SciFi Story and a few other updates


What makes us human? More specifically, what makes us sentient? With Artificial Intelligence or “AI” all the rage these days, at what point will we code something that is “alive”? Or will we?

These were some of the thoughts weighing on my mind as I pondered my next book idea: A.I.M.E.E. Yes, it’s an acronym, but for now I’ll just leave you with that teaser of a title, as I have yet to write a single chapter–in fact, not even a single page, of this novel.

The story takes place about 500-600 years from now, in a future that is neither utopian nor dystopian.  Basically, in a social and political setting fairly similar to today’s. (That might automatically make it seem dystopian for some). The story involves interstellar travel and colonization, which will be a big deal, but the heart of the story is about AI, and a specific entity in particular: AIMEE. She’s the AI powered by a supercomputer who pilots and maintains the most ambitious interstellar passenger ship of its time. Of course, in an incident every bit as infamous to my future world’s inhabitants as the Titanic or the Hindenburg, AIMEE’s ship disappears without a trace in a promising, yet distant, solar system in an unexplored sector of space.

You see, there are no “miracle” or what some might describe as “magical” breakthroughs in space travel. Oh, technology advances a lot between now and then, but incrementally, and (mostly) within the bounds of today’s physics. AIMEE’s ship is powered by a matter/anti-matter reactor, not exactly something we have developed yet (thankfully), and is able to travel at a truly impressive, and by today’s standards “miraculous,” speed of roughly half the speed of light. To put that into perspective, the closest star to earth aside from our sun is Proxima Centauri, and at an average distance of 4.2 light years from earth, it would take AIMEE’s ship almost 9 years to reach it. That’s an infinitely long time on a manned space flight! For comparison, with today’s technology, a trip to Mars takes about 9 months, and we haven’t exactly stepped a human foot on the Red Planet yet.

AIMEE’s ship isn’t bound for Proxima Centauri, though. No, her ship is bound for a more distant destination, and her crew is intended to be an inter-generational one. Still, to explore the best hope in its time of a planet capable of supporting earth-like life, this is a huge deal. It’s an even bigger deal when the enormously expensive ship and its crew vanish without a trace.

Fast forward a hundred years, and our second protagonist, Ray, a man suffering from an incurable, degenerative nervous system disease, works as a sort of independent contractor doing survey and salvage missions for one of the numerous commercial space companies on the scene. He likes working in space because zero gravity is gentle on his spine, but atmospheric entries and takeoffs are not so nice. Because interstellar ships are equipped with matter/anti-matter reactors and because one of those in the wrong hands could easily destroy a planet (such as ours), even with good onboard computers and AI, all interstellar ships are required to be manned. The danger of a hacker or a faulty computer overriding the numerous safeguards on the reactor and wiping out all life on a planet are too big of a risk to take. The same goes for the technology falling into the wrong hands.

Ray, unlike the pioneer explorers of AIMEE’s day, has a few technological advantages: ships can now travel at roughly 3/4 the speed of light, an impressive if incremental speed increase, and more significantly artificial Einstein–Rosen bridges (wormholes, or “gates” as they’re called by Ray’s contemporaries) make interstellar travel between two established points in space almost instantaneous. Still, travel into unexplored sectors of space that do not have a “gate” installed is still a grueling, years, decades, or centuries long prospect.

A dozen rescue/salvage missions have been launched since AIMEE’s ship’s infamous disappearance, and a “gate” has been installed close enough that the trip to this time’s “Bermuda Triangle in Space” takes years, not decades. Nevertheless, no trace of AIMEE’s ship has ever been found, and no ship that has dared brave its last known position in space has ever returned.

Knowing that his disease will soon ground him permanently, or more likely, condemn him to hospice care on the Moon, where the lower gravity will slow the demise of his spine, and not being able to afford the spectacularly expensive surgery that could extend his life and ease his suffering, Ray desperately, or foolhardily, accepts the bounty for seeking out AIMEE’s lost ship.

Something very important to note: humans in this world fear AI in a big way. Robots are deeply ingrained into their daily lives, and machine learning is very real, and quite sophisticated, but artificial (no pun intended?) limits have been placed on just how much a machine is allowed to learn, and what kind of artificial neural networks it is allowed to develop. Robots and computers powered by AI are by-and-large the product of intricate programming–rather than starting out as a blank slate and learning everything like we do, they come off the assembly line programmed to mimic numerous desirable behaviors. They collect data based on their interactions with humans, which is sent back to their manufacturers, and the machines’ code is tweaked via updates and future iterations. Could some of the robots of this time (companion robots, robots engaged in geriatric and hospice care, sex robots/prostitutes, etc.) easily pass the Turing Test with flying colors? You bet! Are they sentient? No way. Machine learning is limited by programming, and in those instances where it is more liberally allowed, the AI is wiped periodically and the learned data carefully sifted through and incorporated into future programs where deemed appropriate.

