Last week, we met Lileya of Lightbringer-EU, who has a rare, lifelong condition that causes her joints dislocate at the drop of a pin. Stacking up a Lifebloom roll can literally dislocate a finger or her wrist. "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," she recounts. "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."
What keeps Lileya at the keyboard despite these seemingly insurmountable challenges? We visited with Lileya to explore 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. This week, Part 2 of our interview with this determined player.
15 Minutes of Fame: Tell us about some of the hurdles EDS presents you as a WoW player.
Lileya: The first and most obvious hurdle is joint dislocations and partial dislocations. It happens two to five times during an average three-hour raid -- and usually at the most crucial points.
The first step is to reduce dislocations/subluxations as much as possible by reviewing when things dislocate and why, and trying to limit the causative factors to try and stop it from happening. That is not always an option, and so step two is to minimize the damage. In situations where I may not be able to prevent it entirely, I may be able to prevent a joint from fully dislocating, which is helpful, as I can usually last until the end of a boss fight with a partially dislocated joint (but not with a full dislocation).
The third step is to find relevant gaps in time to reduce joints without needing to stop playing. For example, the lava waves and void zones in Sarth+3 is a particular problem, but I know that after I have moved to safety, I have a second or two to fix things between keeping HoTs up. I'm lucky enough to be in a guild where dropping a Lifebloom roll because I'm relocating my wrist is an acceptable flaw.
The second hurdle would also be musculoskeletal. I have muscular hypotonia and peripheral neuropathy that affects both hands. My muscles do not contract as quickly as they should and start to relax again before they are fully contracted, and I suffer from pain, tingling and numbness in my hands.
I also have impaired proprioception. I can't tell very well where I am in space in relation to other objects, so I have difficulty finding the right keys unless I glance down at my hands and have difficulty determining where my character is in relation to in-game objects. The result is slower reaction times and coordination difficulties.
For most people, muscle memory reaches the point where with practice, they can carry out a specific task automatically, like brushing their teeth. I never quite get to that point, as my proprioception is permanent impaired -- but I can get to the point where if I concentrate on brushing my teeth, I can almost do it as well as most people.
The same applies to playing WoW. I will never be able to fly in a concentric circle at a 30-yard range around Malygos, but if I spend hours practicing strafing right, I can probably refine my level of control to be able to survive the encounter. WoW encounters are achievable, and that's why I enjoy the game. It may take hours and hours of practice to train my muscles for one component of one boss fight, and putting the pieces together is a whole different challenge, but the rewards are worth the effort.
My eye lenses dislocate spontaneously, and I have some visual disturbances similar to migraine auras that come and go. As a result, I can't always see the visual cues in the game and have to reconstruct them from memory or find an alternative way to translate them into useful information. I have difficulty with tracking and relocation, so that when I look at one point on my screen, it takes a while to be able to find and focus information on another part of my screen.
I also have some hearing problems. I tend to either not hear certain auditory cues or have difficulty interpreting them. It makes using Vent a challenging addition to raiding. A large part of my brain is constantly busy interpreting the things other people do automatically and without thought.
Simply put, I have huge amounts of internal lag. It takes time to make sense of movement, vision and sound and time to formulate and carry out the correct response. Sometimes, it's like the action freezes for a few seconds and then everything happens at once. It makes playing difficult but not impossible. It does mean that on top of dealing with all the stuff I already have to deal with consciously that should have been automatic, I also have to plan my gaming strategy of how I am going to compensate for these issues as they arise whilst they are happening. It makes WoW a very complicated challenge.
The fourth obstacle is medical emergencies that I cannot work around. I have severe asthma attacks that regularly require an adrenalin shot and/or trip to the hospital to get my breathing going again. Blood flow to my brain isn't always optimum and at times results in dizzy spells and fainting, without much prior warning.
I suffer from quirky, chronic and intractable headaches which often prevent me from playing at all or create interesting results, like loss of vision and loss of consciousness. Dislocations cannot always be reduced without assistance, and every now and again, putting joints back may go a little wrong and cause complications that have to be dealt with immediately.
It's difficult to be online and available reliably when a number of things can (and do) go wrong rather unreliably. It means that the biggest in-game obstacle for me is that of being able to play with other people. Most people in-game are not that understanding when you need to be replaced mid-instance, or when we wipe because one of the healers just stopped healing suddenly or died a silly death by standing in stuff.
I am very fortunate to have started in a guild where it was not only accepted but understood. I am now in a guild that are take me along on Sarth+3 and Malygos nights, and although I am frequently reassured that I am selected to partake on merit, it's reassuring to know that they know I can ask for whatever I need if/when I need it. I'm sure it's an interesting night for all when I leave the raid because the ambulance has just arrived.
Life is full of obstacles, and although some can be overcome with a little creative thought and practical application, some obstacles I can only overcome by accepting that they cannot be conquered, just endured, and surrounding yourself with people who are willing and able to help when they can and endure it with me when they can't.
Does your husband play WoW?
My husband does play WoW, but between working full time and being husband, housekeeper and full-time caregiver, he doesn't get much time to play. He logs in three to four times a week and is slowly but steadily progressing with his guild through the end-game PvE content on his now fully epic-clad Gnome Mage. Obviously, he enjoys playing as much as I do.
Do you play together at all?
I do play with my husband, but not all the time. We are currently in different guilds, and as such, we don't raid together. I wanted to strike out on my own a little bit, and being in a different guild allows me a level of independence that I enjoy and would not experience otherwise.
