Pah. Public restrooms are for schmucks and paras. I have a supra-pubic catheter through which I’m intermittently cathed. [For the uninitiated, that’s a tiny hole in my lower abdomen to which my bladder has been rerouted. This is very sanitary, easy to access, and far less infection-prone than an indwelling catheter in my urethra, which is why I chose to have this procedure, a favorite among female quads who lack the dexterity to cath themselves]. Generally, upon arriving somewhere, whoever’s with me will quickly cath me in the privacy of my van. On a normal day, I only need to be cathed every 4-6 hours, so I have a lot freedom to be out and about without having to deal with public restrooms.
And I do a bowel program every other morning at home, so I don’t need the restroom for number two either.
I don’t involve dates in this aspect of my life until my date is my committed boyfriend. At that point, he’s gotta know how to cath me to avoid a potentially life-threatening bout of autonomic dysreflexia. But again, it doesn’t need to happen in a public restroom, thank Maude.
For sure for sure–I don’t mean to imply that you, as a non-AB guy, can’t have a “normal” relationship or that an AB woman wouldn’t feel “secure” with you.
I’m speaking specifically as a woman with a significant physical disability myself. I guess I meant, if you and I dated, would you be able to assist me with transfers to and from my chair? In an emergency situation, like an AD attack, things have to move quickly–would you be physically capable of assisting me? And I’m not sure what the extent of your mobility is, but if you can’t move your lower body, and I can’t move mine at all, how would sex work? (I’m specifically referring to intercourse, though I’m keenly aware so many other nice options are available). And would you be cool with the spectacle of two wheelers, one in a stare-inducing chin-control power chair, going down the street together, sitting at a restaurant, going to a movie, etc?
I will be interested to hear your answers, since I guess I’ve just assumed that the answers would be no, no, not well, and not really. But hey–if I’m wrong, knock some sense into me!
I’d say I’m able-bodied in my dreams about 80% of the time. Weird, because I’ve been paralyzed for almost half my life. In a couple of years, I will actually have been in a chair longer than I was able-bodied. It’s not generally a big emotional thing in my dreams–I’m not jumping with joy that, hey ma hey pa, I can WALK! It’s just me living my current, normal life, except I can move.
I think this is getting towards what I am talking about. It’s the internal feelings we have about others with disabilities that gets us first uncomfortable with the idea; but really it’s the internal struggles we have with our own disabilities that drives this opinion.
I mean, I am cool with myself wheeling down the street; and I’m cool when I’m wheeling with a person who is walking with me. I am comfortable in my wheelchair, so does that extend to being comfortable around other people’s wheelchairs? Umm, not as much as I’d like to admit. To be completely, totally truthful. And why is this? Well, that’s a whole 'nother topic…
I find, as many disabled people do, that a joke can diffuse a situation that would otherwise be awkward. If the options are awkwardness or a self-deprecating joke, I will always go for the joke. I also find that it puts people at ease to know I don’t take myself too seriously. That being said, I do not find it funny for someone I don’t know to make me the butt of a joke. Not that that happens often; if anything, people are too careful when talking to me.
As for family, my mom is uptight about my disability and has never gotten over the “tragic” aspect of my injury. She is annoyed when I joke about it. And she would claw someone’s eyes out for “making light” of my situation. Over my protests. My dad is not uptight about it, but he doesn’t see the humor there either. My brothers, well, my brothers treat me exactly the same as they did before I got hurt. Which is to say, they love me like crazy but give me crap constantly. My disability isn’t off-limits, and they don’t treat me like I’m made of glass emotionally or physically; I have been tossed over a shoulder and dunked in the pool on more than one occasion (yes, we are all adults, but I’m the youngest in a family of 4 older boys and old habits die hard). And I wouldn’t have it any other way. Though it goes without saying that they know my limits and would never be cruel or put me in danger.
Hm. That’s a trickier question than it seems. My first reaction is to say that my income from working covers 100% of my needs and wants. But then, I live on my parents’ property in a house they own, and they don’t charge me rent. I also don’t grocery shop–I just give my mom a list every week of whatever groceries or toiletries I need, and she picks them up when she’s out getting stuff for herself and my dad. And my parents have also paid for all the really big adaptations to my living quarters, as well as my fancy chairs and vans and environmental control unit upgrades. Since I was only 14 when I got hurt, it seemed obvious that they would provide these things for me at the time. But as I got older, they never stopped doing or being able to do that for me, so it has continued. I don’t feel “entitled” to them looking out for me in this way, but they are happy to do it, so it makes sense for us as a family to co-exist like this. I make a good living, but not nearly enough to afford the lifestyle I have thanks to my parents’ generosity. (FWIW, they are very generous with my brothers, too).
So you’ve probably gathered that no, I don’t get any assistance from charitable organizations.
I’m not averse to porn, but here’s something you may not have thought of: The conscious connection between my brain and my body (my spinal cord) has been totally severed. Ergo, if I have sexy thought or see a sexy image, it stays in my head–the highway to the other pleasure centers in my body is permanently out of service. That doesn’t mean I don’t get and enjoy a psychological kind of sexual pleasure from seeing, hearing, smelling, tasting something sexy. But I will never orgasm just from something I see/hear/smell/taste. What I need for an orgasm–ALL I need, actually–is physical stimulation of my genitals. Of course, an orgasm wouldn’t be nearly as sweet to me if the psychological aspect of it weren’t present, but the mind is not necessary for it the way it usually is for AB women. In a way, I have a superpower most women don’t possess: the ability to be thinking about laundry mere moments before I climax. Not that I’ve ever done that. Though I’ve heard of AB women who can orgasm just by thinking about something, and I’d much prefer that. Because the downside is that, since I do need physical stimulation (and lots of it) to orgasm, and I can’t move very much of my body, I can’t take care of it myself.
I don’t have a weight problem, but plenty of quads do. I blame genetics and good health care, alas, and not any quad superpower. When I got hurt, I was about 5 feet tall and weighed maybe 100lbs soaking wet. I was a wiry little athlete, though, and I was strong. By the first anniversary of my accident, I had gained about 20lbs, and that’s where I’ve stayed for the last 13 years. I haven’t grown vertically, so if you’re following along, you’ll know I’m 5’ and 120lbs. My body composition and muscle to fat ratio has radically changed, though, as you can imagine; my belly pooks out because I don’t have abdominal muscles, so I can’t hold my tummy in like AB people do almost subconsciously all day every day, but my arms and legs are spindly little matchsticks (does your atrophied legs girl have a brother, Ambivalid?).
I don’t count calories, but I’m careful with what I eat. I don’t have a big appetite, so that’s easy, though I do have to make sure I get a certain amount of fiber and fluids each day for the old bowel and bladder to function properly. There’s a scale function on the hoist that helps me transfer from my bed to my chair, so I check my weight every day and adjust my intake if it starts going up. I also have an FES bike, to which my hands and feet are strapped and electrotrodes placed on my skin to stimulate my muscles to move. I can actually get a cardio workout from this, though I’ve never lost any weight due to it. I think my body is happy where it is.
Initially, my cousin was suicidal. He was the oldest one of us, and he was the one goofing off at his job. I don’t think he’s ever stopped feeling guilty for it, but as he’s watched me live my life over the past 13 years and not be totally miserable, I think the sting has eased.
Interestingly, my parents weren’t mad at my cousin–it was my brothers that they were furious with. I am the youngest, and the only girl, and the unspoken rule was always that they were supposed to look out for me. My oldest brother was at a college study abroad program at the time, but my second and third oldest brothers, as well as my twin brother, were all held responsible. My parents are great, very loving. But I know my dad in particular said some things to them that haunt them to this day. It’s not the prevailing sentiment in our relationships, but I know in the back of their minds, they all carry a weight of guilt. I know this because it’s a morose tradition of ours to all get drunk on December 22nd each year (the day it happened) and talk about it. That’s the only time we talk about it, though. And I don’t think any of us have a desire to talk about it any more frequently than that.
