While I’ve been open about my chronic illness, I realized I haven’t explained it as a whole, so here goes. Here’s the short version: I have an unidentified autoimmune disease that attacks my nerve cells. This causes nerve pain and screws with the part of my nervous system that controls my body’s automatic functions like heart rate, balance, digestive system, and much, much more. Yes, “screws with” is the technical term. 🤣 If you’re still interested, please keep reading.
Before we dig in, you should know I’m a happy man, living my best life. All of my needs and wants are met and exceeded. My friends and family support me. My healthcare is top-notch. I have purpose and curiosity. With short-term boosts from meds, I can travel the world. With my vivid imagination, I can visit anywhere in any fictional universe.
With that said, let’s dig in.
MY AUTOIMMUNE DISEASE
My brand of autoimmune disease is the best place to start. Broken down to basics, my immune system attacks my nerve cells, damaging or killing them.
Why does my body do this? Unfortunately, nobody really knows. The doctors’ leading hypothesis is that a virus confused my immune system into breaking down nerve cells as if they were viruses. One camp of doctors thinks that viruses like COVID have similar proteins or structures to nerve cells.
Note: My condition pre-dated long-COVID, but shares many aspects with it.
Which autoimmune disease do I have? Nobody knows. My genes, cell counts, and other tests don’t match any common autoimmune diseases. Either my ailment is rare enough to slip through the medical radar or it is understudied because there are too many weird symptoms to work with.
Even though they don’t know which autoimmune disease, we’re pretty sure it is an autoimmune disease. I test positive for a bunch of autoimmune markers. The main one is the classic roaming pain of nerve damage. For the medical-minded, I have elevated antinuclear antibodies, test positive in autoantibody tests, my immunoglobulin A and G levels are out of the norm, my complete blood counts fluctuate in and out of the norm, my sweating nerves underperform, and more.
Emotional Relief: While I wish I wasn’t sick, I am glad it is me rather than my friends and loved ones.
MY NEUROPATHY
As I mentioned, the evidence of nerve death and damage is irrefutable. You can’t throw a stone at me without hitting proof. (Please don’t throw stones at me. 🤣)
Loss of feeling
Nerve pain
Intermittent loss of muscle control
Tremor
Periodic paralysis of my face and limbs
Biopsies
Electrical responses
And more…
In my day-to-day life, nerve pain is a persistent and variable annoyance, which I can mostly ignore. Some days it’s worse than others. Most of the time I can minimize and ignore it through a combination of medication, denial, and escapism. As a reference, my normal level of pain is worse than when I had my wisdom teeth pulled last year. As I write this, it feels like someone is randomly poking me all over with acupuncture needles and flicking the needles for the fun of it. On bad days it’s on par with kidney stones all over my body, leaving me in the fetal position, completely incapacitated.
Ongoing request: Please don’t feel sorry for me. My life is better than a man has a right to hope for.
Many people find it weird that my intermittent loss of muscle control and tremors are mentally worse than the pain. Sometimes it's hardly noticeable. Other times, I’m dragging my feet and stumbling enough for strangers to offer help. Some days, when I try to type, shaking and clumsy fingers slow me down. On days like yesterday, only half of my face can smile while the other side droops. Friends and family worry more when my hand shakes at the dinner table, so I often shove it in my pocket and eat with the other hand. This isn’t easy when I have to use a knife.
Sidenote: My part-time jobs don’t require me to stand or smile. I can usually sit behind a computer for a few hours a day when my mind and body let me.
One of my big concerns is doing harm to myself. With my background level of nerve pain and intermittent loss of feeling, I sometimes hurt myself without knowing it. Sometimes I have to track down the source of blood I find on my clothes or hands. Yesterday morning, I found a hematoma (pooling of blood under the skin) on the top of my foot when I put my socks on. I had no idea it was there. Earlier this year, I had a minor tear in my rotator cuff. It didn’t hurt above the background. I only found it because it started hitching/jerking weirdly. Because it didn’t hurt, I ignored it for nearly two months until my regular checkup, which apparently is not what you’re supposed to do.
Good News: The little stuff doesn’t matter. I can hit my head on the corner of the cabinet and all is good.
(Life is better with a kitty.)
MY DYSAUTONOMIA
The part of your body that automatically balances all the things humans do is called the autonomic nervous system. Your rate speeds up or slows down without you telling it to. You start sweating without thinking about it. Your digestive system does its thing all on its own. Your eyes adjust to sunlight and shadows. Me? Not so much. My autonomic nervous system swings any which way on any given minute, hour, day, or week. On a hot day, instead of sweating, I might vomit. If I turn on the lights in the morning, my heart rate might plummet. If I stand too long, my adrenaline might spike. You get the picture.
