My beach chair actually floats away if I get too deep in the water, so I don’t get too deep in the water! :eek: I can get my feet wet, but that’s about it. However, this is SoCal, not the Caribbean, so the water is murky and cold. Just getting my feet wet is plenty for me (especially since I can’t feel it anyway).
Actually, I don’t ever go into the ocean around here (though I have on the gulf coast of Florida, and in Hawaii). It’s a little bit freaky for me to be in open water, and I only feel comfortable in the ocean with a life vest on and a very, very strong swimmer (or two) holding onto me.
It’s not so much the dysreflexia that’s a concern, but hypothermia. I can’t shiver or feel when I’m getting too cold, so too much time in cold water isn’t a great idea anyway. Incidentally, the beach in the summer also holds the risk of hyperthermia for me, so I have to make sure I don’t get too warm either. So, basically, the beach could easily kill me in at least 3 different ways, but I love it.
Okay, so the rational part of me thinks, What a tidy solution!
However, the part of me that has watched too many horror movies thinks, that is terrifying.
LOL. But, sure, if the level of care were totally equal, and there was no chance they’d go rogue and kill me or something, why not have my care done by a robot? It’d be less awkward, and I’d feel more independent.
Such a funny question!
ETA: I realized, I think the heart of this question is really, “Is there anything just nice about having human beings take care of you?” While I’m at peace with it being a necessity for me, the answer is no. I get plenty of human interaction with my friends and family; I don’t get any emotional or spiritual need met by having a person catheterize me, and I’d much prefer not to need someone to do it.
Thank you for this thread - I’ve been an avid reader of it and I really appreciate the way you’re sharing.
So If I met someone who was in a chair, like yourself, I reckon that after a while I’d become curious as to how they ended up in it; whether they’ve been disabled from birth or whether it was as a result of some later accident like in your case. Not that it’s any of my business, but I’d still be curious. Seeing as other dopers have asked you this question in this thread, I’m clearly not alone.
So I guess my question is just whether you find that people do actually ask you this question once they’ve made your acquaintance, whether this bothers you, and when (if ever at all) would be a good time for someone in my position (one of insatiable curiosity) to ask about how you ended up in a wheelchair.
This thread, and your amazing responses, have been fantastic!
I have recently been diagnosed with progressive MS, but I am pretty happy about how it all turned out. I am getting a wheelchair in a couple of weeks. I use an electric scooter all over the house and restaurants, but I can still walk with a walker from the hallway to the commode!
I am so embarrassed that I ever might have felt sorry for myself even for a nanosecond.
I have a complicated answer to this question, but it starts with a quote from the inimitable Tina Fey, about her famous scar:
"I’ve always been able to tell a lot about people by whether they ask me about my scar. Most people never ask, but if it comes up naturally somehow and I offer up the story, they are quite interested. Some people are just dumb: “Did a cat scratch you?” God bless. Those sweet dumdums I never mind. Sometimes it is a fun sociology litmus test, like when my friend Ricky asked me, “Did they ever catch the black guy that did that to you?” Hmmm. It was not a black guy, Ricky, and I never said it was.
Then there’s another sort of person who thinks it makes them seem brave or sensitive or wonderfully direct to ask me about it right away. They ask with quiet, feigned empathy, “How did you get your scar?” The grossest move is when they say they’re only curious because “it’s so beautiful.” Ugh. Disgusting. They might as well walk up and say, “May I be amazing at you?” To these folks let me be clear. I’m not interested in acting out a TV movie with you where you befriend a girl with a scar. An Oscar-y Spielberg movie where I play a mean German with a scar? Yes.
My whole life, people who ask about my scar within one week of knowing me have invariably turned out to be egomaniacs of average intelligence or less."
Love her.
Anyway, here’s my complicated answer: If I just met you, I know that you’re curious about how I ended up in a wheelchair, and I don’t resent you for that. But just because it’s out of the ordinary doesn’t mean you shouldn’t still follow the general rules of etiquette when meeting someone. We all have questions in our minds when we meet someone (“What ethnicity is he?” “Does she have any tattoos?” “Does he have a girlfriend?”). If you have any manners, you wait until it seems natural to ask those questions; you don’t just blurt them out.
If you ask me right away, within minutes of meeting me, how I became disabled, I will plainly tell you. But I will also silently judge you. Maybe that makes me a jerk or unnecessarily harsh. But I don’t ask you, “So, are you planning to have that mole removed?” or “Tell me about your last really awful break-up.” Because our relationship hasn’t reached that level of intimacy yet.
I don’t mind someone asking me about my accident, as long as they do it in an appropriate context. Meaning, we’ve gotten to know each other a little bit, and it’s a natural next step in continuing to get to know one another. If you ask me right away, before you know anything else about me, you’re really putting my disability before me. That’s annoying, because there’s so much more to me than my disability. (But, on the other hand, if you never ask me, I will think you are kind of weird. I know–I’m confusing).
Does any of that make sense? I feel like I’m not explaining myself very well. And, of course, this applies only to me. I can’t speak for other chair users (but they should feel free to pipe up here and answer if they’d like to).
ETA: None of this applies to this thread, FYI, which was started so people could ask their questions in a safe, semi-anonymous place.
Bingo. The point in a developing friendship where it’s reasonable to ask somewhat personal questions about someone’s back story don’t change just because the fact that there is a back story to ask about is totally and completely obvious upon one’s first meeting.
And even when you’re at that point, it’s a good idea to hold one’s questions until the opportunity to ask them arises naturally, rather than just asking them apropos of nothing.
I just wanted to say that I think it’s okay to feel sorry for yourself after receiving a life-changing diagnosis; I actually think that’s a crucial step in the process. I just don’t think it’s healthy to stay in that place of self-pity. Plus, it’s just not a good color on anyone.
Sounds like you are thriving in the midst of this life change. I applaud you.
When I was first hurt, doctors knew pretty quickly that I had completely severed my spinal cord. But, because of the bruising and swelling of the cord, and a condition called “spinal shock” that happens after an SCI, they didn’t know precisely where the break was. Initially, the were pretty sure it was at C2, which was the uppermost bone in my neck that I had fractured. I didn’t have any movement or sensation from the chin down, and couldn’t breathe on my own, which was consistent with a C2 injury.
However, as my bones healed and my spinal cord settled down (over the course of months), I started being able to turn my head a little. At first, it was only to the left, and only an inch or two, but it was promising. I also started being able to feel when someone did my trach care every day.
When it became clear to me sometime in the spring of 2000 that my parents were not going to let me home study my way through high school, I got determined to get off the ventilator before I returned to school. I started bugging my doctors about it, showing them my increasing movement and sensation. By the summer, I had gotten back all the sensation and movement I have today (which is to say, I can feel and move my neck quite well). They decided to let me try to wean off the vent, since it seemed my injury level was descending a bit.
The process was pretty simple: They started turning off the vent for a little bit each day and letting me try to breathe on my own. At first, it was just a few minutes, then 10, 20, 30. After each weaning session, they’d take blood from one of my arteries and run a blood gas test on it. This allowed them to see how effective my own breathing was, whether I was getting enough oxygen and getting rid of enough carbon dioxide, among other science-y things.
Each time the results were positive, the next weaning session could be extended. When I had shown that I could go 8 hours without the vent, they started letting me just use it at night, and then eventually I went a full 24 hours without the vent, and with no ill effects. At that point, my docs ordered my trach tube removed and it healed up really nicely (barely noticeable today) before high school started.
The whole process took about a month and a half for me, from mid-June to early August, though it could be longer or shorter for someone else.
