I was born with multiple congenital limb deficiencies (missing bones in both hands & legs) which resulted in many surgeries and left foot amputation. I have yet to find something that I want to do but can't!! AMA
My left leg was slightly shorter than my right leg. So, doctors amputated my foot, and I have a prosthetic foot/leg in it's place. Additionally, I am missing the Fibula in both legs, although it doesn't matter much in the prosthetic one.
Both of my hands have 2 fingers and a thumb, 3 total on each. Originally, there was just one plus a thumb, but doctors split the single digit, and made two out of it.
In grade school I played baseball. In high school I played football and went downhill skiing. For the past 14 years I have played bass guitar.
For the past 9 years I have done martial arts, and have been teaching for the past 5.5. Primarily Muay Thai with a dose of Western Boxing thrown in, a mix of Panantukan/Wing Chun/Silat/Boxing, another mix of mostly Filipino weapons arts (Kali, Eskrima, Arnis, Silat), and finally some Italian Fencing/Bolognese Side Sword (mostly Manciolino).
For all of my life, at least as long as I can remember, I have played video games (Arcade Machines, Atari, Nintendo, XBox, WoW, LoL, Diablo, etc.)
I have done these in the past, and was able to provide some perspective to, and hopefully help, a few people who were facing a similar situation. I hope that this time around I will be able to a few more people. Ask away!!!
Edit: I missed this before, but thanks to whoever gave me Gold!!
Edit2: So, it's been 13 hours, and things are winding down. I'll still be around a little, but if I don't get to a question tonight, I'll get to it tomorrow!!
My 3 month old daughter has fibular hemimelia (short, not missing) and a clubbed foot on the left. Her other leg is totally normal. Sometimes I get overwhelmed thinking about everything she's going to have to fight through, and I worry about her getting teased at school. Thank you so much for your story, I teared up learning that you do martial arts. Thank you for giving me some hope that my daughter can live an active and normal life. My question is...how much shorter was your left leg that they decided to go ahead and amputate rather than use adaptive devices?
Any advice you could give me to help my daughter would he much appreciated. :-)
My left leg was about an inch and a half shorter. The reason for amputation was a combination of the length and the condition the foot was in. It was severely clubbed and missing many bones. Adaptive devices would have only been able to do so much, and would have limited my mobility more than amputation.
I'd like to say that you shouldn't worry about her doing new things, but you're a parent and that's like telling the tide not to come in. So worry about her like a parent would, but don't let it hinder her interests. If you are ever seriously worried about something she wants to do, ask the doctors about it. They will probably always say that it's fine, BUT they can provide advice on things to look out for, or ways to make it easier. If you're seeing a specialist, they've probably seen a lot of it before, and know how others have dealt with things.
If you care enough to ask a complete stranger on the internet for advice, I'm sure you'll do fine with your daughter.
If you could replace your prosthetic with something else (like a flashlight-mounted gun, RC car, or a stereo) what would you chose?
Jet pack, or some sort of hydraulics that would allow me to jump much much higher.
Wouldn't a jetpack on your left leg just make you spin in circles?
You'd just have to balance right. It would take some getting used to, but really all I'd want it for was short bursts of super speed.
Do you have gloves custom made? Or just wear mittens?
I have five fingered gloves and I don't use two of them.
I'm trying to get a pair of custom made leather gloves, but the guy keeps forgetting to make them, and I keep forgetting to remind him.
Do you ever mess with anyone and bend one of the empty fingers backwards while screaming in pain?
When I was younger I did. Now, people pick up on it faster.
Do gloves like this not fit right: http://www.amazon.com/Louis-Garneau-Shield-Lobster-Gloves/dp/B0099TIXOS
Oh ya, my uncle got me some of those years and years ago. They were great, but have since fallen apart. I've looked for a new pair, but they're all just a little to big for my hands.
Do you find people treat you differently in normal day to day settings (at a bar, say, or the grocery store)?
Also, do you still play WoW and if so, how do you have time for an AMA when WoD just came out?! ;)
They either don't notice, which is more common than you'd think, or they're too polite to say/do anything different. Every so often I run into someone who asks about it, but they have never been rude.
Multitasking. Queue times for dungeons are still kind of long. Also, unless this AMA takes off, I'll have plenty of time to play in-between questions.
It's going to take off. I hope your dungeon groups don't mind you afking a lot!
Just had to drop out of a Daily group because I was answering too many questions.
unless this AMA takes off, I'll have plenty of time to play in-between questions.
Top of the front page. Reddit hates your free time.
Yup, there goes my Saturday and maybe even Sunday and part of Monday.
Since you're a gamer, have you never found yourself having difficulty with the controls?
As in, do you ever find you don't have enough fingers to press buttons with?
I do a lot of customization of controls, when I can. Some of the really odd button combinations are annoying. Like A+X+RB. Seriously, why would you make that a move?
I'm going to assume you play a DPS class, due to the high queue times! ;)
Normally, I tank, but I didn't want to burden a Heroic group until I had a decent ilvl. So I just topped the dps charts. Tanking's a bitch in this expansion.
Whats the weirdest thing anyone has ever said to you about your disabilities?
I actually had someone ask me if I was ok. They were genuinely concerned that I was in need of immediate medical assistance. I was also in my mid-20s, so it's something I should have noticed by that point. That was very weird.
You should have pretended to freak out that they have extra fingers
I have not.
1 - do you play runescape at all?
2 - is there anything you cant do due to your condition?
3 - can we go ice skating/snowboarding together?
4 - is it easier to mix bread crumbs together in ground beef to make meatballs?
1) I don't. I've tried many an MMO, but I haven't gotten around to that one yet.
2) Military service for sure. And while I respect what they do, it wasn't something I wanted to do.
3) I can ski. I didn't like the thought of being strapped into a board, so I took up skiing, where the skis fall off when you fall. And I have this amazing ability to fall on my ass skating. So yes, as long as I get to ski. I'd give skiing a try, if I could find skates that fit correctly, and a butt pad.
4) I actually called my grandparents for this one. YES (at least for Italian meatballs)!!
Ever tried rock clmbing?
Yes. Never on an indoor wall though.
Its actually pretty nice to have the board locked on, keep you from rolling all the way down the hill! It also gives you an anchor to dig in if your sliding backwards.
I've got The Claw. I usually just sink those into the snow/ice.
Can't tell if its a device to throw out and stop you, or a Jim Carrey hand joke...
Jim Carrey joke
What is your biggest inspiration/motivation?
This is going to be a lame answer, but.....knowledge. I constantly want to know more about things I don't know about, and that drives most of the decisions I make.
Do you find you were treated differently in school? By your peers or teachers?
Maybe at first, when I was really young, but after a while everyone knew who I was (it was a very small school system). They knew what I could do and what I was like, so they treated me like everyone else.
do you see humor in your limitations or better, can you have a laugh about it ? im missing the sight of one eye and i can make fun of it which often results in (for me) funny situations. (sorry for my crappy english)
I do. I have, on occasion, mentioned how I can count the number of times on one hand. Some people laugh with me, some are a little uncomfortable. I have to remind people that if they don't laugh, I'm just being mean. Which is also funny.
Does the fact that you are missing your fibulas mean you're at higher risk of leg fractures? Or is your tibia stronger/bigger to make up for it?
Possibly, but I've never fractured it before.
I don't think so.
What shadow puppets can you make?
Bunnies, tridents, Devil Horns, the bird.
What is the hardest for you that others take for granted?
Tapping my foot.
I'm a recent above knee amputee left leg. Any recommendations for winter boots?
Get something that opens up as much as possible, and be prepared to work at getting the damn thing off (it's usually easier to gt it on). Also, if you do a lot of walking, expect the soles of all your shoes to wear out on the prosthetic side far before the other one. It's a long process, I can usually keep a pair of shoes going for a couple of years with a good sole, but they do wear down faster.
Do you have different prosthetic feet for different occasions? Have you ever made your own prosthetic with special features? Thanks!
No, they're all the same.
I've thought about it, but without the right equipment, I wouldn't be able to match what I currently have. Plus, if the fit is even a little off, it hurts.
One day, I will have a peg leg for Halloween.
You should paint the feet of your prosthetic foot (feet if it's both) to look like fancy shoes and go out. And get custom made white gloves and be extra fancy!
Maybe some day!!
Can you see why kids love the taste of Cinnamon Toast Crunch?
Damn it, were you the one who asked this last time?
Is it because of the tan lines, or cinnamon sugar twirls in every bite?
When you are fighting, do / can you kick using your prosthetic? Are you worried about breaking it? I know those things can get expensive.
They are extremely expensive, but I have broken so many, I stopped worrying a long time ago. I worry more about breaking someone else. I have a lot of control, BUT without flesh covering it, it's like swinging a steel pipe. If I hit bone, even softly, it's going to hurt.
Yes, I kick with it a lot.
In grade school I played baseball. In high school I played football and went downhill skiing. For the past 14 years I have played bass guitar.
Which one did you have the most fun with? And which one were you most successful with, and why?
Bass guitar was, and still is the most fun and most successful. It's purely because I stuck with it and practiced, which was because I found it fun. Baseball and Football were fun as well, but I didn't practice enough, and it's probably because I didn't enjoy them enough.
Yes, below knee.
It all happened before I was able to walk, and my parents said that I started to walk at the same age as everyone else. Every so often I break it, which is very unexpected.
Right now. Although I used my left more when I was younger. This is mostly due to the martial arts I do being right dominant. So things switched sides.
Depends on the day. I get sores every so often and they can be very painful, to the point where I can't walk.
Same as above, or if I hit it on something. It's fairly sensitive in spots.
Yes. After seeing x-rays, there wasn't much of an option. I wouldn't have been able to walk on it. It would have been crutches or a wheelchair.
Best to you too. I hope whatever decision you make works out the best for you.
were you treated badly by other kids when you where in school?
Yes, but no more so than any others. People were just more specific. After a while, they knew it didn't bother me, so they resorted to the normal high school insults.
You must often be subject to onlookers staring. Does this affect you negatively? Do many people simply assume that you won't be able to perform all those tasks? What are their reactions when they find out about your achievements?
Some people stare, but i don't really say anything unless they ask about it. I just about doing whatever I was doing. If they want to ask, I would be more than happy to answer.
I would imagine they do, because some people seem to be amazed when they find out what I have done.
How does it feel to have Nightcrawler hands, and why is it so awesome?
It feels like I can teleport anywhere I want, and that's why!!
Nothing yet. I started this and thought I'd have time to eat. Turns out I don't have any food and need to get some, but I've been answering questions.....
At this point, it will probably be Taco John's since it is right down the street.
Have you ever considered cosplaying a turian or a quarian?
both species from the mass effect games, if you are unaware
Yes I have, or the Arbiter. Unfortunately, I am the least artistic person I've ever met and I would probably look horrible. Someday, I'll meet someone with artistic abilities and have them help me out.
Favorite video game?
Depends on a number of factors.
Secret of Mana was one of my favorites growing up. I have a special place in my heart for Super Mario Bros. 3, as it was the first game my brother and I bought when I was a kid. And then there's Final Fantasy 6 and Chrono Trigger, both tied in the RPG genre.
Right now, as far as story/lore goes, it's World of Warcraft. Although it's less because of the game, and more because of the story. I've read more on the internet and in books than I have in the game.
Have you ever gone out for halloween as a one legged pirate?
Not yet. Although I have an excellent "Privateer/Pirate Captain" costume. The leg is the hard part to make.
How about a ninja turtle? Especially since you're proficient in martial arts. That would be awesome.
I did, when I was younger. When the turtles were cool and actually used their weapons......
Do you have or have had a girlfriend/significant other?
Your attitude is admirable. Some of us came with everything in it's place yet we get mental blocks for which we get stuck and don't do S#&@. Thanks for sharing.
No I don't. I'm kind of picky, and haven't found anyone who shares my interests. I've dated people, when I was younger, who had wildly different interests, and they didn't go well.
Is that your handwriting? It's very neat considering. Would you mind taking a picture of how you hold a pencil or pen?
When I print slowly, it's readable. I'm also an engineer, and we're expect to have messy writing. When I write fast, I'm the only one who can read it.
I added it to the original post.
Why wear a sock?
Keeps my shoe from wearing out. Plus, the foot is rubber and can be very slippery if it gets wet. I'd rather not fall.
What is the disease medically called?
Technically not a disease, but Complex Syndactyly of the hands and bilateral Fibular Hemimelia. And clubfoot.
Well as far as the clubfoot goes, not so much anymore? I actually just did a massive paper on syndactyly and polydactyly, and a part of the paper was sociocultural reactions to them. Thanks for doing a helpful AMA two days AFTER it was due. This is so inconsiderate. Also I need to apologize to at least someone with congenital deformities (I know y'all aren't a club or anything) for doing my best not to stare but still totally staring. I'm going into human osteology / genetics / forensic anthropology, so my brain just goes nuts when I see someone with abnormal physiology, I am trying to picture bone morphology, musculature, and everything else associated with there disorder. I thinks beautiful in a way, seeing how the body/people will adapt things like this.
As a far as a question goes, do you have enough hand strength to maintain most short blade/knife grips, or is it easier for someone to disarm you if they know what they're doing?
The club foot on the right was corrected through surgery and casting, followed by years of wearing a brace. At some point, it stopped improving, and I was a kid who didn't want to wear a brace, so they stopped having me wear it. I still have some a slight turn, but it's mostly gone. The biggest problem seems to be neurological. Often times, when I'm lunging, my foot feels like it's turning out, when it's actually turning in.
The club foot on the left was amputated, so not much to worry about there.
It's actually a bit harder to disarm me. The normal angles don't work, so they have to use a different technique. In training, it takes a couple tries before they figure it out. In reality, you don't get a second chance at something like that.
Heavier weapons are harder to hold on to, and I move my hands and arms in different ways to compensate. That also makes training with me a different experience for people.
Although, i would imagine an expert would be able to disarm me regardless.
Oh wow, mad props to you for making the most out of situation. Question though, can you make you successfully do the hokey pokey?
Sure, but I don't dance. Yes, I'm one of "those guys".
What inspires you when certain achievements or goals may be tougher or harder & more time consuming? And what would you tell someone in similar circumstances struggling in similar situations to help motivate them to put in the extra effort when at times it may feel a lot easier to give up?
I'm actually not sure what inspires me, I can't point at anything specific. It might just be that I enjoy what i do.
If something is difficult, it's no reason to give up. Doing it makes the reward that much better.
However, if it's not necessary or you don't enjoy it in some way, then the result can be disappointing. Which may turn a person away from trying new things.
Maybe an example would be better. I've been trying to get into the video game industry for a couple of years now. I have some ideas for helping disabled people play video games easier, and helping people in general. I have been rejected many many many times, BUT because it's something I truly believe in and truly want to do, I keep on doing it. It would be far easier to quit, and I almost have, and do something else, but I keep pressing forward because I found something I care about.
I hope that helps.
I know someone with a similar birth defect, I have never seen him get down about it :)
Do you ever feel phantom pain or phantom feelings where your prosthetic is?
Nope. I was too young when it was amputated, so I never felt it to begin with.
Ever considered running a marathon?
And who's your favourite string-slappin' bass god?
No, I very much dislike running. I've messed my knee up, on the non-prosthetic side, and running just hurts it.
Flea by himself, but Vince Hornsby as part of a band.
I applaud what you have been able to accomplish. The line "I have yet to find something I want to do but can't" piqued my interest as a person with disability. I often get annoyed at some PwDs that climb mount Everest or run marathons or something and say things such as "if I can do it, you can". It plays into what some call inspiration porn where PwDs are objects of inspiration for the able-bodied. You have assistive devices that enable you to do things you want, which is empowering. However, persons that do not have that type of stamina or ability are often still compared to you by the public. You are one of the most representative type of person with physical disability to the public eye. Do you feel this when you interact with people in public?
Edits: I hope I don't come across accusatory. I have never been able to ask an amputee things on this topic, and I am passionate about it.
As far as "inspiration porn" goes, I don't really care one way or the other (although I do think they can be a bit ridiculous). I'd rather help people, with or without disabilities, than try and inspire people. Honestly, given enough money and time, anyone can do those things, and they don't need to be reminded.
I do get that from people. When I go to Martial Arts seminars, I have heard "if he can do it, you can do it" and in that context, I'll go along with it. It is an instructor trying to inspire his/her students. It is a very personal environment and in that context, I think it can be used appropriately.
When you start to tell the general public, whom you've never met, that they can do something because you can, that's where it gets ridiculous.
I'd rather spend my time and energy teaching someone something than telling someone that I think they're wrong. However, those two ideals aren't mutually exclusive.
Can you get your ass to Mars and start the reactor?
I'm sorry. :(
It would be tough. I'm not nearly as tall as Arnold.
How do you type?
One letter at a time. And then I go back and correct all of the mistakes I make.
Respect ! How do you manage to play video games with only 6 fingers ?
Seriously though. I tend to change key-bindings around a lot for PC games. With console games, I started with the original Nintendo controller and adapted as the new consoles came out. It ended up being a gradual process.
What are your favorite games? Are you pumped for the new Dragon Age, Smash Bros, Pokemon, AND WoW: WoD?
WoW, definitely. I was going to do some Heroics today, but I've been answering questions for the past few hours so, I only got a daily done.
Smash Brothers is another one I can't wait to play. Although I don't have a Wii-U and have to wait for my friend to get the game.
I do like League of Legends as well, but since WoD came out, I haven't played much. i may be watching /u/nightblue3 while doing this AMA. Might as well learn while I type.
I tend to stay away from new releases for a week or two. I got burnt on Assassin's Creed 3, and haven't bought a pre-sale or day one release since then.
Do you have a job? What is it? If not, how do you support yourself? Do you live alone?
Your story is inspirational to me. Keep doing what you're doing, pal. I wish you the best.
Unemployed. Nothing to do with my condition though, at least as far as I know of.
I have a degree in mechanical engineering and another in engineering management. However, I have done so many things outside of my degree that I got stuck in a bad spot. Too much experience overall for entry level, but not enough experience for anything above that. It was mostly due to choices that I made in my life, and I'd make them all again, but it's not a great position to be in, for anyone.
When I did have a job, I saved up, a lot. So now, I'm just burning through my savings.
Yes. I live alone.
How do you feel about the way television and movies protray people with physical handicaps?
They seem to have gotten better recently, but it hasn't been all that bad. The dude from Darkman with the prosthetic machine gun was cool.
Overall, it doesn't bother me. I'd rather spend my time and energy teaching someone something than telling someone that I think they're wrong. However, those two ideals aren't mutually exclusive.
I have yet to find something that I want to do, but can't!!
Scratch your foot?
(...Jesus wept!...what kind of monster have I become?...I should seriously reevaluate my life decisions...oh look, a guy busting his ass on an icy drive! That's funny! I wonder if it's real. Looks a little exaggerated when he throws the shovel. Could be real I guess. I really should make my lunches ahead of time. I spend way to much eating out. Have to go to the store for that though. Cold today...)
I can scratch it, not that it will feel anything. If it take it off I can even lick it, but why would I want to?
You still play WoW? I'm always wanting to get back into it, but it kind of sucks now.
Yes. I came back for WoD. I don't like some of the simplification they did, but the story, and the way they tell it, is so good. It doesn't even compare to the horribleness that was MoP, and to a lesser extent Cataclysm.
How do you feel about people asking you questions regarding your conditions in-person?
It's fine. I'd rather have them ask than stare.
Couldn't you just have a lift on one shoe to compensate the height difference instead of cutting the foot off?
if the bone structure had been there, yes. But the structure wasn't there.
You say you've yet to find something you couldn't do if you tried. Care to elaborate?
Actually, I haven't found something I wanted to do that I couldn't. there are plenty of things that I can't do, just like everyone else.
I have not yet found something that I wanted to do that I wasn't able to figure out a way to do, even if it wasn't the normal way of doing things.
Have you ever thought about doing any cosplay? You could pull off an authentic Goro (Mortal Kombat) or a Turian (Mass Effect) better than most with that hand! Would be awesome!
I've thought about it. I'm not tall enough for Goro though.
I am artistically challenged, so it would not look good at all. I'm waiting until I meet someone(s) who are good at that sort of thing. Then I will enlist their help.
Because Bass players and Drummers get "it". Something guitar players and singers sometimes lack. If it wasn't for us, the others would get lost.
5' 10" Probably a little, but nothing I can say for sure.
Is your zest for life as infectious in real life as it seems to be on here?
When I'm teaching, probably. Although when I am exhausted, I tend to take the room with me. Not sure how, but it's happened.
Can you soar through the air on your own volition? No? Yeah I knew there was shit you wanted to do but can't. You're no better than the rest of us. :)
I'm working on it, even though I hate flying. ;)
Why do you wear socks have you got laid yet?
Socks protect my shoes.
Is masterbation fun?
How do you pick up women?
How's your sex life?
Do you follow r/TheRedPill?
Not very well.
See question #1
I do not.
I have yet to find something that I want to do but can't!! AMA
Grow bones in hands?
Why would I want to do that? Sounds painful.
Can I get a high three?
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