Ask the Paralyzed Guy

[Dignan]

In the spirit of Corporate America, I'm going to try to cash in on the recent popularity/flood of these types of threads and force feed the members of the SDMB another one of these "Ask the . . ." threads.

Any questions you have I'm willing to answer to the best of my ability. Don't worry about offending me, just go ahead and ask anything you want to know or are curious about. No questions are stupid. Hopefully this will be informative and maybe I can even fight some ignorance along the way.

Fire away.

[Scarlett67]

Some background might help us ask more intelligent questions: What is the nature/history of your paralysis? If you were ever not disabled, how difficult was the transition? I have a few other questions, but I'll hold them for your reply.

[CrankyAsAnOldMan]

I'll bite. This is probably a question I wouldn't have to ask if I had a better understanding of anatomy: why is it that some things continue to function even when muscles in that same area don't? Do these things work automatically, without needing signals from the brain? Or do those nerves travel a different route than the nerves controlling gross motor movements?

That is, say you're paralyzed from the chest down. Your stomach still works--it still digests. Your intestines still work (although if memory serves, perhaps not enough to have normal bowel evacuation--no need to address this if it's TMI). So what's the deal? How come these things go on working even though your brain's communication is cut off with the rest of your body parts down below?

[Dignan]

Yeah, I guess background could help. I guess I could still be considered to be fairly new to the "club." Almost two years. Was in a car accident senior year in high school (no drinking or drugs were involved). I flipped my car down a hill.

Regular wheelchair I guess you could call it. I have to use my arms for pretty much everything, so it's a good thing that I can use them the same as I could before I was hurt.

That is, say you're paralyzed from the chest down. Your stomach still works--it still digests. Your intestines still work (although if memory serves, perhaps not enough to have normal bowel evacuation--no need to address this if it's TMI). So what's the deal? How come these things go on working even though your brain's communication is cut off with the rest of your body parts down below?

Yeah, to get an idea of where I'm paralyzed the doctors told me it's pretty much from the "nipple-line" down. My stomach still works, I'm not sure if I can always tell when I'm hungry, this can be good and bad. It's kind of weird too. When I first got hurt I didn't feel hungry and wouldn't eat. My stomach doesn't have any muscle tone since I have no control over my stomach muscles, so I wanted to make sure I wouldn't get too fat. I didn't think I was hungry, and thought it was just because I wasn't using as much energy as I used to, so I didn't eat very much. This was a bad idea because your body needs nutrients and I ended up getting a pressure sore from not having enough nutrients.

My intestines still work I guess, but you're right (*TMI warning*) not everyone (although some) can go "naturally." I think it has to do with the autonomic nervous system. If there's a doctor in the crowd that has a better understanding or could explain better, feel free.

[GilaB]

Is it just that you've lost contact with your motor neurons (i.e. you can't move your muscles), or is it sensory too? Can you get itchy in paralyzed places? Do you get the equivalent of phantom limb pain (in amputees, sometimes the limb that isn't there hurts)?

[Scarlett67]

OK, that does help. You may be in a pretty good position to answer a question that I've wondered about for a while. I've always wanted to pose it to someone who's "been there." And I'd like to preface my question by saying that I mean absolutely no disrespect or judgment of anyone who sees things differently, especially those who have been through it.

In my observation, it seems that a lot of able-bodied people see "simple" physical disability (by "simple" I mean little or no persistent pain, retaining your mental abilities, and still being able to move around on your own with a wheelchair, cane, or dog) -- paralysis, blindness, deafness, amputation -- to be "the end of the world." People kill themselves over it. They get divorces over it. Overwrought victims, parents, and spouses go on endless medical quests to put things back the way they were -- "If only I/he/she could walk/see/hear again." It goes way beyond the point where the denial stage of grief should have ended.

Now I fully understand that a physical disability (let's stick with paralysis here for simplicity) is no picnic, and rehab is a long, hard road. You have to remodel your house, or find a new one, or even live in a facility. You have to find new ways to perform basic bodily functions. You have to deal with people staring at you and making rude comments or asking dumb questions. And on and on.

But I've always felt that for myself, I'd have a hard time working up a "poor me" attitude if I suddenly couldn't walk. There would be an adjustment period, but life would go on -- only with some changes. I would be essentially the same person, with perhaps a bit of "character" added. I sit at a desk to work, so I could still earn a living. I would still have the capacity to enjoy being alive. Lots of people who use wheelchairs hold jobs, raise children, and seem to lead happy lives.

Do you think that this is an unreasonable outlook? After two years, it sounds like you have adjusted to your new situation. I've read several autobiographies of people who've been paralyzed (Christopher Reeve and John Hockenberry are two that come to mind), and I'd like to think that I'd get back on track as well as they have.

I guess I've said all this to mitigate what I know sounds like a totally insensitive question, although I don't mean it to be: Is it really all that bad to be paralyzed?

