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A heart-shattering ultimatum...what would you choose?

post #1 of 13
Thread Starter 
Now I have two big hobbies and one is music and the other is running. Therefore I appreciate the function of both my legs and ears. However, if you were ever put in a situation where a sadistic maniac made you choose to lose your legs or your hearing, what would you sacrifice and why?

Interested at what head-fiers lean towards here...
Edited by stevenlongs - 8/13/13 at 8:11pm
post #2 of 13
Having grown-up with a father with severe hearing loss, I would say that I would rather lose my legs than my hearing. The inability to easily communicate with the rest of the world should not be taken lightly.
post #3 of 13

What about sight or hearing? Imagine losing one or the other, now that's a hard decision.....

 

I'd probably pick my legs though, no need for legs, I'm sure in a few years time prosthetics will be good enough to enjoy a normal quality of life, but hearing on the other hand.... I don't think you can fix that....

post #4 of 13

Quote:

Originally Posted by Noobmachine View Post
I'm sure in a few years time prosthetics will be good enough to enjoy a normal quality of life, but hearing on the other hand.... I don't think you can fix that....

 

Actually, prosthetics are already good enough to ensure a normal quality of life, and both can be fixed, depending on your definition of "fixed." A lot also depends on the health care system in your country of residence, and on how much disposable income you have.

 

High end prosthetics already include computer chips that compensate for the lack of sensation and altered gait that a prosthetic can cause... they're also incredibly light and made of titanium, carbon steel and other hard wearing materials.

 

As with a lot of things, prosthetic use involves choosing whether you prefer form or function. It's possible to get a serviceable prosthetic that looks and feels almost *exactly* like your lost leg (down to the birthmarks!) but will never quite function as well as a real leg... or you can get one which has been electronically tailored to your original gait that will *surpass* your original leg on a technical level, but looks very Bionic Man. (There are also sport-specific ones, like those used by the now infamous Oscar Pistorius, but those are made to entirely different specs and are not suitable for daily use.)

 

Truth be told, most amputees do not have the disposable income to avail themselves of either of the two options on the highest end, so they own something more mid grade. Even the mid grade ones, though, have improved to the point where you have probably walked past a few amputees on the street and never known it - the days of amputees not being able to run, or walking with a noticeable limp, have largely passed, at least in developed nations. (At the 1996 Paralympics, at which I worked as an athlete-press liason, many of the athletes coming from less developed nations had whatever they could cobble together at home. That situation is also improving, but slowly.)

 

In regard to hearing, again depending on country, income, and access to medical technology, there is the cochlear implant, which, in layman's terms, essentially bypasses most of the ear to deliver auditory information *almost* directly to the brain. (It's more complicated than that, but that's the gist of it.) Friends of mine who have CIs later in life - i.e. at one point, they had normal hearing - report that the sound is *different* than what they remember - one friend said it sounded slightly tinny around the edges - so it's not a solution to undertake for minor or even moderate hearing loss... but it is an option for those with severe or total deafness. It's also quite expensive and rarely covered by insurance, since it's essentially non-essential brain surgery.

 

As for me, I'd give up my legs before I gave up my hearing, my substantial ASL skills aside... I like music too much. Having said that, my legs don't work anyway and I can slaughter any biped who comes along via my racing wheelchair, so... legs are overrated, imo.

post #5 of 13
Thread Starter 
Wow! I wasn't expecting answers to be this polarized.

Personally, assuming the inability to "bypass" the disability by use of prosthetics or implants, I would give up my hearing over my legs.

My reasoning is because, if you were to become deaf right now, you would still have the ability to speak. Sure, you will sound funny but the ability is there. Those that know you have the possibility of learning sign language. Strangers may use gestures or simply write things down on a piece of paper. What about reading people's lips?

I would argue that interactions between you and your family and friends will gradually get easier and almost natural. You are communicating with family and friends for a large portion. In terms of your job, if you have one that requires quick back and forth it is understandably not ideal. Reasearch, arts, writing, programming maybe as your next job?

My legs though. I would absolutely detest losing my freedom. Everywhere you go you must think in advance whether there will accommodations for your disability. Forget sports. Forget traveling. + all the day to day drag of getting out of the car etc etc. Can you even drive with without legs?

Not saying it can't be done though.

