Hey hey! Don’t make me into some chair-hating, hypocritical jerk! If we met, and you were hot and fun and cool, and I could imagine some way of being physically intimate with you that didn’t involve us hiring a full-time sex surrogate, I’d tap that. 
But who knows? Maybe you wouldn’t hit on me for some other reason, like I was rude or self-involved or plain ugly.
How do you feel about the idea of posting pics? I’m not necessarily suggesting that you do so; I am just bringing up the subject.
Why?
This is–hands down–the most interesting “Ask the” thread I’ve read. Probably because you’re kind of hilarious (and you quoted “Bossypants”).
So what do your carers think of the Dope? When their shifts end, do you think they rush home and log on? 
I can’t speak for Ambivalid, but I’d like you to post a pic so I can link to it from my latest blog post about the brave, inspirational quadriplegic girl I’m becoming friends with who just doesn’t let her disability hold her back one iota.
Sorry, couldn’t resist. 
I’m sure many people are quite curious as to how you look and I am curious as to how you feel about pictures online. I would guess that you might be somewhat ambivalent about putting images out there for anyone to access but I don’t know.
Speaking for myself, just because I’ve been following this thread from the beginning (oh hai) and, feeling like I already know more intimate details about you than most people I’ve interacted with online (or, eh, lurked with), the “I wonder what she looks like” thought has crossed my mind. Not a morbid type of curiosity about your condition–I’m a healthcare provider and there’s nothing you’ve described that I haven’t seen at some point, on somebody–just the nagging desire to put a face to your “name,” so to speak.
Not that you need my advice, but I recommend against the whole posting a picture thing. That also goes doubly for posting any info that would make you any more personally identifiable than you need to be.
Yeah, I know, in the age of Facebook putting yourself out there is the norm. But you’ve already shared more personal and intimate info with us here than 99% of the other users, there’s no good reason to take it a step further.
Besides, if you’re already a bit squicked about your current devotee guy who you know personally, and are otherwise comfortable with, just imagine what it would be like if you start getting PM’s from someone like Ambivalid’s Atrophied-Leg-Girl requesting MOAR! pics. I’d hate to see some potential negative experience turn you off on continuing your presence here.
“Just say no” to over-oversharing, IMHO.
You’re probably right. There is no shortage of creeps on the internet. And once a pic is posted; it’s posted. There actually is a trend of disabled women having their pictures unknowingly stolen online and put on disability-fetish sites. So yeah, didn’t really think my question through…
Thank you so much for saying this (and I’m sure that’d be a ‘ditto’ from my dad and brothers, if they knew about this). To be honest, I feel kind of panicky when I think about posting a picture online anywhere (one reason I don’t have FB), because of this:
I’ve been aware of this for some time now, and I’ve always felt a little bit vulnerable online as a result. Thus, my monosyllabic answer to Ambivalid’s asking about it.
So, I’m not going to post a picture. But I’ll try to sate your curiosity by saying this: From the neck up, I’m very, very pretty. I have long, straight (as of tonight!) blonde hair with trendy straight-across bangs (which get in my eyes a bit but are worth it because they’re sassy); bright green eyes; one of the world’s best noses, perfectly straight and ever so slightly turned up at the end; and nice, straight white teeth. In an attempt to be complimentary, more than a few people have told me that, if it weren’t for the chair, I could’ve been a model. Thanks?
From the neck down, well, I’ve already described that in other posts.
I’m describing myself because I’m sure the tendency is to think that I look seriously f-ed up, like Terri Schiavo or something. I don’t. And I want to dispel the notion (as I’ve tried throughout this thread) that people with disabilities are by default asexual, or unsexy. I will never be able to compete with an AB woman in the ‘hot body’ category. But my face is quite lovely, and I work that to my advantage whenever possible. Course, you’ll have to just take my word for it, because I’m not going to post a picture at this time. But I hope I’ve earned enough respect with my honesty and candor in every other answer I’ve given and you’ll just trust me on this one.
Cool? 
I didn’t know who this was, so I looked him up. Just so you know, Rob Summers did not have a complete spinal cord injury; the article I read has him describing movement and sensation throughout his legs and back from the very first days of his injury.
By definition, a “complete” injury is one where there is no movement or sensation from the injury level down (well, it actually is a lot more complicated than that, but that’s the Cliff’s Notes). It doesn’t have anything to do with how the cord was injured, or how badly damaged it was–it’s only concerned with the effects of the damage. In Rob Summers’ case, his movement and sensation indicates that from the very beginning he was an “incomplete” injury. Incomplete injuries vary wildly in their severity: One incomplete quad could be in a sip and puff wheelchair, but with some sensation in one arm, while another could be a marathoner.
FTR, I severed my spinal cord completely (because I don’t do anything halfway, har har). The only diagnosis in a complete sever is a “complete” injury, but the two are by no means synonymous. You can have an intact, but badly bruised, spinal cord, and end up “complete.” It goes like this: All complete severs are complete SCIs; but not all complete SCIs are complete severs. And there are far more incomplete that complete injuries, as you can imagine it’s pretty tricky to completely cut off all communication between the brain and body.
