Ask the Girl in the Wheelchair

[umkay]

I'm a "high" quadriplegic, my spinal cord having been completely severed (which is actually very rare), at my 4th cervical vertebra (that's the fourth from the very tippy-top) during some ill-advised snowboarding shenanigans when I was 14 years old. As a result, I was permanently paralyzed from the neck down.

Though I can only speak authoritatively about my own experience with a spinal cord injury, I've been using a wheelchair for over a decade, closing in on half my life. I'm aware that many people are curious about my atypical life, and that many, many more are pitifully ill-informed and brimming with assumptions that range from benign-but-incorrect to horribly offensive.

I have a pretty good sense of humor, and I'm not shy about details. I will take your questions now.

[TriPolar]

Do you prefer Coke or Pepsi? Do you watch Community? If so, wouldn't you like to see Chang get killed off?

[umkay]

Originally Posted by TriPolar

Do you prefer Coke or Pepsi? Do you watch Community? If so, wouldn't you like to see Chang get killed off?

Coke and I hate that show.

[sandra_nz]

Do you get some sort of live-in assistance?

[hajario]

How do you operate your chair? Do you still have feeling below your neck? Do you have in-home help?

[MyFootsZZZ]

Does it effect your dating life? How?

[Alessan]

My brother has a C6 spinal injury, which left enough muscles active in his shoulders and arms to push his wheelchair, feed himself (with help) and drive a (modified) van. I can only imagine how hard it is for you.

I assume you have someone to help you out. Family, in-home help or both?

How much can you do yourself? How are you typing this?

[Musicat]

Originally Posted by umkay

I'm a "high" quadriplegic, ...

I'm interested in the meaning/origin of that term. Does that mean only the "high" (upper body) functions are operable, or something else?

[Pitchmeister]

Thank you, umkay!

Most of my questions have already been asked, but I still have one more: Can tell us about a few of those highly offensive assumptions you mentioned?

And, of course, Coke was the correct answer! (Post #3)

[MyFootsZZZ]

Originally Posted by MyFootsZZZ

Does it effect your dating life? How?

I read your other post, so you don't need to answer this question if you don't have anything more to add.

[umkay]

Originally Posted by Alessan

My brother has a C6 spinal injury, which left enough muscles active in his shoulders and arms to push his wheelchair, feed himself (with help) and drive a (modified) van. I can only imagine how hard it is for you.

I assume you have someone to help you out. Family, in-home help or both?

How much can you do yourself? How are you typing this?

I'll answer your question first, as it will explain why I am sometimes slow in responding to posts.

I have a variety of interfaces that I use to access my computer and phone:

1) Old school: I sometimes use a mouthstick, which is exactly what it sounds like. The pro is that this is very precise, but the con is that it's time-consuming.

2) Really old school: I have someone with me 24 hours a day, whether it's one of my paid attendants, of which I have 4 who work in day/evening/weekday/weekend shifts, or a friend or family member. When it's a hassle to get me all set up at my computer, I'll dictate to one of them. The pro is that it's very fast, the con is the lack of privacy (my mom will not be taking any dictation on the devoté thread I started).

3) Modern times: I have a chin-operated mouse that plugs into my laptop. The pro is that it offers me the typical web browsing experience. The con is that it's only for viewing content, not creating it.

4) Space age: I have speech recognition software on my computer and even my iPhone that allows. The pro is that it's fast and great for long-winded musings. The con is elephant gobble undertake happy cigarette.

Oh and I can do anything that you can do using only your neck and head. Which is to say (physically) not much.

[Ambivalid]

Would you ever consider dating another wheelchair user? (No, I'm not hitting on her lol)

[gracer]

What is everyday life? Work, study, trying to take over the world?

My BIL is doing a Masters in medical industrial design, and he invents things like super-awesome-space-technology wheelchairs (well, that's what I imagine he does anyway, he seems like a wizard to me). Is there anything in particular you would like him to invent?

Have you seen this video (or similar) of a woman who uses her mind to operate a robot arm? Is it something you ever look into/think about? If something similar did become available to you, would you be interested? What do you think it could change in your life?

Thanks for doing this thread!

[heathen earthling]

Overall, are you happy to still be alive?

