How I’m doing with ME/CFS

This post was triggered by watching a video about PhysicsGirl and how she’s been suffering from Long Covid / myalgic encephalomyelitis / chronic fatigue syndrome:

What do I hope people get out of it? Well, as my blog says, this is my 2 cents added to the pile of info already out there. When learning about writing or making movies I found it useful to read different points of view, so here’s another CFS POV for people to consider. For those of you newly diagnosed with CFS (and with the energy to read and digest; if not, then for your loved ones), I describe my journey (so far) so you at least have something to compare your ‘adventure’ to.

I was officially diagnosed in June of ‘20, just in time for the Covid lockdown. I’d been dealing with unexplained fatigue since at least spring of ‘19 and been to lots and lots of doctors. The docs were narrowing in on a diagnosis of CFS, since all the test results were negative, but what persuaded me to continue pushing was being paid to stay at home, but unable to make any headway on any of my personal projects.

My symptoms steadily worsened over the 6-8 months before my diagnosis, but I didn’t realize it at the time. My work (programmer) was such that if it took me a week to do a few hours of work, it had no impact on anyone else, so I just shrugged it off with lack of motivation. I started a new job just 2 weeks before the lockdown. The sort of professional work I’ve been looking for nearly my entire programming career. Yet I struggled with tasks that were largely rote from just a year or two earlier. Even when I got an example snippet of code from an earlier project where I did exactly the same thing, I couldn’t get it to work. I ‘justified’ this with the excuse it was a new job with a new code base and it made sense it was taking a while, but I knew deep down that was a lie.

When the lockdown happened I was kept on the payroll, so was very much looking forward to being paid to work on my personal projects (due to the nature of my work, it could not be done remotely). Yet I had the exact same struggles with all my personal projects. So many struggles, in fact, that I became convinced I was in the early stages of dementia. My nurse wife pretty much laughed in my face, insisting I didn’t actually have any such signs, but that did nothing for my worry.

One of the theories around CFS (what I’m used to calling it) is it begins as a result of a viral infection that leaves the body in some sort of state that it keeps on battling even after the virus is cleared, thus the continued exhaustion. For some reason. Who knows. Hopefully the money to research Long Covid will lead to something for all the ME/CFS people out there. The previous time I had unexplained fatigue (can’t remember the dates any longer (one of my symptoms is what I term Swiss Cheese memory)) I was given a test for Epstein-Barr virus and the results came back indicating I had recently cleared an infection. Indeed, the same test run when the later episode began turned up the same results. Unfortunately, that’s not really helpful, as lots of people have the same sort of results, but lack any fatigue symptoms. The research I was able to absorb (I used to be good at that sort of thing, having a biochemistry degree and many years of laboratory research experience) indicates that there still isn’t any sort of actual diagnostic for CFS, let alone experimentally supported theory for what caused it, why it continues or what’s causing the fatigue.

It’s often very difficult to get people to take you seriously when you tell them, since you look perfectly fine. I didn’t (don’t) look ill at all. To know anything’s wrong with me you have to know who I used to be, to know that something’s wrong when I struggle to carry on a conversation, watch TV longer than 20-30 minutes or read something non-technical for more than a few paragraphs (heck, even new fiction was a struggle; I had to give up beta reading). During the worst of my experiences (I’ll say ‘so far,’ since there’s no cure and any successful treatment can stop working at any time, for any reason) I was still able to get up and down the stairs. Granted I’d often have to rest a couple of times going up, and had a tight grip on the handrail going down. I’m one of the ‘lucky’ ones, who was never bedridden, always able to make it to the bathroom by myself, eat by myself, etc. I was housebound for a good long while, though. But since that coincided with the lockdown, it really didn’t seem like such an issue.

It took me until the end of ‘20 to find a specialist. There are very few, though maybe that’s changing now with Long Covid. Initially, I didn’t feel the specialist was very helpful, though it was refreshing to have a doctor that took my symptoms seriously. It was still ‘try this, try that and see what happens,’ but what he did ‘prescribe’ that ultimately made a huge difference to me was to exercise. Yes, I know everyone says exercising is counter productive, but that’s exercising _too_ much. The longer your body goes without any exercise the more difficult it is to do anything, and my specialist’s point of view (which I totally subscribe to now) is by exercising, even if it’s just a little, your body will retain what muscle tone it still has, and will work to increase it. When I started, I was doing a whopping 2 mph on a flat treadmill for a whopping 3-5 minutes. And I’d often be so rubber legged when I was done I’d have to stand for a minute or so to be able to walk away. It took a long time (like months), doing this 3 times a week, to reach 15 minutes! But even after a few weeks I began to feel a positive difference in my day-to-day. It’s _very_ easy to overdo things, and it’s critical to quickly learn how your body feels when you’re about to ‘exceed your energy envelope.’ For me, if I overdo things I often feel _better_ the next day, making it really easy to overdo things two days in a row, leading to even worse results. Overdoing things triggers PEM, or post exertional malaise. Malaise indeed! And it can _easily_ take weeks to more than a month to recover from the PEM to get back to the level before overdoing things. All the while struggling to do even the most basic exercise.

