’t want to acknowledge the possibility of MJD/SCA3 (spinocerebellar ataxia type 3). As noted, this is not the sort of future one particularly wants to face. Depending on the age of onset and some other factors, MJD can mean anything from almost total debilitation and an early death to prolonged suffering and loss of bodily control. And we’ve seen the full range in my family. Not the sort of thing one wants to particularly acknowledge, since there is no cure and precious little in the way of medical treatment for the symptoms.

What was harder for me to ignore were the moments when I lost my sense of balance. My formerly exceptional sense of balance; graceful, fluid motions on the field of combat or the practice mats of a dojo. Gone now. Oh, routine walking is still perfectly fine. But when I turn my head quickly, or close my eyes while still moving, things will spin/sway/shift for just a moment. That never happened before. Well, unless I got drunk. Because that’s pretty much exactly what it feels like.

And then recently, I started just dropping things. Particularly tools, when I was tired from using them after a couple of hours. My hands would just stop working for a moment, and the item would slip from my grasp.

Now, I can be as clumsy as the next person in just routine day-to-day stuff. But when I’m working with tools, my focus, my control, is exquisite. It has to be, in order to be a book conservator, as I have been for thirty years. I don’t just start losing control of my tools. Let alone dropping them.

But I have.

* * *

Just before New Years we got together with my sister and her family. We’d had visits during the pandemic, but they had been brief, sometimes outside, more superficial. For whatever reason, as we were talking about how she was doing in her struggle with MJD, we got a little deeper into the details than usual. And as we talked about her symptoms, it was like a checklist formed in the back of my mind.

A checklist of symptoms. A checklist with each box ticked.

I realized that it was possible that I had been experiencing the onset of MJD. I scheduled an appointment to see my GP, far enough out in the future that I figured that the Omicron surge would be past, and it would be relatively safe to talk with her.

I didn’t put it out of my mind — how the hell could I? — but I was able to convince myself that it made the most sense to just wait and see my doc, and likely then see a neurologist after. Because MJD is rare enough (like 0.005% of the population rare) that my GP had zero knowledge of it, as I knew from previous discussions with her about family medical history. But I did start paying closer attention to that checklist. And I did some more reading on the latest research and medical information about MJD. It turned out that there had been a LOT of additional research and publications, and the disease was now much better understood than the last time I had dived into the literature some five or six years ago.

After digesting that, I was reasonably certain that yes, I had the onset of the disease. I shared those thoughts with my wife and a couple of very close friends I knew I could trust to not freak out or over-react. I still wanted to wait and see my doc, then a neurologist, and get the results of the genetic test that would confirm whether I had the disease, and to what likely degree, before I said anything to my family or other friends.

* * *

Last Tuesday (the beginning of March, 2022) I saw my doctor. It went as I expected, with me explaining my suspicions and how they matched the symptoms of the disease. What I didn’t expect, as we discussed it, was that her questions about the disease sharpened and confirmed those suspicions. She agreed with my analysis completely, and I left the appointment convinced that I have MJD, and that I had likely experienced the first onset three or four years ago.

I’m still waiting to get an appointment with a local neurologist (through a referral from my GP’s office for insurance purposes), though that will probably happen in the next week or so. Everything above is what’s been playing out in my head as rehearsed dialogue for that meeting. Time and time again.

So I thought I would write it down. Like being a care-giver, it helps me to process and understand what I am going through. Perhaps I will make it public. Perhaps it will grow into something like Her Final Year, as a way for me to share my perspective and help others who experience ataxia or have someone in their life who does. We’ll see.

For now, I will keep these thoughts to myself. But will update as seems useful.

* * *

3/16

Today it was a week since I was told by my GP’s office that they had sent over a referral to the local university Neurology Clinic, where they actually have at least one person on staff who is familiar with ataxias. (I went and looked at the public profile info about the staff on their website).

Since I wasn’t quite sure how the University referral/scheduling system actually works, I called the Neuro Clinic, and chatted with the nurse who answered the phone. Yes, I can be funny and charming if necessary. Looks like my case is already in discussion with the docs there, and I should hear from someone soonish about actually getting in to get an appointment/evaluation. The nurse I spoke with said that the process usually takes a month or longer, and that it has happened in just a week means that it’s on a fast track. Looks like I’m special. Woo-hoo — lucky me!

* * *

3/18

Haven’t heard from the Neuro Clinic yet — hadn’t really expected to, but still …

I’m used to chronic pain. From the joints I’ve abused, from the intercostal tear in my side that I’ve had for a decade+, from the ache of bones broken in a full and vigorous life.