FYI: I find all of this hilarious. For example, it always makes me laugh imagining myself with gimpy legs running to the bathroom with that butt-clenched, wide-eyed, “uh oh” speedwalk. It never gets old.
Why does this happen? The docs tell me that my damaged/dying nerve cells (remember those from before) send random, nonsense signals everywhere, which confuses my brain and nervous system. The damaged nerves that make it so I can’t feel my big toe might throw my insulin levels out of wack one day then slow my breathing on the next. The dead nerves in my left elbow may cause my nose to run. When the dying hair follicles on my thigh flare up, it could send my heart into tachycardia. You get the gist.
RANDOM SYMPTOM MAN
As a coping mechanism, I invented “Random Symptom Man.” He’s a superhero from a graphic novel that lives in my head (I can’t draw cartoons, so he won’t see the light of day). His special superpower is that his body can fail in any imaginable way without warning. One minute he can salivate like a five-time hotdog-eating champion. The next he nearly faints like an actress from old-time movies. If you want to see a guy with vertigo, hang around and it’ll eventually show up, but not until you least expect it. There is no stopping Random Symptom Man. No matter what you do (or don’t do), he’ll keep coming up with whacky body fails. All he has to do to amplify his superpowers is one of the following: overeat, drink bourbon, sleep too little, sleep too much, stand up too fast, exert himself, watch stressful movies, focus too hard, play poker, play chess, listen to loud music, breath, poop, and a whole bunch of other random crap.
Fun Fact: By definition, I’m funny if even one person laughs. Because I laugh at my own jokes, I am a straight-up comedian.
(Yes, sometimes my face balloons up like a squirrel.)
FATIGUE
Have you ever pulled an all-nighter for an exam, then sat through several classes like a zombie, worked an eight-hour shift in a computer lab, then ran home with a heavy backpack, followed by skating after your roommate’s dog before falling asleep? Well, I have.
Because I am the infinitely spectacular Lord of Awesomeness, the universe decided to balance things out by making exhausted all…the…time. Achilles had his heel. Superman had his kryptonite. I have fatigue.
Mad Skills: I have the amazing ability to nap every day, or twice, or even five times a day. If there was such a thing, I’d be a professional napper.
While napping might seem like a luxury to most people, it isn’t as stupendous as it sounds. Trust me. Losing two to five hours a day sucks. Sleeping through family time or canceling important Zoom calls because of fatigue makes me feel like an unreliable person. I used to be full of energy and count myself as dependable. Not so much anymore.
Openness: I don’t agree to online meetings unless the other person understands that I may have to cancel the meeting at the last minute because of health reasons. Almost nobody complains about it. If they do, that’s their issue, not mine.
BRAIN FOG
The great news is that my mind works just fine…for several hours on most days. I know, I know. You’re gonna tell me that your brain never works fine, right? Haha. I used to make the same joke. Depending on the severity of the hour or day, it can be as mild as slowing down my writing or as severe as forgetting how to play solitaire.
Humor: Let’s face it. Dumbasses can be hilarious. Therefore I am hilarious. Just yesterday, it took me entirely too long to figure out why I couldn’t find my right hand. Guess where it was? I was sitting on it. Try and tell me that ain’t funny.
My brain fog used to make me angry and sad, then angry and sad all over again. Up until six years ago, I built my sense of self-worth around being weirdly smart. As a professor, inventor, then entrepreneur, I did off-the-wall mental gymnastics that others couldn’t. From my perspective now, I understand that I was a straight-up genius. Losing that spark screwed me up for a while. The first two years were tough. Now? Well, it turns out that I can be happy as a dumbass. On good days I can draw from what I used to know, which was a lot. The rest of the time, I blunder through being a husband, father, author, and wannabe nerd.
LONG COVID
There are parallels between dysautonomia and long-COVID. After recovering from the typical COVID-19 symptoms, some people suffer from autonomic dysfunction. They can have nerve pain, dizziness, fatigue, and brain fog among other symptoms. Similar to my illness, doctors think that COVID or the vaccines cause a fraction of the population to suffer from autoimmune disorders like mine. In most cases, long-COVID symptoms go away within one or two months. A few unfortunate soles have been dealing with it for years and could be lifers. It sucks to report that the dysfunction keeps getting worse in a few despite medical intervention.
While it is awful to see so many Random Symptom Men and Women, I hope that the research funding going into long-COVID will help people like me.
Hope: We’re just at the beginning of understanding how the human body works. In time, new bio and medical discoveries may reverse the course of illnesses like mine.
CRASHES
We all know what it feels like to hit a metaphorical wall, whether it’s because you’re physically exhausted, emotionally taxed, or mentally cooked. When I crash into that wall, the pain spikes, random symptoms erupt, and fatigue takes over.
While writing this post, I crashed and had to come back to it twice. The first one came in the form of my brain shutting down. The second involved yacking, and then falling asleep in the bathroom.
