15 Minutes of Fame: Dislocated but not disconnected

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.

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.

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.
Next week, we visit 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

















Reader Comments (Page 2 of 3)
Nonny Apr 21st 2009 10:23PM
OK, the moment systemic dislocations were mentioned, I thought, "EDS?"
*hugs* to Lileya... I'm on a support forum for people with chronic illnesses, and we have several folks with EDS. It's not easy. :(
GrayElf Apr 21st 2009 10:41PM
Wow...
What do you say to a story like this? First of all - I want to congratulate WI on making this interview so short. The very first thing that came to mind, was not "leaving us hanging", as was suggested in another comment - but the consideration that showed for someone who obviously struggles with the simplest things in life. Thank you for giving this lady a chance to rest after the first part of this interview.
Lileya, I am amazed at what you have achieved. I like to consider myself a very skilled player - but I do it without any real challenges...so I think you are quite likely a better player than I am, given the hurdles you have to overcome to do the things I do so easily.
You are an inspiration, and I am so happy to hear that you have found something you love in WoW, and that is not quite beyond your capabilities. Stay strong. (Given your circumstances, I'm sure you realise the sense in which that is meant...)
Brigt Apr 21st 2009 10:46PM
I can't even imagine how hard it must be to go hours on an end with a condition like this, but this truly shows dedication beyond doubt. If I had a disorder like that I probably would have enough trying to get my day go by.
Good luck in Ulduar, to both you and your guild.
Emma: This is why you find a proper guild that suits you. Hats off to her guild. As it sounded to me it seems that don't have many of the inconsiderate idiots that sometimes end up in raiding guilds.
Ps: Had to register here for the first time after reading this blog for over a year. Truly a good interview.
ProudBeard Apr 21st 2009 10:57PM
thankyou for sharing with us all the horrors of your condition!i am truly moved.i will never,ever,EVER bitch about something ever again.
wordsofivory Apr 21st 2009 11:14PM
You're an idiot, AJ.
This woman is a living, breathing example of commitment that all those whiny, bitching, QQing raid fanboys who whine about every random change Blizz makes to the game. Those people could learn a thing or two from her.
I have no doubt you're reading this Lileya. I don't suffer from anything as severe as you do, but I can tell you right now that you're a hugely inspirational person. I'd love to have half the commitment to this game you.
I also think your husband deserves just as much respect. Both for standing by you (many of us would pray to find a person half as caring) and getting you into this game in the first place.
Good luck in future raids, and may you get all the epics you deserve!
Lynnx Apr 21st 2009 11:20PM
im on lightbringer (eu) as well. if your ever lookin for a group then just ask any1 in Misery. Your story touched me but im rly struggling to put into words what i want to say, but your story touches me =)
Craig
Trialia Apr 22nd 2009 1:05AM
Interesting article! I'm a gamer with EDS-III, fibromyalgia syndrome, asthma and atypical bipolar disorder, so a lot of the challenges Lileya mentions are things I have to deal with in my everyday life and my gaming, too.
This may be a good reference should I ever choose to join WoW, though my social anxieties are such that I probably won't end up doing that. I more often end up playing solo (one or more of the Final Fantasy series, for favourite). Less stressful on my neurological difficulties, but I admire her for taking it on knowing what a challenge it would be.
Raspberry Apr 22nd 2009 1:09AM
Very impressive that you can keep it up, and it's great to have an outlet like WoW. As others said, this really puts things in perspective and makes whining about broken raids and patch days seem trivial.
I'm playing Horde on EU-Lightbringer, yet I still /salute you, and will remember to do so in-game. I'm staying tuned for next week's interview.
Jason Apr 22nd 2009 1:48AM
Makes you realize things you take for granted, be them gameplay related or not.
Suskent Apr 22nd 2009 11:27PM
this is hands down the most interesting article ive read since ive started reading wowinsider.
its an inspriring story and i have the upmost respect for you and how you deal with you disorder. I wish you nothing but the best for ulduar and any raid encounters in the future
fernando Apr 23rd 2009 2:35AM
wow takes your mind away from a lot of things, being so intense and a social game. As said before, Lileya teaches us a lesson of endurance and more. I pretty much would like to raid always with people like her in the group.
Healabit Apr 22nd 2009 4:14AM
I struggle with a much much less severe chronic illness (FM/CFS) and back when I used to raid there would be days when my raid leader (also my husband) cut the raid short so I could get to bed, or do whatever I needed to feel better. Bless him, he never told the guild it was because of me we were stopping! I am way too much of a wimp to continue healing the raid, continue stretching my brain to understand everything going on, when I have an FM flare-up.
I stopped raiding as we are expecting a little baby now, and as a result my brain's ability to process raid stuff has gone down to about nil. But I too loved the sense of achievement, of doing something bigger than my usual abilities, being part of a team... having people rely on ME, when in the rest of life I so much have to rely on others.
Three cheers to Lileya :)
Sentient Apr 22nd 2009 3:27AM
Great article, Great Lady
Songwhistle Apr 22nd 2009 4:14AM
/treehug
Sorry to hear about your condition - much love and respect for the heaps of problems you face at a daily basis.
I must admit im impressed by the fact that you raid endgame with these issues. I am a raidleader in my guild and seriously we have people asking to leave raid due to headaches, a smoke, hunger, and all sorts of lame excuses - Today i will link to this article on our website because this is truly a measure of strength. This story is definetely a great source of inspiration for almost anyone having an off day. Thank you for bringing some insight to your life.
/regards,
Makettle Apr 22nd 2009 4:54AM
/cheer
Some people I know would say that World of Warcraft has closed my life a little more and has pushed me in a reclusive shell that has no purpose.
I strongly disagree.
People like you Lileya prove that there are indeed people that are part of the WoW community that I have joined that have several lessons to teach.
If I had only a fraction of the perserverance and determination that you have I would be a better person for it.
I wish you the best of luck in game as well as in life.
belmand Apr 22nd 2009 8:37AM
You are a trooper. I share ur willpower, from having a brain anurisym 10 years ago. I too have limited playing. I know first hand about having to struggle sometimes in raiding. My hats off too u maam and to ur guild for understanding that theres a decent human being behind that keyboard. Keep up the good work. My hats off to ur hubby for getting u into a game where real life and its flaws can be put on hold for a little while.
Belmand
Turaylon-US
Telos
Gnarf Apr 22nd 2009 9:39AM
Amazing
Dmiri Apr 22nd 2009 9:43AM
An Inspiration to all of us disabled players! Thank you for writing this article and shedding light on the other gamers who enjoy WoW to the extent thier disabilities allow them. I have an auditory disability that, like lileya, takes some time to process what I just heard. This does in fact affect your reaction time when playing and communicating with people over vent. I rely heavily on typed instructions. I can't wait to read what else she has to say! And just how did ur husband convince you? My wife avoids my room like the plague when I'm playing LOL.
Malkia Apr 22nd 2009 10:09AM
And I thought my narcolepsy made raiding hard...
Lileya, you are an inspiration.
Shakerag Apr 22nd 2009 11:17AM
OMG, you too? Yeah, I thought trying to play with narcolepsy was miserable as well, but this puts it in a little bit of perspective. Maybe I won't take it so hard every time I wake up dead in some strange, far away place from where I last remember being now.