Thursday, September 8, 2016

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.