FMS FML F2P: Why living with chronic pain is like a "free to play" video game.

First off: this is what my body would look like if you could see my pain:

      Video games used to be hermetically sealed worlds on disc that never changed: time capsules of the technology and sentiment of the era in which they were created. People, on the other hand, are organic beings that grow from seed and clot into sentient beings that feel and think. We change over time. Feeling and thinking - in other words, the nervous system, with our big brains, allows us to not only create fantasy worlds, but experience them as a form of escapism. There are some experiences that one cannot escape. Chronic pain syndromes and terminal diseases are among them.

I am an enthusiastic gamer and amateur video game designer. I've suffered with Fibromyalgia syndrome for well over 20 years now, but I've only really known that for half that time. Zoning out while playing video games has always been a great escape for me. Perhaps while in my chosen state of euphoria, I didn't notice my body protesting everything I was doing to it, from the way I was sitting to how long I'd been up, staring into a screen with total disregard for temporal reality. I'd always notice how I felt after a ten hour session with any given Squaresoft game from back in the SNES glory days, and I usually associated this discomfort with the way I was sitting, the junk food I was consuming, the hours staring into the abyss; I never knew I had a life-altering, incurable condition that would only worsen with time.

Video games have evolved incredibly over the ages, but I'm not sure that the majority of them are an improvement over the steady-state classics of old. Perhaps nostalgia has gotten the better of me. Many games these days have been dubbed "Free to Play". These games are often chided for being "teases" - they suck you in with the free game, often designed to be addictive, but then they limit how much of the game you can experience, that is, unless you pay for it. That's exactly why I draw the comparison between such disparate things.

I was recently made aware of “spoon theory”, (look it up, lazy! Links are for the weak) which encapsulates the connection between chronic illness and free to play games. In short, a young woman who suffers from Lupus was at a diner with a close friend. The friend eventually blurted out something along the lines of “I don't know how you do it, everyday” in reference to the young woman's Lupus. Desperate for an apt metaphor, the young woman grabbed all the spoons she could, from nearby tables, and shoved them into her concerned friend's hands as she began to explain. The metaphor resides in spoons as energy rations. Every time a person with chronic illness does anything, it costs a spoon. Run out of spoons and you can't play for free; you have to pay through the hoop for any other activities after that, or you don't play at all until the spoons have replenished. The major difference between Game of Spoons (just like Martin’s “A Song of Ice and Fire”; both can be simultaneously soothing and painful) and actual free to play games is that there is no guarantee the spoons will be at the same level after a waiting period. One cannot buy more spoons, like one does in Free to Play games, manifest as tokens. Perhaps the cost of medicine could be considered buying back into the game: a few extra resources to keep playing. Life itself is “free to play” yet it costs Spoonies, as we are affectionately known, dearly.

The more generalized term for what Spoonies deal with daily is invisible illness. When one shares their condition with the uninitiated, one often hears “but you don't look sick!”. It is not a compliment. Who wants to appear ill? I wouldn't trade my dignity just to prove a point, though I have, much against my will. Mental disorders fall under the category of invisible illness, and mental disorders often emerge from having a chronic, corporeal syndrome or disease. I chose the term corporeal rather than physical, because separating mental and physical health seems as absurd as dentistry not falling under general health care plans. If you don't have healthy teeth, you are not healthy. Corporeal, to me, encapsulates the entire body, of which the brain is no small part. If the brain isn't working, nor can the body. We are not jellyfish. I suffer from myriad mental illnesses as a result of being subjected to corporeal pain on the daily. The next time someone surmises judgmentally that “it's all in my head”, I should be quick to remind them that my head is an important part of my body. If I'm playing a video game on my computer and it starts lagging, frame rates drop, and graphical glitches start to appear at random, a PC technician would never say “oh, it's just the main processor. Your computer is fine”. The technician might say something to the tune of “your processor has fried some of its transistors. We need to replace it for maximum efficiency”. Sorry, baby. Ain't no brain transplant happening here. Even owning a gaming computer in and of itself is a game: if you don't have the right equipment you can't even play. Even in some purchased games, there is superficial content that can be purchased to give the player some sense of customization, but really, the game underneath is the same. In terms of illness, it's like putting makeup on a bruise.

My dear mother also suffers from chronic illness, albeit very different from mine. I introduced spoon theory to her and she had an astounding response. She said “I start every day with no spoons at all. I struggle to get up and get going. By the time I'm up, I've spent a few spoons I didn't know I had. By the time we are having a glass of wine and laughing, I've forgotten I had no spoons at all”. Metaphors are tarnished mirrors. Mom's approach is admirable, but she pays for it later. If she wants to stay up with her sons and keep going, she knows she'll pay for it in spades the next day.

In the game of life, we are either active players or non-player characters (NPC). NPC’s are computer controlled entities that flesh out a world, provide atmosphere, information, and often tasks. It basically means the player is in control of their avatar, but NPC’s have routine algorithms. In real life, chronic illness sufferers have a choice: be a voice and an advocate or be a tragic NPC who serves to pad the world of the more efficiently abled. In many games, I've stopped to chat with an NPC who simply repeats his suffering and has no bearing on my mission. In real life, I never want to be that guy. I need to share my pain with the world. I do not want anyone to feel my pain in solidarity - but if I am an NPC, I have some heavy tasks to assign: gather knowledge and report back with real questions. Find a way to help without condescending. If I need you to just show me funny shit on Facebook to distract me, do it. No pity. If I work with you, give me a god damned minute to sit down if I'm clearly hurting. Telling me to suck it up will either make me cry… or I'll make you cry. The aggression comes from a dark place: I am in constant pain and you are not. Do not ever try to convince me otherwise.

If the Game of Life is free to play, then the Game of Spoons is thus: you win, or you die; alone, and painfully. I've never been more serious in my life.

There is always hope. We Spoonies may never heal completely, but compassion and solidarity is very helpful to a Spoonie. We rant more than most; we rant about real pain and struggle within our catacomb bodies. If you truly care, let us bitch and moan; if it becomes too much to bear, tell us to stop bitching - but do not give us advice, unless you are doctor. Even then, many doctors don't care.

In my short time in an online Spoonie support group, I have virtually met the best people ever. They get it, which opens us up to other discussions. Imagine having to plan fun based on energy. Imagine planning work around ability, instead of a schedule. I'm luckier than most: my boss gives me the benefit of the doubt without having ever bothered to look up my condition. This is not the case with most people with chronic illness. Pride can be a direct symptom of shame. I'm learning not to be ashamed of my disability.

Chances are, someone you love suffers from an invisible illness. If they come out as such - chronically ill, give them the benefit of the doubt. If you are condescending, you might lose the most empathetic person you have ever met. Just listen and love, and know that some of the strongest people you know have crippling weaknesses. We're all playing the same game of life. It's free to play. Unfortunately, some of us can afford to play at a higher level than most.

Let's level the playing field.

FIBROMYALGIA BLUES

So yeah,

I suffer from Fibromyalgia (FMS). To the uninitiated, it is a rheumatoid condition that manifests itself as widespread, chronic pain of the muscles, joints and ligaments, as well as what I would say is the worst part of it: the fog. THE FOG!

DUN DUN DUNNNNNN...

The "fibro fog" as it is cheesily known, can range from flu-like symptoms (no flu, mind you) to simply being confused, tired, shaky, blurry vision (in my case) and total lack of concentration. I'm in the fog as I write this and my 80+ wpm typing speed has been reduced to about 20, if I'm lucky. Typos abound.

I'm writing this because I'm actually trying to get the blood flowing through my brain to see if I can conquer THE FOG!

DUN DUN DUNNNNNN...

...but seriously, this is a shitty, shitty condition that only middle-aged women and my old chef seem to understand. 90% of FMS sufferers are middle-aged women and the stigma of being a young, otherwise fit male likes to screw with almost every aspect of my life.

There are no well-documented "fibro attacks" as there are with similar (albeit much worse) conditions like multiple sclerosis, but I seem to experience "fibro attacks" with random frequency. The longest I've lived without an attack in the past ten years is four months. The last attack I had was one month ago. I was on line at the restaurant and it was like a mini-stroke. The left side of my body went numb while the right was shaking in excruciating pain. I worked through it, but as an open kitchen my customers were looking at me like I was Frankenstein's monster. My boss was very understanding, but he seemed embarrassed at the "display". I was given a break during the drama and I went out back and just cried. It wasn't even emotional, nor was it from pain. My body just lost control of itself.

FMS symptoms are brought out by stress and anxiety, both of which I used to have in spades. I've been pretty zen the past half year, in spite of my condition and various life events that would otherwise put me down. The problem I have is when I get THE FOG! I then get frustrated, stressed out and anxious, creating a vicious circle of cognitive anguish and physical pain.

I'm a cook at one of the busiest diners in Toronto. I'm a law clerk at one of the busiest firms. I'm trying to renovate my basement. I've had no time nor energy to dedicate to my own projects. I'm way overdue for some new art and design work. When FMS rears its ugly head, it ruins everything. I write this as catharsis and to help inform the ignorant and non-believing that shit is real, homie. Very real and very shitty.

If you have loved ones who suffer from this, please give them the benefit of the doubt. If you have employees or co-workers who suffer, extend patience and compassion. We are not a bunch of wimps who can't take a little pain. I'm a tough mofo; I carry a lot of scars, but THE FOG! cripples me.

I'm slowly taking steps in the right direction to better my health (firing my asshole doctor, for one) and trying my best not to use FMS as an excuse. I fight THE FOG! and the pain every day and it always wins.

One love. Thanks for reading.

J

PS: It's also incurable. Fun.

TWO CENTS FOR FIFTEEN MINUTES

Sup, errbuddy?

There is a fine line between the simply personal and the confessional. As an artist, I constantly ride the fence. Blogs are an interesting medium as they represent the digitization of the journal or daily diary, albeit in a public sphere (even if it's not published, Googly Googs knows what you're thinking... they know...). Blogs represent the temptation to type a constant outpouring of neurosis and insecurity writ large all over the internet. Even established journalists have to park the personal in favour of a broader, more objective journalism, but again, the ease of confession on such a wide scale remains Damoclean for the individual and his thoughts and opinions.

So what does a fence-rider like myself do about such a glaring spotlight? I perform well under pressure and literally in the spotlight, but any performer adopts a stage persona, even if it is only loosely fictional. The internet provides a pseudo anonymity that allows the inner devil to the forefront of argument, and boy, does that devil like to argue. Everyone gets their 15 minutes; their two cents. Unfortunately for some, that's a constant stream of back-to-back, 15 minute fame sessions and many should have gone broke by now for pitching in their two cents. Hell, if I had a quarter for every time I put in my two cents, I'd have recouped at least ten years of shoddy emotional investment at an alarmingly favourable interest rate!

I suffer from the anonymous devil inside. I think of myself as reasonable, logical if often passionate; but not blind nor deaf. Anyone with a Burner account knows this dichotomy: Burner accounts allow total anonymity as they are not linked to Gmail or Facebook or Twitter, etc. but the blind passion with which one can rant in forums can lead to an obviousness of character, solidifying the ranter as an actual, human entity on the internet. The beauty of a Burner account is when one is burnt out, so to speak, the account can be deleted forever. Not the "be right back" forever of Twitter and Facebook, but actually gone forever. As long as the browser cookies are set to remember the Burner password, the account will exist. Clearing the cache and refreshing the browser can act as a sort of cleanse for toxic, trolling activity.

Exhibit A: we've all been on one end or the other

Many have inadvertently left their indelible mark on the cave walls of the internet. Perhaps a data-mining anthropologist of the future will find my Facebook wall deep in the strata of the digital past and interpret it as an important message left for the citizens of the future. Perhaps other strata will reveal a self-important, cat and sloth worshiping culture glued to their glowing, corporate, deified altars. The galaxy of would-be stars that are every individual on the internet further proves our insignificance in the universe. After all, if everybody is a star, then we are all destined to burn out and fade away anyways. If everyone is special in their own way, then nobody is special at all.

Here's to expressing our individuality... just like everybody else.

LITTLE RED ENVELOPES AND ALL THAT JIAOZE

2014: Year of the Horse. More like 4712!

I look the part, but I am about as Chinese as the Mandarin (Ben Kingsley in Iron Man III or the plastic restaurant chain). My family has no formal meal the night of; no vegetarian cleanse the day after. This year, my mother had a culturally existential crisis on the matter when a family friend told her nothing short of "you are not Chinese enough; you need to learn your heritage". My mother is almost seventy and her friend is in her forties. 

Tough break, eh? I digress.

I am throwing a last minute Year of the Horse party at my mother's house for a few friends. It will be as sloppy and informal as it is last-minute. I write this before I've even come up with a menu. All I can think of is that this is a perfect excuse for a party. "Happy New Year" is the rough English equivalent of the only thing I can say in both Cantonese and Mandarin and even then, the Cantonese is my late Grandmother's dialect.

Relevance? There are a million other things I could be doing today, many of which are far more productive than my feeble attempts at maintaining some kind of sub-culture or family tradition.  I may look the part as I have mentioned, but then again I look the part for anything but black; though I have been mistaken for such through the sheer ignorance of my accuser and my choice of attire. Chinese New Year has always been that strange, exotic thing that I embraced as a part of my bloodline. In kindergarten, the teacher asked me to tell the class about it. I just described the glorious spread that used to push the family to the margins of the dining room on Lord Robert's Drive in Scarborough. I've never known the significance, if any.

Chow Kien & Chow York-Ying

Chinese New Year for me has always been about food, friends and family. China is no longer exotic, with Mandarin paving the way for a new lingua franca. I've been told I was "not Chinese enough" in my own time, albeit by a triad gangster addled by MDMA at a rave. If I choose to throw a party and give away jiaoze (dumplings) and booze instead of cash money in little red envelopes, is it "not Chinese enough"?

Who cares? Well, I obviously do a mote, or I wouldn't feel the need to write this. It would have been easier to go grab dim sum and then get drunk. It would have been of no significance if I did nothing, or simply joined the guys at the pub like any other Friday.

Little dumplings and tall cans of beer. That's what the year of the Horse is getting kicked off (har har) with.

To the glorious diversity of my ridiculous generation.

J

Xin Nian Kuai Le! Goong Hey fat Choy!

PS: I'm allergic to horses...

Black Holes and Revelations (Never Stop Dancing)

I was at a memorial recently for my dear great aunt Audrey Isabel Jones, 87. It was not tragic, but it was of course sad. Under the circumstances, it was so good to see family.

The reverend was a delightfully military-looking old English ex-pat in Niagara named Jeff Davison. I have the utmost respect for this man.

I am an Athiest. I capitalize the word because it is a title. I firmly believe that there is no god to believe in. All of this means I walked into my Aunt's memorial service with prejudice in my heart. I assumed that a tiny chapel in an old funeral home that was there in Niagara before the vineyards would be run by compassionate if not curmudgeonly Christians with whom I share nothing in common but this earth. I could not have been more wrong.

Reverend Davison closed the service with a sermon that caused my Physicist brother and lapsed Catholic father and I to make triple-head-turning eye contact with one another. How often does a priest at a funeral bring up how our perception of the laws of nature, math and physics has evolved to our modern understanding and that our thirteen-plus-billion year old universe was obviously big-banged into being by God?

My father said he can respect any man who is reasonably trying to reconcile a belief in the supernatural with a scientific understanding of nature. I replied that it sounds like he has reconciled.

Reverend Davison tried, somewhat stumblingly to marry a metaphor about my Aunt Aud's love of dancing with ever-changing landscapes and celestial physics. He pulled it off. He said that if you fall out of time, out of step, you will not be able to follow the rhythm of life. Fear not death for the universe is teeming with life. We are all stardust anyways.

One day the music will stop, followed by a moment of silence. That silence could be the blink of an eye, or many billions of years. It does not matter, because the music will start again.

Never stop dancing.