Cpl Todd Love doing a fkin spartan race with 3 missing limbs:
enhanced-buzz-8231-1346085326-2.jpg

If you want to read his story: http://www.mca-marines.org/leatherneck/article/love-air-corporal-todd-love-usmc-someone-who-intends-live-life-well

Note I haven't put much thought into this either, just my opinions off the top of my head.
Edited by stevenlongs - 8/13/13 at 10:08pm
post #6 of 13

How about losing one ear and one leg?

post #7 of 13
Quote:
Originally Posted by stevenlongs View Post

Personally, assuming the inability to "bypass" the disability by use of prosthetics or implants, I would give up my hearing over my legs.

My reasoning is because, if you were to become deaf right now, you would still have the ability to speak. Sure, you will sound funny but the ability is there. Those that know you have the possibility of learning sign language. Strangers may use gestures or simply write things down on a piece of paper. What about reading people's lips?

I would argue that interactions between you and your family and friends will gradually get easier and almost natural. You are communicating with family and friends for a large portion. In terms of your job, if you have one that requires quick back and forth it is understandably not ideal. Reasearch, arts, writing, programming maybe as your next job?

My legs though. I would absolutely detest losing my freedom. Everywhere you go you must think in advance whether there will accommodations for your disability. Forget sports. Forget traveling. + all the day to day drag of getting out of the car etc etc. Can you even drive with without legs?

 

 

Interesting thoughts. As a disabled person, I would argue that the process of *adjustment* is much easier for a person who has lost their legs than a person who has lost their hearing.

 

A few points: People who acquire deafness later in life don't "sound funny" because, when they were learning to speak, they could hear - both others and themselves. They might have difficulty telling how loudly or softly they're speaking, or how well they're articulating... but they don't "sound" Deaf in the way that hearing people tend to think Deaf people sound. My grandfather and father are both pretty close to deaf at this point in their lives, and you'd never know it to talk to them.

 

.... which, in some ways, is exactly the issue at hand. You look normal, you sound "normal", but you can't hear... can't make a phone call. Can't hear when the checkout person asks if you want a bag for that. Can't hear a friend calling your name. Yes, there are ways around all of that, but if you really stop and think how many times a day you use your hearing, and then think about having to stop and explain that you can't hear - over and over, every time, *because* you look and sound normal, so people make the same incorrect assumption each time - it gets wearing. My grandfather has become a near-recluse as a result... he's not depressed, he's just fed up with the hassle of having to carry a pen and paper everywhere, having to explain over and over that just because he sounds fine doesn't mean he can hear you, etc.

 

Learning sign, like learning any other language, is quite difficult unless you learn it early in life (as I did, being a disabled kid who started school back before disabled kids were allowed in with Other People's Children, lest our cripness be contagious. ;) The Deaf, blind and mobility disabled kids were all thrown together in our own "special schools," so we all learnt ASL, how to cobble together a ramp, and how to "see" for our peers, the better to make friends and help each other.) Just for starters, ASL has no "be" verbs, has no negating words, and has an entirely different grammatical structure from any other language. If I were to type this post in ASL gloss (the written equivalent of ASL), no one but those who know ASL could understand it. So, yes, it's an option.... if you want to devote a few years to it, and expect your family to devote a few years to it, and your peer group, and.... To use an ASL idiom for the problem, "PAST, TRAIN GO, EXPLODE!" (Translation: "That train has left the station and blown up." Further translation: "You (in this case, the late deafened person) have entered this problem from the middle, and you've missed so much earlier context and understanding that it's too late to catch you up!") Hopefully that's a good example of just how different ASL (or any sign language) is from any spoken language!

 

Lipreading is another of those skills that looks easy, but in reality is almost impossible to do well without *years* of practice... and if the person you're trying to lipread doesn't *know* you're lipreading, they'll often look away or to one side, thus depriving you of what limited visual input you're getting. Just like ASL, it can be done... but you've got to plan on devoting a year or two worth of time and mental energy in order to do it on a conversational level, as opposed to short, clear phrases where you can be sure of eye-contact.