Want to know what’s even worse? _Thinking_ too much can trigger PEM. I, of course, discovered this the hard way, because that’s just who I am. And, being the scientist I am (or, was, I guess), I had to replicate the experiment to get the same results before I believed them. I was really upset when I talked to my specialist, complaining about this, and he basically shrugged and said yes, this is a CFS thing. I used to use my brain for a living as a programmer. I got a biochemistry degree and an MBA intending to build a biotech business, even getting a patent for a DNA sequencing chip. I made extensive use of my brain writing novels, screenplays and making movies. Now, I struggle to do even pedestrian programming, have almost given up on biotech, other than emails (which can run novel length ;-), in the last 3 years only I’ve written part of a screenplay and a chapter in what was intended to be a novel. And 99% convinced myself I can never make movies again.

Depression is a real thing, for some people worse than others. One of the drugs I take is a low dose antidepressant (antidepressants, particularly at low dose, having significant success for some people for who knows why), so maybe that’s helped me over the long run, but I’ve certainly had black periods. I was helped talking to a counselor who convinced me to allow myself to be unhappy, angry, even depressed, as that permission makes it easier to let go later. The biggest issue I’ve found is ‘rebuilding’ myself, to find some reason to look forward to the future. Honestly, as I write this in March of ‘23, I’m still struggling with this. Even after getting a really good combination of drugs. The combo isn’t enough to make me feel normal, but allows me to recover from overdoing things, physically or mentally, in days instead of weeks or longer. I often still struggle with conversation (I vastly prefer the written form of communication; I can edit!), though I do better (less bad) than before. I’ve built my body up enough that I can work on things around the house, though I have to be very aware of how far I’ve pushed myself. I still overdo things, still suffer from PEM, just recover faster. I’ve gone 30 minutes on the treadmill at 3 mph and even finished a 5K walk (saved from being last by an old man with a cane). But I’m not able to handle very complex programming tasks, and even simple bugs (well, simple once I finally figure out the problem) can take weeks to resolve (‘weeks’ because I often have to put it away after a day or so of effort). I’ll be able to write something like this blog post without too much difficulty, though misspelling so many common words can make me upset enough I have to take a break, which can last for hours or even days. I can watch new movies sometimes as often as once or twice a week. What’s that go to do with anything? Well in the beginning, I found it impossible to focus enough on a new movie, or a new video topic, long enough to understand what was going on, so stuck with rewatching things. Still, even now, watching new movies can tire me out pretty quickly. I’ve mostly avoided reading any new novels to this point, particularly as a beta reader (someone who helps an author with a new work), because it’s a much higher level of focus for much longer than movies, though I can put the book down. Except by putting the book down I run the very real risk of having forgot much of what I read the first time and have to start over. Sigh.

For anyone interested, the drugs that work for me are Wellbutrin (extended release version of bupropion), 2 tablets, 300 mg total, two types of Adderall, 10 mg of ‘fast release’ and 30 mg of ‘slow release’, but what’s really seemed to make a huge difference is taking the over-the-counter antihistamine Xyzal, 2 tablets, 10 mg total. A disclaimer: do not self treat if you’ve been diagnosed with CFS. And if you haven’t, still don’t self treat, keep looking for a doctor who will actually listen and help you. Adderall, for instance, is a controlled substance and having it without a prescription can land you in jail. I tried _lots_ of drugs to get this combination, and some it took more than a month to know it wasn’t helping (though some I knew were making things worse within days). For me, the Xyzal was transformational. Interestingly, when I started taking it I didn’t feel any different at all. Even after a few weeks I was considering stopping, just because it was yet another thing to keep track of taking each day (I also take a lot of supplements, and attribute, real or not, my not getting Covid – even when my wife and son got it – to taking the supplements, particularly vitamin D3). When I knew it was doing magic was when we were getting ready to sell our ‘city’ house (where we both worked) to go live in our ‘country’ house (which my wife and I built, just the twain of us, beginning back in ‘06) since I wasn’t working any longer and my wife could work remotely all but 2 days out of every 2 weeks. I knew I was going to overdo things, but stuff had to get done and I’d do what I could then just suffer through the PEM. I was knocked down, but, amazingly, after a day and a half resting I was able to continue work!

The presumed theory behind Xyzal, or any antihistamine, is the idea your body has locked itself into a mode of fighting itself like with an allergy. Except when the allergen is gone, the physiological response continues. The antihistamines do the same thing they do for allergy, try and rein in the body’s overreaction to a more manageable level. There’s a lot of thought that CFS is some sort of autoimmune response, which has led to much experimentation with anything that works for other autoimmune diseases, like Multiple Sclerosis. Again, to my knowledge, none of this has been supported by reproducible experiments. Indeed, it’s entirely likely that what’s termed ‘ME/CFS’ (or Long Covid) is actually a spectrum of issues (diseases?) that have the same basic symptoms, but different origins, thus require different treatments. The biggest frustration is simply not knowing!

Recovery in any form can easily be a double-edged sword. I have clear memories of what I used to be able to do with impunity and only fuzzy memories of the ‘new’ me. For example, after moving our exercise equipment and setting it up, I stupidly got into a weight lifting contest with my strapping 18 yo son. We might’ve tied with the bench presses (I had been doing weights along with my treadmill (‘had’ because at present I do all my exercise taking care of our house and surroundings)) when we switched to leg lifts. Instead of being smart and starting over with low weights, I left the setting the way it was and tried to lift my legs. Couldn’t make it happen no matter how hard I strained. Nor with the somewhat lower weight. Had to go down further to finally succeed. Interestingly, I didn’t feel any pain for several days, but that dramatically changed and it reached the point I could barely walk. It turned out I tore the meniscus on both my knees. Genius. It took months to get scheduled for surgery, and since the pain slowly started to ebb away – and there’s no guarantee surgery works anyway – I decided not to have it done. I still get pain often, but it’s not debilitating _most_ of the time (there have been occasions where I’ll take the in-store scooter again, because one or the other hurts so much).

Scooters: It was _very_ hard, initially, for me to ride a scooter in the store. But it was driven home to me when I kept triggering relapses because of my hard headedness. I was going to get a handicap tag, though that felt like giving up to me, so I dilly dallied. Easier, since we had an older copy of my mother-in-law’s hang tag for when we couldn’t find a regular parking space nearby. Ultimately, out of sheer laziness, I never got one, and now (fingers crossed) I don’t need it. I had to work hard to make myself OK with being pushed around in a wheelchair when I needed to be out and about and no scooters were around, but eventually I reached an internal equilibrium. It was hard for me to be OK with letting people help. I don’t care for dependency, yet I’m fine with others being dependent on me. Go figure.

So, what now? You’ve progressed past the stage where you’re 100% vegetable to a state where you’re… less vegetable. But you’re beginning to accept, perhaps with lots of resistance and plenty of kicking, screaming and cursing, that ‘less’ veggie is as good as you can look forward to. Being able to go to a big box store without needing the scooter isn’t, to the average person, something to be excited about. And feeling excited about it can, itself, trigger depression when you think about the ‘old’ you. It sure as hell has been that way for me. What I’ve been using to keep me going, so far, is seeing the progress I’m making compared to the ‘bad old days.’ Indeed, the very writing of this blog post has helped me to realize how far I’ve come, and helps give me more motivation for the future. The challenge becomes: how to continue toward your old goals with the new you, or how to develop suitable new ones. I’ve been trying to work both angles, though without a whole lot to show for my efforts yet. But that’s providing some ‘reason to be’ that I sometimes lacked, sometimes for very long periods.

People reinvent themselves all the time. Rebuilding yourself after CFS is just another reinvention. I graduated with my MBA all set to get into biotech management, only to find no one gave a damn about an MBA, unless accompanied with a relevant PhD. Which I opted out of because of my ignorant conviction it wouldn’t matter. Because I ‘accidentally’ learned to program as part of a graduate research project, I was able to reinvent myself as a programmer. But it did take around 5 years before I started to become serious about programming as a career, after having invested a decade into biotech. I’m trying to be patient, accepting it may take a few more years before I successfully reinvent myself, though patience has never been a strong suit of mine. It certainly doesn’t help that I often forget what the heck I was thinking about before making some sort of record I can read later, but that’s just another adaptation. I email myself _lots_ of notes using my wife’s phone (I can’t stand the damn things; despite making my living as a programmer, I’m quite the Luddite), not to mention having reminders in my calendar. Complex stuff, but also simple stuff, like taking my drugs each day. I don’t delete the message until I’ve actually taken them, and there have been a few times where I had to think hard if I actually did take them earlier. I’m pretty sure I never missed a day, but I can’t be certain. And learning to be OK with that uncertainty is probably the single biggest challenge for me.

So long story summarized: be kind to yourself (rewind!) and give yourself permission to be angry, depressed, or whatever you need. Then let it go and clear your mind (Neo) and think about what you can do within your current limitations. Rinse and repeat as often as necessary, find a reason to fight to the next day.

And exercise – very slowly and cautiously. Exercise really is key to long-term success. Even if it’s just lifting your arms while you lay in bed. Recovering muscle is really slow and difficult for people who can’t push hard, so keep as much as you can.

And be OK with overdoing things. You’ll never know where the edge is if you don’t slide over from time to time. Just try to recognize when you’re there, so next time you can pull back. For me I find I start to gasp when I’m starting to overdo things. I know I’ve gone too far and can expect some time with PEM when I finally stop (over)doing whatever I’m doing and I can barely stand, let alone walk. When doing your exercises, don’t increase your time/pace/whatever until you’ve successfully worked at the same level of activity at least a week, ideally two. Or be like me and push too far, too fast, and spend more time as a vegetable drooling in front of the TV.

Good luck!

PS: I’ll be ‘cross posting’ this on another blog of mine.  No link, because I try to keep them separate.

No Time To Die

No Time To Die, the last Daniel Craig Bond, and a great send off.  Not that there weren’t issues, of course, but mostly a step back from the cartoonish Bond from Spectre, which I appreciated immensely – but did not expect.