[EmAnJ]

Thanks for starting this thread!

Do you mind sharing what exctly happened in your snowboarding accident?

[Athena]

I'm interested in hearing about your accident as well.

Also, it must have been incredibly difficult to be told at 14 that you were a quadriplegic. How did you get through that? Did it take a while to realize that you could indeed still have a life, though probably not the life you envisioned?

[umkay]

Originally Posted by hajario

How do you operate your chair? Do you still have feeling below your neck? Do you have in-home help?

I have a joystick on my chair that I manipulate with my chin. Pretty much just like a video game joystick.

SCIs are (somewhat controversially) classified as either complete or incomplete. Interestingly, this doesn't have anything to do with whether or not the cord has been completely severed (pretty rare, actually). Most debilitating SCIs are a result of the contusing of the cord tissues, or embedded bone fragments, from broken vertebrae. Complete or incomplete just refers to the level of sensation or movement below the level of injury. It is pretty common for a spinally injured person to maintain some movement or sensation, even those who are classified as complete (thus the controversy). The CNS is a complex and remarkable and misunderstood piece of machinery. Even when your cord is mashed up pretty good, oftentimes connections remain.

All that being said, when your cord is completely snapped in two, you're as "complete" as it gets; I have no movement or sensation below my neck. But I can still have orgasms, I know when I'm hungry, and my legs and arms spasm in response to pain stimuli even though my brain can't "feel" it.

Yes, I have personal care assistants who come in shifts. I say I live semi-independently--I have my own little house on my parents' property, and I can get along there just fine with my round-the-clock assistants. But it's nice to have family nearby if I need or want them.

[Theobroma]

Do you have a job? Would you like to? Did you finish high school? College?

Another thing: if we meet, would you prefer that I stand to chat with you, or kneel as I would with a child at your height in the chair? (If I can't sit, of course.)

Hope the questions aren't offensive! I don't mean to be. I'm also interested in the assumptions that annoy you.

Thanks!

[umkay]

Originally Posted by MyFootsZZZ

Does it effect your dating life? How?

I think a lot of guys/people assume that I'm not interested in dating or sex. I don't even have a word out before their mind has jumped all the way to "Can she do it? Probably not." But I can. And I have. So that's annoying.

I also end up in the "friend zone" a lot. I have a pretty active social life and I'm a friendly person, so I meet guys a lot. And I tend to get along with dudes pretty well. But I always end up being the girl they call when their AB girlfriend dumps them or doesn't want to go to the monster truck rally.

Even when I do meet a guy I like and who likes me back--THAT way--a lot of really awkward things seem to come up right away. Say he asks me out to dinner. Okay, well it's better if he drives to my house and then we take my van from there. He's never used a vehicle ramp, and he has no idea how to secure my chair once I'm in. So now he gets to meet my mom, who suddenly pops up to help get me sorted out. Great--the first date is turning into a meeting-the-parents deal. Then we get to wherever we're going. Well, I sure hope he remembers what my mom showed him about operating the ramp. He manages to get me out without killing me. Cool. Oh wait. The restaurant is technically accessible, but it's tight and I hit every. single. table. with my chair on the way in. We haven't even started eating yet (which is a special kind of awkward, since I can't feed myself) and all either of us can think about is my disability and how complicated it makes everything.

Nevertheless, I've had several successful, long-term relationships, lots of fun short-term relationships, and even a few one-night stands.

[IvoryTowerDenizen]

I'm curious about the meal on your date. If you can't feed yourself does your date help you? Bring an aide? Something else?

[umkay]

Originally Posted by Musicat

I'm interested in the meaning/origin of that term. Does that mean only the "high" (upper body) functions are operable, or something else?

"High" quadriplegic is not a technical term, that I'm aware. But it's commonly used to refer to a person who is injured at the 4th cervical vertebra or higher. (Here's my injury level). I wish it meant that the upper body functions are operable, but it's the opposite. The higher up the spinal column the damage to the cord is, the more body functions are affected. Makes sense, right?

[umkay]

Originally Posted by Ambivalid

Would you ever consider dating another wheelchair user? (No, I'm not hitting on her lol)

LOL.

Honestly, at my level of injury, it's super convenient to stick to dating AB people. Is that lame? It's not that I've never been attracted to anyone else in a wheelchair, but the logistics give me a headache. And dating someone who has the same level of injury as me? That's crazytown. We'd never have any privacy and we'd have to hire some kind of sex worker to assist us in the bedroom. Maybe two.

My turn: Would you?

[umkay]

Originally Posted by gracer

What is everyday life? Work, study, trying to take over the world?

My BIL is doing a Masters in medical industrial design, and he invents things like super-awesome-space-technology wheelchairs (well, that's what I imagine he does anyway, he seems like a wizard to me). Is there anything in particular you would like him to invent?

Have you seen this video (or similar) of a woman who uses her mind to operate a robot arm? Is it something you ever look into/think about? If something similar did become available to you, would you be interested? What do you think it could change in your life?

Thanks for doing this thread!

I work from home, in recruiting. I dabble with the idea of going back to school for marriage and family therapy, though. I think I'd really like that.

Your BIL should invent a great standing wheelchair. They exist but they're awkward. It'd be nice to talk to people eye-to-eye again.

And YES I've seen that video and think it's awesome! I'm not one of those gimps who daydreams all day about a "cure," but I have a lot of hope for technical advances in the near future that will make my life easier/more fun. This one looks cool. However--I'm NOT putting a computer on top of my head. Any additional independence it would give me would not compensate for the weirdness of wearing that thing and totally alienating and disturbing everyone I meet.

[Farmer Jane]

Originally Posted by umkay

LOL.

Honestly, at my level of injury, it's super convenient to stick to dating AB people. Is that lame?

Was that a joke? Cause I see what you did there.

[umkay]

Originally Posted by heathen earthling

Overall, are you happy to still be alive?

Yup. I've always been a pretty cheerful person, and that didn't change when I got injured. I had about 6 months of self-pity and another 2 years of feeling really awkward in public. But acceptance is a beautiful word. I like my life. I'd prefer not to be paralyzed (obviously), but if the only other option is death, I'll choose life as a quadriplegic.

[umkay]

Originally Posted by EmAnJ

Do you mind sharing what exctly happened in your snowboarding accident?

My older cousin worked at a ski resort and he and my brothers and I were goofing off after hours and built a monster jump (bad idea #1) and then started using it (bad idea #2). My first attempt was timid, but I landed safely and felt like a boss. My second (and final) attempt, I went for a backflip (bad idea #3). Mid-air, it felt wrong, so I attempted to bail, and landed on my head. Oops.

[umkay]

Originally Posted by Pitchmeister

Can tell us about a few of those highly offensive assumptions you mentioned?

• That my brain is injured because my body is.
• That I'm depressed about being in a chair and spend all my time thinking about how much my life sucks.
• That I will never/should never attempt to be a wife or mother, because I couldn't do those jobs well.
• That sex isn't enjoyable for me because I experience it differently than others do.
  That I don't have goals or ambitions beyond waking up in the morning.

That's just off the top of my head. I'm sure there are others.

[umkay]

Originally Posted by Athena

Also, it must have been incredibly difficult to be told at 14 that you were a quadriplegic. How did you get through that? Did it take a while to realize that you could indeed still have a life, though probably not the life you envisioned?

It was hard. There's no other word for it. I have a great family and I got all the help I needed. But there's no way to make that kind of transition easy. I was in the middle of 8th grade when the accident happened, so my immediate concern was how much different high school was going to be than how I had imagined. In the end, it was different, but I had a good time in high school. And that's sort of been the theme of my life from that point forward: Different, but not bad.

I will say this though--in some ways, I'm glad I was injured so young. I was too young to drive, so I didn't lose that independence. And I still lived at home, so I didn't have to face the humiliation of moving back in with my parents as an adult. I wasn't married, so I didn't divorce a guy who couldn't handle being married to a women so radically different from the one he had met. Et cetera.

I also--and this is going to sound really weird--am sorta glad that my injury is so complete. With a full sever of the cord, there's no hope. Well, short of a literal miracle. I see a lot of SCI folks panting after a cure so much that they forget to live their lives now. They are SURE they're going to walk again someday, so all their time and effort (not to mention money) goes into that dream. They see the chair as a temporary thing, so why get comfortable with it or make any plans that include it? So I'm thankful I don't have that pressure.