 

Interesting, too, that you equate loss of your legs with loss of freedom, travel, and sports. I've certainly had plenty of all of the above, and my legs have never worked! Yes, it takes a little planning and forethought, but I've rappelled down cliffs, played basketball (competitively), played tennis (competitively), played wheelchair soccer (competitively... it's somewhat closer to rugby or gaelic football than soccer), competed in roadracing... all from the age of about 4. It's funds that have limited my travel, not being in a wheelchair. A more affluent friend of mine who's a paraplegic (more severely disabled than I - I can feel my legs, just can't use them) has been to England, Ireland, Bosnia, Germany, and all 50 US states. She plays hockey... also competitively.

 

I've always found it amusing that ablebodied people see *a* story of *a* disabled athlete and think that that person is somehow an anomoly or an "inspiration"... truth be told, I don't know many disabled people under the age of 45 or so who don't play sports! From a physiological perspective, it's one of the only ways to keep your metabolism at a healthy rate when you can't walk, so wheelchair and adaptive sports opportunities are plentiful, have almost zero barrier to entry (most programs have loaner wheelchairs for those who don't have their own, and little or no cost to participate), and are highly encouraged by our medical teams.

 

I blame the easily confused "Special Olympics" and "Paralympics" for part of this issue. The Special Olympics is a once a year sports opportunity for people with primarily *intellectual* disabilities, and as such, they de-emphasize winning and losing in order to make participation a positive experience for everyone.

 

The Paralympics is the Olympics for primarily *physically* disabled athletes, held immediately after the Olympics (both summer and winter), and has all of the same sports in the "regular" Olympics... and they are cutthroat, best-of-the-best international competitions, just like the Olympics are. Some Paralympians actually hold *better* records than their Olympian equivalents. Wheelchair sports are fast, brutal, and you *will* get injured. And no one will apologize. And the action won't stop for you. If you get dumped out of your chair, if you're lucky a ref will come stand over you so you don't get trampled while you're getting back in. I can always tell when there's a high number of ablebodieds in the audience at a basketball game, because there are these huge terrified *gasps* from the audience at regular intervals, while we athletes bloody each other up, ram each other, accidentally dislocate fingers, etc... to us, that's just playing the game. (And it's why I continue to play even though my fast-mounting additional medical conditions are making it steadily more painful to do so. I love it. Ablebodied sports are boring in comparison!)

 

The only thing I would trade for my hearing would be the ability to no longer be in chronic pain. I was born with cerebral palsy and unlucky enough to acquire rheumatoid arthritis in my 20s... I'd trade my hearing to get some range of motion and the ability to move without pain back. But that's about it... certainly wouldn't trade my hearing for legs, cause life on wheels really isn't bad at all.

 

(Okay, hills suck. But that's why technology gave us battery-powered push-assist wheels (strictly verboten in competition, naturally, but that's what quick release axles are for - swap your wheels and go). Hill problem solved. Stairs? You can do them from a chair, just takes some muscle - and going up backwards. Problem solved.)

 

Anyone who's interested in what wheelchair sports are really like might want to check out the film "Murderball," about the US and Canadian men's quad rugby teams' journey to the Paralympics. It's true to life, which I can say cause I know most of those guys.)

 

Oh, and yes, you can drive without legs. They're called hand controls (honest, that's what they're called), and they wire the pedals to controls that are mounted on or near the steering wheel. You can put them on any car, or take them with you if you're renting a car in a place you're traveling to. Costs about $300 US (and up, if you want to get fancy), plus installation, if you need someone else to install them, but all it takes is a little mechanical know-how and a few minutes of your time. Thanks to flappy paddle gearboxes and the like, those of us less endowed in the working legs department can even drive manual transmissions now... something that was always possible, but trying to get the clutch wired in correctly used to be a little hit and miss. Nowadays, not an issue. Which means when I hit the lottery, I can drive that Zonda I've had my eye on.... ;)

post #8 of 13
Thread Starter 
Thanks for the write-up. It felt very much like a reddit iama . Sorry if i sounded insensitive. Ive never actually spent time with any young person in my life that was physically handicapped in any way.. It really helps when someone speaks up and explains their own way of living that cannot be understood without first hand experience. I feel like its the same situation that occurs with our thoughts and ideas of other cultures.

