I live in a very populated area of Southern California, near a major city. I grew up here and I like it a lot. Quadriplegics have a hard time controlling their body temperatures, so the mild temps here are helpful for me. I’ve never imagined living somewhere else. Interesting question, though…
It’s sounds like you handle this about a million times better than I think I would, but I always hear about people handling really difficult things better than they would’ve thought they could. Before your accident, would you have thought you’d be able to cope so well? I understand that it might be hard for you to say since you were so young when it happened.
Any restrictions on how long you can sit up?
One of my coworkers uses a chair and she’s always doing wheelchair pushups to relieve pressure and avoid decubiti. She almost turned over a small table one time raising up too high and a leg spasm hit the underside of the table. Didn’t phase her or any of us at all. We just continued the meeting.
Can you drive your own electric chair? With a mouth stick?
Love your positive attitude. Sounds like you’re doing the most you can.
I have spina bifida, so I can (sorta) relate. drop me a PM.
Dang, yo. You’re making me feel like a major hypocrite. 
I just have such a hard time imagining myself with a fellow chair user. Not because I think people in chairs are essentially unsexy, but because I like the security and normality a relationship with an AB guy brings. But, grrr…I’ve literally had almost that exact same line given to me mid-breakup. Sh*t. I am a hypocrite.
I will say this, though–if this hypothetical wheeler looked like, say, Channing Tatum in a chair, I could probably be convinced to hit that.
GAH. Exactly.
Hahaha! I’ve never heard it put that way, but swabbing the juices is as good an expression as any, I suppose.
The technical term is “pressure relief,” though, and I do it twice an hour, every hour I’m up in my chair. Since most chair users have lost sensation in at least some parts of their body, we have to be careful to adjust periodically to avoid skin injuries that lead to pressure sores. The most vulnerable areas (for me at least) are butt, hips, heels, and elbows, as they are all in constant contact with my chair.
Think of it this way: When sitting in a chair, how often do you shift your weight over the course of an hour? Now imagine that you can’t feel the discomfort brought on by sitting perfectly still that whole time, so you don’t move at all. Your butt would be screaming after an hour. Do that too long and too often and you’ll develop a nasty sore that could take months of hospital care to heal, or could even kill you via infection.
Additionally, it’s just good for circulation, since blood doesn’t flow as well through paralyzed muscles. I’m more prone to blood clots than an AB person, and moving around a bit, including elevating my legs, mitigates that risk slightly.
Two questions, one mundane and one TMI:
First, have you ever used public transit since your accident? I’m a bus driver and am very accustomed to loading chairs in my bus (I’m still spry enough to get a wheelchair loaded, hooked in securely, and on their way in ninety seconds!) How have the drivers treated you? I ask because I always try to treat people with respect and feel embarassed on behalf of any douchebag bus drivers.
Second, whats sex like for you?were you sexually active pre accident? Are you particular about where someone touches you? I’ve always been curious about people with paralysis and sexual response- do you think the parts of your body you can feel are more sensitive as a result? (sorry if its too personal)
You being surprised that I’m gainfully employed is not offensive, per se, but it is one of the common stereotypes I find mildly annoying. There are many, many jobs out there that don’t require a person to be able-bodied. A few that jump to mind are lawyer, computer programmer, accountant, and editor. I am healthy, of sound mind, and well-supported–why wouldn’t I be expected to work and contribute like an AB person? (I know not all people in my situation are healthy, of sound mind, and/or well-supported, and I bear them no ill will for not working).
I have been mad, angry, AND resentful about my disability. But probably not for at least 5 years. I’m not a saint; I just made a concerted effort a long time ago to get over myself and get on with it already.
In school, I always had an aide in classes to help me. Thankfully, much of our work was done on computers, which are quite accessible to me. Anything that needed to be “hand-written” was written by my aide, precisely as I dictated it. NO cheating. :dubious:
As for orgasms, how to explain? I don’t have conscious sensation in my genitals, but with some time, a little battery-powered assistance, and a patient partner, about 3 times out of 10 I can achieve orgasm. What does it feel like to orgasm when you can’t feel your body? For me, it starts as a sensation in my head akin to the build-up to the biggest sneeze ever. After a minute or two of this almost painful sensation, I get an explosive head rush, the halcyon aftermath of which makes me feel like buying the world a Coke. 
I never had an orgasm before I was injured, so I can’t tell you how it’s similar to or different from what you might experience. All I can tell you for sure it that it’s real and it’s nice. 
I have to say, umkay, you remind me a lot of my brother - and seeing as my brother is the most amazing person I’ve ever known, you should take that as a compliment.
Exactly.
Privacy? What’s that? Physically, there’s not much I can hide from the people who help me live day to day. Bodies need a lot of looking after, and since I can’t work mine, someone else has to handle all of that maintenance. It doesn’t take a whole lot of imagination to envision what a person in my situation needs help with, but the list starts with basics like bathing, dressing, eating, brushing teeth, and going to the bathroom and continues from there.
I’m never alone, so someone is always there to help me at mealtimes. I just drive my chair right up to the table and whoever is with me gives me bites in between taking their own. To be honest, some people are better at feeding me than others; it takes a certain finesse to nail the timing, bite size, and fork placement. My brothers are uniformly awful at it, but my dad is surprisingly great. And all of my carers are good at it, since I’d never hire anybody who wasn’t. And, yeah, I like to eat at restaurants. I get stares, but I get those all day everyday anyway. NMP.
Flattered, honored, etc.