(What about the other disabilities I mentioned? Blindness would make it hard to edit books, but (1) I'm already severely nearsighted, so I guess I'd just throw out my glasses, and (2) I'd work up my musical abilities, or find a way to teach. Deafness would be tough, because I'd lose music, which I love dearly, but I think sign language is a lovely medium of expression. And I could still drive. Amputation? I hope it's the left leg I lose, because it would suck to lose my right leg and still have to deal with the ingrown toenail on the left. ;) I think I could deal with losing one arm, although giving up the piano would be tough (but I would still be able to sing), and losing both hands or arms would be pretty bad.)

[Dignan]

Can you get itchy in paralyzed places? Do you get the equivalent of phantom limb pain (in amputees, sometimes the limb that isn't there hurts)?

Yeah, it's everything. I can't feel or move. Yes, I did have phantom pains, and I still get them occasionally. I really had them bad right after the accident. It was pretty irritating to have these incredible pains in my legs and have everyone telling me they're just phantom pains. After doing some studying I understand it better. Phantom pains is a really bad name for them though. It might not have been my legs actually hurting, just my mind telling me they were. "Phantom" seems like it's being implied that I'm just imagining them, but the pain was very real, even if it was all just in my head it still hurt.

But I've always felt that for myself, I'd have a hard time working up a "poor me" attitude if I suddenly couldn't walk.

Everyone is different, so this is a hard one to answer. I think it really depends on what your interests are, what's going on in your life when you're hurt, etc. I do think about killing myself. I liked to play a lot of sports and be real active, and go party with friends before. Now I can't live the same way. I have a lot of back pain partly because I don't have any use of my lower back or stomach muscles, so it's hard to sit up straight. It is a huge adjustment. I mean, for the most part, I'm in a good mood most of the time, but little things can just really make you sad.

Like I said, I think the situation you're in when it happens is a huge factor. I think the more stability you have the better suited you are to adjust. I have a great family, but at the same time I'm learning a lot of new things (living alone, college, etc.).

I don't think it's unreasonable to have the outlook you do, but it's really hard to know until you get into that position. I don't know about the other disabilities, no disability is really "good." I know I wouldn't want to have to pick a disability.

If there's something else that you want answered that I missed, just let me know.

[Scarlett67]

Thanks -- I appreciate your answer. You didn't miss anything, but I'd like to respond to a few of your comments.

I do think about killing myself.

I hope you have a counselor or some other helper to help you through these feelings. And I won't get up on the soapbox here except to say please be good to yourself.

I liked to play a lot of sports and be real active, and go party with friends before.

Yes, here's where you and I differ. I'm not all that physically active, and I'm as happy at a quiet gathering as at a noisy party. And being a single ~20-year-old guy vs. a 33-year-old married woman probably also makes a difference. ;)

Now I can't live the same way.

Again, this may be a difference in life perspective. I can look back and see several life changes. I sure don't live the same way I did when I was 20 either. And I do see life as a continuum with occasional irreversible breaks along the way -- deaths of loved ones, loss of a job (just went through that one when Mr. S got downsized -- we're still working that one out) -- and so on. When you pass one of those, you can't go back. But who knows what's on the other side? If I hadn't gotten fired from a job 14 years ago, I probably never would have met my soulmate Mr. S. I guess I've had a lot of examples in my life where bad turned into good. Or at least that's how I see it.

Like I said, I think the situation you're in when it happens is a huge factor. I think the more stability you have the better suited you are to adjust. I have a great family, but at the same time I'm learning a lot of new things (living alone, college, etc.).

I agree about having a good base to start from. And dealing with living alone and adjusting to college is tough even without your extra baggage.

it's really hard to know until you get into that position.

Very true about any situation. If I get hit by a bus tomorrow, I may well find out that I was totally wrong.

-----
Here's a lighter question: Have you ever seen the movie The Waterdance, with Eric Stoltz as a paraplegic recovering in a rehab facility? If so, did it seem accurate to you? I understand that the writer/director/producer/ (I forget which) based it on his own experiences.

[DoperChic]

Here's a few that I'm surprised haven't been asked yet...

1) Does "little Dignan" still work? As in, do you get a physical response when aroused?

2) This doesn't apply to you so much but, How do paralyzed women have sex? It would seem almost impossible for men for obvious reasons, but I know of at least one woman who was paralyzed from the neck on down with very limited use of her arms, who had a child completely naturally. Isn't that kinda sick to think of her husband just sorta doin' her without her getting any pleasure out of it?

If you find either of these questions offensive, I appologize in advance.

[elbows]

If I saw you coming out of the drugstore in town, and smiled, and gave you a hearty, 'Hey Buddy, how's it rollin'?' Would you think me a boor?

