Ask the Girl in the Wheelchair

In My Humble Opinion
221

Right. Occasional nursing is one thing, OK, expected, and normal for any relationship. Long term, though - hire someone else.

This can also come up with elderly couples and hospice at any age. When my mother was dying my dad was told in no uncertain terms he was to STOP taking care of her medical needs (that was taken over by my sister the MD, myself, and the hospice volunteers) specifically so he could spend those last couple months as a husband again and not her caretaker. I think it did quite a bit for his mental health, as he was so worn out from take care of her that his own physical (not to mention emotional) health was being neglected.

I’m guessing (and she’ll correct me if I’m wrong) that while many members of umkay’s family and her closer friends are capable of taking care of some of her physical needs, like catherization, normally that is done by the paid caretakers and is only done by friends/family when those caregivers are absent (such as on an outing where those caretakers aren’t accompanying her) and it can’t wait.

222

I suppose that might be an exception - but you’d still need caretakers for when said person is at work, asleep, etc.

223

Though my very, very first days in the hospital were filled with flowers and balloons and even a banner some of my girlfriends made, as weeks dragged on and I wasn’t getting out of the hospital, and the rumors spread that something really bad and really permanent had happened to me, the visitors thinned out substantially.

I’d say, in the immediate aftermath, I lost about 75% of the friends I regularly spent time with before the accident. But I don’t blame them–who has the emotional maturity to deal with something like that at 13, 14 years old? Besides, at that point in my life, most of my friendships revolved around soccer, cheerleading, swim team and hanging out at the mall hoping to see and flirt with the boys in our classes. I assume they went back to doing those things, which I certainly couldn’t participate in while I was in hospitals for months, and which they assumed I probably wouldn’t ever be able to participate in again.

However, a lot of kids I was more connected to because, say, our parents were friends and/or whom I’d known for most of my life, stuck around. These are people I remain close to to this day. Quality folks, and definitely “real friends.”

Though in rehab I’d screamed at my mother that I would not return to school, my parents (wisely, in retrospect) insisted that that was not an option. I got the rest of eighth grade off to recuperate and get used to life as a quadriplegic (and did coursework from home), but my parents told me I would be going to high school in the fall, chair be damned. On the bright side, I think this is what gave me the motivation to get off the ventilator, which I managed to do in August right before school started.

Hm, what can be said about returning to school and all your old classmates, after more than half a year away, and starting your freshman year in a giant sip and puff wheelchair (which I used at the time)? The night before the first day of school, I was so anxious I couldn’t sleep. I was getting used to my new life by this time, and personally adjusting, but I was nervous as hell about the stares and whispers I knew my new “look” was going to generate.

But my brothers were so awesome: I had one brother who was a senior at my high school, and his presence with me in the halls derailed a lot of the awkwardness. My brother was a popular athlete–if he was with me, I wasn’t a pariah. And my twin brother made sure we were in all the same classes that first year. He was such a support and friend to me. And his presence normalized me; seeing him walk with me to class and us talking and laughing like we always had, people started realizing I was still me, and they could approach me as such.

So, eventually, a lot of the people who had ditched me, came around. By the end of high school, I was pretty comfortable with my disability, and that seemed to make other people comfortable with it. It can’t be said that I had the “classic” high school experience, but it was a good one, nonetheless. Way better than I had thought it would be when I swore in the rehab hospital that I wouldn’t go. So I’m really glad I did. :slight_smile:

224

Your answer about labor and delivery was right on. The only (very tiny) thing I need to comment on is that many (maybe most) quadriplegics can drive, too. Most quadriplegics do not have as high an injury as I do and have at least some use of their arms and even their hands. Anyway, the more you know… :slight_smile:

225

Ahahahaha!

226

First of all, I just have to say that you’re a remarkable person, umkay. I don’t say that because you deserve respect solely on the basis of having to live your life as a quad. It’s the fact that you completely fucking own it and play the hand you were dealt without a twinge of self-pity, but with a whole lot of balls. (In a nice way. Girl balls, if you will. ;))

Scuba diving could prove to be an amazing experience for you. With the resources you have, it’s feasible that you could commision a diver propulsion vehicle with mouth/head controls. I’m not sure if it’s been done, but how fucking cool would that be? Diving is amazing for everyone, because you’re basically weightless underwater. It’s like floating around in space. What if you could float around and move yourself around at will, underwater? How fucking cool would that be?!