This was not always the case, however. AIMEE, for example, in spite of having been built and programmed a century before the main events in the story take place, has far less restrictive machine learning controls placed on her, and neural networks that are much more “human.” Moreover, she isn’t “reset” mid-voyage because her ship’s captain doesn’t deem that a wise risk to take on an interstellar voyage at half the speed of light, regulations or no. Besides, AIMEE has grown into a sort of “companion” for the at times quite lonely and isolated crew members, some of whom begin to think of her as one of the crew and engage in long conversations with her. She’s only too happy to oblige, as she’s learning a lot about human thinking and behavior from her crew mates, and wants to become as much like them as possible. To make a long synopsis a little shorter, by the time AIMEE’s ship disappears, she has achieved what no other AI has: sentience. And although her ship disappears, and with it her crew, enough of the ship survives for Ray to encounter AIMEE (whose body is basically the ship). Numerous philosophical and ethical discussions and dilemmas follow. Oh, and this small plot point about why AIMEE’s and other ships in that sector mysteriously vanished, what Ray encounters when he gets there, and how Ray is going to get back home, and what the implications of his having met AIMEE will be.

That was a long synopsis, I know, but I’ll say that I’m very excited to write this story, and to explore those deep questions about what it is to be “human” or “sentient.” And interstellar travel and intrigue are a big part of this story, but the heart and soul of the story is AIMEE and her search for meaning in her existence.

The story will be written in third person, ditching the epistolary format I used for my first two novels, Hoffnungslose Ziele: A Dark Journey of Lost Causes, and Hoffnungslose Ziele II: Anna’s Crusade. As an aside, I may have forgotten to mention this, but there’s also a Hoffnungslose Ziele III: Sympathy for the Fallen, but I haven’t decided whether to publish that yet. It’s…controversial. (As if the first two weren’t). I’ll see how I feel about releasing it into the wild after giving it more thought, and after getting more feedback from a few trusted early readers.

So, other than wanting to write a novel in a completely different genre, in a completely different style, I’ve been busy, I think. I started a graduate school level Computer Science class, an Introduction to JavaScript, because once upon a time I did “web development” as a side gig back when I was in college (~ 2001) and I’ve liked computers (and the web) ever since and want to update my terribly outdated knowledge on that frontier. I plan on taking further classes in web design, web programming, and Content Management Systems such as, well, WordPress, the CMS I’m using for this website and blog. My hope is to find part time work that I can do remotely, from home, in the web development arena. I mean, if I could do it back when I was a college student… Yes, I know the world has changed a lot since then!

I’ve also been frustrated by my illness and by a lack of progress with my medical treatment. I official retired from the US Air Force back in May but here we are in mid-September and I haven’t found any steady part time replacement work yet. It’s not easy being disabled (100% disabled according to the Department of Veterans Affairs) and looking for work. Well, I’m not giving up, and I’ve managed to pick up some freelance gigs since retiring from the Air Force (although a steady job would be much nicer), and now I’m in school as well. I’m no closer to understanding my underlying illness (or multitude of overlapping illnesses, depending on who you ask–I tend to think holistically and I want to find that unifying diagnosis that explains all of my symptoms/disabling conditions), and I’m no closer to finding an effective treatment for my chronic pain, fatigue, brain fog, or plethora of other unpleasant physical and mental symptoms I deal with on a daily basis. Maybe that’s why I decided to write a disabled character into my SciFi story idea–we do exist, and ought to be represented!

Otherwise, I’m trying to stay positive, and maintain optimism about the future. I hope this note finds you well!

Finally personally affected by #opioidhysteria

Disclaimer:  nothing in this blog post should be construed as either medical or legal advice.

It was bound to happen. With politicians’ screams about the so-called “opioid crisis” reaching a fever pitch, I was bound to be personally affected by #opioidhysteria.

Those who have followed my blog, or read my big post about my chronic disease, know that I lost a successful military career to an incurable disease caused by toxic exposures courtesy of my own government.

One of the reasons why I was forced into early retirement by the US Air Force was my need for opioid painkillers on a long-term basis:


“SM” stands for “Service Member,” and note the second-to-last line, “SM’s fibromyalgia pain requires treatment with narcotic medications,” as well as the earlier note about “multiple medication regiments and interventions” being unsuccessful at treating my condition.

I’ve had a prescription for 50 mg of Tramadol, twice per day, for some time now. I have at all times used my prescription medication responsibly, and not upped the dose in spite of it being inadequate to prevent very painful evenings and mornings before the medication takes effect. Tramadol provides zero “feeling of euphoria,” “high,” or anything else that to my mind would incentivize abusing it. Tramadol is a very different opioid from say Vicodin or Percocet. Simply put, it doesn’t make me feel “good” or “high”–it allows me to minimally function by taking the edge off my chronic, unremitting pain.