Also, we enjoy different aspects of the game. He loves grinding, quest chains and farming; I don't. I will never own a Talbuk mount. I love random pick-up groups, my Auction 'toon and Battlegrounds; he doesn't. Although we don't necessarily engage in the same WoW activity, we play in the same room, Ventrilo runs over speakers (unless we're both on separate Vent), and when I can't play, I often watch him play.
We do take time to play with each other and always have at least an hour or so a week where we tune out other people and go do something fun together. This week, we did the Sprite Darter Hatchling quest chain and each got the small pet. It's an aspect we both love about WoW: we can do in-game what we each enjoy doing whilst still sharing a hobby and spending time together. We may decide to raid together again in the future, but for now, we're happy spending some but not all of our time in Azeroth together.
What do your family and friends think about your gaming?
I come from and have married into a computer-oriented family, and as such, playing an MMORPG is the norm. I was odd until I started playing WoW. These days, gaming is mainstream, and it doesn't take long to run into someone else who also plays WoW, so that most family and friends react with "Which server do you play on?"
As playing fits into the same leisure time slot for me as it does for most players, I think my family and friends don't really think much of it at all. It's a mundane hobby and possibly one of the most normal things about me. Finally, I don't stare incomprehensibly when someone says MMORPG. The people I play with on a daily basis have become some of my closest friends, and I'm pretty sure that they think only good and positive things about my gaming.
Talk to us a little bit about regulating your game time. Many players constantly seek to throttle the amount of time that games like WoW take from their daily lives, but players with chronic illnesses often use gaming as a refuge and "full-time" activity. How does WoW fit into your life right now?
Being sick is a full-time occupation for me. I try to spend what productive time I have in a well-balanced fashion, and that means that in some ways, I throttle the amount of time I spend on WoW like everybody else who never seem to have enough hours in the day.
Instances are both the most enjoyable and challenging part of the game for me, and as my muscles and brain tire easily, spending three hours raiding is pushing my ability to its limits (and possibly slightly over). The longer I play, the quicker I fall apart. Currently, I can only spend four to seven hours a week actively playing.
I do use gaming as a refuge, but that takes many forms and does not necessarily require me to be logged in. I do spend more time than most logged in. I frequently run WoW on AFK mode, where I am logged in but not really playing. It's like having an aquarium with interesting fish. Some people have the radio on, others the TV; I prefer World of Warcraft.
Disabilities are immensely varied, and I think most people with a disabilities have to find their unique way of making things work for them. The only thing that really can be done is to make everything as customizable as possible, so that each person can adapt it to suit their individual need or preference.
I think the biggest difference in my approach is that my condition is variable, and so any adaptations I make has to take that into account. I have half a dozen types of various mobility aids: a selection of walking sticks for the rare summer's day where my joints are on good behavior, crutches with ergonomic handles for when my wrists/elbows/shoulders are pretty stable but my knees and ankles aren't, arthritic crutches for when my wrists aren't stable, and a wheelchair for when nothing works.
My approach to making WoW accessible has to follow the same rules. I have movement mapped to four devices, so that I can use whichever is most suitable on any given day. Some days I can't type at all; some days my right hand just cannot control a mouse; some days I can only use one or two fingers, as the others dislocate the second I press down on a button. And joint problems are just one of a dozen or so variable issues I have to try and adapt to.
Variability has both its positive and negatives. I am very grateful that I do not need a wheelchair every day and that I sometimes have full use of my senses. I quite often do Grobbulus on memory and timers, as sometimes I can see the poison clouds and other times I can't.
The downside is that there never seems to be any progress. I spend an inordinate amount of time to overcome a particular obstacle, only to have things change on me tomorrow, placing me back at square one -- unable to do it again, but for different reasons. I wouldn't trade in the variability of my condition for stability, as the positives for me does outweigh the negatives, but it's hard not to wistfully imagine what it is like to know what problems will arise today.
What about games besides World of Warcraft, Lileya? Any interest in trying different MMOs or other types of games?
Not really, no.
We understand do you a great deal of reading and listening to audio books. Do you read a great deal in the typical gamer's fantasy and sci-fi genres? What's on your reading list right now?
Sci-fi/fantasy is my definitely my genre of choice. I do enjoy reading and will devour virtually anything bar romance novels and bad writing, in electronic, paper or audio format. I have a long list of WoW-related and medical web-based content that I follow on a regular basis. I also actually read the many books available in game.
I always have at least one electronic, one paperback, one hardcover and one audio book. Different formats make reading more accessible, and I am too easily bored to read one book at a time. My current electronic copy is Samuel Butler's The Way of All Flesh. It's convenient to be able to make the text bigger and brighter. My audio book is March Upcountry, first book of the Empire of Man trilogy written by David Weber and John Ringo, two of my favorite authors. Audio books are lifesavers that are weightless and almost always accessible.
My hardcover is The Temporal Void by Peter F. Hamilton. Hardback books are my favorites. I can't hold them without dislocating something, but it's stories I can't wait a year for the paperback or audio version to finally make its appearance, and so we buy them to be delivered as soon as they are published and my husband reads them to me, usually again and again. My current handbag paperback book is the World of Warcraft novel called Beyond the Dark Portal. It's the only book on my current reading list that I haven't read more than once before.
Characters in books are like friends that stop by regularly and hang around for hours, and good books just get better every time you read them.