[Fretful Porpentine]

Isn't that kinda sick to think of her husband just sorta doin' her without her getting any pleasure out of it?
Not being paralyzed, I suppose I'm not really qualified to speak on this point, but it doesn't seem particularly sick to me. I don't get any physical pleasure out of performing oral sex, for instance, but I do get a big kick out of knowing I'm giving pleasure. This seems like the same sort of thing.

[Dignan]

I think I should clear things up a little bit more. There are different kinds of injuries that can happen to the spinal cord. It can be severed, but in most cases it's usually bruised. This is what happened to me, I bruised my spinal cord. The cord above and below the bruise still works, it's just that little bruise that keeps me from being able to walk.

When the cord is bruised it is possible to recover fully and function completely, or not have any recovery. It is also possible for some people to be able to feel, but not move, or move and not feel. People with either of the things I just mentioned are said to have an "incomplete injury," meaning that signals can still get through the spinal cord. If there is no functioning below the bruise then it is said to be a "complete injury." Complete injuries usually mean that you aren't going to gain anything and you're more or less stuck (me).

Scarlet, sorry I haven't seen the movie. I didn't mean to worry you either, I was just trying to show that no matter how stable you feel you can still get really down.

Star light said: 1) Does "little Dignan" still work? As in, do you get a physical response when aroused?

It still works as in I can get an erection if physically aroused, but I can't just get one by thinking about something like I could before. As I said above, the little bruise is the only thing preventing me from functioning completely. For instance, if I drop something on my foot, my leg will jump and kind of act "hurt."

How do paralyzed women have sex? It would seem almost impossible for men for obvious reasons,

I imagine women just lay on their back. It's not impossible for men, as I stated above. I just wouldn't be able to get the feeling and I don't know how the orgasms work.

I know of at least one woman who was paralyzed from the neck on down with very limited use of her arms, who had a child completely naturally. Isn't that kinda sick to think of her husband just sorta doin' her without her getting any pleasure out of it?

As long as she wasn't raped I don't think it's sick. I imagine having sex to get someone pregnant is much cheaper than artifical insemination or something like that. If the two people care about each other I think it would still be pleasurable. Also as I said above, it's entirely possible that she might have some sensation in the lower parts of her body.

If I saw you coming out of the drugstore in town, and smiled, and gave you a hearty, 'Hey Buddy, how's it rollin'?' Would you think me a boor?

I don't think I'd be bothered by it, personally. Others might though. I'd be careful, unless you know the guy and know he wouldn't mind. Just a normal "how are you doing?" would be better. If I was in a certain mood it could bother me. It's not fun to be reminded that you're in a wheelchair. By now I probably wouldn't give it a second thought, but I might think you were just trying to be funny and make light of my situation instead of being friendly. I'm not saying it's not OK to joke, but if you don't know someone, it's probably best not to say something like that.

[GilaB]

I'm assuming that people are rude enough to ask you really personal questions when they see you on the street. How do you respond to people asking how you were injured, what your level of functioning is, etc.? Do you respond differently to kids when they ask?

[Sterra]

The question about why only some things don't work I think I might know. I have heard that stomach muscles have alot of nerve cells, enough to be called a second brain:)The little one

[Dignan]

I'm assuming that people are rude enough to ask you really personal questions when they see you on the street. How do you respond to people asking how you were injured, what your level of functioning is, etc.? Do you respond differently to kids when they ask?

I really haven't had anything like that happen. If I'm having a conversation with someone they might ask, but they're very polite about it. Usually they say something like, "if you don't mind me asking, what happened?" An old friend that I hadn't seen in a couple of years and I were talking, they asked "so what's been going on with you?" I haven't encountered any rudeness yet. I haven't had any kids say anything to me either. If people want to know anything I tell them so that maybe they can get a better understanding.

I have heard that stomach muscles have alot of nerve cells

I think it could just be that if there's food in the stomach then the stomach will absorb whatever is there.

[handy]

It would depend what area of the the spinal cord was affected. They determine this with a simple system, I think they use C1, C2, etc. The lower the number the better you'll be, I guess.

Do you think ADA laws are a hinderance or a plus, Dignan?

[elbows]

Hey Dignan, thanks for your cander starting this thread was a great idea.

My mother-in-law was paralysed by a stroke last spring. It's been quite a journey for us. It has also been an education for us, her caregivers. Just learning about how to care for her could have been a 3 yr degree! It's been a lengthy and trying process, for sure, but we've all made it through. We're still dealing with it and still learning, I hope.

I was, in the past, and will be again, in the near future, her primary care giver. She is entirely bedridden and incontinent. She is 80+ yrs old and the stroke has cost her the independence she cherished. But she's a fiesty old bird and her spirit, while it ocassionally lags, shines strong still.

Maybe it's generational, or maybe it's just a personality trait, but she (and her offspring too, truth be told) have a really hard time asking for what she needs or wants. I can appreciate her difficulty and why it's hard, I'm sure I would have the same difficulties, but her caregivers can't read her mind.