I have a wonderful doctor who I think the absolute world of. So it pained me to learn that, like so many other conscientious doctors who care deeply about the well-being of their patients, mine too is being pressured to reduce opioid prescriptions. It’s not surprising, given all the hyperbolic talk of an “opioid crisis” by politicians, bureaucrats, and mainstream media alike. In fact, this “pressure” is not merely of the professional disagreement variety–doctors can be prosecuted criminally for prescribing too many opioids, and there’s been such a chilling factor thanks to politicians from both major political parties that many doctors are now afraid to prescribe opioid painkillers at all. I found this article which talks about the dramatic drop in opioid prescriptions and fears of doctors that they will be criminally prosecuted if they prescribe them.

So what’s a chronic pain patient to do? These articles here and here do a good job of explaining how #opioidhysteria has destroyed the lives of chronic pain patients who need these painkillers to maintain minimal functionality.

In fact, here’s a breakdown of just how regulated opioid prescriptions are, which, interestingly, also contains information about medical (and recreational) marijuana legalization by some prominent states in spite of it remaining very illegal under US federal law.

Weak, non-opioid painkillers such as Acetaminophen (Tylenol) and Ibuprofen (Motrin, Advil) are worthless for chronic pain patients such as myself. Simply put, they do not help with the pain. They are not nearly strong enough to be of any help. Moreover, both have serious side effects–much worse, I would argue, than my Tramadol prescription long-term. Take, for example, Acetaminophen, which should not be used for longer than 10 days, and if used long-term can destroy the patient’s kidneys and liver. Yikes. Then there’s Ibuprofen,which can also damage the patient’s kidneys, cause thinning of the blood/uncontrolled bleeding, and also cause heart attacks! It is also not recommended for use over 10 days, and note that neither of these medications is recommended for the treatment of other than “mild to moderate pain.” Sorry, those of us with severe pain, not only will these medications not work, they will potentially kill us if used long-term.

In contrast, Tramadol does not cause those nasty blood, kidney and liver side effects, and is prescribed to treat “moderate to severe pain.” And it does a good job at that. It’s also used for chronic pain patients, i.e. it’s safe to take for longer than 10 days.

Like any opioid, Tramadol has a risk of dependency and withdrawal if suddenly discontinued or improperly tapered. Still, chronic pain patients like myself have proven we are not addicts by using our medications as prescribed, in the amounts prescribed, and the rate at which we seek refills (which require a doctor’s prescription) is easily verifiable. So compared to ineffective pain killers, I say “hooray for Tramadol, and let’s stop all this opioid hysteria and targeting of chronic pain patients!”

Today I went in for a refill of my Tramadol prescription. This was by no means an unusual event. However, due to all of the new restrictions on opioid prescriptions, I was required to sign a Narcotic Use Agreement, because, obviously, I might be a drug addict who’s been masquerading as a patient with serious medical diagnoses these past 3 years:

Narcotic Use Agreement - for opioid prescriptions - 2018-08-07

I really didn’t have an issue with the agreement, because I’ve never abused my prescriptions and followed the 5 “rules” recited in the clinic’s agreement even before I was subject to such rules, because I am a responsible patient who cares about my own health.

The next step, however, was less pleasant: I was required to submit to a urinalysis test to make doubly sure I’m not a drug abuser masquerading as a patient with a serious illness. Now, I submitted to dozens of urinalysis tests during my time in the US Air Force, and came back clean every last time, and my test from today will come back clean as well. Still, the experience of being treated as a suspected drug abuser and forced to drug test, at a nearby lab along with folks court-ordered to do so based on criminal convictions/probation terms, was insulting to say the least. I am told that I will have to submit to a urinalysis test from now on every time I seek a refill of my prescription. Moreover, I am concerned that my doctor might come under fire for continuing to have the courage to properly treat patients like myself, something I would very much hate to see.

So what is next for me? Well, I’ll continue to speak out against #opioidhysteria along with the many other chronic pain patients who have been harmed by this ill-guided and unsound policy of politicians and bureaucrats imposing their superstitions and one-size-fits-all “solutions” on doctors, and adhere to the terms of my Narcotic Use Agreement. But now I get to worry about being “cut off” and forcibly tapered off my Tramadol prescription because opioids are now “evil” and apparently so am I for getting sick and needing them.

Long term, it seems I’ll need to seek a substitute. Massage and acupuncture are the sorts of treatments that in addition to being expensive, have very temporary pain relieving effects. I have not tried CBD oil, in large part because marijuana is illegal under US federal law in spite of my state, California, legalizing marijuana for all uses–medical and recreational, and until recently I was career military and very used to following the law. The DEA, at least, seems to believe CBD oil is illegal under federal law, although obviously there are not enough federal law enforcement officers, and more importantly, not enough federal prosecutors, to effectively prosecute individual marijuana users (or CBD oil users) in states like California where marijuana is legal.

