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.
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:
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.
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).
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.
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.
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?
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?
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.
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.
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.