I’ve heard of this, too. My understanding is that it’s only helpful in the acute phase of hospitalization, during the initial hours and days after the injury. The gel prevents scar tissue from forming on the cord, thus stopping the damage to the nerves. In my case, whatever scar tissue was going to form, formed twelve and a half years ago. My doctors haven’t mentioned this to me, and I don’t think I’d be a candidate for it.
I feel exactly the way your friend feels. As I’ve mentioned, I sometimes feel grateful that my injury was so “hopeless,” because it meant I could immediately start planning and living my life knowing I would always be paralyzed. And I like my life. I would prefer not to be a quadriplegic, but I won’t sacrifice any of the precious quality I have worked hard to attain (not to mention the mental peace I’ve fought for) to chase a dream that may or may not come to fruition. I’ll let the incompletes be the guinea pigs, and wake me if they stumble across a cure.
Oh, and lastly, complete and incomplete do not refer to whether a person is paralyzed from the neck down or not. The fact is that most quads have lower injuries than my own (and a few have higher). Some are so low that you wouldn’t be able to tell them from a paraplegic unless you were a clinician. Your friend could have a complete injury at C6 (no movement or sensation below C6) and still be able to move his arms. He’s still considered a quadriplegic, because his injury level is in the cervical section of the spine, and all four limbs are affected (not completely paralyzed, but affected, which is the true definition of quadriplegia).
(Hope I’m not coming across as a dour schoolteacher–this stuff is old hat for me, but I totally understand that most people never have a reason to learn it, and that’s a good thing).
It is really refreshing to see someone properly distinguish between “every day” and “everyday,” and between “whomever” and “whoever.” Sure, you sound really cool in all the other ways folks have mentioned, but this is the icing on the cake!
It’s pretty common nowadays. Myself, I have an FES bike, which stands for Functional Electrical Stimulation. I get hooked up to it once a week, and the electrical stimulation from the electrodes causes my leg muscles to contract enough to peddle the bike. This allows me to retain a bit of muscle tone, and get a bit of a cardio workout. It’s not a cure, but most paralyzed people do it in hopes that, when a cure comes, their bodies will be ready. Me, I use it because it helps prevent spasms, contractures (shortening of ligaments due to sitting down all day and not moving), and other ill effects of paralysis on the body. I also use a standing frame once a week for the same reasons.
I didn’t receive vocational rehabilitation, because I was so young at the time. But I did go through extensive occupational therapy, learning to write with a pen held in my mouth, properly use a mouthstick with its myriad attachments, get set up with the technology that would be necessary for me (on my chair, computer, phone, and in my home) and–most important for me–how to direct my own care. Recreation activities and possible future employment choices were discussed and planned, as well.
I just have to say one more thing about this. People constantly tell me about this or that technological break-through that may help me walk again (nevermind that I’m much more interested in getting my arms back than my legs). It gets exhausting to feign enthusiasm with them. I’ve been in this chair a long time; I’m used to it. I’d like to get out of it, but I honestly don’t believe that will ever happen. So until there’s a true cure, I’m pretty “meh” about the rumors.
AND, I get so annoyed with how people who “beat the odds” are portrayed in the media. Grrr! “John Doe was told he would never walk again, but he showed his doctors that they didn’t know who they were talking to.” Blah blah. I know everybody loves an underdog story, but the newsfolk sound like televangelists to me: “He had enough faith, so he was healed! And you can be, too!” So…are you saying I don’t have enough determination, that somehow my continued paralysis indicates some character flaw in me? I can’t move because I don’t want to enough?? HA. Absurd. Most people who sustain an SCI have some permanent disability. It’s just a fact, and you can’t wish it away, or believe it away, or elbow-grease it away. If you are in the tiny percentage of people who experience a complete recovery, you’re lucky. But don’t preach to me about how, if I do what you did, I’ll get the same results.
(That’s not to you - it was just inspired by your question).
Finally! It has taken me 3 hours but I have finally finished reading both your threads and thank you because it has been the most fascinating 3 hours I’ve had in a long time.
Either I overlooked it or no one has answered the major question that has been on my mind all along…
Did your cousin get fired after your accident?
Seriously, that is the only thing I’ve been able to come up with. Every other question I could have possibly thought up (and a huge amount I couldn’t) have already been asked.
I agree that this is the most interesting Ask the… thread I’ve read and I’m impressed and glad that it’s still generating interesting and unique questions and responses after so many pages.
Ah, wouldn’t we all love a measurable way to know the correct thing to say and do in every social situation! Alas, I have no such answer for you. Except maybe, just be normal.
The truth is, if you’re a person that I’d be likely to get along with long-term, you’re going to be fine. Even if you blunder your way into my accident story, if you are cool enough, I will still be your friend.
And if you are lame, I will not be friends with you even if you choose the exact right time to bring up my dramatic “back story.”
KWIM?
Awesome. I’m so glad people are enjoying it!
Since it’s late and I’m tired and I’m trying to answer several posts in a row, I have a helper typing right now. But, especially during weekdays, when I’m working and already set up at the computer most of the day, I do a lot of my own posting, with technology I’ve already described.
Anyway, I just asked her if she goes home and logs on and she laughed. No, she has a life, she says. Impertinent thing.
Bahahahahahahahahahahahahaha!
Exactly why I’m not posting a pic!
Why, thank you for noticing! That means alot to me.