Free-Range Human. Ex-American. Celebrity-cat owner. In pursuit of a new axiom. Founder of etanni.
I hacked my Fibromyalgia over 15 years through technology, scientific experimentation, counter-cultural living, and damn-hard work.
This is my attempt at systematizing how I did (and continue to do) it. This will be a series focusing in (sometimes excruciating) detail on how I hacked 7 systems within the larger meta (or eco-) system of my life:
*Important Disclaimer: Yes, this is anecdotal. No, that doesn’t mean it’s worthless. The human body is awesomely complex. I am not a doctor nor a biologist. I am an amateur scientist, geek, fitness-nut, writer, programmer, and arm-chair philosopher. When it comes to medical advice, don’t seek it here. I cannot cure anything (. . . yet). But what I can do is share anecdotal and quantified evidence for what is “good enough”. “Good enough” is taking the latest in scientifically-rigorous studies and hacking them to produce beneficial results without the (extremely important but egregiously slow) official peer-reviewed scientific study to prove it. All my methods come from years of research and working with specialists. No bullshit crystals, chia rubs (it’s probably a thing) or money-grabbing diet and fitness fads. Good enough comes from research and experimentation. Good enough brings results. Good enough works.
But before I start expounding on the system, I should elaborate on my baseline and how I finally determined to take my life back from this illness . . .
(Don’t care about the personal stuff? Stay tuned for the next episode where I introduce the system.)
I was struck down with Fibromyalgia on October 10, 2003 at the age of 17 in the second month of my senior year of high school. Yeah, not the best time in life to become bedridden and socially isolated. (All that existential angst and identity crisis and all.) While everyone was choosing their colleges, ending their summer flings, and preparing for their cookie-cutter University career paths (go Private School molding!), I was living on my parents’ couch, barely able to move, unable to read or think deeply without becoming extremely nauseated, in perpetual pain, having no clue what was going on with my body and mind.
*Insert 4 months of every kind of test imaginable to figure out the cluster that was my health. Colonoscopies, GRI scans, CT scans, MRIs, lots and lots of blood panels, sleep studies, and all other kinds of fun stuff.*
Finally, in January 2005, after eliminating the most likely candidates such as Lupus, thyroid disorders, rheumatoid arthritis, Chronic Fatigue Syndrome, and Celiac Disease, a Rheumatologist and Infectious Disease Specialist diagnosed me with this very strange sounding chronic illness: Fibromyalgia.
If you have never heard of it, just know that Fibromyalgia is all-encompassing symptomatically. No part of your body or mind is left unaffected. I’ve found that the best way to describe it to people is this:
“It’s like having that inescapable exhaustion you experience when you’ve come down with the flu — but all the time. Mix that with the shooting nerve pain and intense muscle ache you get the day after being in a car accident. This is your constant state.”
“It’s like having a phone that won’t fully charge combined with that hidden background app on your phone that, unless you are intent on managing it every day, drains your battery to 15% before you ever reach the office. Every. Single. Day.”
Yes, it’s real. Yes, it’s awful. But no, it should never be an excuse to give up, whine, post inspirational quotes and images in one of your 6 Facebook support groups instead of actually doing something to make your life better. Because, you know, no one understands your pain or how awful your life is. (Yes, it’s very easy to do when you think no one understands your problems. But easy isn’t right. In this situation, easy is weak. Anyone can complain; few can overcome.) It’s a problem that has a solution. It sucks tremendously, but it’s not an excuse to not LIVE. (Not familiar with Fibromyalgia? Go here for a brief summary or here for a more comprehensive explanation. Or watch the recent Netflix Lady Gaga documentary.)
I spent the next 5 years bedridden. Life revolved around lying on the couch, listening to audio books and lectures, and extensive existential reflection. Circumstances forced me into a state of perpetual reflection, whereby the world outside faded away and my inner world became my vivid reality. When you have nothing but thoughts, time slows down and you perceive your life from without. You become an observer of self. Science and philosophy became my muses. I sought out every part of my psyche, evaluated the great historical and modern philosophies, ruminated, reflected, and repeated. For years.
However, on the physical and symptomatic side, my progress was almost non-existent. I had sleep studies, medication after medication, gluten-free (before it was fashionable), lactose-free, and all kinds of specialty diets. Nothing seemed to be helping. I still was unable to have a life of significance. I was surviving in every sense of the word. Fibromyalgia would not kill me (it’s not terminal), but in a very palpable sense, it meant the death of my life.
Fibromyalgia would not kill me (it’s not terminal), but in a very palpable sense, it meant the death of my life.
Empathy is distanced by analogy.
Then one day I changed: a friend told me to get a car, go to University, and get my life back. Yes, of course he was ignorant of the severity of my condition. How could he know what it was like to live with an “invisible” illness? You cannot empathize with one who has an illness you do not. No more than you can empathize with a mother who has lost a child or a soldier who has been taken prisoner in war. Empathy is distanced by analogy. And yet, he was right. There was nothing stopping me from regaining my life except the standard prognosis of the medical community. If traditional methods didn’t work, then it was time to start treating my own body and life as I had treated technology ever since I built my first computer with my grandfather at the age of 5: hack it.
Hacking has a bad rep outside of the tech community. Images of dark rooms lit only by an array of monitors positioned before hunched hoodie-strapped young men with over-sized headphones writing code as fast as they can type, — as they attempt to thwart impenetrable government and corporate firewalls to free the common man from their draconian overlords. (Yeah, that image was one of the first that came up when searching Unsplash for hackers.)
That’s pretty cool stuff, but that’s not what I mean by hacking. A Berlin community called SPEKTRUM has the best definition I’ve found:
A hack is a quick solution to a problem — maybe not the most elegant solution, but often the cleverest. Hacking is about using imagination and creativity to reinvent and reclaim the world — for good, for serious, or just for fun.
The reason hacking is at the core of my approach to life is because it challenges the normal way of living and then couples it with experimentation that can be tested. It doesn’t wait around for a solution to come along — it creates one.
I’ve always built my own computers, hacked video game systems to utilize the inherent power for tasks I found more useful (modchips anyone??), taken apart household gadgets to determine how they work, opted to learn through self-education when public and private was too conformist and irrelevant, etc. So why did I treat my body, mind, and lifestyle as if they too were not also systems that could be improved and optimized through more clever solutions? Analyze the system, find the flaws and weaknesses, hack, experiment, optimize, repeat.
After 15 years, I’ve optimized both my illness and my life’s axioms for personal and communal success (my eudaimonia, if you will). Everything can be hacked. Everything should be hacked.
And I want to show you how to do it.
Shout out: if you have also hacked your chronic illness or other physical infirmities that are typically considered “untreatable” (no, not cancer or other terminal illnesses) through similar rigorous means, please share it with me. I want to see how we can make this better together.
I’m still compiling all the topics and structure of the series. If you are curious about different aspects, please leave a comment and let me know. I can be as technical or personal as desired
Transparently, this is the sprout of a philosophy and comprehensive, counter-cultural approach to life I have been working on for the last 3 years. I will be revealing bits and pieces of this as time goes on, but for now, I want to work on it behind-the-scenes with like-minded individuals before casting it before the public. Suffice to say, I am hoping to carve an alternate path through the current accepted norms of life paths as they engulf money-making, living location, values, and community. I’m really, really, really passionate about it. And I’m hoping I can snag some people from these posts to join me in it.