Ask the Girl in the Wheelchair

In My Humble Opinion
101

My sister-in-law is a quadrapelegic not because of spinal cord injury but because of chronic progressive MS. She relies heavily on her voice-operated computer. I wonder if she’s looked into a chin-operated mouse…

I don’t have any questions for you, I guess I just wanted to offer some support and thank you for this thread. It’s so aggravating (when I with her) to meet people who only see the wheelchair and assume that there is something wrong mentally with her. People ask me questions about how she’s doing while she’s sitting right there. Usually I stage-whisper “She’s still got multiple sclerosis!”

102

Thanks. You’re a sweetie to say so. And I think I will. :smiley:

While I’ve definitely drunk a whole bottle of wine before, I don’t think I’ll ever manage to open the bottle on my own. :wink: Ditto cook a meal or bake a cake. Nevertheless, I can open a beer bottle with my teeth, I can do a pretty decent caricature sketch of just about anyone with a pencil held in my mouth, I’ve been skydiving, and I’m definitely doing SCUBA this summer.

103

This is the one I have. It’s great. Plus, it’s got tons of options and add-ons for folks, like your SIL, whose ailments are progressive.

Ah yes, the assumption that the person in the wheelchair is also a deaf-mute, or completely out of it mentally. I know it well. I’m loving your response, though. Good on ya. :wink:

104

If you ever get bored (and have a wad of cash burning a hole in your pocket), I heard Stephen Hawking enjoyed his zero-g ride. My brother and I talked about it several years ago, and although it’s damned expensive, it would be a seriously unique experience.

105

Well, since I can’t feel when I need to use the facility and I’m not into diapers, I’m a lucky girl that the bowels are a highly trainable beast. But you probably know this–don’t you have a fave time of day to retreat to the bathroom with a newspaper? :wink:

Over the course of many years, I’ve trained my body to do its business every other morning, which is called my “bowel program.” (BTW, I didn’t invent this or anything–nearly every spinally injured person I know does a BP, because an SCI almost always causes some loss of bowel control).

When I wake up in the mornings on BP days, before my attendant gets me out of bed, she’ll place a suppository that helps get things going. Then she gets me up and into my shower chair (it’s not shown in the photo, but it has a removable collection pan underneath for this part) and gives me some privacy (some things are still sacred). My bowel is a well-behaved little pet, so it’s usually only a matter of 20 minutes or so before I go. [Wait–you’re thinking this is a long time? Most quads I know do their BPs in bed–specialty chairs like mine are f-ing expensive–and it can take a couple of hours. So I’m lucky to have the whole process take less than a 1/2 hour]. Then my carer tidies me up and rolls me straight to the shower from there.

So that’s how I manage the tricky prospect of doing my bathroom business without any movement or sensation down there. It works very well, but it’s not foolproof, so if I don’t watch what I’m eating and drinking or if my attendant doesn’t know what she’s doing, accidents can and do happen. And they are the epitome of un-fun. So I don’t F around with my BP.

106

Fascinating thread! Thanks for sharing.

SCUBA this summer?

Do you breathe unassisted? I guess I was under the impression that you needed a respirator of some sort if your injury was that high.

Are there any special considerations you’d need to do for SCUBA diving?
What about skydiving? I assume you did a tandem jump?
I just think it’s awesome that you’re getting out and living life.

107

I was wondering, too. :wink:

And, yes, chiming in to agree that umkay is awesomepants with awesomesauce on top. Thanks for joining this board, and thanks doubly for starting this thread.

108

doublepost.

109

When my head contacted the ground, there was an audible crunch that my cousin and brothers and I all heard. This was most likely the fracturing of my C2 through C5 vertebrae (which I could have theoretically survived without becoming paralyzed if my cord hadn’t become involved).

The cord snap I experienced as a lightning bolt. For a split second, every nerve in my body was lit up and sizzling, then my body went totally dark, sensory-wise, which is how it has remained.

I didn’t know right away that I was paralyzed–I really had no idea what was happening. For a split second I irrationally thought I had somehow hit an electrical line or something, because of the power of that shock. But my next thought was “Oh crap, I can’t breathe. Why can’t I breathe?” My cousin and brothers ran over to me, and were asking me if I was okay. But I couldn’t get any words out. I was really scared and totally disoriented and I couldn’t breathe. So I passed out. :smiley:

That’s when they all really lost their sh*t. Luckily, one of my older brothers had been a lifeguard in high school so he knew they shouldn’t move me (I’m grateful for this–even though enough damage was already done that I would be permanently paralyzed, them dragging me back to the lodge could have caused my injury to ascend even higher or just killed me outright). My cousin took off on his board for help, which on the mountain was faster than calling 911. Plus, cell technology was in a different era back then and I’m not sure any of us had service on our clunky black phones. :wink: The patrol came out and got me and I was airlifted to the hospital. Of course I was blacked out for all of this. I woke up in the helicopter, once they got some oxygen in me, but I couldn’t move and I couldn’t talk. It was terrifying.

When I got to the hospital, I was intubated, which was horrible. That’s a tube down the throat people. And it hurts. Then there was a lot of scrambling around and medical terms being thrown around, none of which were clear to me. They cut my clothes off me, which I remember being really indignant about. It wasn’t so much being naked around all these random people, but the fact that I really loved that Helly Hansen shirt. They also drilled holes into the sides of my head and put me in a halo to stabilize my neck. My parents got to the hospital sometime later (time blurs together here), and I was really comforted that they were there.

I was placed in the ICU and when the x-rays and tests started coming back, I could tell it was bad news, but the docs would always call my parents into the hall to give it to them. They didn’t let on about what was happening, because they were just scared that I was too medically fragile to handle it. In the ICU, the decision was also made to give me a trach, since long-term mechanical ventilation was indicated by what they thought my injury level was. I didn’t know that this was why they were doing it–I was just grateful not to have a tube down my throat anymore.

When I transferred out of ICU 12 days later, my parents sat down by my bed and cried and spelled it out for me. I still couldn’t speak or move even my neck, so I had to ask them what they meant by mouthing questions. They told me I wouldn’t be able to walk anymore, or use my arms. At the time, my doctors believed my cord had been severed at roughly my C2 vertebra, and that I would be dependent on a ventilator to breathe for me for the rest of my life (I actually was vent-dependent for only about 8 months after my accident, when my injury stabilized and descended to C4 and I successfully weaned off it). So they told me that, too.

Honestly, it was too surreal to take in all at once. I didn’t even cry. I just felt mentally numb. It wasn’t until I transferred to rehab 2 months later that I started to grasp just how this was going to affect my life. As I mentioned before, I got moody for about 6 months, which is not characteristic of me or the way I handle hard things, so that could have just been teenage hormones. Then I was really uncomfortable in public or around people I didn’t know well for about 2 years. And then I got over myself and I’ve been pretty happy ever since. :slight_smile:

110

I had an evil thought where I imagined they just strapped a 'chute with an ADD to umkay then unceremoniously rolled her out the door of the airplane solo.

(Of course, I’m sure it was a tandem jump)

I also imagined her yelling “WWHHHHEEEEEEEEeeeeeeee!” and laughing all the way down until the 'chute opened. Does that make up for any of it?

111

The job of a rehab psychologist (at least as I did it) is part diagnosis, part adjustment to injury, and part education. Lots of my clients had underlying depression or anxiety that predated their illness. I was working with a special population, though. Since the hospital was in downtown Detroit, the majority of my clients had substance abuse problems, too.

Adjustment to injury meant finding out how they were coping with their injury and life changes, helping them begin to figure out what this meant for them.

Education was mostly sex education, although I also reinforced teaching about skin, bowel and bladder programs, etc.

112

Do you think your injury has affected your ability to meet new people or make new friends?

113

I see what you did there. :smiley:

I’d like to add my thanks for this thread. Very interesting! (I knew what a bowel program is because I read Christopher Reeve’s book, although his BP involved attendants kneading on his abdomen until he evacuated onto a plastic sheet while lying on his side. Your way sounds much better.)

114

Hahaha! Thanks. :smiley:

115

Thanks! Actually, I’ve been fiddling around on a book for about three years. But it’s not an autobiography; it’s a novel. The main character is a quadriplegic, but beyond that it’s all make-believe. And the fact that she’s a quad is just one small aspect of the story, not the major plot point. I don’t think there are enough positive representations out there of normal, well-adjusted people who also happen to be in a chair, so someday I hope I get around to finishing it. We’ll see…

116

You know, that’s just a bit more than I really wanted to know about the late Mr. Reeve’s lifestyle…

117

I’m glad! :slight_smile:

Nailed it. I’m 26, though I’ll turn 27 later this year. The accident happened December 22, 1999, and my birthday is November 1, 1985. So I will have officially been in the chair for half my life on February 12, 2014 (I’m a freak and I calculated that date a long time ago). It’s interesting to me that, assuming a normal life span, so much more of my life will have been spent paralyzed than AB. Yet I had no idea for the first 14 years of my life that being ambulatory would be a relatively short phase for me…This is not me getting gloomy, BTW. I honestly just think it’s interesting.

118

Oh, I hope you do get around to finishing your novel. I’d love to read it. Mystery? Romance? Drama? Historical/period piece?

119

I do breathe unassisted. But I was vent-dependent for the first 8 months after my injury, so I have a keen sense of appreciation for being able to draw my own breaths. However, most AB people never realize how much their chest muscles are involved in breathing. Mine are paralyzed, so I breathe solely with my diaphragm. This gets the job done, but I’m probably only able to use about 40-50% of my lung capacity. So no singing or belly laughs for me–my voice is so much softer than it was before I landed in the chair, and my laugh is quite a bit lower and (honestly) more subdued than I’d like. I also can’t sneeze, cough, or blow my nose, for the same reason, which makes respiratory infections a real risk. Every morning my carers need to help me “cough” to clear out my lungs to prevent this.

I first got interested in SCUBA after reading this post on a disability forum several years ago. Last year, I casually mentioned my desire to SCUBA one day to one of my brothers and his wife, and they got really excited to try it out. So they got certified last year and are going to do some special training next month so they’ll be able to help me dive with them this summer. Special considerations? Obviously, I’ll need help getting into the wetsuit, which I’ve heard is a b*tch even for AB people; I’ll have extra weight on my feet to keep me vertical on the descent; and we’ll have to make sure we all know how to communicate with one another underwater, where I can’t use my voice or hand signals.

Nope, they just put the chute in my mouth and tossed me out. :eek:

Yes, it was a tandem jump. :wink: My arms were taped down to my sides and, just before we jumped, my legs were bound to my instructor’s. It was super fun. I’m looking forward to going again.

120

Awesome. :slight_smile: