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15 Minutes of Fame: Dislocated but not disconnected

15 Minutes of Fame is our look at World of Warcraft players of all shapes and sizes – from the renowned to the relatively anonymous, the remarkable to the player next door. Tip us off to players you'd like to hear more about.

We've written about disabled gamers before, but Lileya of Lightbringer-EU brings a perspective to playing WoW that we haven't heard. Lileya's disability is a rare, lifelong condition that makes even the simplest tasks impossible some days. From her ankles to her knees, from her fingers to her shoulders, Lileya's joints dislocate at the drop of a pin. Even stacking up a Lifebloom roll can dislocate her wrist. "I don't have all that much in common with Aaron who has recovered enough that he can walk without assistance and drive, or Kalzedhan who plays for 12 to 14 hours a day, or Catten," she muses. "I have a rare genetic disorder that I have never lived without. My life is very different from theirs."

Lileya's relentlessly frank, articulate blog, In the Fringes, exposes what it's like to live with the horrifying prospect of keeping track of all your joints on a minute-by-minute basis. We visited with Lileya for a two-part interview exploring how her love of end-game raiding and her struggle to balance a precarious collection of symptoms and physical challenges keeps her connected to WoW and to life.
Main character Lileya, Resto Druid
Server Lightbringer-EU

15 Minutes of Fame: Lileya, can you tell us a little bit about the disease you have and its day-to-day effects?
Lileya: I have a rare inherited connective tissue disease called Ehlers-Danlos Syndrome (EDS). It is caused by gene mutations that impair the structure and function of collagen. Collagen makes up about 25 percent of all protein in the human body, and proteins are essential parts that play a vital role in almost every process within the body.

Depending on the exact gene mutation, the effects in those with EDS vary. For me, the effects are widespread, and few things work as intended. ... The day-to-day effects are pervasive and persistent. It affects everything I do, every minute of the day.

I get up in the morning, and the first thing we do is check to make sure that all my joints are in place -- which they rarely are. I need help sitting up, and the first thing my husband says when I put my feet on the ground is "Slowly, let's not dislocate those ankles standing up.'" Each day is different but the same.

I have a very long list of chronic symptoms that we manage as best we can and then there are the unpredictable spikes of quasi-medical emergencies to keep life interesting. I say that being sick is a full-time occupation, but that's not entirely correct. It's one of those jobs where you live and breathe your work -- and in addition, there are no days off or vacation time.

How did you get into gaming (and more specifically, World of Warcraft)?
Like most female gamers I know, I wouldn't have gotten into WoW if my husband hadn't dragged me into it. It started with subtle coercion, like links to interesting WoW articles and video clips of various Azerothian things, and slowly progressed to more actively involving me by showing me the cinematics and asking questions like "Which race appeals to you?" and "Which class would you pick?"

I finally created a Night Elf Druid on a 10-day trial account, and as my gaming experience begins and ends with Sim City, it took a large amount of explaining and hand-holding to get me started. I went into the hospital shortly after for three weeks, and on unpacking my bags, discovered the WoW gaming manuals, a WoW graphic novel and adequate reading material along the lines of "what is a tank" and "how to make your character move."

I arrived home to a fully installed WoW, with customized key bindings and a few macros already set up, and dove right into it and never really stopped. I think he read one of those articles with a title along the lines of "10 steps on how to get the woman in your life to play WoW" and pulled it off brilliantly.

How would you characterize your playstyle?
I enjoy the variety of the game. I fish, I quest, I level progressions, I dabble a little with achievements, I do a bit of PvP and am just getting into the collectables, like mounts and small pets.

As much as I enjoy the variety of the game, I must admit that I love end-game PvE content the most. I find it challenging, fun and therapeutic. I have both a physical and neurological condition, and what is generally considered to be easy content (at the moment) presents quite a challenge for me. I have to carry out what are, to me, quite complex physical and mental tasks within a set time frame. I have to adapt to situations, make quick decisions under pressure, follow both a strategy and verbal instructions, and I have to do all of this in a social environment.

Playing with 24 other people in the chaos that is Sarth+3 or Malygos phase 3 for me has strengthened some of my more positive character traits and has made me face and overcome some of the less positive ones. I love raiding. I wish I could spend more time doing it.

How so? What sort of challenges does raiding present for you?
Communication, coordination and timing are the biggest raid-specific challenges that affect me. I have difficulty hearing and interpreting auditory information, particularly when there is noise in the background. A 25-man raid is a noisy place to be, and although I restrict gaming sounds to the absolute minimum, some sounds are vital and can't be muted. Raid encounters often rely on continuous verbal instructions and unless I can anticipate these, I tend to miss them.

Coordination and timing is vital in raiding. Doing what I am supposed to do when I am supposed to do it presents quite a challenge. I am a little slower than the average person to make sense of what I see and hear, and I also have delayed reactions that are clumsy at best.

I compensate with careful planning and anticipation. If I know that I may be asked in a second to battle rez a specific person, I can think about where my hands need to go in order to carry it out so that when I am asked, I can simply do, no thought required as I've already thought it all through. The combination of musculoskeletal and neurological problems I have make it difficult to carry out all the different components that make up a boss fight even when everything goes according to plan, which it hardly ever does.

What about the purely physical challenges?
On top of the in-game challenges, there are also the non-pixelated challenges. My fingers and wrists aren't reliable, and compensating for dislocations is tricky, as repositioning my hand means that I no longer know where the keys are.

Fatigue is a problem that rarely gets a mention, and it should. A three-hour raid is a marathon for me. I usually have at least one asthma attack and three or more dislocations during that time. My muscles tire easily, and using my hands for that length of time is difficult. This is also usually the point where we reach the bits I find tricky: Instructor Razuvious with only one priest in the raid, Thaddeus and the dreaded jump, Sapph and KT with all that careful positioning, Sarth+3 or Maly.

Two hours in, and my vision blurs the screen into a wash of colors, my reaction times are twice as slow, my fingers are playing snap, crackle and pop, my wrists are in splints from having dislocated, Vent sounds like Murloc chatter, my breathing is less than optimum, and I have the unmistakable sensation that I am drifting on a boat out to open sea.

The biggest challenge I face is not to let any of that translate into the game. It's one thing for guild members to know that I have certain issues; it's quite another for them to notice it in a raid. I am very fortunate to be in a guild that is understanding and supportive, but I am a team player, and I really want to pull my own weight.

Part 2: Read more with Lileya about how she overcomes the specific hurdles of EDS.
"I never thought of playing WoW like that!" -- neither did we, until we talked with these players. Check out a whole year's worth of player profiles in our "15 Minutes of Fame: Where are they now?" gallery, and read recent player spotlights (the Oscar-winning 3-D effects director, the custom action figure hobbyist) on 15 Minutes of Fame.

Filed under: Virtual selves, Features, Interviews, 15 Minutes of Fame

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