Dignan, first of all, I want to commend you on the courage and strength you possess to live your life. And it does take a stronger man to live life than to give up and choose not to live.
Second, is there a chance you might walk again someday?
Most of the other questions I had in mind have been asked, I guess. Do you have a full time health care provider? for getting dressed, inserting your catheter, etc.
Did you have a girlfriend before the accident? If so, how did she react?
Dignan, this is a great thread. Thank you for starting it.
I just recently started dating a girl whose mother is in a wheelchair after a bad car accident. It’s kind of nice to know I can ask you something so I don’t act like a jackass. I hope you take general questions because there are a miriad of topics about which I might sound like a jackass. 
When I was in law school, I studied the ADA religiously. I love that statute. My largest writing project was on the philosophy behind the US laws and European laws regarding discrimination against individuals with a disability. Here is the weird part: I don’t know anyone with a disability. I mean, I surely must because I think Congress said that over 500 million individuals in the U.S. have a disability. But I guess I don’t know anyone with one that is as clearly visible as being in a chair. Where the heck am I going with this…
Um - okay, as much as I might know about the ADA, I feel 100% stupid talking about how helpful it is because I don’t actually experience the benefits of it. I think it’s nuts that people think others in a wheelchair can’t do certain jobs, etc - but do you ever have…well, sort of disdain for people who don’t have a disability but think they understand it? I don’t think I can ever understand it but I’m trying. Okay, I’m not even sure I asked a question.
Done. Thank you for the very nice responses. They are great.
Tibs.
Barbarian, it’s hard to single out just one thing. I really miss everything that I’ve lost pretty equally. I don’t wear shorts because my legs have atrophied, I can’t just run out and go somewhere on a whim, hanging out with my friends isn’t the same, I miss playing sports. Nope I didn’t have sex before the accident, so that sucks. I don’t race, or play any other sports for that matter. Playing sports in a wheelchair just wouldn’t be the same, it wouldn’t be as fast moving or much fun for me. Everyone’s different, and I just don’t want to play sports.
Fiver, I’ve asked if I received any kind of drug after my accident and I haven’t gotten a concrete answer. After my accident I was taken to a hospital in a rural area and then air lifted to a bigger hospital (I don’t remember any of it). The closest I’ve gotten to an answer was “Yeah, I think you might have received methylpredisonlone (sp?).” By “for a while” I mean that I don’t ever get to walk again barring a miracle or some kind of corrective surgery (which would pretty much be a miracle the way I see it). I don’t even bother thinking about anyone finding a way to fix this. I’ve read around and the time table for a cure seems to be about 10 years, which is an optimistic guess. I thought that since my cord was only bruised it was incomplete, but it’s not. Incomplete means some kind of “signals” can get past the bruise. Nothing can get through my bruise, so it’s just a little bruise on my cord that’s keeping 3/4’s of my body from working.
todaystomsawyer, no, I don’t have a health care provider. I do everything myself, I’m completely independent. I have a car that I can drive and I fold up and load my wheelchair into the car myself, no wimpy lifts for me! I don’t want to ever have to get a van. There’s always a chance that I could walk again, but I’m not really counting on it. I just have to play with the hand I was dealt, even if I don’t have anything good. So I’m going to school and counting on eventually getting a good job doing something, want to go to grad school, etc. If I end up getting to walk again (which I think about every day) I wouldn’t be able to ask for anything more. I didn’t have a girlfriend before the accident.
Tiburon, hmmmmm, we really should talk. I’m in a wheelchair and I have no idea for sure about what the ADA has done, and you aren’t in a wheelchair but know about it! The ramps are good, they’re very important since I don’t do stairs. The biggest problem I run into is the bathrooms. Handicap accessible does not mean take a regular stall and put some grab bars on the walls, which is usually what happens. I think bathrooms are the most important things to make accessible, yet from what I’ve seen they’re usually the least accessible. I’ve been to airports where the bathrooms are not accessible, so if I need to use the bathroom I don’t know what the hell I’m supposed to do. The stalls should be made large enough to fit an entire wheelchair in, next to the toilet. I’ve never been to Europe, and I don’t know when I’ll have the chance to go, but I have doubts about it being accessible. I don’t know how accessible the plane would be (bathrooms) and I don’t think there are many 14th century castles and cathedrals with elevators, so I’ll probably have to wait on visiting Europe.
I haven’t had any people that I can think of that acted like they knew what I was going through. I have had people tell me that I can’t be sad or depressed, that’s pretty annoying.
Much like everyone else, Dignan, I want to commend you for your candor in speaking about this. Too often people try to shy away from these situations, or play the pity card. It’s refreshing to see a person my age able to face this with such strength. I’m not sure I could, had it been me. I really don’t have too many questions, as they have been already asked and answered. A friend of mine was working for a local paper a few years ago, and she had to interview a guy who was paralyzed in a single-engine plane crash. His gauges froze up, and he ran out of fuel. He tried to land in a cul-de-sac, but saw a school bus, so he pulled up a little, and crashed into some trees. I’m not sure if his injury is complete or imcomplete (until this thread, I had no idea such classifications existed), so I don’t know what hope there may be for him. Anyway, Carrie and Mike met when she interviewed him a few years ago. They were married last year. A lot of questions I’ve had came from asking the two of them. Keep up the positive attitude, Dignan. And remember that fear normally comes from ignorance. And ignorance is too often merely the result of failing to ask the right questions.
Thanks for starting the thread. Well, here I go with my questions.
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Are you a little annoyed when you see other paralyzed people trying to force Mountain Top Lodges and other such “nearly unreachable by wheelchair” places to have ramps? I guess what I’m saying is this. Do you ever just want other handicapped people to just ACCEPT IT, so to speak?
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Do people treat you like a child? I know most people don’t do it really obviously, but do you sense that people play down to you subconciously?
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Do you have a motorized wheel chair? If so, how do you stay in shape/
Superdude, that’s a good story. If you think of anything you need answered or are hesitant to ask your friend come back to this thread.
Mahaloth,
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I haven’t heard of anything like that, but I don’t see anything wrong with it. There is handicap skiing, so if one of those skiers goes to the top of the mountain they should be able to go into a lodge. People that would press for something like that probably have accepted it. They still want to be able to do things that they like, and I don’t see any reason that they should be treated as second class citizens because they haven’t been as lucky as some one else. It’s not like they want to be fire fighters or something like that. So I don’t see any problem with it.
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Sometimes it seems like people are kind of “talking down” to me, because they’re looking down they just kind of take the mindset that I’m a child. It doesn’t happen too often, and I’m a smart enough guy that it comes across that there isn’t anything wrong with me mentally.
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No, I have a “normal” wheelchair I guess. I have a special cushion to prevent skin breakdown. To stay in shape I lift weights and by wheeling around all day I’m able to stay reasonably fit.
Tiburon:
Did you mean 50 million? I found this page, which breaks down disablilities into smaller catergories and gives some interesting statistics. Also, note that things you might not notice, like being unable to walk long distances and having reduced vision or hearing, are considered disabilities. This graph breaks down the percentage of disabled persons by state; for whatever reason, disabilities seem much more prevalent in the southeast.
You know, yes, it must be 50 million - I was trying to recall what Congress said as its preamble to the ADA and stuck in too many zeros - good catch.
I know that the definition of disability (as definied by the ADA) encompasses many different things. I tried to sort of qualify my remark by saying that I didn’t know anyone with a disability as obvious as that of being in a wheelchair. Diabetes has been considered a disability in certain jurisdictions and I certainly know people with diabetes. I should be more clear.
If anyone is interested, I can post the ADA’s definition of a disability. It’s a 3 prong test.
Tibs.
One of my counsins married a respirator-dependant quad. They had three children. (Would you believe a lot of folks won’t believe the kids weren’t adopted, because everyone “knows” people in wheelchairs are “neuter”? :rolleyes: ) None of them seemed to have any problems with daddy not being able to move on his own and they’re all wonderful people.
No reason you can’t raise kids and be a good dad, although you’ll probably have a few extra challenges along the way - like the attitudes of other people.
As far as “wanting to die” after the accident - after something that traumatic, resulting in permanent disability, I’d be more worried if you didn’t go through periods of extreme despair. You have to grieve for the loss of the body you once had and come to terms with the one you have now.
Dignan,
I’ve read this thread and felt emotions stirring in me that haven’t been explored in awhile.
You see, when I was 21, like you I barrel-rolled my car down an embankment, doing close to 60, flipping the car one and a half times. Also like you, I was wearing my seatbelt. It was the most terrifying five seconds of my life.
But unlike you, I walked away. With just a stiff neck and a scratch on my elbow.
Twelve years later I don’t think about the incident too often. But there are so many reasons to look back and feel blessed that I was so lucky that day, knowing how much worse it could have been.
I have a cousin and an uncle who have Multiple Sclerosis. My mom developed a sore on her leg that wouldn’t heal – several years, hundreds of therapies, and thousands of dollars later, the leg had to be amputated. This year she developed a sore on her other leg.
I guess I’m fortunate to have people in my life who deal with disabilities daily, to help give me perspective on their needs and struggles. I’ve also done work for corporations, helping to develop training materials on ADA compliance in supermarkets and offices. Even so, I still find myself uncomfortable at times around a person with a disability.
They say one in three people will have a disability at some time in their life.
One in three.
We are ALL one step off a curb, one gene mutation, one burst blood vessel, or one brake failure away from a disability. If you haven’t thought about it, you should. When you put yourself in the other person’s place, it becomes easier to see how to treat that person – just as you would want to be treated.
So thank you Dignan, for making us think about it. The toughest part is imagining ourselves in your place, and you’ve made it much easier by sharing your experience.
I do have a question for you, too. I know you’re just the average 20 year old college guy trying to get along in the world, who happens to be in a wheelchair. And it’s in your best interest to fight ignorance of disability issues, at least on a local level.
But by taking this thread to this much larger forum, you’re going beyond yourself and your own interests to serve a much wider group – everyone with disabilities with whom we come into contact. Is this just a first step? You’ve done such a fantastic job answering our questions openly and honestly, have you thought about or do you do any public forums on the issue? I’m thinking of things like talking to kids in schools, being active with a students with disabilities group on campus, or perhaps writing a column in the school paper? Not knowing you personally, but from what I’ve read here, I think you would do a great job. And how therapeutic would that be for you?
Paul
Broomstick, I know that it’s possible to have kids, even if it takes some kind of procedure, but I’m worried about not being able to pull my weight as a parent. I wouldn’t be able to move while holding a baby, and other things like that.
Paul, I hope your mother’s sore doesn’t have the same result as the other one.
As for the groups, giving lectures, etc. I definitely do not see myself doing anything like that in the immediate future. I have too many other things to deal with before I could even begin to think of something like that. The school newspaper is something I have thought about though. Maybe in the future. I’m always willing to answer people’s questions when they address me, but right now I don’t think it would be a wise decision to take on too many responsibilities.
Another thing I just remembered. It was asked if people talk down to me. There have been times when I was not talked to at all. Instead whoever it was (example: a host at a restaurant) would talk to whom ever I was with. Instead of addressing me, they talk to the friend I’m with. Almost like they’re my care taker. They also ask questions that the person I’m with wouldn’t know the answers to. When this happens I usually just answer the questions myself while the person looks at my friend. Most of the time they manage to figure out that just because my legs don’t work, it doesn’t mean my mind and voice don’t.
Well now, you’ve learned to use a wheelchair for mobility, and there are baby slings that you could probably use or adapt to hold a baby while wheeling yourself around. Or you use any of the various pillows/slings/gewgaws they have for supporting a baby on the couch or a table while you use your hands to care for it. And your children won’t be helpless infants forever.
I know of many “fathers” who have no disability whatsoever and yet contribute absolutely nothing toward the care of their children. You have (and are willing to contribute) your hands, your mind, and your heart. Works for me.
You know, I honestly had not thought of that. I would still have plenty of obstacles, but the idea of using some kind of sling or baby carrier would certainly help remove some of them. Even though I’m not planning on starting a family any time too soon, that thought provides some relief.
Oh yeah, I know those guys, they’re the same ones that take my parking spots and then get out do cartwheels into the store. They don’t realize that being a stupid jerk is not technically a recognized disability.
Maybe I’m missing something here, but wouldn’t being in a chair mean you always have a lap for your child?
[QUOTE]
*Originally posted by Dignan *
**
Bwahahaha! 
Dignan, you mentioned that your legs were atrophied earlier. Is it possible to use some type of electric muscle stimulation to get those muscles toned again?
Also, thanks for starting this thread and all the great responses you’ve made.
I’m new to StraightDope & the thread title caught my eye. I’m not in a chair but will be in a few years. I have a hereditary neuromuscular disorder, Charcot-Marie-Tooth disease. I’m told it’s the most common “primary motor neuropathy”. It results in muscle wasting; the nerves can’t carry the “charge” to the muscles that the latter need to work. The muscles also need periodic, involuntary stimulus to maintain their tone so exercise doesn’t work.
At 21 I had foot surgery, bilateral, to flatten my high arches and tighten the tendons in my feet. I was in casts up to the knees for eight weeks. The orthopod said “My, aren’t we interesting.” when he examined me. Said I wouldn’t be able to walk without support in ten years if something wasn’t done. At 39 I started to wear braces. They’re called AFO polyprop- ankle-foot-orthotics- are plastic and go up to just below the knees. It took two trips to the orthotics office before I got them; I couldn’t bring myself to say yes the first time. The doctors said most people need two visits for the same reason. You probably wouldn’t know I was wearing them; the irregularity in my gait is not that pronounced.
I’m supposed to get the straps fixed every year; they wear out. I went a couple weeks ago for the first time in three years. My calf muscles had shrunk an inch in diameter since the last visit.
Occasionally, I fall. If there’s nothing for me to push off such as a chair, I cannot get up by myself. I tripped while crossing the street. A policeman yelled from a block away, “do you need help?”; I said yes. He pulled his car into the intersection & he and his partner picked me up. I started using the lift on the busses a few years back when I broke my thumb. Since it was in a cast I couldn’t get a decent grip on the railing to pull myself up. People were already giving me their seats when I got on, without my asking, so I just decided to keep using it. Getting off without it is more dangerous, my knees can buckle & I’ll fall. I hate that lift.
The neuropathy also effects my hand. I type with the “bird finger” of my right hand; I used to use the index finger but it gave out about 10 years ago. I haven’t been able to snap my fingers for years and I can’t pick change off a tile floor.
Did I tell you about the epilepsy? Started when I was 11 and I’ve been on drugs for that since then. Occasionally I have a seizure while alone and outside. I know the datails of this one because someone I work with was on the same bus. I got off the bus- it wasn’t my stop, got right back on, and rode it 15 more blocks or so. I got off again as did the person I work with. I remember being confused; Adrienne, the woman from work, stayed with me until I regained my orientation, she said it took about 15 minutes. I spoke to her at work the next day, knowing something had happened but not knowing what. On a few occasions I had seizures at the bus stop. Someone called 911 but by the time the medics arrived I was invasriably conscious and didn’t need any help. Once they asked me to show them my wallet, I gave it to the medic and he asked me where I lived. I asked if we had met before, to which he replied, “yes.” I gave him my address and he sent me on my way.
About 10 years ago I was diagnosed with bilateral cataracts. A few years later I had them fixed. One of the potential consequences of cataract surgery is retinal detachment. My left eye flooded with little black specks a few years later; the specks were some sort of film on the inside of the eyeball. The surgery was a “scleral buckle”. My eyeball was “lifted” out a few (centimeters?) and a tiny piece of plastic was put BEHIND it at the spot of the detachment. The pressure forces the plastic and the eye together at the spot of the tear; this holds the retina in place. The right one failed a couple years later and the remedy was the same. These surgeries are performed while you are awake. Two years ago my right eye flooded again; the scleral buckle failed. This time I had a vitrectomy. This is done under a general anesthetic. The surgeon cut my eyeball open, sucked the fluid out, and “soldered” the retina to the back wall of my eye. The Saturday before this I collapsed in my apartment screaming “it isn’t human”; I wailed for a few minutes, lay calm for a few and resumed wailing. I was afraid I was losing my grasp of reality; I have never known such fear. My then grirlfriend, now my wife, called the medics. I was taken to the hospital & given an injection of Atavin. They sent me home with the generic version in pill form, Lorazepam, to take over the weekend.
A month or so later I called the surgeon to tell him something was wrong. I went to his sustitute since he was out of town. After a half an hour of looking into my eye he said I was right; the surgeon didn’t solder far enough across my eye. The retina was tearing elsewhere so I had another vitrecromy. A few months later I had a seizure at home and fell on the floor; at least I think that’s what happened. The impact caused the lens to dislodge and fall to the bottom of my eye. The eye needed to heal from the surgeries so I spent a month or so with no correction. I had another surgery, while awake, while the doctor fished the lens out and sewed it back in place.
In a month or so I’m having a hernia repaired; I’ve had it for years. I had one on the right side and had it repaired years ago. This one’s starting to twinge on a regular basis and I can put a finger in it. The hernias are due to the strain lifting things placed on the weak muscles.
I work at a social work agency and the day before the second surgery spoke to someone to calm my nerves. We talked and Sylvia asked me something I had never considered. “Do you realize how much strength you have?” That question was a life-changing event. Getting married last year was another one. The woman lying on the couch next to me is a gift from God.
SuperNelson, yes, it does mean that. Sometimes it’s hard to be optimistic and instead of seeing it as always having a lap, I see it as not being able to run around or put a kid up on my shoulders.
Demo, yes, using electric stimulation would help me to have muscle tone in my legs, but it’s very expensive. It’s not availible every where either. I still have spasms in my legs, and it helps me keep a little bit of muscle tone.
Thank you, Dignan, for the thread.
I must add my voice to the chorus which has already told you that your concern over your ability to parent shows that you have the ability to parent. Too many fully able-bodied people could take a lesson from you.
And, as you say, you have the use of your arms, you are living independently, and have a vehicle. You have a permanent lap. You have the physical resources to hold a child, read to him, and take him to little league.
You are attending college, and will be a wage-earning adult, so you will have the financial resources to be a parent.
My Aunt was paralyzed from the neck down after a bout with polio in the early 1950s. At the time, she had a young daughter, and had just lost a newborn son. Her husband decided that it was all too much and left. My Aunt, with the help of a machine to aid her breathing, a bed in the living room, and a live-in caregiver, raised her daughter. (And if you think anybody but my Aunt ran the show, you are mistaken. :)) I can still see my Aunt teaching my cousin how to sew. I never heard her complain. She always knew what was going on in the entire neighborhood, and was a great source of advice.
It strikes me that you have the attitude needed to be a parent as well. But, if you’re looking to convince yourself otherwise, babysit my boys for a day - that’ll cure anybody.
::Yay for Sparteye’s aunt!::