Forest Gump: I’m like a box of chocolates. You never know what you’re going to get.
HOLISTIC CRAP
Whoever said you need to “be one with your body” didn’t have chronic pain or a chronic illness like mine. Checking in with my body as I’ve been doing while writing this post screws me up pretty good. Acknowledging that I want to vomit doesn’t help it go away. Inviting the ever-changing firebrands of nerve pain into the “here and now” makes the here and now suck all that much more. Breathing through the pain only works for a while. If it was possible to diet the symptoms away, then at least one of the various food plans I’ve tried over the years would have helped. If I could exercise my health into compliance, I’d be healed by now. Acupuncture? Despite the best attempts of experts, those needles and pressure points only made things worse (with the exception of anti-nausea wristbands). Don’t give me your celery juicing, strobe lights, organic vegan, kombucha guzzling, hot-yoga practicing ideas. I tried them. They either didn’t work or made my symptoms worse.
COGNITIVE BEHAVIORAL THERAPY
For in-the-moment aid, I recommend cognitive behavioral therapy (CBT). Through repetition of thought, I can sometimes convince myself that pain is good because it tells me I’m alive. If I’m aware enough, I tell myself that disorientation and numbness are like taking free drugs, something a bunch of people would love. When my hand cramps into a claw and my leg drags behind me, I argue against my angry side that I’m like a cool pirate with a peg leg and a hook. Sometimes these and other forms of CBT work. Other times, not so much.
No matter how hard I try, CBT refuses to help me with nausea, ringing ears, or symptoms that draw the attention of others.
This latter one is tricky. When people try to come to my aid, it’s hard to convince myself that things are good. From everyone’s expressions, it’s clear that things are anything but. I may be able to hide my shaking hand in a jacket pocket. I can play off a limp as a run-of-the-mill injury. A suddenly drooping face? Not a chance. People think I’m having a stroke. I’m too busy convincing them it’s normal to convince myself. Once, a well-meaning ski patroler kneeled over me, ready to give me CPR because I laid down in the middle of a hotel lobby when my heart rate plummeted. So, yeah, in the face of others, CBT fails me.
Revisionist History: While CBT can fail me in the moment, I almost always laugh about it after the fact. Remember that time when… You should have seen the confusion on his/her face.
RESILIENCE OR STUPIDITY
I grew up reckless. Broken nose, fingers, toes, and arms. Twice dislocated shoulder. Deep cuts. Sprains. Road rash. Concussions. Trashed knees. The list goes on. None of it slowed me down. My ability to keep going no matter what may have contributed to my illness later in life, but also prepared me for the fortitude that I’d need to live happily through the shit-storm.
There are several explanations for my prior heedless behavior:
Fortitude: I may have a stronger will than most. My ability to thrive in stressful situations could mean I had a certain resilience that helped me along the way. Perhaps constantly pushing myself helps me push through my illness. My prior successes may have taught me that there is always a way forward, which I cling to today. It’s hard to say I’m more resilient than others because it is subjective and I was dealt a wonderful life, but it is also hard to dismiss it.
High Pain Tolerance: I suspect that falling 20-ish feet at speed from a homemade zip line and immediately bouncing up and shouting in joy without any concern for pain might mean I don’t feel pain the way other people do. Maybe hiding the pocket knife I closed on my middle finger behind my back at five years old without crying or contorting my face could mean pain doesn’t bother me the way they do other people. A high pain tolerance definitely contributes to my sanity.
Stupidity: I carry a certain style of stupidity with me wherever I go. As a kid, I almost flunked fourth grade because I couldn’t read. In sixth grade, I was almost held back because I was failing math. In high school, I would climb giant redwood trees without a rope and dislocated my shoulder when I fell through the branches of one. (I hid my shoulder pain from my parents and the fact that I kept climbing without a rope.) In college, I kept taking history classes even though I couldn’t remember names, dates, or places. As a PhD student, I found new tricks in science because I was too stupid to figure out how other people did stuff. As a professor and inventor, I was too dumb to know how my crazy ideas worked until smarter people explained them to me. Now, as a chronically ill author, I’m so dumb that sometimes I can convince myself I’m not in pain even though I clearly am.
No matter the reason, stupidity, high pain tolerance, or fortitude, the resulting resilience helps me be a happy man.
(I can travel with the support of my family and a temporary boost from meds.)
PURPOSE:
It may seem obvious to most people that having a purpose, a goal, and/or a mission in life is an important factor for happiness. It definitely is for me. I have several underlying values that keep my demons at bay.
Fatherhood: Being a good dad is a core tenant and constant challenge in my life. Like everyone else, I blunder through parenthood. Only time will tell if I achieved my goal, so I’ll keep trying no matter what.