[umkay]

Originally Posted by Theobroma

Do you have a job? Would you like to? Did you finish high school? College?

Another thing: if we meet, would you prefer that I stand to chat with you, or kneel as I would with a child at your height in the chair? (If I can't sit, of course.)

Hope the questions aren't offensive! I don't mean to be. I'm also interested in the assumptions that annoy you.

Thanks!

1) I do have a job. I work from home as a recruiter, but someday I'd like to be a therapist.

2) I finished high school and college.

3) Ohdearmaude--please do NOT kneel to talk to me. For precisely the reason you mentioned: that's something you do with small children. You can talk to me just like you'd talk to a person sitting in any chair. I'm used to looking up to have conversations; it's not weird or uncomfortable for me.

And if you just met me and you offer your hand for a handshake before realizing I can't shake your hand, just let your hand drop and don't mention it (happens all the time and the awkward factor balloons when you try to explain yourself/make a joke/stammer an unnecessary apology).

I mentioned some really offensive stuff in another post, but I thought I'd say here that I'm not offended when people use common colloquial or figurative expressions that would imply that I am able-bodied. Such as "Let's go for a walk," "Lend a helping hand," "Get a leg up on him," or "I've gotta hand it to you" et al. And if you're describing a NASCAR event you went to and the "breakneck" speeds the cars flew by at, I probably won't even notice the word until you get a blushy and weird. So just don't.

[Farmer Jane]

What sized town do you live in? Do you like your location? Do you ever think it would be easier/harder living somewhere else (assuming your family was around)?

[Ambivalid]

Originally Posted by umkay

LOL.

Honestly, at my level of injury, it's super convenient to stick to dating AB people. Is that lame? It's not that I've never been attracted to anyone else in a wheelchair, but the logistics give me a headache. And dating someone who has the same level of injury as me? That's crazytown. We'd never have any privacy and we'd have to hire some kind of sex worker to assist us in the bedroom. Maybe two.

My turn: Would you?

No, that's not lame at all. I understand that totally. The real-world difficulties that would be ever-present with two wheelchair-users being involved in a romantic relationship are nothing to brush off. I guess my question is, if you found yourself really attracted to someone who used a chair, and found that you liked everything about them, would the fact that they too were paralzyed and using a wheelchair cause you to not pursue that person for a potential relationship?

As far as me; while I've never actually dated another 'wheeler' myself, I'd like to like that if the right situation presented itself, I'd be open to it. I've found that this is a "hot-button" topic among other wheelchair users, at least the ones I've had contact with online and in other places.

[Ambivalid]

Originally Posted by umkay

• That my brain is injured because my body is.
• That I'm depressed about being in a chair and spend all my time thinking about how much my life sucks.
• That I will never/should never attempt to be a wife or mother, because I couldn't do those jobs well.
• That sex isn't enjoyable for me because I experience it differently than others do.
  That I don't have goals or ambitions beyond waking up in the morning.

That's just off the top of my head. I'm sure there are others.

How about that you are "reproductively challenged"?

[Rand Rover]

Does your chair tilt back every so often? I've seen folks with chairs like that and never understood the reason for it (beyond my layman's conclusion that it must be necessary to swab your juices around every once in a while . . . or something).

Also, if I may violate the format a bit and offer a humble suggestion (which I'm sure you've already considered, but thought I would throw it out there): reading about the issues with first dates got me thinking that dinner at your place may be a good first date option.

[Springtime for Spacers]

Originally Posted by umkay

I work from home, in recruiting. I dabble with the idea of going back to school for marriage and family therapy, though. I think I'd really like that.

Your BIL should invent a great standing wheelchair. They exist but they're awkward. It'd be nice to talk to people eye-to-eye again.

And YES I've seen that video and think it's awesome! I'm not one of those gimps who daydreams all day about a "cure," but I have a lot of hope for technical advances in the near future that will make my life easier/more fun. This one looks cool. However--I'm NOT putting a computer on top of my head. Any additional independence it would give me would not compensate for the weirdness of wearing that thing and totally alienating and disturbing everyone I meet.