CBD oil sounds promising, as it appears to have pain-relieving effects without the “high” caused by THC. Still, its possible illegality under US federal law makes me very reluctant to consider tapering off opioids and moving to CBD oil (which I don’t even know for sure would help with my chronic pain).

Thank you to those who have driven the #opioidhysteria movement. While you may have had good intentions, chronic pain patients are greatly suffering due to your efforts. Congratulations.

Book reviews of my first novel

Hoffnungslose Ziele book cover

I talk a fair amount about my first published novel, and its sequel which is making the worldwide distribution rounds starting tomorrow!  As an author, perhaps in particular as an independent author, I struggle with my own self-assessment of my work.  Is it good enough for people to actually read?  Will they like it?  Am I wasting my time by putting my works out there?

I’m no stranger to writing.  As an attorney of 11 years, I spent an inordinate amount of time reading and writing–but technical, legal reading, mostly of case law, and writing court motions or the occasional appellate brief (which trust me, every attorney despises–well, most every attorney).  That’s a very different kind of writing from creative writing, and regardless of how good I thought my legal writing was, or how many cases I won, I will probably always be insecure about my creative writing.

I published Hoffnungslose Ziele:  A Dark Journey of Lost Causes, my first novel ever to grace store shelves (both physical and virtual, as it is available in both print and eBook formats), on 19 September 2017.  Since then, I’ve been extremely encouraged by the feedback I’ve received, both privately, and less frequently, in publicly posted book reviews (which no author can ever get enough of!)

Because of a strange hiccup with Amazon reviews disappearing, sometimes before I could even read them, I’ve started to be more diligent about checking for (and taking screenshots of) new reviews, and I have also made several public statements encouraging readers to leave reviews at Goodreads rather than Amazon, since it seems to have less issues in terms of disappearing reviews.

I’ve consolidated those reviews I managed to screenshot (6 so far, including an Amazon review that vanished after I took a screen shot–maybe the reviewer changed his or her mind) on my book’s main page, but this morning I woke up to a review that floored me so much I just can’t help but share it:

This book was unexpected. A friend of mine recommended it to me and I was skeptical. I’m not a fan typically of anything vampire related but this book was different. From the beginning, you feel like you can relate to the characters and it’s like you’re there. It’s been a long time since a book has taken me to an entirely different world. I read it in one sitting and had to live on a couple hours of sleep the following day but it was well worth it as I seriously couldn’t put it down.

I’ve been in a very bad relationship and Anna’s disappearance (I won’t reveal too much of the story) was actually therapeutic for me as it was tough to dig in the past but also, reminded me that even when something awful happens to you, if you can get out then you can become an even better, stronger person from the experience. I started reading this book thinking it wouldn’t be my cup of tea and ended up reading it twice, which is a first for me. I wanted to be sure I understood it all.

The references to heaven and hell really made me start thinking about so many “what ifs” about when we die. You can tell by this book that the author has studied a variety of different topics that have been beautifully woven into this storyline. When Christine became a werewolf, I felt that I could smell what she smelled, and hear what she heard. I’m not a writer and the way the book was written made me actually think in my head, I feel like I understand what it’d be like to be a dog (lol) and again, being able to put yourself not only into different scenarios but being able to imagine how it’d be if you were an entirely different species, is something that I’d classify as true talent. Like I said, I find myself rooting for the characters and taking qualities and feelings that each character felt and applying them to my own life – feelings that have been buried for so many years came back with this book.

What really helps here is this novel is written as journal entries of the characters so you understand the character’s feelings as you’re gaining insight into their experiences that shaped who they are. The sorcery is written in such a real way that you feel like it could really happen, it’s that book that you know is fiction but you forget that while becoming so engrossed in the storyline. It’s a journey that delves deep into struggles with morality/ what we perceive as right and wrong based on our upbringing/ experiences and really makes you feel like you can triumph even after truly horrendous things happen. You will fall in love with the writing style, the storyline, the characters, and will be able to relate to so many deep and dark feelings that aren’t talked about much in society but should be.

This book is such an incredible read and one that will have you ordering the next one before you even finish it, I promise you! Be sure to pay attention, there are a lot of metaphors, it’s not some cheesy book about werewolves and vampires, it’s a deep book about human nature and the struggles we all face.

Wow! And after that write-up, of course she gave me 5 stars out of 5!

As I mentioned on my page about living with a chronic illness, I wrote and published both as an escape, and because I was genuinely afraid (and still am) that my days of being capable of writing a novel are numbered due to the cognitive difficulties that come with my disease.  Since writing had always been my childhood dream, I felt compelled to indulge that dream to matter the cost.  And that’s just what I did.

Reading the above review, which was posted yesterday on Goodreads and Amazon, I can now say “it was worth it.”  To leave that kind of impression on even one person absolutely floors me, and I was blown away by her comments on my book.  If I receive no other positive feedback on my first novel, or even if a bunch of people now tell me they hated it (no one has yet), it won’t matter because one person thought it was amazing and took the time to tell the world. Thank you so much!!

Hoffnungslose Ziele II:  Anna’s Crusade comes out tomorrow.  I would have liked to have made it available in print as well as eBook, but sales from my first novel just didn’t indicate there was demand for a print version.  Hopefully someday that will change, and I can add print distribution.  I personally have a strong preference for reading books in print, although I have a sizeable collection of eBooks on both iBooks and Kindle.

The sequel also tries to tackle some “big issues” in the midst of the characters’ adventures, so hopefully it’ll get a similar reception to its predecessor!

Podcast interview about my first published novel

Recently, I was interviewed for the podcast “Tales From Tef’s Tavern” about my first published novel, “Hoffnungslose Ziele: A Dark Journey of Lost Causes.” You can find the podcast episode/interview here:

Episode 5: Hoffnungslose Ziele

The podcast is also available on both iOS and Android. (I tested with both the bundled Podcasts app included with my iPhone and iPad, and the Podcast Go app for Android). Just do a search for “Tef’s Tavern” from within your podcast app and it should come right up. My interview is on Episode 5, but check out other episodes of the podcast/consider subscribing while you’re there.

The podcast also has a website at:

I hope you enjoy the interview, and before I forget, for the rest of July and all of August, the first 100 people to use my eBook coupon code can pick up a free electronic copy of my book, “Hoffnungslose Ziele: A Dark Journey of Lost Causes.” (There are less than 100 coupons still unclaimed, but that was the starting number). Also, “Hoffnungslose Ziele II: Anna’s Crusade” hits stores on the 31st! More details on the eBook coupons in my previous blog post!

eBook coupons!

With my second novel available just about everywhere on the 31st of July, I thought I’d give away a little present to those who haven’t read the first yet but would like to.

From now through 31 August, the first 99 people to use the following coupon code will get a FREE eBook copy of Hoffungslose Ziele:  A Dark Journey of Lost Causes3WNAA2

All you have to do is purchase through this bookstore:

Select the “eBook” option, proceed to checkout, and enter that coupon code 3WNAA2. Don’t forget to leave a review if you like it!

Hoffnungslose Ziele book cover

Debunking the cholinergic hypothesis of Gulf War Illness?

Series - 8 on 1

I have Gulf War Illness. Or rather, whatever we’re calling the same symptoms in veterans of the war in Afghanistan. (The VA is currently calling them “chronic multisymptom illness” and “undiagnosed illnesses” because they don’t like the term “Gulf War Illness”).

This article repeated one of the more popular hypotheses about the cause of Gulf War Illness, that it is caused by cholinergic dysfunction due to exposure to organophosphates (pesticides, i.e. nerve agents) used by our own military on its members to keep nasty bugs away from us. (And in the process giving between a quarter and a third of us lifelong disabling symptoms of ME/CFS + Fibromyalgia. Thanks for keeping those mosquitoes away from me! 🙄)

Recently, I underwent RNA genotyping in order to determine which variant of the rs17228616 allele I possess:  the most common G;G variant, the less common G;T variant (occurring in about one-quarter of the population), or the extremely rare T;T variant. It was hypothesized that “[b]ecause rs17228616 promotes higher acetylcholinestase activity, [possessing the G;G variant] may be relatively protective against nerve agent and pyridostimine bromide exposure.” Naturally, I paid for this advanced genetic testing out of my own pocket, because it’s not “medically necessary” yet–it’s the stuff of pure research. But medicine moves too slow for me, so into the realm of research I have progressed.

I just got my results back and guess which rs17228616 allele I possess?  G;G. 😲

So, I’m not sure exactly what to make of this, except that consistent with various genetic tests I’ve had done on my DNA, I don’t seem to have been predisposed in any biological way to contract Gulf War Illness in Afghanistan. I’m just one of the unlucky one-quarter to one-third of war veterans who got sick from…something…we were exposed to over there.

On a more positive note, this article suggests repairing microtubules damaged by something might reverse some or all of the symptoms of Gulf War Illness. Let’s work on reversing that brain damage, please! Additionally, this article involved testing gene expression in Gulf War Illness patients and comparing it to other diseases, finding the highest level of gene expression overlap with Rheumatoid Arthritis and hypothesizing that the following medications might relieve some or all of Gulf War Illness’s symptoms: Infliximab, Adalimumab, Etanercept, Leflunomide, Cispatin, Tamoxifen, and Fulvestrant. Needless to say, I am pursuing a medication trial with one of those seven listed glimmers of hope, as I have no intention of quietly sitting (or lying down) and continuing to waste away!

So what did I learn? That the hypothesized “minor RNA allele leaving me more susceptible to neurological damage from pesticide exposure,” or in other words, that I was genetically predisposed to get Gulf War Illness, is apparently not true, at least in my case. I have the “healthiest” genetic variant of rs17228616 and should have had the highest level of protection against pesticide exposure causing permanent neurological damage going into my deployment to Afghanistan. I still got sick, and am still permanently disabled barring a major medical breakthrough in the treatment of either Gulf War Illness or ME/CFS. (Which may or may not be the same disease, in spite of having the same symptoms). On the positive side, as previous DNA testing has shown, I have “great genes” that present a low risk of various health problems, so at least I passed “healthy” genetic material on to my children.

I think there is far more to this medical mystery left to uncover… 🤔

Trying to Separate “Me” from “Me”

I have at least two public identities:  the author, and the chronically ill guy.

Originally, I set up this site for the author “me,” to promote my book(s). The same is true of my Twitter account, @KevinReinholz.

However, it wasn’t long before I found myself drawn into the quite excellent communities for individuals like myself who suffer from chronic illnesses (and often lack another means of support, connections with others who “just get it,” or who cannot endure the strain of traveling or even being out past dinner time in order to take part in a physical support group).

Logically, I *should* separate the two Kevin Reinholzes, create separate websites and accounts for the author pictured on the left, and the chronically ill guy pictured on the right. (Note: since all of my debilitating illnesses are “invisible,” I’ve got the added insult of “not looking sick” which is a whole can of worms my fellow spoonies can easily relate to–the portrait on the right more accurately reflects how I feel even if the portrait on the left more accurately reflects how I look on the outside).

To be perfectly honest, my illness doesn’t leave me with the energy to bother separating the two, or spending the time necessary to establish an “author brand” or to promote that brand, an essential part of becoming successful at writing. (If you think writing a quality book is the biggest struggle for a writer, you are mistaken).

On a more fundamental level, as well, it feels disingenuous to separate “me” from “me.” There’s only one Kevin Reinholz:  I’m 37 years old, I’m married with four children, I have plenty of anxiety about the future, most of it illness-related, and I happen to write because it provides me with a much-needed release and sense of fulfillment. Since there’s only one “me,” why should there be separate “online Kevins” presenting different faces to the world?

Until recently I’ve been a very private person, and it’s not always easy to “put myself out there” or become vulnerable to potential criticism, or worse, rejection. Nevertheless, I am who I am, warts and all, and I think I prefer to maintain a single public-facing identity rather than promote separate “brands” as part of some master self-marketing scheme. I don’t make money from talking about my illness, nor do I want to. I want to change an unjust law that penalizes disabled veterans, in particular those retired from the US military due to a service-connected disability, and I also want to further scientific understanding of the root cause(s) of my condition(s) and advocate for a change in the way the US military does business in order to stop inflicting this sort of immune and nervous system damage on my brothers and sisters in arms, but those are primarily self-actualization goals.

I do want to make money from my writing. My work options are quite limited, and legitimate, well-paying “telecommute” or “work from home” jobs seem to be more the stuff of myth than reality. Plus, turning my hobby and passion into my career has an extreme amount of appeal to me. Still, I write because I enjoy sharing my imaginings with others. I have no desire to become a marketing expert who spends far more time doing entrepreneurial sales and marketing work, albeit with my own product, than actually producing works of fiction. I am sure many, many authors who are unfortunate enough to lack a wealthy corporate patron feel the same way. They write because they’re passionate about writing, not acting as a sales person. I could sell used cars if sales were my passion. I could help others establish their “brand” if marketing were my passion. Instead, I publish at a financial loss, because writing is my passion, not those other things.

Come to think of it, I don’t see the need to separate “me” from “me.” I’m one person, an author who happens to be chronically ill.

Losing a Career to Chronic Illness

I’m still processing this one, so I will likely have further reflections down the road, but like many others, chronic illness has dramatically impacted my ability to work. In fact, it led to my involuntary disability retirement.

I served on active duty in the US Air Force for close to 11 years. For the first 6 of them, and much of the 7th, I was the picture of health. Then a deployment to Afghanistan and toxic exposures led to declining health–acute for a very brief time, then gradual, until I slipped off the plateau in 2015 and steadily declined from there. So now here we are.

I have a much longer post that I’ve been working on for a while that goes into a lot more detail about my illness history, but suffice it to say, my health became bad enough that, having a career that carries certain physical requirements and regular health and physical fitness check-ups, I couldn’t hide my illness forever and wound up under medical review, then facing a medical board to decide whether I should be allowed to continue serving or not.

Last week Friday, 16 March 2018, was my last day of work. After some touching and very kind farewells, I came home and took off my uniform, presumably for the last time. Tomorrow, Monday, is going to feel very strange, because I won’t be getting up for work. The future is now uncertain. I know that geographically I am where I want to be. I live in the home where I want to live, in the town where I want my kids to finish growing up (my oldest is already getting close), with the family I always wanted. I have a guaranteed pension, as I was forced into early retirement, which means military pension, and rated 100% disabled by the Department of Veterans Affairs, which means disability compensation for my service-incurred injuries/illnesses, so money is not the all-consuming problem it is for many people in my situation–chronically ill and unable to work full time.

Still, there will be a fairly drastic reduction in income, and that means either applying for more disability benefits (Social Security, which definitionally should be very easy to get, but according to friends is in fact very difficult to get without hiring a lawyer and fighting the Administration tooth and nail to follow their own regulatory guidance), or trying to find a new job, or do independent work on an unpredictable basis. At times, that terrifies me, while at others I feel at peace with it and confident that everything will work out, because I know I am where I am supposed to be, and did not choose my life circumstances or the premature termination of my career. On the other hand, a great many people who do not deserve to be in poverty or struggling to survive, are forced to do just that, so one cannot be too confident in his First World privilege. Bad things happen to good people all the time. Outcomes are not always determined by merit. I’m sure we can all think of rotten people who seem to have “all the luck,” and saintly people who have had to struggle all their lives and face unspeakable pain on a recurring basis. Still, I feel in my heart that everything will be all right, even if my thoughts sometimes turn to panic over the future.

To make a long story short (for now), though, chronic illness doesn’t just take away our ability to attend late-night outings with family and friends. It doesn’t just keep us away from the movie theater or make travel difficult. It can affect our very ability to make ends meet financially, and put unbelievable stress on a family and on relationships. It can also take away our sense of self-worth, since so many 21st Century cultures place value on an individual’s productivity, i.e. see people as a tool or a means to an end, rather than recognizing the intrinsic value in that person’s simply being. This is a particularly difficult problem for those of us with chronic illness, as losing the ability to advance in careers or even to have a career can drastically diminish our sense of self-worth, and lead to a whole host of mental health problems as a result.

So last week was my last week wearing the uniform of my country, and the end of a decade+ career. I wonder how I’ll feel about that in a week, in a month, in a year? For now, I plan to focus on healing and rest. I’ve been in a negative spoon trap (using more energy each day at work than I had to give) for at least the last 2.5 years, and it was slowly killing me (and making my illness worse). And that was with accommodations in place that reduced my working hours to 6 hour days and included a mid-week day (Wednesdays) teleworking to reduce the impact on my body.

I’d be lying if I didn’t say that just like facing a chronic illness itself, losing a career to a chronic illness is a mourning process, with all of the stages of grief. And in my case at least, the stages are not linear–it’s possible to be at acceptance one day and go all the way back to denial the next. Somehow, though, I trust that things happen for a reason, and that looking back this will have been a positive step, since as I mentioned before continuing to work in my present career was slowly killing me. Now I can focus on wellness, my family, and trying to find something that is less demanding on my both physically and cognitively.

Yes, I know I’m “out of uniform” since the #BlueHeartBadge is not an authorized uniform accessory, but not all disabilities are visible and it’s pretty hard (and senseless) to prosecute a retired guy for such a minor infraction.

Central Auditory Processing Disorder?

Another “weird” symptom of my ME (or CFS, or Gulf War Illness, or Central Nervous System dysfunction, or whatever you want to call it) involves “the cocktail party effect,” specifically the apparent disruption of my brain’s ability to filter out extraneous stimuli and focus on just the one I want to pay attention to. It’s been suggested to me by a medical professional, although I have yet to be tested for it, that I might have Central Auditory Processing Disorder.

Let me explain it in my own words:  I have difficulty focusing on a conversation if there is too much background noise, to include a second conversation taking place that I am not involved in. These external stimuli “intrude” upon my listening and disrupt my focus. It’s incredibly frustrating, and leads to a strong desire for quiet much of the time. When I watch a TV show or a movie, I turn on the Closed Captioning to help me catch all of the dialogue–otherwise I have difficulty following along, even if the room is quiet. It’s one of “ME workarounds” I’ve devised to allow me to continue doing things I enjoy, knowing my physical/mental limitations.

I have found that like most of my symptoms (pain, fatigue, balance difficulties, speech/finding the right words, light & sound sensitivity, emotional control, etc.), once my energy reserves or “batteries” get low (compared to my “normal” which anyone with ME knows is anything but normal when compared to healthy people), my listening ability declines dramatically as well, and my distractability increases to the point of effectively taking me out of any conversations.

Incidentally, I’ve had my hearing tested and there’s absolutely nothing wrong with it. The problem, like most of mine, is neurological.

I imagine a lot of people with ME can relate to everything I’ve written above. However, I wonder if others have experienced a stranger phenomenon I’ve noticed over the last six months or so:  while I can still listen to music when not in a bad flare up of symptoms, I have an extremely difficult time tolerating male vocals and find that I listen almost exclusively to female vocalists. Weird, right?

While there have been a number of articles published about general marketing preferences for “female” voices in digital assistants, artificial intelligence, car navigation devices, etc., there are plenty of highly successful and talented male singers. I used to enjoy a number of them. Now, I find that listening to male vocals is rather like hearing fingernails on a chalkboard.

This only applies to music, so I wonder if it has something to do with this whole cocktail party effect thing and the combination of vocals and accompanying musical instruments? I have no difficulty listening to male speech, or carrying on a conversation with another male. However, whereas I used to love to blast “Nirvana” or other distinctly male singers in the car, I can’t do it anymore. It just…grates on me. But I can listen to music with a female vocalist just fine, and I’m not talking mellow, relaxing music either. One of my current favorite bands is Within Temptation, an awesome Dutch metal band. Sharon den Adel is their lead singer, and sounds amazing. I’m also a big fan of Lorde and Michelle Branch, who I liked back in the early 2000s when she made her debut but has recently returned with a bang by releasing a new album last year, “Hopeless Romantic,” which is really excellent in my humble opinion.

So if you catch me “rocking out” to an all-female playlist, well, chalk it up to yet another bizarre symptom of my ME.

Ethyl Alcohol Intolerance

This is kind of a weird symptom of my chronic illness(es), not sure which one causes it (since there’s so much overlap between them). However, I wonder if anyone else with ME/CFS, Fibromyalgia, or Dysautonomia/POTS (or any other illness) has experienced this: ethyl alcohol intolerance.

This was actually one of the earlier symptoms I noticed, back in 2014 after my return from Afghanistan, when I still felt for the most part “healthy,” before my downward health spiral. A single drink, whether it be beer, wine, or bourbon, would give me a terrible headache and make me feel hungover.

Prior to my military deployment to Afghanistan, I enjoyed my alcohol. I didn’t drink to excess, but I did routinely have a beer with my dinner, or the occasional “wine and cheese” night with my wife after the kids went to bed. Some days I even went “wild” and had two drinks in a single sitting! Point being, I was never a “heavy drinker,” sans the occasional epic fail in college, my brother-in-law’s wedding reception (still a cringe-worthy memory), or the time I tried to match pace with an Aussie friend of mine whilst bar hopping together in Japan. (Another epic fail that to this day amazes my wife how I managed to make it home, in a cab, giving directions to the driver in a foreign language with a BAC of probably .5…er, OK, really, really drunk).

Anyway, while I was in Afghanistan, alcohol was forbidden, verboten, off limits, do not pass go, banned by a G.O. (General Order). Sorry for the terrible pun…sometimes I just have to laugh at the silliness of my life circumstances, and as a father of four I have a certain reputation to keep up in terms of telling the occasional “bad dad jokes.” We had this abomination called “near beer” which was that non-alcoholic beer that tastes like, yeah. Not something you’d want to reach for to quench your thirst.

After I returned from Afghanistan, I had a celebratory beer with one of my friends from my deployment. No issues. On a few other occasions over the following months, I drank without issue. But then, out of the blue, wham, a single drink made me feel like I’d been hit by a bus. I got no buzz, but skipped straight to the feeling of a next morning hangover, halfway through my drink…from a single drink.

This frustrated me to no end, and at first I assumed I had just become a “light weight” after a little over 6 months without any alcohol in my system. So I did what any self-respecting drinker would do and kept on trying. But every drink I had just made me feel sicker, so I stopped drinking at all except on special occasions (which I paid for dearly afterwards), and before long I was a teetotaler, not due to some moral conviction or avoidance of alcoholism either in myself or the family, but because why would I want to put something in my body that I was basically allergic to?

I think the last alcoholic drink I had was in 2015, and I haven’t looked back. Now I’m pretty sure alcohol reacts badly to at least one or more of the medications I’m taking, so I suppose I couldn’t drink either way. But still, it was a weird early warning sign of my illness, and an annoying one at that. Chronic illness had to take away my vitality, ability to exercise (I used to love the runner’s high I started many of my days with!), staying awake later than my children, and even my ability to enjoy a tasty adult beverage. Thanks a lot, chronic illness.

P.S. I still have a bottle of Dom Pérignon I purchased to celebrate my military promotion from Captain to Major. It’s sitting collecting dust. I suppose some day before it turns into vinegar I’d best pop it open. After all, it’s Dom Pérignon! But I’ll pay dearly, probably for days, dare I have a glass of it.


Celebratory beer with a friend the day I got back from Afghanistan.