Why watch it now, when my expectations were so low?  I was feeling down on myself for a number of reasons (my greenhouse plants are infested with scale and whiteflies and nothing I’ve done gets rid of the damn things, my tiny vineyard is infested with Japanese beetles, ditto, and my orchard produces almost nothing (and is infested with Jap beetles- ditto), and, it seems, because all our property is in a frost pocket, that’s all I can look forward to; in addition, a program I’m working on is not making much progress – and my knees hurt) and was looking for something to distract me.  Youtube was failing at that job, so I started looking at what movies I could watch that didn’t actually cost more money on top of the fees we’re already paying.  Happily, the latest Bond flick is now free, so I settled in, hoping against hope it wasn’t going to disappoint like Spectre did.

The opening is unlike any Bond movie I ever recall seeing (I’m pretty sure I’ve watched them all at one time or another, but most non-Craig are forgettable) and I was wondering at the lack of conventional Cold Open, where the viewer is instructed/assured the hero is, in fact, heroic.  NOTE: Spoilers follow!  A little girl is dealing with her drunk of a mother (what?) when an assassin shows up to take out her whole family, except dad isn’t there, so after mom gets wasted (double entendre?) little girl proves she can handle a gun, no problemo.  Except baddie must’ve been wearing some amount of body armor, or she had the misfortune of no lethal shots, as while she’s dragging the body out, baddie comes back to life and she gets away by racing across a frozen lake.  After falling through patch of thin ice, she stares through the ice at baddie who just stands there, contemplating.  Eventually, he shoots a hole in the ice and pulls little girl out, presumably for some nefarious end.

Cut to Bond on holiday with Madeleine Swann, Mr. White’s daughter from Spectre.  When’s the damn moving to start anyway?  Madeleine insists Bond visit Vesper’s grave and forgive her, then she’ll tell him all her secrets.  Bond shows up, touchingly asks/gives forgiveness and BLAMO! her crypt blows up!  OK, now we’re on to something.  Various assorted baddies now try and take Bond down as he races back to rescue Madeleine – only to find she’s just hanging around like nothing has happened!  Bond is, rightfully, in my mind, convinced Madeleine had to be involved in some way, despite all her protestations to the contrary, and leaves her at a train station, vowing to never see her again.

Five years later, a complex containing a bioweapon development project is infiltrated and the head scientist is spirited off, everyone else killed and the place destroyed.  Interesting, but where’s Bond?  Turns out, at some point he retired and is hanging out on a beach somewhere in the Caribbean.  Then his old pal Felix turns up to recruit Bond to rescue the head scientist – at a SPECTRE meeting.  Bond initially refuses, but when he finds out M had a hand in the original bioweapon development, decides to take Felix up on his offer.  A lot of interesting things happen I won’t spoil here (I was hooked by this point; if you aren’t, no point in continuing).  However, a Shout out to Ana de Armas as Paloma, not only sexy as hell, but I felt she was very plausible and realistic as a highly skilled CIA agent.  Hopefully she’ll show up in future Bond flicks.  Except will they still be ‘Bond’ flicks?

Anyway, after head scientist is rescued, only to be stolen – again, Bond is forced to work with Madeleine.  His icy facade completely cracks and it takes him several moments to repair it.  He then meets Blofeld – in a maximum security jail – and inadvertently kills him.  Bond isn’t sure who he can trust any longer, so goes with his proven stalwarts of Ms. Moneypenny and Q, then hies off to reunite with Madeleine, who has gone into hiding when analysis proves she put something on Bond that led to Blofeld’s death.  There, a very special surprise awaits.  And things get really interesting.  There’s a very long and complex chase – where the baddies never make any effort to shoot Bond, making things easy for him.  Of course, Head Baddie manages to outsmart Bond and capture Madeleine, wouldn’t be much of a story otherwise, and now Bond has to go to Head Baddie’s Lair, shoot a bunch of people and get his very emotional send off.

Oh, did I mention that they recycle the 00 numbers and there’s a new 007?  Lashana Lynch is Nomi, and there are some interesting interactions betwixt the twain of them and a lot of expected throw away lines regarding who gets to be called ‘007.’  Frankly, I expected so little of No Time To Die after the Spectre debacle I was barely aware not only was the new 007 black, but a chick as well.  I don’t have any real opinion either way, if she can kick ass as well as Bond/Craig I don’t care.  There was no point where I felt she was inadequate or some sort of Woke statement, she felt natural and exuded capability, so I won’t have any issues watching a ‘Bond’ movie with her as the star.  I hope she hooks up with Paloma; maybe Paloma can be Felix 2.0 (Felix also gets ‘retired’ during this flick).

The only real huge objection I had was fairly trivial in the grand scheme of things, but did pop me out of the story.  In part 2 of the opening, when Bond and Madeleine are on holiday, he’s driving on some twisty turny roads along a cliff and is _fully_ riding in the wrong lane as he goes around each corner.  No, it’s not at night, where he might see oncoming headlights, it’s in daylight and while we can largely see he’s safe when viewing from the helicopter (or drone), driving like that will eventually be suicide.  Unless, I guess, the road is somehow one-way, but then why have two lanes painted?  The second one was a ‘refrigerator moment,’ though it actually happened whilst smoking a cigar, so a cigar moment?  Blofeld (spoiler!) has been controlling SPECTRE the whole time he’s been in jail.  I find it hard to believe that a) any signal can get out of a maximum security jail and b) that MI6 would never think to sweep for such signals.  Yes, there were plenty of other silly things, but no ice castle or surfing tsunami like an earlier Bond, or the cartoonish elements of Spectre.  One always has to have some leap of faith and if you accept the nature of the bioweapon, I think you’ll accept the rest.

In conclusion, for anyone that really liked the non-Spectre Craig Bond, I think you’ll be very happy with No Way To Die.  If you loved Spectre as a return to the more cartoonish Bond, you might want to skip this and hope that future 007 movies will revert to the mean (I sure as hell hope not).

Fixing Your Stars – Steven A. Simpson

I beta read for Steven back in early 2019.  Due to… a certain global pandemic… he’s only just now (self)publishing his novel Fixing Your Stars.  Time travel is dear to my heart, even though how it’s treated is often uneven (for examples of really good as well as really bad, see the Terminator franchise).  While I have a few very minor quibbles, on the whole I really like how Steven handled things.  I enjoyed the idea of someone getting a knock on the noggin and suddenly becoming a math savant.  And I’m totally sympathetic to wanting to go back in time to fix a loved partner’s chronic disease.

I found the notion of No Such Agency investigating/following him around very plausible, though always felt the agent knew more than she apparently did.  And, I’ll admit, I was so focused on nefarious time cops/bandits I was totally unprepared for a rather mundane (but no less dangerous) ordinary world interaction.  I also liked the ending, a change from the usual for these sorts of things.

While being a fan of time travel may help avoiding consternation with paradoxes, I don’t think you have to be such a fan to enjoy his story.  I recommend it to all readers.

Steven’s Goodreads profile.

The Stars that Govern Us

I read Jen’s Five Fathoms Beneath as a beta reader and loved it. Unfortunately, I wasn’t able to beta read The Stars that Govern Us and it was only recently when I finally had the chance to take it on. Taking absolutely nothing away from FFB, I think Stars is better; Jen’s writing is maturing from it’s already lofty level. I loved Alec in FFB, I love him even more in Stars. It was great getting to know Pete better as well. And I was enthralled with the ‘race’ to develop the heart lung machine. At times tearful, it’s also triumphant and shows that strong wills can overcome personal demons – if they’ll allow themselves to. I can’t wait to read whatever else Jen produces, I consider her writing on par with the best authors I’ve enjoyed over my life.

Editor – Shasta Jordan

Shasta line edited a novel for me and I was overwhelmed by her feedback.  More than just pointing out poor word choices (embarrassing how many of those there were), she suggested shifts in emphasis that helped strengthen the characters, plot and story.  She also made a number of recommendations more in line with developmental editing – I think she has strengths there as well.  I will definitely make use of her services again and have already recommended her to a friend.

Virus, Etc.

This is a good news / bad news sort of thing.  Good news is I did get a job, fairly quickly AND with a 40% pay increase.  The bad news is my ‘creeping malaise’ has been identified as chronic fatigue, or, more scarily, Myalgic encephalomyelitis, and now I’ll be out of a job again.  It’s an explanation for why I’ve been feeling so poorly the last nearly year and half, not to mention progressively getting worse.  Some relatively good news is my employer has short-term and long-term disability and, assuming they don’t jerk me around (haven’t heard back from the insurance agent yet), I should be able to provide for my family without making changes to our lifestyle.  If I do get screwed, then draconian barely begins to describe what’ll have to happen to our lifestyle, starting with selling our ‘ranch’ in the country.  Fingers crossed that won’t happen.

The way CF is diagnosed is by exclusion.  Basically, the doctors try every test they can think of, results come back negative (meaning nothings wrong), but they still believe me.  I’ve had a complete cardiac workup, including being injected with, I’m sure, more radioactivity than I used working nearly 7 years in a laboratory, 2.5 of those years in the lab that used more radioactivity than the entire rest of the (Virginia Tech) campus combined (or so I was told).  Since I’m an old fat white man, it made perfect sense to check that, but, alas, I was given a clean bill of health.  Same for pulmonary, nerve tests (quite painful!), MRI of my head, hormone checks (though low on testosterone).  I’m sure I’ve ‘donated’ a quart or more of blood with all these tests.

A common complaint along with the fatigue is fuzzy thinking, or mental fog.  Looking back at my blog posts when we went to Germany for a week last June, the mental effects were already present, just not to the degree I could recognize as an issue.  That started to change a few months ago, I was actually thinking I was developing dementia.  The ‘senior moments,’ coupled with an interesting/terrifying dream, prompted me to start writing a screenplay inspired by the thoughts I was having, but it wound up short at 50 pages and I have (so far) lacked the focus to work on the excellent suggestions my editor made.

It was a coincidental reminder of CF that triggered a reread of the symptoms and when I saw ‘mental fog’ I realized that was most likely the problem.  I reached out to my GP and, after a few more tests and visits to specialists, she agreed I had CF.  She put me on a drug that’s supposed to help with the mental fog of CF patients (Cymbalta, if you care), but things seemed to get worse.  I was told by the doctor and my lovely wife (a research nurse) to suck it up, butter cup (well, they might have been a bit more polite), it can take 4-6 weeks to find out if it has any benefit.  Oh joy.  Well, one of the specialists I met with is a psychiatrist, someone who specializes in these exotic drugs, and she felt I’d do better combining with yet another drug, Lamictal, which has some scary potential side effects.  More ‘suck it up’ from the wife, so I started that.  Shockingly (not), I was worse after I started it.  As I write this, I feel slightly better able to think, but still struggle reading or writing, or, really, much of anything besides watching TV, then taking a nap when that gets too exhausting.

So what does this mean for my movie making ‘career’?  If (and I sometimes feel that’s a real ‘if’) I can regain some level of mental acuity (I have, a few times here and there, felt lucid for as long as a couple of hours, but have yet to find a way to be productive during those brief intervals), I intend to write again (screenplays as well as novels) and, perhaps, do some programming for a game I’ve wanted to write for a couple of decades and some biotech research, the reason I got a biochem degree in the first place.  Directing, though, I think will be entirely beyond me, unless some magic happens and I can recover from the fatigue (I don’t think I’ve been awake 8 hours continuous in over 4 months).  Producing is a possibility, at least in the preproduction stage, where being awake on other people’s schedule is less critical.

Where does that leave Treasure Hunt and my other projects? Well, I found two volunteers in England to help me with it, for credit.  For audio, I got Jamie Stowe (didn’t find anything to link to online) and he reworked most of the flick (except the begin and end credits).  He suggested Jamie Bulman (pretty sure that’s his website) to do coloring.  The good news is they both got their material back to me.  The bad news is I’m too addle headed to do anything useful with it to this point.  I did have a movie making friend look at the colored version (Jamie B.) and sent me a few frames of before and after and we agreed there was improvement, but at this point I’m too scatterbrained to do anything more with it.  Hopefully the drugs will reach a point where I can focus long enough to get something done (this post, while lengthy, was a pain to write – I misspell words I used to type correctly and sometimes forget what point I had halfway through a sentence; conversation can be even weirder than usual as the exact same thing happens, but I can’t go back and edit before saying it).  If so, I’ll finally create the DVDs I owe the crowd funders.

I was working on a short, called “Fuck Retirement,” that’s on indefinite hold, as is my Lily’s Party horror.  I was working with an actress intending to be writer/director for her short (well, I did write it), but, even when the virus has blown over, I doubt I can continue.  Even my billion-dollar energy idea languishes in limbo, I can’t seem to do a damn thing.  Even if I can think again, I don’t know that I’ll ever have the energy to direct, even if we keep the days short and I sit most of the time.

So, there you go.  Totally too much information.  But at least those handful of people that have been wondering why I’ve been so damn quiet can now have an explanation.  Even if it doesn’t explain anything.

Latest, Not Greatest

Biggest news is I’m (temporarily, I hope) unemployed.  Life as a contractor. I had notice, and my current employer actually got me another offer before the last one ended, but a week ago that offer was rescinded for mumble mumble reasons.  I’ve since been able to get a second offer (that comes with a whopping 40% increase in compensation: also life as a contractor), but no timing on when I’ll start collecting a paycheck again.  You’d think I’d have plenty of time to be productive and get things done, wouldn’t you?

What this means, though, is any movie making efforts that cost money have ground to a halt.  My “Fuck Retirement” short, though incredibly cheap, is on hold. Lily Horror I decided to outright cancel, though I have some hopes I might be able to revive it for late Summer.  Assuming my new job actually starts producing paychecks, I’ve begun negotiating with my wife taking some of that 40% increase and dedicating it to movie making. Which should mean being able to pay cast and crew, which should make it easier to find cast and crew.

Some good news re Treasure Hunt.  I found two guys (who I believe happen to be in England), one to rework/optimize the sound, the other to colorize.  Both appear to be making progress, both are content with reel (e.g., credit – an entry on IMDB), so that should kick the flick up a notch (or twain).  Of course, that does imply additional delay to getting disks made. And I have no ETA for completion.

I’ve tried editing the footage I have for Domestique.  The problem is while the footage looks amazing in the preview (can even see the freckles on the face of the actress), when rendered it looks like crap.  Everything I’ve tried up to this point has failed to resolve the situation. The frustration has reached a tipping point and I’m taking a break while I ponder life, the universe and everything.

I had a bit of an epiphany recently.  I’ve been trying to make some progress with Blender with the idea of potentially making money doing animation.  I realized, though, that I already have a concept related to movie making with a realistic (though low, of course) chance of making money: Domestique.  Coupled with an invention I’ve been dilly dallying with for over a year now that could (if successful, of course) be worth billions to me personally, the idea of spending time on Blender (or, really, anything that isn’t Domo or this invention) is a really bad idea.  Sadly, little has changed from pre-epiphany, though I like to blame that on this FUBARed job situation (I’m usually really good at multitasking, so that’s really a cop-out excuse).

So, there you go.  Much has happened, little has been accomplished.

Free to Good Home: Cannibal Lesbian Snuff Film

OK, I’m going to throw this out to the universe.  It’s an idea that came to me whilst taking a nap, just before Christmas, and as enthusiastic as I am about it, nearly every bit of feedback I’ve got is there’s no value in pursuing it.  If you’re a producer and this idea is interesting to you, I’m happy to be hired to write it – even direct it – so feel free to reach out.  If you like the idea but don’t want me further involved, I’d appreciate a ‘story by’ credit and to know it’s happening.

Title: Cannibal Lesbian Snuff Film

Subtitle: Featuring a lot of Gratuitous T&A

Logline: Follow the making-of an indie horror by an Ed Wood-like director desperate to escape his legacy.


Harold’s an award winning director of horror movies – the more graphic the violence and greater exposed female skin, the happier his fans.

There’s just one problem: Harold hates horror and is mortified he makes his living as a misogynist objectifying women.

He comes up with a desperate idea: make a film so morally objectionable that no one will want to watch it.

A film within a film (within a film) documenting Harold’s efforts to extract himself from his plight.

After approaching some friends and getting largely negative feedback, I asked on Reddit for some additional thoughts.  First on r/Screenwriting and at the urging of someone there, r/Horror.  Sadly, the general consensus there was the likely market was too small to have any realistic chance at distribution.  One poster, though, did suggestion the idea of a mockumentary, which I think is an excellent fit, but thought the title was too provocative.

So, with no further ado (wtf does that even mean?), here’s the 1,500 word synopsis I wrote:


Fade in to a night-time chase in progress, fully colorized and with suitable music.  Nude Woman is racing through the woods away from two other women wearing skimpy bikinis.  Brunette Bikini is carrying a spot light and a camera, while Blonde Bikini has a crossbow.

The scene shifts to that of the camera being held by Brunette Bikini.  A bit shaky and a little grainy, it shows Nude Woman from the back, waist up, running away.

Back to the HD version, the spotlight crosses Nude Woman, leaning against a tree to catch her breath.  She looks back in terror. Blonde Bikini raises her crossbow. There’s a twang and a bolt strikes the tree right next to her head.  Nude Woman takes off running again.

She steps on something painful, looks directly into the camera crying out in pain, then falls down.  The music and ambiance sounds fade. She painfully gets back on her feet and there’s a second twang. The visuals switch to non-colorized and, from the back, Nude Woman leaps forward, an arrow in her back.  Her butt is just out of sight below the bottom of the camera.


The view shifts to a behind-the-scenes look of a movie set.  Nude Woman is wearing a backless one-piece flesh-colored bodysuit and is lying on pads, the camera right behind where she jumped forward.  The other two actresses are in chairs, wearing robes, one reading a script, the other on her phone. Director walks toward Nude Woman.

“Can you get a little higher?  I’d like to get your butt in frame.”

Nude Woman stands up and, nodding, “Won’t you see my bathing suit?”

Director shrugs, “I’ll paint it out in post. It’s only a few frames.”

Still with the BTS view, Nude Woman sets up, then leaps forward onto the mat.

“Perfect.  That’s a wrap for Nude Woman.”  Everyone starts clapping. Nude Woman accepts the accolades.

Dissolve to an earlier scene.  Still BTS, the in-frame camera is setup to capture Nude Woman running away.  Nude Woman starts to run, steps on something painful, turns to look in shock back at the camera, then cries out in pain as she stumbles forward.

Director and several other people rush toward Nude Woman, various shouts of “Are you OK?”

Nude Woman rolls onto her back, clearly revealing she’s wearing a flesh-colored bodysuit.  She’s grimacing and brushes off the sole of her foot. There’s a red mark, but it’s not bleeding.  A nurse examines her foot, gently probing. Nude Woman winces a little, but gains confidence.

As everyone calms down, Director says, “Are you OK if I use that shot?  Your expression was perfect.”

Nude Woman nods, “Get the gold wherever it happens.”

Dissolve to an office.  The camera pans across a series of posters on the wall, cheap fake-wood paneling, all showing various ‘B’ horror movies, many featuring Nude Woman.  While this is happening the dialog below prelaps.

Nude Woman, “I’m really sorry.  I got the must-join letter yesterday, but wanted to tell you in person.”

Director heaves a huge sigh.  “It had to happen; you’re too good for me.”

Nude Woman: “But without you, I wouldn’t be in this position.”

Director: “When is your last day?”

Nude Woman: “The fifteenth.”

The camera finishes its pan and is on Director and Nude Woman.  He’s behind a desk that looks like it was salvaged from a junkyard.  His chair is similar and the chairs on the other side of the desk, where Nude Woman is sitting, are mismatched.

Director: “I can change your role to a victim and get you shot out by then, if you like.”

Nude Woman: “I’d love that.”

She gets up and goes around to the director, who’s looking forlornly at his desk.

Nude Woman: “I won’t forget where I came from. If you ever get big enough for SAG, send me whatever you got.”

Director looks up with a little hope, then stands.  Nude Woman gives him a hug. He returns it in non-creepy way.

Nighttime, colorized and with creepy music and background sounds, Blonde Bikini smiles in satisfaction as she kneels down to topless big breasted Victim, who’s handcuffed on the ground with her arms stretched out above her.  Blonde Bikini brandishes a big serrated knife and uses it to slowly slice one of Victim’s breasts off. Victim screams in agony.