Regarding the special Olympics and Paralympics, I had never even actively made the distinction in my head. In my defense though, I've never seen either on tv, are they broadcasted?
post #9 of 13

No worries, you didn't sound insensitive. It's far from the first time I've heard similar sentiments, so I actually find it a little fascinating at this stage of my life, that my life experiences are so foreign to the ablebodied world, and that most ablebodied people assume that people in wheelchairs are inherently "deprived." There is a trite-but-true expression in the disabled world, "My disability does not limit me, but others' *attitudes* sometimes do," and I've found that to be true in my life (and my sister's - she's also in a wheelchair. No, we're not twins/multiples, and yes, it's rare to have two biological, singleton siblings in one family with cerebral palsy!) I've certainly been excluded from various goings-on, but it was never because I couldn't MacGuyver a solution... always because ablebodied people assumed there was none and didn't bother to ask my opinion. :)

 

Disability is definitely its own culture. Deaf culture is even stronger than disabled culture, but that's because Deaf people have their own language, and culture is inherently influenced and strengthened by language. (That's why, in the above post, I sometimes referred to Deaf people, and sometimes to deaf people. To be Deaf is to know ASL/Deaf culture, even if you are hearing - as with the child of a Deaf adult - but to be deaf means you can't hear and are not culturally Deaf - i.e. you don't know the language/culture. A seemingly small, but vital semantic distinction to Deaf people. If you're interested, you can google "Deaf President Now" to understand a little more about such things.) Disabled culture isn't as strong or as unified as Deaf culture, which I joke is why the Disability Rights movement in the US has stalled... when we all get together to try to clarify what kinds of policies are important enough, it tends to devolve into an axe-grinding eating-our-young event!

 

I once sat on a committee wherein we were supposed to be drafting some basic language for new policies we would like to see... i.e. we weren't writing laws, just trying to boil things down into one cohesive statement from the group. Within 20 minutes, we had one blind guy who'd once nearly been hit by a car demanding that all cars should have beepers that would continuously sound in order to make street crossing safer for blind people... (cue the city-dwellers, including those who were blind, saying, "What?! Have you *been* to New York?! Do you understand how obnoxious and ultimately useless that would be?!")... once we finally got that guy to sit down, a guy in a chair went on a rant about how he'd ignored a sign that said a given bathroom was inaccessible and gotten stuck in the bathroom, and how due to this unpleasant experience, *all* bathrooms everywhere should always be accessible... (cue all the chair users going "Why? There was a sign, right? Your own fault then, genius.")

 

All of which left us exactly ten minutes to try to deal with the incredibly complex and problematic Community Care Act, which is what we were *supposed* to be drafting a statement about. (The Community Care Act is one of those pieces of legislation that sounds great but becomes more problematic the more you look at it. What it's *intended* to do is provide more opportunities for severely disabled people to get good medical support so that they can stay in their communities, rather than having to move to an expensive nursing home... which, besides being a bigger strain on both personal and government resources, isn't really the place for, say, a 20 year old kid who snapped his spine and needs part time temporary nursing care. The problem is, the original way it was written, it would have pushed people who *were* happy in an institutionalized group home type setting, and who had been in that kind of setting their entire lives, and were thus happy there and had good social networks etc, back into situations where the support wasn't as strong as they needed... which is what we were trying to address. In ten minutes. Because we like to make these things hard on ourselves!)

 

But, that said, we do have certain cultural things that unite us all, and probably the biggest one is sports. (The second biggest tends to be "how to mod your accessibility equipment so you don't look like you stole it from a hospital.") I have yet to meet a reasonably young disabled person who isn't heavily involved in one, the other, or both... and most long-time disabled people, too, regardless of age. As an illustration of this, I recently had to upgrade (or downgrade, depending on your point of view) to a power wheelchair, because my shoulders are too shot to push my manual for long distances. I build my own manual chairs (my father's a welder who worked for one of the big name sports chair companies, one of the ones whose work you see a lot of in Murderball... which is how I know those guys) so I hadn't had to go through an "Accessibility Tech Specialist" in decades... but I can't afford to build my own power chair (didn't have $7k lying around), so I had to call the chair dude out. He started going over specs with me and I stopped him and said "This is what my insurance will cover - given that, I want X brand, Y seating, Z positioning" etc. He put his pen down and said "Oh... sorry, I didn't check the paperwork, you're congenitally disabled - just email me what you want, I don't need to be here." ... that's a good example of "culturally disabled"... a culturally disabled person gets really invested in their tech, because it's such a central part of our lives... and as such, it's more.... accoutrement than anything. I don't have any ill feelings toward my chair, any more than an ablebodied person would have ill feelings about their legs... it's there, I use it, it's essentially an extension of my body, except I can trick it out however I want.