Yeah, this makes a lot of sense actually, including the confusing bit. I guess there’s a point at which it’s awkward (and possibly insulting) for people to ask, and then there’s a point at which it’s awkward if they don’t. I can also see the point that Tina Fey makes about addressing what they think is ‘the elephant in the room’. I guess some people think that this is an issue that other people are too squeamish to touch, and that they’ll do someone a favor by bringing it up. What do you find happens more often: people bringing up the backstory too soon, or not soon enough?
I follow a lot of science/tech news. I read a story awhile ago about Rob Summers (former Oregon State baseball player) he had a complete spinal cord injury that paralyzed him from the chest down. Through experimental electrode implants in his spine he’s been able to, while hooked up to a machine in a research lab, stand on his own and do other things he otherwise cannot do.
I’ve also read a story about an experimental gel that they have injected into the spines of people with complete spinal cord injuries that allow some rudimentary type of transmission of signal through the gel medium and then to the rest of the spinal cord.
Do you ever follow developments like that and/or would you ever be willing to participate in any of the trials? I actually have a friend with a complete spinal cord injury (he has complete injury @ the C6 vertebra so he isn’t I guess considered a complete quad as he can sort of flop his arms around but has limited/no real fine finger movement and limited wrist and elbow mobility) and I’ve asked him the question and he basically has said he’s not interested. He’s in his 50s now and broke his neck at 16 riding a motorcycle, and he basically said he’d go in for a medically proven treatment but that he thinks being involved as a test subject would get in the way of living his day to day life and have little chance of reward.
I used to build equipment for physiological monitoring (EEG, EKG) and one of the things I remember people experimenting with was external electrical stimulus of muscles in order to maintain a certain amount of muscle tone in paralyzed limbs. Is this kind of treatment common or useful?
I also recall experimentation in artificial muscle stimulus that allowed a paraplegic to walk some sort of fashion. What is the state of the art in this technology?
In any case, I’ve got a ton of admiration for you. I talked to my cousin last night and he told me he recently had a stroke and was in rehab. He’s a very optimistic guy and we were talking about how a positive attitude can be tremendously helpful in dealing with terrible circumstances. I mentioned how inspirational you are.
[ul]
[li]The person who asks too soon, because they are just, as Tina Fey would say, “sweet dumdums”: I don’t mind these people so much, because they are harmless. This is just the way they ricochet through life, eagerly asking chubby women when they are “due,” bringing up their ex-boyfriends on first dates, and telling strangers on the bus about their rash. ;)*** (Roughly 50% of people I meet).***[/li]
[li]The person who asks too soon because they want to appear bold and sensitive and–most importantly–create a bloggable interaction with the brave crippled girl who “just doesn’t let her disability hold her back one iota:” Bleh. This type is more insidious and we are not going to be friends, because I’m not interested in being used to drive traffic to their dumb website. (Roughly 10% of the people I meet)[/li]
[li]The person who waits an inordinate amount of time to ask me, but when they do they make a big stinking production out of it, crying as if they were the one who got paralyzed (almost always followed by inappropriately TMI questions about how I go to the bathroom): This is less common, probably because I tend to befriend people with a little more edge. But when it does happen, I roll my eyes and do my best to stave off their attempts to reduce me to one of Jerry’s kids. (Roughly 5% of the people I meet)[/li]
[li]The person who never asks, ever, just radio silence on the wheelchair topic: What’s wrong with you?? My body doesn’t appear to work at all from the neck down, and that doesn’t even make you a little tiny bit curious? I will assume you a) have been lobotomized, or b) sneakily already asked one of my friends what happened to me, which in my opinion is a shortcut, though I can and will forgive you if you turn out to be super cool. (Roughly 20% of the people I meet)[/li]
[li]The person who asks at exactly the right time, in the right context, after getting to know who I am as a person, and isn’t overly emotional about it (though one little “that must’ve sucked” or “wow. I can’t imagine” is okay): These people are my faves. We are going to be besties. (Roughly–let’s see, what do I need to add up to a hundred here?–15% of people I meet).[/li][/ul]
