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.
Part 2: Read more with Lileya about how she overcomes the specific hurdles of EDS.
Filed under: Virtual selves, Features, Interviews, 15 Minutes of Fame






Reader Comments (Page 1 of 3)
Nargrim Apr 21st 2009 8:37PM
This article put some perspective in my WoW life. I really wouldn't know how to deal with something like that.
Zeplar Apr 21st 2009 8:41PM
That sounds awful. Does it hurt like it would for a normal person, dislocating your wrists?
wordsofivory Apr 21st 2009 11:07PM
Pretty much, yes.
Though the pain numbs slightly after enduring it so often, its not the most pleasant of things.
prudychick Apr 21st 2009 8:48PM
Wow. I'm in tears. I just read her "about" on her blog. It's great that she has this as an outlet and a husband that not only has come along side her but shares the same interests as she does.
WoWie Zowie Apr 21st 2009 8:51PM
i love stories like this =)
Kolo Apr 21st 2009 9:00PM
Can't believe you left us hanging till next week. Thanks for the interview.
Avelestar Apr 21st 2009 9:02PM
My heart goes out to you and your husband, I hope ulduar goes well for you and your guild. I can't even imagine what life must be like.
Vandar Apr 21st 2009 9:02PM
All I can say is WOW!! I totally admire her not letting her affliction get in the way of her enjoying the game. Way to hang in there and be a trooper!!!
Sisco Apr 21st 2009 9:07PM
It sounds really intense...and definantley put things into perspective. I wonder if playing wow is, as she describes it a "marathon", her exercise?
Grym Apr 21st 2009 9:08PM
"Thaddeus and the dreaded jump"
Lileya, I too hate that jump and have found a great trick: switch to cat form and use dash...you can jump early and still clear the ooze by a mile!
Good luck and keep playing, you are an inspiration.
Meh Apr 22nd 2009 12:20PM
Or get your favorite priest to cast leviate on you, just float on down.
Zerapin Apr 22nd 2009 6:55PM
There is another trick. if there's a priest in raid, get them to levitate you. You can then simply run off the platform and land on the other.
uncaringbear Apr 21st 2009 9:12PM
Those of us who think we have it tough? The hell we do.
Emma Apr 21st 2009 9:58PM
It sounds like raids are an absolute feat of endurance for this woman, I would be interested to know why part fo raiding makes all the (I'm assuming) pain and difficulties worth it?
How do you explain to people why your reaction times might be a little slower than normal? How do you deal with the inevitable idiots that think you're just putting it on as an excuse?
This article was definitely a wake up call to those of us lucky enough to never have to worry about these things. Lileya is an inspiration to everyone, and her dedication and patience show the true strength of the human spirit.
wordsofivory Apr 21st 2009 11:18PM
"It sounds like raids are an absolute feat of endurance for this woman, I would be interested to know why part fo raiding makes all the (I'm assuming) pain and difficulties worth it?"
I think that's easy to answer. The sense of achievement.
It's the same as solving a difficult puzzle, or winning a strategic boardgame, or getting most of the answers right in a quiz. It's not going to change the world in any manner, but its still an achievement.
And those achievements always feel great when you have to battle some adversity to reach them.
Like a blind man learning to get around by himself, or a deaf person learning to talk, or any other numerous examples.
wordsofivory Apr 21st 2009 11:20PM
Or to put it more simply.
"I may have a disability, but that doesn't make me any less of a person than you. And I intend to prove that."
Kanuris Apr 21st 2009 9:59PM
A horrible day for people like you Mr First Guy.
I feel for this woman. An old friend of mine has been deteriorating physically over the last few months. I met her and her daughter on an alt at about level 10, and brought them into the casual/social guild i was in.
Since then she's now having to walk on crutches and doctors can't figure out whats wrong with her. Her daughter has to take care of more things around the house and complete homework assignments, and it kills me inside that there's nothing i can do to help her condition.
I'm glad Lileya finds enjoyment in this game and it sounds like her guild must be quite understanding of her condition. Props to them.
offday Apr 21st 2009 10:08PM
Good article. It's inspirational, and it really makes you thank God for what you have. It's hard to complain about having a rough day at work or getting a bad grade on a test when you know there are people suffering with things like this.
Wubbish Apr 21st 2009 10:17PM
I've played with her =)
-Wubbish Lightbringer EU
Aiur Apr 21st 2009 10:20PM
Now that's Ulduar Hard-Mode.
All jokes aside, you come across as a very inspirational person and I wish you all the best of luck in the future, in-game and out.