My mind immediately starting coming up with solutions to the computer on head problem. One would be incorporating it into some more conventional looking headgear. like a hat or even big hair. The other is very cyberpunk, having a small plug (possibly concealable in the hair) to which a cord is atttached when needed. How would you feel about either of those? I could see this kind of brain interface thingy having all sorts of applications leading to it becoming more commonplace and all kinds of design solutions coming up.

[Rachellelogram]

What do you recruit for? It's awesome that you work. I hope it's not offensive to say that. But, I didn't expect it. I know a couple of people who are legally considered totally disabled (but not nearly as disabled as a quadriplegic) who don't work, don't want to work, and just collect social security (maybe because they got disabled later in life? I don't know). Are you ever mad, angry, or resentful because of your disability? How did you take tests in school?

This one is kinda personal and you can ignore it if you like, but if you have no sensation below the neck, how can you have orgasms?

[Theobroma]

Ha! Glad to hear that you so indeed have a sense of humor about figures of speech. After all, if I said that someone "flew through a red light" you wouldn't assume that he could fly.

Thanks also for not being offended at the curiosity of folks who can barely imagine your lifestyle.

Another question: how much privacy do you get most days? How do you eat in restaurants, and is that an enjoyable activity?

Thanks again. You are super cool. And I am totally stealing "ohdearmaude".

[Brynda]

Therapist as in psychotherapist? I am a psychologist and used to work with SCI patients. At one rehab center, we had a chaplain who used a power chair due it spinal bifida, and at another, our physician had a C7 injury. They had a tremendous impact on our patients, most of whom were very recently injured. Of course, you wouldn't be limited to working with others with SCI or disabilities, but man, you could change some people's lives just by showing up.

I love my profession, and if you want to talk about it, feel free to pm me. If phone is easier, I will send you my number.

[monstro]

How does it make you feel when you hear about able-bodied people being depressed about their lives? Do you ever think, "Must be nice to be able to walk AND whine"?

[cwthree]

Originally Posted by umkay

But I can still have orgasms, I know when I'm hungry, and my legs and arms spasm in response to pain stimuli even though my brain can't "feel" it.

Does your sensation and/or awareness of hunger differ from before your injury? How so?

If you don't mind, what do you feel when you have an orgasm? When I have one, much of what I feel is below the neck. There's definitely a component that's above the neck, but it's really hard to separate it from the rest of the experience.

[umkay]

Originally Posted by IvoryTowerDenizen

I'm curious about the meal on your date. If you can't feed yourself does your date help you? Bring an aide? Something else?

I can't use my arms, so yeah--somebody's gotta help me get food to my mouth or I die.

I have assistants who help me with this on a day-to-day basis. But if there's anything that kills the mood on a date more than my wheelchair, it's my paid attendant being along for the ride. So I don't bring them along on romantic excursions. If the dude is going to have a hard time helping me eat, he is really not someone I should be dating anyway, KWIM?

[umkay]

Originally Posted by Farmer Jane

Was that a joke? Cause I see what you did there.

[umkay]

Originally Posted by Farmer Jane

What sized town do you live in? Do you like your location? Do you ever think it would be easier/harder living somewhere else (assuming your family was around)?

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...

[Blackberry]

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.

[aceplace57]

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.

[etv78]

I have spina bifida, so I can (sorta) relate. drop me a PM.

[umkay]

Originally Posted by Ambivalid

I guess my question is, if you found yourself really attracted to someone who used a chair, and found that you liked everything about them, would the fact that they too were paralzyed and using a wheelchair cause you to not pursue that person for a potential relationship?

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.

[umkay]

Originally Posted by Ambivalid

How about that you are "reproductively challenged"?

GAH. Exactly.

[umkay]

Originally Posted by Rand Rover

Does your chair tilt back every so often? I've seen folks with chairs like that and never understood the reason for it (beyond my layman's conclusion that it must be necessary to swab your juices around every once in a while . . . or something).

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.

[Incubus]

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)

[umkay]

Originally Posted by rachelellogram

What do you recruit for? It's awesome that you work. I hope it's not offensive to say that. But, I didn't expect it.

Are you ever mad, angry, or resentful because of your disability? How did you take tests in school?

This one is kinda personal and you can ignore it if you like, but if you have no sensation below the neck, how can you have orgasms?

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.

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.