Nah, it was just a regular pool table.
Not strictly on-topic, but this makes me thing that EVERYONE should have to spend time in a wheelchair or similar situation, ESPECIALLY someone who has to deal with the public in any way, shape or form. Which is pretty much anyone except the hermit at the top of the mountain, really.
My very, very brief foray into needing accommodations last year (broken foot, struggled with steps, doors, and parking) was quite an education and I know I haven’t even scratched the surface. I haven’t had to deal with people staring, or airline boneheadedness, or anything like that.
Doors were a real treat -you don’t think of self-closing doors as more than an annoyance until you find you can’t get through them in time (the biggest offender: the ORTHOPEDIST’S OFFICE where, rumor has it, they have several patients who are mobility-impaired :rolleyes::p). Handicapped parking, the couple of times I needed to use it, was generally inadequate. Bathrooms down flights of stairs. I was fortunate in that I could manage, albeit slowly (and using my “special driving words”). Someone more impaired would have been quite out of luck in a number of situations.
First of all, umkay, you have a gift; it is a pleasure to read your words. I would be following this thread just as intently, due to your wonderful writing style, if it were titled “Ask the Girl who Considering Getting a Manicure”.
So…how many hours a day are you in your chair? Is your skin still in good shape? I think most folks don’t realize how quickly a decubitus ulcer can form on someone in your situation, and how serious it can get.
Similarly, what is your sleeping position? Does it vary? Does it make any difference to you at all how your body is (and I apologize is this is a horrible way of phrasing it) arranged?
Finally, when you first wake up in the morning, do you ever – even for a millisecond – forget that you are paralyzed?
Thank you for educating us; you are doing a good thing here.
mmm
It’s a little bit terrifying. But we mitigate the risk a couple ways. One, at home, I have an attendant awake in my house at all times. She keeps tabs on me overnight with a baby monitor that sits on my nightstand. I can call her in if I’m feeling crummy or if I need something. But, I also have an environmental control unit (ECU) to help me do things once I’m lying in bed at night. There’s a sip and puff switch attached to my bed and positioned near my mouth, with which I can access my ECU to make a phone call (like 911), turn the lights on or off, turn on a fan, and sound an alarm. Conveniently, the switch has an integrated Camelbak system, so I can get a drink of water myself without needing to call anyone into the room.
Also, the number one cause of AD is an overfull bladder, so I leave a catheter in overnight for continuous draining into a night bag. That eliminates probably 80% of the potential for an AD crisis in the wee hours.
That’s interesting. I rarely get asked what it “feels like” to be paralyzed. But the two options you suggested are both true at different times. Yes, sometimes I feel like a disembodied head, weightlessly floating above a body that I no longer have any conscious, physical attachment to. However, more often, it’s the former; I usually feel acutely aware of the body attached to me, and how it’s just totally dead weight. I sometimes get the feeling that it’s pulling me down in my chair, even when I can see that I’m not sinking down or otherwise changing position in my chair. This leads to me straining my neck muscles ever so slightly all day, unconsciously trying to pull up from the slouch. Which leads to chronically sore neck muscles.
They don’t look or work like they used to, but they’re still mine. I would be bummed if I had to have an arm or a leg amputated. I doubt it would be the kind of soul-reckoning it would be for an AB person, but it would still suck. I like to think I’m still a whole person, and having an intact body is helpful for that (in my specific case; I think amputees are still “whole people”).
More like, “Hell no, those are a part of me!” But I’m a practical person, so the “just in case” thing is true, too.
[quote=“gonzoron, post:188, topic:622436”]
(and getting back around to what spurred this line of questioning in the first place)
Sorry in advance if this is a weird or disturbing question… If having toes pinched in a shoe could kill you, would you even consider proactively getting rid of them? Assuming that a doctor would agree to do it, would you be less susceptible to AD (and hence have a longer life expectancy) with your arms and legs removed?
I think I already answered this, but I also want to say that being an amputee isn’t a walk in the park. I don’t know all the particulars, but I think there’s some stump maintenance and other hassles to consider. I have to imagine the fact that I’d be paralyzed and so also couldn’t feel the stump would complicate things further. And, I have no idea if this is true, but since I already have temperature control issues, I imagine having a smaller surface area to my body might mean more rapid shifts in temperature that would require a lot more monitoring and correcting.
Ahaha! I’d love to see that headline someday, but I’m not counting on it. Nevertheless, I’ll keep my arms and legs, just in case. 
They haven’t changed much–I never needed much sleep, and I still don’t. Though, I’ve often thought (as I posited earlier in either this or my other thread) that, as I’m getting older, I would be more tired if I were AB. I don’t have any data on that, just my own goofy theory.
First, I’m obsessed with dobies! You’ve got a real beauty there. 
Second, eh, I don’t know what I think. My family is nominally Catholic, so we do the whole Christmas and Easter thing. But…I don’t know. No change from before I got hurt anyway.
That dirty dog!
As a sidenote, did he get tangled up with a lot of devotees this way? Seems like he would’ve…
mkay, sorry to hijack, but gonzoron’s question about noticing body you can’t feel makes me wanna add my .02: My sensation ends at the bottom of my ribcage: I can still sense my legs are there, but they’re, as you said,“dead weight”.
I don’t go into the shower with my power chair! :eek: I have a shower chair (which doubles as my commode) for that. It’s waterproof and totally made for this, so no worries about it getting wet or anything.
Yes, someone has to bathe me; my carer walks into the shower with my chair. (I have one of those removable shower heads so she doesn’t get soaked as well). Does it bother me? Not as much as it did when I first got hurt–let me tell you, the first time I saw a shower chair, I cried really hard. Something about realizing that even in the shower I was going to be in a wheelchair, and finally realizing that someone was going to have to bathe me for the rest of my life. Yeah…it wasn’t fun to start puberty as a high quadriplegic.
Now? I dunno. It’s a part of my life that’s unavoidable, so I don’t cry about it or get overly emotional, but it’s not my favorite activity and I don’t think I’ll ever, like, enjoy it. Let’s just say that I don’t really relish my day until I’m up and dressed and in my chair. Then I have a little bit of independence and privacy and I start to feel like a normal human being.
After the shower, my attendant dries me off and transfers me back to my bed with my hoist. There, she’ll cath me, dress me, cough me, and walk my arms and legs through some passive range of motion exercises. Then, she uses the hoist to get me into my power chair. We go into the bathroom once again, where she’ll brush my teeth and do my hair and makeup.
From start to finish, the whole thing takes about an hour and a half, 2 hours on BP days. I like to be up at 5:30am, 6:00am at the latest, so I can start my day in step with the AB crowd.
And, you’re right on–a wet chair is a big no-no for skin care. I have to be really careful that I don’t ever get my seat cushion wet, or sit in wet clothes or something.
Girlfriend, I don’t feel anything below my neck, so no labor pains and no period cramps. However, that’s somewhat of a liability. Someone else already addressed this quite well (thank you!), but anytime my body is in pain, it’s dangerous for me. Severe pain, like what I assume labor pains would be, would be life-threatening. So I’d definitely have to get an epidural for labor and delivery (which I know sounds ridiculous). But even mild pain, like what I assume period cramps are like (didn’t have a period until after my injury), is enough to bring on the AD.
How do you meet new guys? Is there anything you have to do to make them more comfortable with your condition?
Are you the one making all the first moves, or is it the other way around?
So… this is an embarrassing question to ask, but… how do you know when you start your period? Does your carer have to notice and tell you? Are you lucky enough to be regular, so you know sort of when it’s going to show up every month? Does it even matter since you have a catheter?
Thank you for giving us all this information. You are an excellent writer and I wish you success as an author!
How do you feel about the Americans with Disabilities Act? Do you feel the amenities it regulates are adequate? If you had the opportunity what would you add?
Um, the catheter uses a different orifice, unless the caregiver is very, very confused! (well, even if Umkay was cathed using the urethra it would). So keeping clean would still be an issue.
I thought of another question, that I don’t think was answered upstream: When you sleep, do you use any kind of assistive technology for breathing like CPAP or something in that realm?
This may be more personal than the biology bits, so of course you don’t need to answer… Do you plan to continue full time paid carer 24/7 forever, or is having a potential husband doing some of your daily routine a consideration for you? I know there are couples that are happy but sleep in separate beds or even rooms, but I expect some guys would not mind taking on a portion of the “work” of caring for you. It might make the showering less of an ordeal at least.
Say that you and I hit it off as friends. What would be some fun things to do together? I really have no idea what I could even suggest!
(Drive-by comment…) Such a complicated issue! And I don’t even speak from personal experience but from being on disability messageboards and reading the discussions/stories on this subject matter. From everything I gather, the long-term success and happiness of a relationship stands better chances with the AB partner taking on less of a carer role and more of a partner one. For a number of reasons; not the least of which is simply an overburdening of responsibilities on the AB partner, who may begin to resent the disabled partner over time-or see them as more of a responsibility than of a lover/partner.
Spouses of the disabled should not be regarded as free caregivers/nursemaids. It’s unfair to the spouse.
I mean, sure, help out occasionally, but seriously, the spouse is supposed to be a spouse, not a substitute for being able to take care of oneself. That’s why you pay the caregivers, to perform functions for the body the disabled person can not do for him/herself.
Sorry, touchy subject - as the spouse of disabled person I get cranky when people outside of the relationship insist I must do this or that thing. I think it dovetails with the effed up system of healthcare in the US, that I am regarded as an easy way to “save costs and improve efficiency” rather than as a full human being. I am a wife, not a nurse.
Please note, of course, that other people may freely enter into other arrangements but both most of the medical/psych people I’ve dealt with, and most (though not all) spouses of the disabled I’ve encountered seem to take a similar view. Nor is this a blanket “I won’t do anything to take care of him” as I do things like purchase incontinence supplies for him while doing routine shopping and have had the “joy” of dressing a pressure ulcer on his ass for the lengthy time it took to heal. Then again, he’ll purchase menstrual supplies for me when he’s doing the shopping, and as related in one infamous thread he spend a couple months doing wound care on a horrific infection on my face. But really, expecting a spouse to be a “free nurse” is… well, that’s not what a spouse is. It screws up the marriage relationship and makes it something other than marriage.
I’d never known/thought about that issue before, but yeah, my first impression would’ve been to assume a spouse would take on some of the caregiving. With the reasoning laid out, I can see why one wouldn’t. But thinking about the why behind my initial reaction, I think it’s because most married people in general do act as nurses for their spouse from time to time. If my wife is sick, I make sure she gets her meds at the right time, make her chicken soup, fluff her pillow, help her to the bathroom, etc. So it’s a natural thought for most AB spouses of AB people that a spouse is there to help when needed. The difference of course, and what’s not immediately obvious, is that it’s one thing to be a nurse a few times a year, and quite another to do it every damn day. I can see how that would be draining and not a good idea for a healthy relationship.
Unless, of course, doing such things for your spouse gives you a boner.