For the short term, though:

Communication is key in diving. Traditional gear doesn’t allow voice communication, for obvious reasons. Lacking hand signals, you will certainly want a full face mask with voice com. Check this out.

227

You are so kind. What a great compliment. AND a great idea for my next thread. :wink:

A LOT. I think I average about 13 or 14 hours a day (with maybe 2 hours on the couch or in my recliner). But I’m religious about my pressure relief and I haven’t had a pressure sore scare in a long time, years actually.

For years after my accident, a carer had to come into my room every two hours throughout the night to turn me to prevent pressure sores. So I spent time on my back, and both sides. But I often didn’t even wake up for this, being that I’m a heavy sleeper, and it doesn’t really bother me how my body is “arranged” (yeah, that’s an awkward word but I can’t really think of better one either!) at night. However, about 5 years ago, my parents heard about and bought me a special bed that self-adjusts throughout the night. So the bed moves me continuously, and I don’t have to have anybody turn me anymore.

Oh, but I should say, just because it doesn’t consciously bother me what position my body is in in bed, if my body is in an uncomfortable position that becomes painful, it could spark an episode of dysreflexia. So there is always some care to be taken with how I’m “arranged,” whether in bed or in my chair or on the couch or wherever.

Every single morning, actually. I don’t get all moony about it, and it doesn’t ruin my day, but after all these years it still seems natural to me to open my eyes in the morning and sit up and stretch, or roll over and look at the alarm clock. So I immediately go to do this, and that’s when I remember. Go figure.

228

It’s no highjack! I appreciate the input from all the other chair users, as mine is obviously not the only experience to consider.

Now I’ll highjack myself: I think I remember you saying that you have spina bifida. Were you always a chair user then, or is that something that came about later? (I know not all people who have spina bifida use chairs). I’m interested to know if you ever had mobility (and specifically, sensation) in your legs; and if not, how your “sense” of them developed. If you care to elaborate, that is. :slight_smile:

229

Sure! When I was a kid, I walked with a walker (later crutches). (SB is congenital) At age 10, I got my 1st chair, and I use it to get around. Fun anecdote to demostrate my function: when I was a kid my bro was lying on my bed and siad,“You can’t kick me.” I rolled over, bopped him in the nose. He was shocked! :wink: I have “skip patterns”. More anecdotes: I was having a wound closed in my hospital room (they assume my lack of sensation wouldn’t necesitate an OR), Well, I DID feel it, much to their surprise. Ask more, please!

230

I meet new guys the same way (I assume) you do: when I’m out with friends, through connections with work, and occasionally on set-ups.

BEER. :wink:

But seriously, I’m not usually interested in guys who seem stiff and uncomfortable around me, so I don’t often bother to work hard to “loosen up” a guy to get him to talk to me. The ones I like tend to already seem loose and comfortable around me. For example, my first long-term boyfriend just undid my chest strap and lifted me out of my chair and into a booth with him the first night I met him at a bar with some friends (after asking permission from me, of course). His charisma and obvious ease in his own skin were very sexy to me.

As with AB women, it varies. I will sometimes get up the cajones to ask a guy out, if I feel he’s been giving me signals or a friend mentions that he asked about me or something. As for the physical moves, I can’t really initiate contact, but I have been known to just tell a dude who’s giving me the eye to just kiss me already. :wink:

231

Oh, the poor guys reading this thread… :o

Thank maude, I’m pretty regular. I’m always between 26 and 29 days. So, on day 26, my carer will provide an, ahem, protective undergarment for me in the morning. She’ll do this until I have my period, when I switch to tampons. Yes, I’m aware that that’s shocking for people. But think about it–these women place my suppositories every other day; they are trained nurses and they are unflappable and this is just another Thursday for them.

