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.

Being Chronically Ill

Well, I suppose it’s time I “came out” about having a chronic illness. In truth, those who follow me or who have read my comments on others’ posts on Twitter, where I go by the oh-so-original handle @KevinReinholz, already know that I have ME/CFS and Fibromyalgia, and Dysautonomia/POTS, among other conditions.

It’s funny, I started this website not with the intent of blogging, but in order to promote my book, Hoffnungslose Ziele. That was the realization of a childhood dream of mine. The motivation and sudden urgency to make that dream of writing and publishing a novel became a reality due to my illness, which for the past 3 years has been slowly robbing me of so much else in my life. For me, stubbornly persisting and creating something out of my imagination and then releasing it into the wild was my way of resisting my illness and the many limitations it has placed on my life.

I have written a very long page about my illnesses, the history, the struggle to get diagnosed, and the impact on my life. I’m not ready to “go public” with that just yet, so please bear with me if you’re interested in a long read about my evil health woes. Meanwhile, I just purchased Jen Brea’s film documentary “Unrest” and would put that out there as a “finally!” in terms of bringing attention to the oft-neglected and much-derided (but horribly debilitating) illness of ME (aka CFS). Everybody should see it. I’m not going to try to claim that my personal experience has been the same as Jen’s, because it hasn’t. Each patient is unique. But I do think her courageous work shines a much-needed light on a health epidemic that has been very much ignored and neglected.

I had no intention of ever going public with any of my illnesses. I planned to present a happy, confident public face like so many of our friends and families do on platforms such as Facebook (which I really don’t enjoy these days because it is so incredibly fake, largely snapshots created by people at their very best, or political whining and memes, or competitions for attention over who has the most drama in his/her life). After all, I was promoting a “brand”: Kevin Reinholz, freelance writer/author extraordinaire. I’ve been a relatively private person for quite a long time. Part of that was getting burned in the past for being too open, part of that had to do with professional considerations, and part of that had to do with a desire to protect/shield my family. A public person I was not.

Suffice it to say, something changed. I ventured out into the world of Twitter (which I have come to enjoy quite a bit), and between enjoying reading posts by my favorite celebrities and the occasional news story, I tweeted the occasional thought or promotional post related to my book. Then I read about a young woman suffering from two of my most debilitating conditions–ME/CFS and Fibromyalgia–on my go-to platform for news, the BBC. (Sorry, American journalists). I was absolutely appalled by her government’s heartless treatment of her disabilities, which struck a familiar chord with many of my own fears and insecurities about my own diagnoses as well as my future. So I reached out to her on, where else, Twitter.

That’s when I started making friends on the platform, friends who suffered from the same “invisible illnesses” I do. Friends who understood what I was feeling because they were feeling it themselves. There was something extremely validating, even comforting, in knowing that others felt and suffered as I did. Granted, I wouldn’t wish my illnesses on my worst enemy, but knowing I wasn’t alone meant a lot.

I was also impressed by the courageousness of this particular woman in going public with her chronic illnesses using her real name–no hiding, no pseudonyms, facing the full brunt of Twitter trolls and heartless idiots who don’t know the first thing about either her or her illnesses. She became somewhat of a hero and a role model to me. I respect her immensely. So, I resolved to try to emulate her, even just a little, by going public with my own illness story, in the hope that others unable or too afraid to go public could read about my experiences and feel validated about their own. In truth, I’ve already let most of the proverbial cat out of the bag, in the course of publicly conversing with my #spoonie Twitter friends.

I don’t expect to ever have nearly as many followers as my #spoonie hero, or as powerful of a voice, but in my own small way I hope to contribute to the conversation and the solution by lending my voice to the cause. More to follow as I save up enough spoons to write!

Hoffnungslose Ziele Coupons!

Happy New Year! As a gift to bring in 2018 right, I found a way to give out coupons for my book!

Coupon Code XBCAW9 will get you 75% off the eBook

Coupon Code TNZMCX will get you 50% off the paperback!!

Only catch is you have to purchase through this storefront:

Happy New Year and enjoy the book!

Hoffnungslose Ziele II Page Created

It remains unpublished for now, but I created a page for the sequel to my first published novel.  I don’t advise visiting the page unless you’ve read the first, or don’t mind spoilers, but Hoffnungslose Ziele II now has a home in cyberspace.  I think I’ll release it around next summer.

Hoffnungslose Ziele book launch delay

Sadly, the release of Hoffnungslose Ziele:  A Dark Journey of Lost Causes, has been unavoidably delayed…but only for a short while.  Expect to see it by the end of September.  It came down to quality over speed, and while the manuscript’s been completed for some number of months, there is a lot that goes into publishing a book, and I wasn’t willing to make design compromises for the sake of pushing it out faster.  I hope it’ll be worth the wait and that you’ll enjoy it!  One bonus of the delay is a new and improved cover–I think you’ll like it, as I do.  Stay tuned!!

On another note, I finished my first draft manuscript for Hoffnungslose Ziele II:  Anna’s Crusade.  My plan as of this moment is to publish it sometime next year.  Whereas the first book focuses more on the thoughts and feelings of the main characters during their youth (18-25ish), the second book explores middle age and some of the challenges that entails.  In a way it was easier to write, since I didn’t have to try to re-imagine or recapture my own youth–I could simply reflect on my present.  At any rate, I hope you enjoy both!