 

The first thing I did when I got my power chair (which is quite a thing of beauty, even stock) was crack the control box to remove the limiter and improve the brake response. Factory specs are set so that you won't accidentally crash it into the wall if you have poor fine motor control. Since mine's not bad, I took all that nanny stuff off. ;) So now I can hit 20 mph (not that I need to, but why not?), and take it off road and up stairs. It doesn't stair climb as well as it would if I'd built my own - can't do anything over 4 inches - but c'est la vie, and I can take my manual if I'm going anywhere where stairs are an issue. Next up will be wiring up my manual chair with a power supply and setting it up for "power conversion", where I can flip a switch to engage a brushless motor. I've put off doing that because my manual chair is a light and quick little thing and I didn't want to lumber it with a lot of weight, but I think I've got the battery and motor weight down to an acceptable level now, and since I'm looking at taking a second crack at university on a campus with major hills, it'll serve me better than power assist.... plus that way I'll have a backup if my factory power chair dies on me.

 

As you can probably see, modding accessibility tech is not at all unlike modding headphones... not everybody gets heavily into it, but almost everybody tinkers!

 

You're far from the only one who's never made the distinction between the Special Olympics and the Paralympics... the Paras have, until recently, always been the forgotten sibling to the "big event." This post is insanely long already, but I'm nothing if not loquacious, so here is the *why*, speaking as someone who worked at the Paras:

 

Until 2012, Paralympic funding and media coverage was directly tied to Olympic funding and media coverage. What this meant was, companies would bid on the Olympic rights, decide they didn’t want anything to do with the Paralympics, and drop out.

Here’s what that did to the 1996 Paralympics in Atlanta, in practical terms:

McDonalds was the winner of the “fast food sponsor” category. They didn’t want to fund the Paralympics, so we had no food at the venues. We weren’t allowed to approach other sponsors in the “fast food” category, because McDonalds held the rights (that they were choosing not to use). None of the restaurants sponsoring the Olympics wanted to sponsor the Paras, either, so we also couldn’t approach other *restaurants* to provide food. In the end, faced with ravenous athletes, hungry and tired staff, and confused attendees, we managed to find a mom and pop catering company to provide food. They couldn’t afford to comp it, so we all had to pay for our food out of pocket – not the case with food for athletes and staff at Olympic events.

Home Depot in the “home repair company” category, John Hancock in the insurance category, and Visa in the “credit card” category, also dropped the Paras, along with most others. Due to severe lack of funds, Paralympic venues were limited to “whatever is available mostly for free,” so, while some events could be held in Olympic-built venues close to the Olympic village, some were as far as 3 hours away at whatever college campus would tolerate us taking over their gym.

Coke did the right thing and sponsored both, and in an attempt to make up for the appalling behavior of most of the other companies involved, gave out “free coke” badges that you could stick in the bill slot of any Coke vending machine to get it to dispense, with no limit. Thanks to their generosity, athletes, staff and spectators were at least never without soda or (Coke branded) water. In an Atlanta August where temperatures are routinely over 95F/35C and many of the athletes have difficulty regulating their body temperature, this is the only way we avoided what could have been a disastrous epidemic of heatstroke!

And finally, the biggest issue:

NBC has had the Olympic media coverage rights for years. They remain utter jerks about covering the Paralympics to this day (which is, in part, why you’ve never seen it and didn’t know the difference). NBC, as the media rights holders in the US, are allowed to film as much of the Olympics and Paralympics as they choose, and broadcast whatever amount they choose. The same goes for the rights holders in each country, i.e. the BBC in the UK, etc. The other stations in each country may film 2 minutes, per venue (not per sport, per venue), per day. That’s it. That’s how much they’re allowed to *film*, not broadcast. That makes it nearly impossible to catch anything exciting on film, and it makes it *completely* impossible to do anything more than a tiny highlights reel, if they’re lucky. My job, as an “athlete-media liason” was to keep a list of the rights holders in my pocket, keep an eye on all the other stations, and go around tapping shoulders and saying “you’ve had your two minutes, you have to leave now.”  Broke my heart to do it. The NBC guys who could film as much as they wanted? I saw them once in the two week period. They filmed 30 seconds of a medal ceremony and packed up.