I'm always trying to think of ways to improve her way of life, little things, like a clockradio with large enough numbers for her to read, drawing a big calendar as she has a hard time keeping track of the days (who wouldn't?). Some of these things have been a success and and some, I think in hindsight, have been to satisfy me it seems and have no bearing on her. It is frustrating, and I'm sure there are things I could do that I'm just not thinking of. Hard as I try somedays nothing works.

I'm sure you had dark days in your recovery and I'm sure you had difficulty asking for assistance with things.

Would you mind telling me, during your recovery, what helped you? Were there any little things that were a big difference in your life? Anything that helped you get passed the 'having to ask' retisence?

We're all still learning our way along and any pearls of wisdom would be greatly appreciated.

[UncleBill]

Regarding the paralyzed woman and sex issue, I have a neighbor who had her spinal cord severed with a bullet (she was attacked by a raging ex-girlfriend of her boyfriend, the ex-g/f was killed in the return gunfire). She has made it clear she'd like me to jump her bones (I politley declined), but the thought had DEFINITELY crossed my mind about sensation and orgasm. If she didn't want to bag me, I would feel comfortable asking her about it. But she does have relations with guys, and apparently enjoys it.

Dignan, when people offer to help you (carry stuff, push your chair, things you CAN do) how do you feel about it?

[Dignan]

handy, I'm not real familiar with everything that the ADA is supposed to do, but I don't see how it could be a hinderance. As best I can tell, it's been a huge help, people have to make things accessible. Even though a lot of the time things are still inaccessible (example: clothing racks at stores) I think that it's made it so that people are aware that they need to acomodate me.

elbows, your situation is much different from mine, but I'll try to help. If she's entirely bedridden then I don't know how much she can do on her own. I can do a lot of things on my own and at first family members would constantly ask if I needed help or try to do things for me. I would tell them that if I needed help I'd ask them. At first when I was trying to do things on my own and having a difficult time I'd get frustrated and then get mad at who ever was with me for not helping me. I knew they couldn't read my mind, but I was frustrated and would project that on to them, I guess. No matter how frustrated you get, try to remember how hard it is for your mother-in-law. Try your hardest to have patience with her if she gets upset. The best thing for me getting through rehab was having company. Relatives and friends being around were a big help. I'd get mad at them sometimes, but having them around was very important. A lot of little things that just let you know that people haven't forgotten about you are good, like getting letters and cards while I was in the hospital. Your mother-in-law is probably past that stage, so maybe in her case you could just let her know how her grandkids (if she has any, and likes them) are doing, or what the price of gas is or something, I don't know, just keeping a conversation going is nice. Since she had a stroke I don't know how well she can speak or anything like that. Sorry that I can't help more.

UncleBill, I appreciate people offering to help even if I'm not in any need, I just say, "no thanks" and smile. The tough thing is that when I do need help it never seems to be around! I can do pretty much everything on my own, but when the weather is bad getting around is a pain in the ass. When it's raining or snowing a push would be very helpful (can't hold an umbrella if I'm using my hands to push!).

Note: to the lurkers, what is the deal? Ask questions people! I'll answer anything, this is your chance! I can't believe that the ask the Neo-Pagan Guy thread has more posts! There isn't anything debateable about this but maybe I should've put it over in GD. Sheesh.

[CalMeacham]

I dated a woman in a chair for a while, so I've come across some of these issues, but I'm still woefully ignorant. So I'd like to thank you for the opportunity to ask some questions.

1.) When I encounter someone in a chair I have conflicting emotions -- you don't want to mention anything about it, lest you seem boorish. On the other hand, it's so obvious that not mentioning it seems equally boorish. So you try to ignore the person altogether, which seems even more boorish. I think you can help us all out by saying just what would be the best -- how should people react to a person in a chair? What is reasonable conversation etiquette?

2.) Iwas surprised that the woman I knew REALLY hated light snowfall -- until we went somewhere in one. I didn't realize that even a very light snowfall registers on the hand-hold part of the wheelchair wheels, so even a light snowfall meant gloves and general wetness. What are the other unexpected inconveniences that you run into, and that you wish people knew about.

3.) I think one of the great devices she had was a long-handled "grabber" that she used to get small objects from the floor or from shelves. Again, it never would have occurred to me, but the need must be obvious to anyone in a chair. What device would you like to have (or see invented) to make life easier?

[UncleBill]

Cal, don't mean to pry, but I will. If you were intimate with this lady, and if she had a "complete" injury (i.e. loss of feeling and muscular control) can you address the query concerning sexual relations and her sensation?

[CalMeacham]

UncleBill:

No offense, but I choose not to reply to this one.

[Scarlett67]

[QUOTE]Originally posted by Dignan
The tough thing is that when I do need help it never seems to be around! I can do pretty much everything on my own, but when the weather is bad getting around is a pain in the ass. When it's raining or snowing a push would be very helpful (can't hold an umbrella if I'm using my hands to push!).