That’s neat-o! Yes, I’d love to be a psychotherapist. And I’d love to work in a context like that. However, it’s been my experience that recently injured kiddos don’t want to talk to long-term chair users like me. Reason being, they’re still stuck in la-la land and are sure they’ll be the exception to the rule, the mythical “walking quad.” When they hear that I was injured 13 years ago, and I’m still in a wheelchair, they get skittish. (To be fair, though, this opinion was formed by exactly 2 scenarios where I was asked to go visit people who had just gotten hurt, and it didn’t go well. You have much more experience with this–so am I wrong?).
Also, I never saw a psychologist after my injury. Nothing against it; it just wasn’t on my radar at 14 years old. What kind of work do you do with SCI patients? I’d be interested to know what the process is like (though I know each case is different).
Honestly, NEVER. It just doesn’t occur to me. That sounds like something a person who thinks constantly about their own sh*tty life would think, and that just ain’t me. Besides, if I give my brother a hard time for being bummed about breaking his leg just because he’ll eventually heal up, why shouldn’t the ventilator-dependent C1 quad I know get all bent out of shape at me because I complain about neck pain? “Geez, must be nice to be able to feel your neck.” Right?
I say, there’s always someone better off than you, and there’s always someone worse off. KWIM?
Yeah, it’s different, because the sensation isn’t located in my stomach anymore. It’s at the back of my throat. Weird, right? I don’t know a better way to describe it than to say that it’s like what I remember my stomach feeling like when it growled with hunger, transplanted to my throat. A tightness, a discomfort, an empty feeling. I don’t think this is common for quads, because I’ve never known one who had this experience. But that’s how I know when I’m hungry (which, incidentally, is much less often than before I was hurt, since I burn far fewer calories now).
And I answered your orgasm question in another post.
In the 14 years I spent as a typical able-bodied kid, I never, not even once, considered the possibility that I might someday be paralyzed. So I can’t say that I have handled it better than I would have thought, because I never thought about it, period. If I had, I might not have taken that jump.
So you should give yourself some credit. As you mentioned, most people who successfully navigate tragedy are surprised in retrospect at their own resilience. For what it’s worth, I don’t think you actually have the strength until you need it; as in weight-lifting, you don’t build up the muscles until you have some resistance.
What my doctors suggest is a far cry from what I know myself to be capable of. If it were up to them, they’d have me in my chair for a max of 8 hours a day. HA! So I’m in bed before most people eat dinner? No, thanks. I regularly (as in, right now) stay up till the wee hours in my chair, often more than double that 8 hour rec. I’ve always been a high-energy person, and I’ve always felt like I need less sleep because I’m not as physically active as an AB person (though that could be me talking out of my @ss–no research behind that at all). I’m careful to do pressure relief and my carer is in earshot (when she’s not typing for me, like she is right now). I’ve been doing this a long time, with no ill effects. But I’m lucky–not all quads are as hardy as I am.
It sounds like you have an awesome office.
I use a mouthstick for typing; so perhaps you are referring to a sip and puff mechanism? It’s an option for quads like me, where you either suck or blow into a little straw to propel or turn the chair. But I drive my wheelchair with a joystick I move with my chin. Having used both kinds of controls extensively, I much prefer the joystick. It’s just way easier to control speed and is a more natural way, physically, to move the chair through space, if that makes sense.
How much has technology improved in the last 13 years? What can you do now that you couldn’t back then? Anything on the horizon you’re excited for to make your life a little easier/more independent?
I’m understanding your SN better now.
I’ve used public transit at times, though to be honest, it’s easier to just take my van. If I couldn’t drive (which I definitely can’t), but regularly went out alone (which is ill-advised for me) I’d use it all the time. Every bus driver I’ve come across is efficient and discrete, if not downright pleasant. A+++.
But you know who gets a D-? F-ing airline workers. I’ve literally never had a pleasant flying experience, post-injury. Getting manhandled by those people ruins my day, every time. How about you and your cohorts run a training seminar for them, where you emphasize the dignity of the disabled passenger and the not-rocket-science of getting a person safely into a vehicle without making them feel like a piece of luggage?
I wrote about my orgasm experiences in another post, which you may find interesting.
No, I wasn’t sexually active before I got hurt. I was only 14, and in 8th grade. Though I sometimes think I would like to know what sex feels like for an AB person, I always circle around to being grateful I don’t know what I may (or may not) be missing.
What’s sex like for me? Emotionally fulfilling, fun, thrilling, mentally stimulating. I can orgasm, and that’s the tops, but just having sex is nice in and of itself. I can’t feel the concrete sensations of penetration or clitoral stimulation, but the warm fuzzies I get from being wanted, from loving and being loved are sweet. I also get a mental thrill from watching the activities my partner performs on me (big fan of mirrors). And I’m always looking for ways to surprise my partner with what I can do, which is a challenge, but I’m up for it.
I do think that the places I can feel became more sensitive after I got hurt. A finger or tongue run down the line where my sensation picks up (a slight diagonal that starts at the base of the right side of my neck and dips down under my left collarbone like a necklace askew) is incredibly tingle-inducing. I like my ears being kissed, too, and up and down the back of my neck. And I love plain old-fashioned making out.
Oooo…
Okay, and on that note, I’ve gotta go to bed. I can’t believe I’m going to let my carer type this sentence, but it would be nice, every once in awhile (now-ish) to not need a partner to get off. :mad:
With your carers around you all the time, what kind of relationship do you have with them? Are they friends to you? Is it purely professional?
(I guess there is a small catch here: if they’re typing for you, maybe you can’t complain about how one is stinky, or a crazy birther, or votes for the side of evil, or never shuts up about their aquarium.)