It might interest you to know that in 1996, the most enthusiastic country about broadcasting the Paras was.... Iran! The Iranian rights owning station guys excitedly told me they were filming everything they could, “assemble for live feed *and* delayed broadcast! Is very big step, our country!” I didn’t have the heart to tell them it was a “very big step” that no other countries were interested in taking. The Iranian fans were a delightfully rowdy bunch, and the whole building rang with “IR-AN! IR-AN!” when their guys were playing. Definitely not what I expected, since one of my basketball teammates with cerebral palsy was smuggled out of Iran as a baby because his parents were afraid he’d never be able to leave the house otherwise! Go, Iran.

2012 was a watershed year for Paralympic media coverage in one respect. The British were immensely proud to host *both* the Paralympics and the Olympics (even allowing the Paras to share the same logo, for the first time in history), and promoted it heavily. They decided that if an Olympic sponsor dropped out of sponsoring the Paras, the auction rights would go back on the block to whatever company wanted it. As such, the Paras in 2012 were also *fully funded* for the first time in history. In addition to that, the BBC and Channel 4 got together and did a deal amongst themselves – the BBC didn’t want to show much of the Paras on TV, but they did want the radio broadcast rights. They kept those (and used them), and they sold Channel 4 joint unlimited coverage rights for television – which Channel 4 then used heavily, and proudly. It was the first time most people had seen the Paras in their own living room.

I have no idea what 2014 or future Paras will be like (though I predict NBC will keep up its unbroken streak of being jerks)... but London 2012 did us proud. It is worth noting that all of the sponsors named above (McDonalds etc) got such bad pushback from what they did in Atlanta that they are now “Proud Supporters of Olympians and Paralympians,” so the hope is that the Paralympics will be fully funded or nearly so from here on, and that no one will have to run an international prestigious sporting event on a shoestring again.

In the incredibly likely event that most countries continue not to broadcast the Paralympics because who wants to see disabled athletes do awesome things, the internet has come to the rescue... all Paralympic events are now broadcast both live and taped from the official international website of the Paralympics – and they cover all the run up national and international championships year round, so you can see those right now, if you like.

Once again more than you ever wanted to know, but hopefully at least parts of it were interesting. :)

post #10 of 13

What you said that as you can probably see, modding accessibility tech is not at all unlike modding headphones... not everybody gets heavily into it, but almost everybody tinkers i don't agree.

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post #11 of 13
Originally Posted by ssidyEvelyn View Post

What you said that as you can probably see, modding accessibility tech is not at all unlike modding headphones... not everybody gets heavily into it, but almost everybody tinkers i don't agree.

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I respect your opinion! There is a reason I said "almost" everybody, and, to clarify, I don't mean everybody on the planet who owns a pair of headphones - I mean people who visit sites such as head-fi. I would be surprised if a majority of active users here have *never* tried different earpads or used an aftermarket cable, for example... even if they end up reverting to stock.

 

To me, modding means anything that isn't the way the headphone/accessibility equipment/whatever came from the factory... it doesn't necessarily require tools, taking your equipment to pieces, or doing anything irreversible.

 

But I could be wrong; it may be that 80% of head-fi users never do a thing to their headphones and keep them in factory fresh condition from the day they obtain them, and the 20% who do experiment are abnormally vocal about it. In which case, mea culpa.

post #12 of 13

how about both arms.

 

 http://www.likeaboss.com/post/richie-parker-like-a-boss

 

tough choice...

post #13 of 13

Both arms vs. hearing *is* a tough choice! Partly because arm and hand prosthetics lag far behind leg prosthetics currently in terms of functionality.

 

That said, I just watched several fellas backstroke in the Paralympic qualifiers in Montreal this week with only their *heads* (each of the athletes in question had no arms and no legs). They each clocked decent times, and one of them won his heat - and a spot in Rio 2016.

 

As long as I had a guy like that showing me how the heck to manage ADLs (activities of daily living, the official term for stuff like making yourself a sandwich and doing laundry), I think I'd still pick my hearing. What can I say, I love music *that* much.
 

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