Communion Of Dreams


Machado-Joseph Disease: Management trainee.

This morning I picked up my monthly meds. Basically, the same set I have been taking for almost a decade.

And as I was going through and organizing things, I realized something interesting: I’m taking *way* less of my opioids (Tramadol and Tylenol #3) now, thanks to my Medical Marijuana.

The growing MJD symptoms had started cutting into my small reserve of the opioids which had been more or less stable for years. I mentioned this in one of my first posts about MJD:

But of course, being aware of — even moreso paying attention to — more pain is, well, painful. Distracting. Annoying. So in terms of my perception, my ambient pain levels have gone up significantly in the last few weeks. I noticed recently that my use of my prescription pain meds (Tramadol, Tylenol 3 with codeine) that I’ve been on for about a decade for an intercostal tear has ticked up recently. Now, that happens, particularly when I am doing some strenuous exercise/project. There’s a sort-of natural ebb & flow to it through the year, with some months being a little higher usage, some being a little lower usage. But since we finished installing a new stamped copper ceiling in the kitchen, I haven’t been engaged in anything very physically demanding. That was six weeks ago, and I should have reverted to something closer to baseline. I haven’t.

By the time I got my MMJ card two months ago, I had pretty much used up the small reserve I had. That was a little nervous-making, since I really didn’t want to increase either the power or amount of opioids I took.

Well, in just two months of having access to MMJ, and about a month of understanding how I can best use it for my needs, things have changed. A lot. Like, I’m now taking half the amount of opioids I was (same for alcohol intake). In this short time I have already replenished my reserve. I could probably cut that further, but I’m still just using the MMJ products in the evening (very mild dosages) and overnight (mild dosages).

This disease, and the version I have, is progressive. With luck, however, I should be able to manage the symptoms, and particularly the annoying pain issues, without increasing my intake of opioids for a while. We’ll see — it’s all about learning how to manage things.

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



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: 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: 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



Reinvention in the time of Covid

So, about a year ago I made a fairly big change in my life, and posted the following to my professional website:

September 1, 2019 – Please note:  due to increasing difficulties with arthritis in my hands, I am curtailing how much conservation work I am doing.  Henceforth I am prioritizing established clients and works of notable historic value.

Yeah, this has been a developing problem for me the last few years, limiting just how much detailed work I could do. It’s gotten to the point where I can typically do only a few hours a week of the difficult, careful work required. Other kinds of hand work isn’t nearly as demanding, unless it involves shock to my hands, so for the most part I’ve been able to continue with the rest of my life with minimal difficulty.

So, after posting that, I started referring new queries about conservation work elsewhere, and focused on my established clients and institutional work.

Then Covid-19 showed up.

After we got a good handle on just what that meant, I stopped meeting with even established clients. Because while my health today is just about better than it ever has been, I am nonetheless at very high risk of having a very bad case of C-19, should I catch it. Frankly, I probably wouldn’t survive it. So I’ve been telling clients that things can wait until there’s a safe & effective vaccine, and I’ve gotten my dose(s) of it.

Which is fine, because there’s rarely a reason to “rush” conservation work. And besides, I had a backlog of work waiting for me in my safe, as I always have.

Well, had.

Last week one of my institutional clients popped by to collect the last couple of items I had to work on. Just a brief, masked, socially-distanced visit. Previous projects had been mailed off, or likewise returned to clients with minimal contact/interaction.

And now the cupboard is bare, so to speak. For the first time in literal decades.

I mentioned a couple of months ago that Covid had likewise changed something else for the first time in decades: my usual mild bipolar cycle. That’s still disrupted. Well, honestly, it’s almost nonexistent. I don’t really have any sense of change currently; I’m in just a new, vague limbo which is neither good nor bad. It’s an odd feeling. Like so much, these days.

Anyway, to ‘run out’ of conservation work isn’t really a problem for me. We’re fortunate enough to be financially stable at this point in our lives, and I had been accounting on much reduced income from conservation for a while.

And, in a way, it’s good. Just this last week I also got the ‘proof’ of the printed pages of St Cybi’s Well, so I can do the hand-bound editions of that book soon. Here’s the proof copy:

SCW proof

That’ll keep me busy for some time.

And beyond that? Well, reinvention is an American’s birthright. I have more artistic impulses to explore and revisit. I have more writing I want to do (no, I’m making no promises of anything). I have life I want to enjoy.

So, for the time being, I’m going to take reasonable precautions to make sure that I can enjoy it, and do those things. I’ll get back to meeting with clients, and doing book conservation, when it is safe (in my assessment) to do so.

Take care of yourself.

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

 



The Waltz Dystopic

Why on Earth would you want to read a novel about a pandemic during a pandemic? Or why would you want to dive into a world where America is a dystopia of racial hatred and theocratic overreach when America is, well, trying to sort out racial hatred and theocratic overreach? There’d have to be something wrong with you to join in such a dance, wouldn’t there?

This was touched on in an interview on NPR I listened to this morning on my daily walk. In it, author Josh Malerman said that reading about a pandemic during a pandemic was somehow comforting; it was a way of saying “we know how to deal with this”.

In writing St Cybi’s Well I used an old literary technique to create some psychic space between the reader and my criticism of our American society, by not placing the story in America, but by having characters in the story reflect on and discuss what a dystopia American had become. This way the reader joins me in a dance, following my lead, but themselves moving through the story I’ve set out. The dystopia is there, but together we have defined it, perhaps tamed it enough that we can see it for what it is.

Of course, our reality is not the reality of St Cybi’s Well. Though it is still very early in the Covid-19 pandemic, I don’t think that it will be quite as devastating as the Fire-flu is in my book. And though we are perhaps at a turning point in the political history of our country, we’re not yet in a constitutional theocracy.

Take the lesson — or the warning — for what it is. That’s why you join the dance.

Jim Downey