Well, Dignan, I thought of you today when Mr. S had to give one of your rolling brothers a push to help him get over the slight lip in the driveway to the post office. (The curb cut was quite a way off; luckily it was not a busy street!) As we were walking up behind him, we saw him having trouble getting his rear wheels over the lip, and when we came up next to him, he was on his third try. Mr. S asked, "Need a little push?" and the guy gratefully accepted. We walked in the front while he went over to the side door with the ramp -- and we ended up holding the door for him (into the POST OFFICE, mind you) -- because there was no automatic door. :mad: Your tax dollars at work, ladies and gents.

[MrVisible]

Okay... I have to admit to some prejudice against the disabled. It's not a hatred thing, by any means. It's more fear, based on a lack of understanding. I'm uncomfortable talking with someone in a wheelchair; I never know if anything I say will come out as offensive, or will reveal me to be the ignorant jackass I am. So, thanks for the opportunity to ask some of the embarrassing questions that lurk in the back of my mind when I'm talking with someone in your situation.

First of all, when you're talking with someone, does it bother you more if they mention your disability, or ignore it? How long do you generally know people before you are comfortable talking about it? What's a good way to approch the subject?

When you're having a conversation, do you mind looking up at people, or would you rather they take a seat to be on your level?

And I understand if this is a TMI question, but do you have bladder and sphincter control? I assume not, but then I've already admitted to being ignorant.

You mentioned above that you didn't know how your orgasms work currently. Forgive my bluntness, but I just have to ask about that one. You haven't tried anything at all sexually, even masturbation, for two years?

Feel free to ignore me if you wish; everybody does.

[Dignan]

I think I should put a bit of a disclaimer in here. Obviously everyone and their situation is different. I'm just giving one perspective and the advice I'm giving might not apply in every situation. I think the main advice I should give is to use your best judgment.

Cal,

1. I'm not sure what you mean by "encounter" that's pretty broad. If you mean if you're in the mall and there is another person in a wheelchair coming towards you just do what you would do with any other person. I don't know what else to say other than that. About conversation, again, just talk to them like you would someone else. If they're talking about being in a wheelchair or why they're in one or how (in)accessible places are then just go ahead and talk to them about it. If they seem like they'd be willing to talk about it just ask them if they wouldn't mind telling you what their situation is. I wouldn't recommend using it as an ice-breaker though.

2. Like Scarlet pointed out, curbs can be a problem. I can do wheelies in my wheelchair to get up and down most curbs, but every once in a while in a "historic" part of town the curbs will be really high.

3. I've seen the reachers. I don't use one because I'm young, really flexible, and have pretty long arms. The auto door openers are a nice luxury (maybe a result of the ADA?). I can open doors on my own, because my arms are pretty strong since they're all I ever use, but when I'm tired the openers are nice.

by Scarlet:
Mr. S asked, "Need a little push?" and the guy gratefully accepted. We walked in the front while he went over to the side door with the ramp -- and we ended up holding the door for him

You don't need my help! Seems like you have good judgment, a helping hand is always appreciated. Even if you don't need one an offer counts for a lot too.

mrvisible:
I'm uncomfortable talking with someone in a wheelchair; I never know if anything I say will come out as offensive, or will reveal me to be the ignorant jackass I am.

Just try to talk to them like you would anyone else. Treat them like you'd want to be, etc. You never think you could be in that position, but I'm proof that it's possible. After you've talked to them for a while go ahead and ask them things, don't be too personal at first though. The main thing not to do is make an attempt at a "wheelchair" joke. If the person has been in one for more than a week they've heard them all, and no matter how original and witty you think you might be, you aren't the first.

when you're talking with someone, does it bother you more if they mention your disability, or ignore it? How long do you generally know people before you are comfortable talking about it? What's a good way to approch the subject?

I don't mind talking about it at all. There really isn't a time table. Sometimes, for me, it's even funny to see people kind of tip-toeing around the issue. Like I said above, the best way to approach it is to just kind of follow their lead. If they talk about things relating to it, go ahead and ask. If you've known them for a couple of weeks and they haven't brought it up go ahead and ask them. Tell them the usual, "if you don't mind my asking . . ."

When you're having a conversation, do you mind looking up at people, or would you rather they take a seat to be on your level?

I don't really mind either way. I think I kind of actually feel weird when people crouch down. At the same time, it can be depressing when I'm sitting around with a group of friends and all of them are standing, but that's not anyone's fault, just me missing the good ol' days. Another thing not to do: put your hands on your knees, like you're talking to a little kid or something.

do you have bladder and sphincter control? I assume not,

You would assume correctly. To go to the bathroom I have to use a catheter. Not the kind that stays in all the time, those are unhealthy because they can cause bladder sphincter errosion and cause bladder infections easily. So every time I have to go to the bathroom (which I can't really tell, I usually just go every six hours at least, except night) I have to lube up a catheter and stick it in there. Imagine that! Being a high school kid and the nurse comes in and, on top of knowing you're not going to be walking for a while, says "you have to stick this tube in there every time you need to go to the bathroom." Not fun. I spent all my previous years making sure nothing with even the least potential for harm was kept away, and then I find out every time I want to go to the bathroom I have to jam a tube down there. Talk about desensitizing yourself and going to a "happy place." You learn not to pay attention.

You haven't tried anything at all sexually, even masturbation, for two years?

Nope. Not much point when you can't feel anything.

I bet these last two questions will get people to always buckle their seatbelts! I had mine buckled in the accident, it was just a really bad accident. But still, there's no point in going through this because you weren't wearing your seat belt in a minor collision.

Feel free to ignore me if you wish; everybody does.

Cry me a river. The "Ask the Neo-Pagan Guy" thread is still more popular.

[MrVisible]

Thanks for answering. Not only is this starting to help make some sense of things for me (and probably a lot of other people too), but you've got a really engaging writing style.

I've got a really tough question for you. As always, don't go near it if it makes you uncomfortable.

I knew a guy in a wheelchair a few years back, who I was just dying to ask out. He was smart, handsome, funny and strange; I was pretty sure he was gay, too. But I couldn't bring myself to ask, because I just didn't know enough about his paralysis. Specifically, I didn't know if he'd even be interested in a relationship.

Also, I was nervous about it seeming an act of pity, or a display of political correctness on my part. And, I wasn't at all sure how the mechanics would work out...

So my ignorance kept me from pursuing something that might have been good.

I guess my question is, whatever your sexual orientation, are you involved with anyone? Are you still interested? Is there enough in it for you to be worthwhile?

And, what would you think about someone asking you out?

Sorry if these questions are insanely personal, but it's been bugging me for years now.

[Scarlett67]

Originally posted by Dignan
So every time I have to go to the bathroom (which I can't really tell, I usually just go every six hours at least, except night) I have to lube up a catheter and stick it in there. Imagine that! Being a high school kid and the nurse comes in and, on top of knowing you're not going to be walking for a while, says "you have to stick this tube in there every time you need to go to the bathroom." Not fun. I spent all my previous years making sure nothing with even the least potential for harm was kept away, and then I find out every time I want to go to the bathroom I have to jam a tube down there. Talk about desensitizing yourself and going to a "happy place." You learn not to pay attention.

John Hockenberry talks about this in his autobiography. He's in the same situation as Dignan -- as he describes it, his bladder is "stuck closed." Nothing comes out without the catheter, but when he puts it in, his bladder drains. Others' bladders are "stuck open" (or partially open), in which case they must use a catheter/bag combination all the time. Hockenberry says that of the two choices, he prefers it his way.

Dignan, you're doing a great job, but I'm guessing that people who are following this thread would enjoy Hockenberry's book, Moving Violations. It's very informative, and he's a real character to boot.

[UncleBill]

Originally posted by CalMeacham
UncleBill:

No offense, but I choose not to reply to this one.

None taken.

When I ride my motorcycle there is a kindship among riders, we almost always give a wave when passing. Dignan,Is there a similar type "automatic bond" with other chair-bound paraplegics?

And do you recall how you felt emotionally after the accident, and when you knew this was going to be permanent? Rage? Fear? Disbelief?

[Brynda]

Dignan is the expert here and I don't want to intrude, but I might have some info on the always-engaging question of sex. I am not in a chair, btw, but I am a clinical rehab psychologist and have worked on SCI units for several years.

Most males, if their injury is complete (no sensation or motor control), might get reflexive erections, which are erections in response to touch. Erections when cathing are common, for example. Usually, psychogenic erections--those in response to thoughts or sight, etc--are not possible. Given the lack of sensation, of course, they can't feel either one. Orgasm is possible, usually through use of a vibrator or other device (trust me, you don't want to know more) so they can father children, but an orgasm during sex is unusual when someone has a complete injury. That said, however, there are happy exceptions. If a male has an incomplete injury, the type and quality of erection depends on the level and severity of his injury.

For women with a complete injury, lubrication generally occurs with touch, but not with thought--sort of the female version of reflexive and psychogenic erections. Even though they generally do not have genital sensation, intercourse is certainly possible, although an orgasm is unlikely. As with men, if their injury is incomplete, what they feel depends on the injury.

If orgasm is not the only fun part of sex, couples can enjoy sex even if one person has a complete injury. My advice is to be creative and try things. A paraplegic friend of mine says "your sex life is over only if you think it is over."

In general, I think sex after SCI is a little easier for women. Not only do women not have the whole erection problem, but we don't worry quite so much, IMHO, about performance. Also, the whole idea of enjoying sex even if we don't have an orgasm because it is pleasing someone else is a bit less foreign to us.