But here’s where I’ve always come down on it: It was my dumb @ss that tried to pull off a trick I shouldn’t have. I got myself paralyzed, not my brothers. Because I can guarantee you, nothing short of them physically chaining me in the house would have stopped me from tagging along with them that day. And nobody taunted me or suggested I try to flip off a homemade jump into icy snow. That was all me. And I love my brothers. So, yeah, I feel guilty that they feel guilty.
I buy this. I mean, if I’m honest, I’m not 100% comfortable in my chair. Of course, I don’t mean physically, but rather psychologically. I am totally used to it, and it doesn’t bother me near as much as it did when I was first injured. But it’ll never be as effortlessly a part of my self-concept as being able-bodied was. A big part of this is the reaction of other people. So when the idea of wheeling with another chair user comes up, probably a fair amount of the weirdness I feel about it is my own baggage about my disability. (Did I mention it took me 2 years until I could even start saying the words “I have a disability”? So, yeah, there’s some stuff there).
Have you ever thought about sitting down (I know, I know) with your brothers and your dad, everyone having three-fingers of whiskey, and clearing the air? Get out all of the guilt, recriminations, and anger?
You seem marvelously adjusted, my dear. Stronger than I can imagine myself ever being.
But I wonder if there’s a poison inside your brothers and father that can be purged?
You’re the one who has been hurt. And you’re the one who can heal.
Damn! You are super fun and bright thanks for sharing so candidly. I hope you stay on and post regular like.
Do you have any fun stories of things you have done/tried on your own out of determination, like cook a meal or bake a cake find a way to open a bottle of wine and drink it all?
Thirteen years ago my PhD advisor’s teenaged son was rendered quadraplegic in a swimming accident. Shortly thereafter, my advisor withdrew from his distinguished career in internal combustion engine research and started a research center focused on improving the state of technology for disabled folks. I lost touch with him over the years, but his research center appears to be keeping busy.
Could you describe the accident in more detail? What did it feel like when you broke your neck? How long did it take for you to realize you were paralyzed? What was your immediate reaction? What was the trip to the hospital like?
Seconded. I’m a writer and I don’t think I’ve ever actually told someone that before. I’ve met lots of people who say “I should write a book” because they think their lives are so fascinating, and I thought “No, don’t” but umkay, your life is fascinating and you do have a great writing voice.
Thanks for making this thread, umkay. It’s answering all the questions I’ve always wondered about.
My question is this: How long ago did the accident happen? You had the accident when you were 14, and you said in a couple of years, you’ll have been in a wheelchair longer than you have been walking. That, and with some of the vernacular you use, I put you at…26?
First, haha, I didn’t even notice the “sitting down” thing until you mentioned it. This is what I mean about people being painfully aware of colloquialisms that, honestly and truly, just fly right over my head. Same goes for if you’d told me I needed to “take a stand” and face the issue.
My brothers still feel guilty about it, my parents will always be sad about it, and I will have to deal with it for the rest of my life–but I don’t believe there is any anger or recrimination among us left over from my accident. We’re not a perfect family (because there is no such thing), but we’re pretty darn functional at the end of the day. This is not to say that maybe my dad shouldn’t apologize for some of the crueler things he said to my brothers in the immediate aftermath, but I don’t think my brothers resent him for it. And I know they don’t spend their days feeling like sh*t because I’m in a wheelchair. I don’t–why should they?
I have a supra-pubic catheter through which I’m intermittently cathed. [For the uninitiated, that’s a tiny hole in my lower abdomen to which my bladder has been rerouted. This is very sanitary, easy to access, and far less infection-prone than an indwelling catheter in my urethra, which is why I chose to have this procedure, a favorite among female quads who lack the dexterity to cath themselves]. Generally, upon arriving somewhere, whoever’s with me will quickly cath me in the privacy of my van. On a normal day, I only need to be cathed every 4-6 hours, so I have a lot freedom to be out and about without having to deal with public restrooms.
It’s just me living my current, normal life, except I can move.