Brunette Bikini finishes setting up her camera. It’s (grainy) recording Victim from just above her crotch to her wrists above her head.

(In HD) Brunette Bikini frowns, then walks toward Victim, brandishing a big-assed knife.  Kneeling, she slams it down into the throat of Victim silencing her. The music and background fades.  Victim stares up with a fixed expression of horror.

Upset, Blonde Bikini looks up at Brunette, “Why’d you do that?”

Brunette: “All that screaming gives me a headache.  Probably gives our viewers one to.”

The color goes away and the scene brightens.

Blonde: “It’s my favorite part.  I was planning to gut her before she died. Besides, they can always watch it on mute.”

Brunette shrugs.  “Give me a bite?”

Blonde takes a bite from the breast and hands it to Brunette.

Director: “Cut!  Perfect. Let’s get one more for insurance.  Besides, I already paid for the second prosthetic.”

Switch to BTS view, Victim lifts her hands from where they were ‘secured’ and releases the handcuffs using the built-in mechanism.  She sits up and is helped to her feet by Brunette.

A BTS look where Victim is laying on her back.  The arm next to the camera, which is pulled back some distance away, is up over her head while the other one is down by her side.  Next to her head is a sheet of clear Plexiglas and just to the other side is a block of Styrofoam. Her neck has a small amount of blood on it.

Director calls ‘Action.’ and Brunette Bikini kneels down and slams the knife into the block of Styrofoam as the camera drops to Victim’s neck.

Continuing BTS camera look, Interviewer approaches Nude Woman.  “You were Director’s lead for years, now you’re relegated to practically a cameo.  What’s the story?”

Nude Woman: “I assume you know Director doesn’t work with SAG, well I got a must-join letter.  All thanks to him, really. Director making me lead is what got me the recognition to get onto mainstream productions.”

Staying with BTS, Interviewer approaches Blonde and Brunette Bikinis about their scanty clothes and nude look.  “I admire you ladies for your… exposure while filming. Doesn’t it make you uncomfortable to wear so little?”

Blonde Bikini, gesturing to the two of them: “We’re models, so are used to wearing next to nothing and parading around in front of lots of people with cameras.”

Brunette Bikini, nodding: “Yeah.  Realistically, we’re wearing more and there’s fewer people watching and recording than usual.”

Colorized with music Blonde and Brunette Bikini are standing around a table with parts of a corpse on it.  They’re enjoying snacking on the bits when the door is busted down. Cops stream into the room shouting various forms of ‘freeze’ and ‘hands up.’

Blonde Bikini, closest to the door, turns to stare at them in blazing anger, but is otherwise immobile.  Brunette Bikini stares with a thoughtful expression, with her hands below the edge of the table.

A senior cop enters the room, “It took a while. This is the first case I’ve worked where the amount of evidence was so much it slowed down analysis.  But it’s all over now.”

Blonde Bikini pivots and runs screaming toward the cops, which all open fire at the same time and she drops dead.  The guns all shift to Brunette bikini and she continues to stare at them with a thoughtful expression.

She glances at the camera set up to record their cannibalism, shifts around, then slowly brings up her hands, one containing a big butcher knife.

Switching to camera view, she stares directly into the camera. To a cacophony of ‘drop the knife’s she takes the blade and slices her throat.  With an orgasmic expression, she slides out of sight below the table.

Credits role as the view pulls back to reveal it’s on a movie screen.  The view shifts to a podium and a presenter stands up to a spot light.

Presenter: “It should come at no surprise to our viewers that the jury unanimously selected ‘Cannibal Lesbian Snuff Film – Featuring a lot of Gratuitous T&A’ as their favorite.  I must say, the choice of title and subtitle are a fantastic decision, showing his deep understanding of genre aficionados.”

Out of the spotlight, Director sits with a deprecating look of frustration on his face.  He heaves a big sigh.

“Once again, Director is to be awarded best writer, director and editor for this masterpiece.  And I’m happy to report, he’s already inked a profitable distribution deal which will put this on all the major streaming services.  Put your hands together for the Jury’s first prize.”

The spotlight focuses on the director, who pastes a happy expression on his face as he walks to the podium.

Fade to black.

Domestique Nearing… Something

The Domestique short has finally reached the stage where the latest cut I got from the editor left me with the feeling I hadn’t wasted $5K.  Almost to the point I wouldn’t be embarrassed to actually put it to its original intended use: to interest actual retired professional domestiques to fund the project.

That being said, I’m not totally happy with it.  But my editor – who has been working on it for around 5 months now – is ready to move on.  I have to decide if I want to start over and hope I can produce something better (all while learning Blender and hopefully making a horror short) or run the risk that my proof-of-concept has enough deficiencies that it will turn off potential investors.

I’m trapped in analysis paralysis at the moment.  I got a nice shiny new mobile workstation specifically for editing (and now animation), which should have more than enough horsepower to get the job done in a timely manner, but beyond the PITA that is greenscreen (though I’ve learned better ways to remove the green without causing artifacts, when the background image requires the chromakey-ed foreground to move in relation things get complicated quickly), there’s a substantial dearth of the stock footage I feel I need to sell the story I initially wrote.

What to do, what to do…