So the extra pain in my hands and feet isn’t really a change. And it’s not like the pain is any more intense or distracting. But it is a change. Like using a larger hose to fill a pool; the volume of pain has increased. It fills me up faster, reduces the energy/attention that I have for other things.

It’s like being out of shape, and discovering that you just can’t run as far or as fast as you used to be able to. It catches you a bit by surprise, and there’s a part of you that just wants to deny that something so fundamental has changed.

I told a friend (one of the very few who knows about this) that I’m currently uncertain whether or not I’ll put a garden in this year. It’ll depend on what I find from connecting with the doctors. Oh, I’m sure that I *could* put in a garden, but how much would that take away from other things I want to accomplish through the summer & fall? I’m being a little more cautious about how I commit myself, not knowing what resources I’ll have available.

So I hope the scheduling nurse from the Neuro Clinic calls next week.

Jim Downey



The Covid Shift

I’ve been pretty open about my mild bipolar condition since I started this blog a dozen years ago. It’s real, and I have to pay attention to it, but I’ve understood it and been able to manage it safely for decades. My natural bipolar cycle (from trough-to-trough or peak-to-peak) is very long, about 18 months, plus or minus a few weeks, and has been remarkably stable since I was in my 30s.

Until now.

As expected, I hit the bottom of my trough sometime last December. I tend to be stuck in that condition (or in the manic peak, which is actually more dangerous) for a month or so. Then things will slowly start to rise, I’ll feel the depression clear, and energy will return for six or seven months until I get into a truly manic state. And early this year, going into the spring, that’s what happened. And that, in large part, is why I was able to finally finish St Cybi’s Well.

Of course, at the same time, the Covid-19 pandemic hit.

Now, I’ll be honest: Covid-19 has had minimal impact on my life. I’m semi-retired from book conservation due to increasing problems with osteoarthritis in my hands, so I seldom meet with clients. I’m a strong introvert, so I rarely feel the need for much human company beyond time spent with my wife, and easily resist temptations for socializing. I have plenty of things to do at home, and our financial situation is stable. The lockdown and need to be socially distant were not a hardship.

But still, Covid had an impact on me. More than I realized. Because rather than continuing my bipolar climb, I started the downturn back towards depression sometime in May without ever entering into a manic state. It took some weeks before I could be certain that this shift was real (minor fluctuations up & down is normal within the overall bipolar cycle), but it’s been long enough that I am now certain.

When you’ve lived with something like this for literally decades, it’s disorienting and a little frightening to have it suddenly change like this.  I can’t predict my baseline psychological state a month from now, or six months from now, or a year from now. I don’t know if this is just a one-off truncation of my more manic period, or if the cycle is now shortened, or is gone altogether.

Kinda like what the pandemic has done to a lot of things we used to consider ‘normal’. We’re left off balance, uncertain of the future.

Now, there’s no reason to worry about me. Having lived with periodic depression for so long, I well understand how to deal with it. My coping skills are very good (writing like this is one example), and I know what to watch for, when to turn to help if I need it.

But take this as a cautionary note, and pay attention to your own mental health. This pandemic is more far-reaching than you might realize.

Jim Downey

 



“If you’ve never experienced the magic that is Wales …”

I’m just going to post this entire review:

Reviewed in the United States on July 28, 2020

From the very first page, St Cybi’s Well steeps you in the rich culture and landscape of Wales. It has a feel of ancient otherworldliness—until the scientific and political realities hit you full-on.

This book sounds uncanny echoes of our present predicament: Pandemic. Police. Politics. Racism. Rioting. Revolt. You can hear the ripping of the social fabric as fear overcomes reason.

And yet, there is hope. Hope for healing. Hope for a better future. Hope for us all.

With protagonist Dernell Sidwell’s quest for hope/healing/redemption set in the mystical, ancient sites of Wales, the reader feels deeply drawn to the power of the past—all while checking over their shoulder for what new nightmare the present has to offer.

You’d think the author was a time traveler, considering how closely Sidwell’s journey parallels the challenges we now face. You will appreciate Sidwell’s determination, his acute survival skills, and his willingness to consider, confront, and accept some things that stretch his perceptions of what is possible.

If you’ve never experienced the magic that is Wales, take the trip now. This is an urgent adventure that will linger with you long after you’ve finished the last page. I’ll see you at St Cybi’s Well.

St Cybi’s Well, and my other books, will be available for free download this coming Saturday, as it is on the first of each month. Please download & share! And as I’ve said before: “And please, if you do read it, leave a review.”
Jim Downey