Publishing: Being an author gives me a series of challenges, some of which I discuss in my ever-expanding series on self-publishing. There is more to it though. I want to bring joy, sorrow, anger, or laughter to others. If I can impact someone through my words, then I’ve made the world a better place. I write for myself. I publish for everyone else.
Positive Force: Every person I help adds to my sense of self-worth. I know I can’t change the world, but moving the dial on someone’s day is achievable. I interact with people online, write posts, and offer whatever aid I can because it makes me feel better about my limited existence. I can’t clean up the local creek, but I can boost the moral of someone struggling with authorship. Most days, I fall short. That’s okay as long as the long-term result is in the right direction.
“Our prime purpose in this life is to help others. And if you can't help them, at least don't hurt them.” –Dalai Lama
WHAT HELPS?
The good news is that I’ve found lots of coping mechanisms beyond CBT. As varied as Random Symptom Man’s abilities are, there are ways to deal with almost all of them. As I just mentioned, lying down helps when not enough blood gets to my brain. Here is a list of modifications to my routine that help:
Medications: It’s a matter of trial and error. Some meds help. Others harm. Those that work often become less effective over a several-month period. My docs keep fiddling with my prescriptions to give me the best life possible.
Writing: Sitting at my keyboard and tapping out stories gives me a chance to live outside my body. By inventing lives, I don’t have to pay attention to my own.
Naps: My body doesn’t give me much choice in the matter. Letting my body claim me when it wants rather than trying and failing to push through changes my outlook for the rest of the day.
Parking Placards: The handicap placard dangling from my rearview mirror gives me more confidence that I can make it in and out of a store without physically or mentally crashing.
Smaller Meals: Big and/or sugary meals send my digestive system out of balance, which then messes with the rest of my autonomic nervous system.
Air Conditioning: I can’t regulate my body temp in hot weather, so A/C is my friend.
Ice Pack: Placing ice on the back of my neck where it meets the skull slows my heart rate and helps with nausea.
Modified Exercise: I have to exercise from my back. With upright exercise, my blood pressure plummets, my heart rate skyrockets, and my body collapses as I pass out.
Caffeine: I need a heavy stream of the stay-awake-juice to get through a few hours with my eyes open. Did you know there are caffeine pills? They’re far cheaper and easier on the stomach than coffee and Red Bull.
Several Glasses: The blood pressure in my eyes changes randomly, requiring several different prescriptions, meaning I squint less, which affects my nervous system.
Accessible Electronics: With randomly changing visual acuity, I enlarge everything on my computer screens and phone.
Mindset: I convince myself that pain and symptoms aren’t bad through cognitive behavioral therapy, which basically comes down to constantly telling myself everything is okay.
Low Stress: The autonomic nervous system, the train wreck inside me that refuses to cooperate, is also responsible for how you respond to stressful situations. It’s the backbone of your fight-or-flight response. So, when stress and I meet, my nervous system goes all sorts of haywire.
Salt & Fluid: With lots of salt and fluid, I can keep my blood pressure up, so that I don’t pass out as often.
Monitoring: My smart watch monitors my heart rate, reminds me to workout (even if I ignore it), and keeps me from missing my meds.
Family: I won when it comes to my loved ones. They are incredible and supportive. Not a day goes by that I don’t thank my lucky stars that they are in my life.
Jedi Mind Trick: Some people call it cognitive behavioral therapy. Either way, it’s an ability to convince yourself into good behaviors or a good mindset. For example, I tell myself that pain is good because it tells me I’m alive. Nausea is good because it means I might lose weight.
Purpose: Having a reason to get up is vital to my happiness. My motivations include seeing family, writing novels, and hopefully impacting someone's life in some small way.
Handedness: I’m learning how to use my non-dominant hand for the computer mouse, signatures, texting, brushing teeth, cutting veggies, and chopsticks. (My right hand often shakes and sometimes seizes up like a mangled claw.)
Sleep Tape: I didn’t believe this would work, but being desperate, I followed a friend’s advice and tried taping my mouth shut while sleeping. Crazy enough, it helps. I wake up more rested. Healthier sinuses and more oxygen keep my system in better shape.
(It's hard to argue with a life when wake up to this.)
ROUND-UP
You have no idea how amazing my life is. Every morning, I get to wake up and see my amazing family. Every night I go to sleep in a comfortable bed. The view is spectacular from my usual spot on the couch. My whacky brain sends me on fantastic journeys through new and unexpected realms. I have world-class medical care. My friends help me get out of the house. I can usually chop vegetables for dinner. (I think of Dana Carvey’s Choppin Broccoli skit almost daily.)
My sense of humor is intact and keeps me happier than most. I am a lucky man.
As always, I appreciate your support of self-publishing and indie authors. In the name of putting myself out there, here are a few of my works.