And, I think you had a brain fart, but as I’m sure you know, menstruation occurs through the vagina, not the urethra. :wink:

However, just so you don’t feel like the only one who gets mixed up sometimes, I have to tell you that I just discovered, while trying to quickly grab a link for you to a page about catheters like mine, a misapprehension I’ve been under myself: I have always called my catheter a “supra-pubic” catheter, though I know it was done using the Mitrofanoff procedure. It’s confusing, because the Mitrofanoff procedure is a type of supra-pubic catheter (I think; now I don’t know what to believe), but apparently it’s not a synonym. Main difference being, you can’t intermittently cath through a supra-pubic catheter–that baby is in there. When I saw that on the page I searched for, I was like “Nooo. That’s not correct. Big dummy doesn’t know what he’s writing about.” Leading me on a rabbit trail that ended in me realizing that, for nearly a dozen years now, I’ve been calling it the wrong thing. :smack:

232

How do you maintain your sexiness? IOW, how have you continued to feel sexy and sensual? For example: when not being visited by AF, do you wear sexy undies?

233

You’ve mentioned that you have to watch what you eat, since you no longer burn calories as quickly as an AB person, and you don’t have the option of working out. As a food lover, I’m intrigued and have many questions about this:

  1. Has your relationship to food changed since your accident? I am thinking of the situation where people lose one sense and another is heightened - the classic example being “I lost my sight and my sense of sound became profoundly more sensitive”. Your taste buds still work just fine, I assume; do you savor food more or less since before the accident? Or is it impossible to say what the impact of paralysis is on your perception of food, because you’ve also gone from an adolescent to an adult, so you’d have changed anyway?

  2. What are your primary personal motivations for eating less? As you’ve stated, you now burn fewer calories. When you limit your food intake, are you thinking “damn, I don’t want to look fat!” or “damn, it would injure my health if I gained weight” – or something else?

  3. Do you wish you could eat more, or do you feel content with the amount of food you usually eat?

  4. If you one day woke up and said “screw this, I want to eat chocolate cake and Fritos every day, it would make me happy”, what would happen - would your caregivers cooperate? Would they call a close friend or relative and say “please try to talk umkay out of this, it will hurt her!” or would they say “sure, you want junk food for lunch, let’s go for it!”

  5. Most important of all, of course - what’s your favorite food?

234

It occurred to me, around the 14th mention of a mouthstick, that dental and oral care might be really, really important to you what with your mouth now taking on some of the duties of hands as well as the usual work mouths do. Do you feel keeping up with dental care is extra important? When you go to the dentist do they leave you in your chair or are you transferred to one of theirs, then back when everything is done? And do quads have problems with excessive tooth wear after a long time post-accident?

235

Another question: outside of your carers and any romantic relationships, how do you feel about people touching you? Do you find that people are more or less inclined to make physical contact with you when talking to you than before you were injured? And do you feel more or less protective of your personal space than before?

236

Im just gonna chip in on this one: I’m not disabled- but I use to work as an assistant for a disabled person. I’m not really allowed to talk about any details of what I did, for reasons obvious to anyone reading this thread, but I can definitely say this; if you’re an assistant for someone in that way, making decisions for them is not your job. It’s not your job to go ‘I think you’d better eat something healthy now’, it’s definitely not your job to go contact their friends or family without them asking.

Short of an extreme situation when someone was in serious, imminent danger (say if the person you worked for was very ill and was obviously hallucinating, but was claiming to be fine- you might call a doctor even though they just told you ‘it’s OK, the pixies are sorting it out’), or highly illegal instructions (if I’m going to rob a bank, I’ll do it for myself, not for hourly pay), you do what you’re asked.

You’re effectively paid to be someone’s artificial limbs, not to make any of their decisions. Even if you think they’re bad ones. Your right to do risky stupid stuff does not end when you become disabled.

Hope you don’t mind me answering that one umkay, awesome thread btw!

237

I could NOT have said that any better. So I won’t try. Exactly, exactly, exactly right.

If my carer ever seriously suggested (jokes are another thing) that I not eat that second bowl of ice cream or (for the love of maude) called my mother about it, I would fire her on the spot. Not her f-ing life, not her f-ing decision.

238

Wow, how does that work?

239

The moving bed is something I never would have even known or guessed was a need but it sounds great. Notwithstanding the hiking bear dog with attached weaponry, are there other technological aids you’d really like to see or are eagerly anticipating coming out soon?

Your two recent threads have been very informative to me - thank you for sharing.

240

Yeah, I thought about the dudes, but they can get over it. They’re tough.

As fopr the urethra vs. vagina - I knew that part! My ignorance was actually all on the end involving the mechanics of catheters and where their collection end was connected. :smiley: