I talk a lot about the real people that live on the other side of Eve's screen. I've always been fascinated by people and Eve is certainly one of the greatest tools ever invented for meeting people from all over the world. In my years of playing Eve I've known a Cucumber farmer in Romania, a Rancher in South Africa, a student in Corsica, soldiers, ship captains, oil-rig workers, scientists - name an occupation or a location - and someone there plays Eve it seems.
When I started Stay Frosty one of the very first pilots to show an interest was a very young pilot named Joffy Aulx-Gao. He had only been playing Eve for a few short months when he joined Stay Frosty, but his enthusiasm was apparent from the first. There are people you meet in this game that you just know are going to be special if they stick with it. I knew Joffy was special, even before I knew just how special he was.
Years ago, out here in real life, I was fortunate to meet a very special man who worked for the Pittsburgh Pirates. I won't mention his name, he has since passed away, but he was their top ticket seller. He also had Duchenne's Muscular Dystrophy. Together with some great help from the MDA, we created an event called the Muscle Team here in Pittsburgh that brought famous athletes together with children that suffered from the various incarnations of that affliction for a night. Over the six years that I served as a National Vice President of the MDA we raised well over 3 million dollars for research and other support for the MDA. That man became a good friend of mine and I learned a tremendous amount from him, and all of those I was lucky enough to know thru that experience.
I mention all of this, not to take away from what I'm about to tell you, but to set the stage properly. Joffy quickly became extremely good at PvP in Eve. He won several of our monthly Hick's Awards for total kills and total solo kills. He became rather famous for his amazing Tristan and then Astero solo kills. And he also became an important part in everything that Stay Frosty did. From helping with events, to organizing, serving as our Diplomat, and essentially becoming one of the core members of our rapidly growing family.
At some point during that first Summer Joffy confided in me. He isn't a normal Eve player you see. Joffy has a form of Muscular Dystrophy called Pompe disease. For the most part Joffy is confined to his bed, primarily because of problems with his back. His motion is rather limited, primarily to his hands, fingers and face. He has had to innovate a bit to make Eve work for him. He's had to manage the UI in order to minimize the amount of mouse travel he needs to perform and it is virtually impossible for him to use key-commands while playing and working the mouse.
I'm going to let him tell it in his own words:
Beyond the screen are real people living very real lives. I strongly believe it is important to never forget that. At the end of this past week of talking about how we treat each other in-game, about where lines might be and where they might not be, about building places in-game and out, and of hearing news of friends that are no longer with us - I think this is the most important lesson of all. We are all real people.
When I started Stay Frosty one of the very first pilots to show an interest was a very young pilot named Joffy Aulx-Gao. He had only been playing Eve for a few short months when he joined Stay Frosty, but his enthusiasm was apparent from the first. There are people you meet in this game that you just know are going to be special if they stick with it. I knew Joffy was special, even before I knew just how special he was.
Years ago, out here in real life, I was fortunate to meet a very special man who worked for the Pittsburgh Pirates. I won't mention his name, he has since passed away, but he was their top ticket seller. He also had Duchenne's Muscular Dystrophy. Together with some great help from the MDA, we created an event called the Muscle Team here in Pittsburgh that brought famous athletes together with children that suffered from the various incarnations of that affliction for a night. Over the six years that I served as a National Vice President of the MDA we raised well over 3 million dollars for research and other support for the MDA. That man became a good friend of mine and I learned a tremendous amount from him, and all of those I was lucky enough to know thru that experience.
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This is me with James Harrison at the MDA Event |
More importantly, he became my good friend.
At some point during that first Summer Joffy confided in me. He isn't a normal Eve player you see. Joffy has a form of Muscular Dystrophy called Pompe disease. For the most part Joffy is confined to his bed, primarily because of problems with his back. His motion is rather limited, primarily to his hands, fingers and face. He has had to innovate a bit to make Eve work for him. He's had to manage the UI in order to minimize the amount of mouse travel he needs to perform and it is virtually impossible for him to use key-commands while playing and working the mouse.
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Joffy's squished UI |
I'm going to let him tell it in his own words:
"I can only move my hands, fingers and face so it was challenging to play EVE in the beginning but I learned to do it better using only a mouse. First thing I did to become faster in PVP was to set up my UI so I had less mouse travel and it actually worked fine, next thing was to get a better mouse that I could adjust to my needs so I bought a Razor Ouroboros because it can be adjusted in size and mouse speed.
And of course lots of practice, theoretical knowledge isn’t enough when it comes to PVP, you need to learn it the hard way by dying and getting used to it.
When I don’t play PC i’m a professional handicap bowler, this year goes good so far with an average on 165. Last year me and my friend came in 3rd but that’s not good enough. XD
I never let my disease get me down, I fight back!"
One of the hardest things for me has been knowing this about Joffy all this time and having to keep my mouth shut about it. Especially when commenters on his videos make fun of him for not using key commands, or someone from the Tuskers does the same in local, or the numerous times it has happened right here on this blog. But I promised him I wouldn't say anything and I didn't. It was his right if he wanted people to know, or if he didn't.
Recently Joffy has moved over to our WH Corporation and started living out of the Wormhole. He hasn't said it, but I suspect it has become harder for him lately. When he disappears from the game, or from comms, or from chat for any length of time - I worry. I can't help it. But I also know he is incredibly brave and wants to do this for anyone else out there that is in a similar situation. Anyone that faces their own challenges. As I said at the very top, Eve is a great way to socialize, meet, and explore the world - even when you are limited in some way in real life. Anything is possible.
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Joffy wanted me to know that isn't his dog |
Beyond the screen are real people living very real lives. I strongly believe it is important to never forget that. At the end of this past week of talking about how we treat each other in-game, about where lines might be and where they might not be, about building places in-game and out, and of hearing news of friends that are no longer with us - I think this is the most important lesson of all. We are all real people.
Joffy is a fighter. A Pirate. A PvPer. A great player in space and in the Alliance. He has come a long way since those first few months and I've been proud to fly along-side him since day one.
Keep the courage my friend.
Comments
I've grown up around physically and mentally handicapable people and I admire them for doing what they do every day. You've found the right place to call your serious internet spaceship buziness home and I'm honored to fly next to you!
Rixx, you are such a good and decent guy. I'm proud to call you a friend. I've known many EVE players who face hard challenges. It's tough to see hurtful comments directed at them from the uniformed, knowing there are unavoidable reasons for whatever it is about that person's play they are disparaging. The greatest beauty of EVE is its ability to provide a level playing field (albeit one with that fabled learning cliff!) and social engagement platform for everyone--especially those who may be challenged to find the same thing in their everyday real life. The value of that cannot be understated. Is it too much to ask that all players be more mindful about the challenges other players may be dealing with behind the scenes, and perhaps instead of being unconsciously and cruelly judgmental in their comments, find a way to be gently humorous and gracious in victory, loss, and analysis? Our better angels and all that...
Just last autumn, joffy came within a hairs width of winning the alliance wide frigate 1v1 tournament., beating many very good pvpers.
I have always held joffy in high regard, but after reading this blog, my respect has risen greatly.
Keep it up, my friend!
Rixx thank you to let us all know Joffy's story, one of the reasons that I always follow your endeavors (RL and game) in Eveoganda.
From here I saw Joffy's vid's get posted and those together with others got me super excited to get out there and try it for myself (I've even shown his vid's to most of my friends IRL XD) and shortly after I joined SF and as usual it was Joffy who said hi first ([ 2014.02.24 13:21:07 ] Joffy Aulx-Gao > Laguna Fox welcome aboard) that for me blew my tiny mind. ;)
Thank you Rixx and Joffy I can honestly say I wouldn't be doing the things I am now without you guys and reading this I couldn't agree more with all the comments here especially Mynxee's :) But more than that I consider it an honour to have flown with SF for the last year, this whole thing might come across a tad soppy but hey like I give a damn!
o7
Laguna Fox
Cheers!
Oh, and thanks for sharing the solo c2 confessor fit, amazing fun.
A privilege to fly with you o7
Joffy, I admire your courage and your determination. There's so much others could learn from your example, including myself. May you inspire us all to not give up.
Rixx, thanks for lifting Joffy on your shoulders and allowing his voice to be heard today.
Argos
It's also great to keep in mind that EVE may be cold and dark in so many ways, but there are some great people behind those screens.
The sheer volume of overwhelming support that we've both received has been heartening and amazing, from all corners of the Eve universe. So I just want to thank you all for that.
It proves, once again, what I've always believed - this is a great community.
Cheers
Si
Honored that you help in Broadcast4Reps, Joffy. You rock!
<3
Joffy, you rock! And Rixx, you're the best.
I'm proud to be a part of the ABA family now.
rawelliri