There are some good resources out there on sex after SCI; if anyone is interested, please email me. Also, I highly recommend Coming Home for the sex scene between Jon Voight and Jane Fonda--yowza! I have had men with injuries tell me they found it quite...inspirational. :)

[Stephe96]

I have a question or two:

How did the doctors initially break the news to you? And how did you react?

Thanks

[Dignan]

mrvisible, I don't know about gay dating etiquette (there's another thread for that ;)), but I wouldn't think it would come across as a pity thing. The important thing is to treat people in wheelchairs like, what they are, people. I don't think I'd have anything against someone asking me out. It'd be a hell of a lot easier too. I'm often worried that girls wouldn't want to get involved because of the paralysis thing. I'm still interested.

UncleBill, I don't know, there could be some kind of "special bond" but I don't pay attention to it. I treat other people in wheelchairs like I do everyone else. If I don't have anything to say to them I don't talk to them, and I don't/wouldn't use the wheelchair to strike up a conversation. In fact, when I was first hurt I told a friend how I felt kind of guilty because I wouldn't say anything to other people in wheelchairs and did know if I was obligated to talk to them. He told me that I wouldn't talk to them for no reason if I was walking and I wouldn't feel guilty about it, so there's no reason to feel guilty about it now. I can understand if some people to feel a "bond" but that's just not my thing.

Brynda I've heard about those and I really hope that you don't have to stick it where I think you have to stick it. Just a yes or no as an answer will do.

I can't really remember who broke the news to me or when because I was pretty out of it for a while because of all the drugs I was on (for the pain). I wasn't happy about it though. All I could think about was all the stuff I wouldn't be able to do any more. Then I started thinking about ways to kill myself, but couldn't figure out any thing that I would be sure wouldn't hurt, so I scrapped that idea.

My biggest fear is that I won't be able to have kids. Even if it was possible to father them, I don't know if I'd be able to raise them through infancy (and everything else!) with the state that I'm in.

[Scarlett67]

Originally posted by Dignan
I've heard about those and I really hope that you don't have to stick it where I think you have to stick it. Just a yes or no as an answer will do.

If you haven't read Hannibal (as in Lecter), there's a passage in the book that describes what I think Brynda is talking about.

Even if it was possible to father them, I don't know if I'd be able to raise them through infancy (and everything else!) with the state that I'm in.

That you would have such personal concern for children who are not yet even conceived, in either sense of the word, makes me think that you would be a fabulous dad and husband. If I were a single woman who wanted kids . . . well, how YOU doin'? ;)

[Brynda]

Dignan, 'fraid so. Sorry about that.

I have to commend you on this thread. You are a brave guy to fight ignorance on this personal level. I think Scarlett67 is probably right about your potential as a father, too. I have known women who have raised babies from a chair. No reason you couldn't do that, especially given your reach. :)

[Shirley Ujest]

Regretfully, I am more than familiar with spinal injuries:

My father in law is in a wheelchair.

Paralyzed from the nipples down from being T-boned (not the steak, but like the letter T) on his motorcycle. His vertebrae (t4 or 5, I can't recall)was crushed from the impact of his landing on the cement. (my mother in law was in the accident too, her left leg essentially took the brunt of the hit from the car and severed her leg below the knee. It was peiced back together and she only has minimal aches and pains and can predict the weather better than a Doppler 9000.)

They are now 60 and 58. It happened 10 years ago May 19.

They have never boo hooed themselves. My father in law was extraordinarily active for a man his age. He was a brick mason ( best one around, he was still getting calls from big name builders years after the accident from guys who hoped Siggy might be available, only to find out about the accident then.) They are positively the most optimist people I have ever met. Growing up in a family of disabled people ( my brother's all have Muscular Dystrophy)I can tell you first hand, Attitude Is Everything I grew up in a Ying Family to marry into a Yang Family.

Think about all the good things in your life: family, friends,and the insane people here at Straight Dope. The year of my father in laws accident, 1991, the ADA passed. Meaning, before that, curbs and entering buildings was a major pain in the ass, amongst other things.

You are not alone, especially if you are schizophrenic :)

And you do have a right to be angry, you are a young man and bad things should not happen to a young man or woman. But they do. (Bad things should only happen to pedophile, homophobic, nazi drug dealing ass wipes.) I won't tell you this is all a part of a master plan and things happen for a reason , because you've heard it all. Just remember this: There is always someone to talk to.

If your vertabrae was bruised, I daresay I would not give up hope on never moving your limbs again. It can take a long time for the shock to wear off for the spinal column. Nerves have been shown to re-route themselves. The advancements being made on spinal injuries are growing by leaps and bounds in the last ten years. You may want to check into one of the top places in the country for news:
Miami Project. and the one Christopher Reeves in in, which totally escapes me now. It's in Colorado. It's where Mike Utley went.

Also, don't beleive everything the doctor's tell you. They have to give you the worst case scenario. They are not lying sacks of shit, they are protecting themselves from lawsuits.


Anyways, I do have a question:

Do you have a handicapped equipped van or a car with hand controls to help you get around?

How has your house been modified to meet your needs?

What do you want to be when you grow up?

Do you have a quickie wheel chair? Standing wheelchair (those are waaaaay cooool.)

[Dignan]

Brynda, darn, that's not what I wanted to hear at all. I'd heard people talk about them before, but never about how to use them. That really pisses me off. Oh well, it's just spit in a bucket at this point. Thanks for filling me in though.

Shirley Ujest, yes I have a car with hand controls. It's a two door and I have a quickie wheelchair that I fold up and put in the spot between the front and back seat (think where you'd put your legs if you were sitting in the back). We had to make a lot of modifications to the house after the accident. Ramps, remodeling, the works. I don't have a clue what I want to do when I grow up.

[GilaB]

You mentioned that you were adjusting to college. Are you living on campus? Is the college helpful with stuff such as getting around, giving you a mailbox low enough on the wall that you can reach it, etc.?
Also, what kind of stuff do they have you do in rehab? Do they have you doing that pretend-walking thing?

[Carina42]

Dignan, you're cool! The questions I had have been asked & answered in this thread already, mainly etiquette...stand or crouch, offering to help. (I've been brusquely denied twice, and had people grateful, too. I guess it's an individual thing.)

While in college, there was a guy in one of my classes who had one of those wheelchairs that he blew into to operate. Most of his body was pretty much inoperable, and he could only communicte through a laptop. A friend of mine & I used to take him to lunch because he could not really feed himself. I must say, it was a little strange spoonfeeding a man who probably had a higher GPA than me...it did feel awkward, though I got used to it.

[Dignan]

Sorry I took a while to reply.

GilaB, yes, I live on campus. I don't think the University does enough to make sure things are accessible, but I can reach the mailbox, and while it's not ideal it isn't terrible. I'm not in rehab anymore, but when I was the therapists pretty much just taught me how to do things for myself when I got out into the "real" world. I practiced opening doors, getting dressed, bathing, cooking, cleaning, etc. I can do all of those things now without any problems, it takes more effort than if I could walk, but everything does. I'm not sure exactly what you're talking about with the pretend walking thing. I didn't do anything like that though. There are electrodes I guess, but the place I was didn't have anything state-of-the-art like that.

Carina42:
(I've been brusquely denied twice, and had people grateful, too. I guess it's an individual thing.)

Yeah, it's like anyone else. It's good that you don't characterize an entire group because of how some people are. I think it's always best to offer to help, even if you get turned down.

[Barbarian]

What do you miss the most?
Did you get to have sex before your accident?

Do you race? I thought the wheelchair races at the Sydney Olympics were the coolest ;)

[Fiver]

Dignan, you stated you wouldn't be walking "for a while." What's your prognosis? My understanding was that a bruised spinal cord was an "incomplete" injury, and therefore could possibly recover some function over the long term.

Did you receive gangliosite or some similar function-loss-preventative (don't know how else to describe them) drug after the accident?

Do you think it's a good thing or an unhealthy thing to hope for new treatments that might cure you?

[todaystomsawyer]

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?

[Tiburon]

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. :p

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.

[Dignan]

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.

[Superdude]

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.

[Mahaloth]

Thanks for starting the thread. Well, here I go with my questions.

1. 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?

2. 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?

3. Do you have a motorized wheel chair? If so, how do you stay in shape/

[Dignan]

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,

1. 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.

2. 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.

3. 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.

[sulawesi]

Tiburon:

Did you mean 50 million? I found this (http://www.census.gov/population/www/pop-profile/disabil.html) 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 (http://www.census.gov/hhes/www/disable/census/graphs/anydisst.html) breaks down the percentage of disabled persons by state; for whatever reason, disabilities seem much more prevalent in the southeast.

[Tiburon]

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.

[Broomstick]

Originally posted by Dignan
My biggest fear is that I won't be able to have kids. Even if it was possible to father them, I don't know if I'd be able to raise them through infancy (and everything else!) with the state that I'm in.

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.

[Paul The Younger]

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

[Dignan]

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.

[Dignan]

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.

[Scarlett67]

Originally posted by Dignan
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.

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.

[Dignan]

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

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.

I know of many "fathers" who have no disability whatsoever and yet contribute absolutely nothing toward the care of their children.

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.

[SuperNelson]

Maybe I'm missing something here, but wouldn't being in a chair mean you always have a lap for your child?

[Demo]

Originally posted by Dignan
[quote]
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.

Bwahahaha! :D


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.

[Joaquim Matilda]

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.

[Dignan]

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.

[Sparteye]

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.

[Scarlett67]

::Yay for Sparteye's aunt!::