Last post Mon, Jun 02 2008 11:19 PM by Liesl. 21 replies.
Forum was looking a little empty, so I figured I'd fill in some space with another thread.
When thinking about the reality of things, what do you folks think are some positive things [the Good] (because, in spite, etc.), negative things [the Bad], and things that you wake up to every day that find you wishing were quite different [the Uglay (don't want to get sued by Clint Eastwood :p )] of Spina Bifida?
My own:
Good: SWEET PARKING! Okay, well and meeting some great people that I would normally never meet (and being involved in great things I never would've probably done).
Bad: Paralysis (legs)
Uglay: Having attached to me a pre-determined social stigma, that I'm not as social (and with that 'other' pre-determined social 'assumptions' stemming from that) or 'competent' as non-disabled persons; as well as the condescending and needless pity others sometimes try to force upon me.
Hey Windrider this thread is a neat idea!
The good:
People seem more friendlyThe ParkingNot having to feed parking metersNot having to go into work every morningThis websiteMaking students haul Scuba Equipment
The Bad:Taking Neurotin everydayLegs going crazy at nite when I'm trying to sleepCrutches that make noise when I walkThe Ugly
My ugly bracesPrognosis of my neuropathyPossibility of major neck surgeryBecoming a high level Quad if I injure my neck in any way
Joe
For me living with sb it would be
The good: Friends. Even though I don't have many friends, I have the most amazing best friend. She and her 2 year old daughter have been my world. We have had our problems, but we always end up finding each other. We just about do everything together and she is there when I need her. Everytime I see her and the little own I know that everything is ok. Another good thing is meeting awesome people that I wouldn't have met if I wasn't in a wheelchair. I have met some wonderful celebrities and just some wonderful people as well. Another thing is getting good seats at concerts! lol
The bad: Probably would be not being able to do the regular teenage stuff, like partying and sneeking off at night...lol. I joke that I now am thinking about this at 24. Also the boyfriend situation that I am now getting sorted out, because I have one! lol
The ugly: Would be the surgeries. Also the sometimes incompetent doctors. The idiots that look at you at concerts and then just stand in front of you. The idiots that watch me get out of the car and then give me looks. Also the idiots that have handicapped placards that don't need them and take up VAN spaces, which is why I don't drive. I can never find a parking spot and my mom ends up having to park in a regular spot and then has to back out a little to let the ramp down to let me in and out of the van.
I came up with 4 advantages of bein' around someone in a 'chair:
1. You get the best parking spaces.
2. You never have to walk anywhere cuz you can always catch a ride on their lap.
3. If you get mad at someone in a 'chair you can always chain them to the bumper of the nearest out of state truck.
4. Men in 'chairs don't leave the toilet seat up.
The Good: Best Parking...Meeting new people. And having an open mind that most "normal" people do not have.
The bad.Painful leg spams every second. (before my last surgery.they are gone now.)..The way people act towards you.Either they avoid you..Or they are overly nice.
Ugly..Cathing..Too many surgeries.(12 so far). Not being able to enter certain stores or building that only have stairs. :(..It seems a lot harder for a guy in a chair to meet women.
Hi, I like this board. :) I don't think Clint Eastwood would mind.
Good:
I always have a chair no matter where I go...The parking thing isn't so good for me because people in this area park in the Handicap spaces even when they aren't and the police don't do dittly about it.
Bad:
I find as I get older I ache more and it's harder for me to do the things I once loved, like horse-back riding.
Uglay:
All the scars I have on my body. On the one hand I can say, "Hey I survived this." On the other hand, I don't need an ugly reminder that I had to go through it in the first place.
I'm new to this site and I'd love to chat with anyone that would like to message me. I don't get online very often but I'll reply ASAP to any messages. TC
* people tend to remember me (ok, so maybe that's not ALWAYS such a good thing, but usually)
* I think having a disability has increased my creativity, meaning that my entire life I have always had to look for different ways of accomplishing what I wanted to do. I enjoy a new challenge & having to use my brain to figure out new ways of solving problems. And I get a lot of satisfaction when I accomplish something that way.
* being unable to get into places that are not wheelchair accessible (particularly bathrooms!)
* when I was growing up, I was never asked to do things like go on vacations with my friends, etc. While I did have good friends, I look back & wonder if maybe I missed out on being included in certain experiences because people either didn't think I cold do it or didn't want to put forth the effort.
Ugly:
* Pressure sores. HATE THEM!!! And I hate having to constantly monitor whether the activity I'm doing is going to cause one.
* Stereotypes- some days I feel like no matter what I do to show them otherwise, many people are always going to assume I'm helpless, need pity, etc.
Any one here also experience symptoms of RLS (restless leg syndrome)??? My mom is continually dorsiflexing her feet (bring toes to knees) and moving her legs, she is pretty sure she has RLS but can't take any drugs for it because of other issues (ie bladder and drug reactions). Any ideas or anyone think it's something completely different??
Hi-
I have occaisional problems with RLS. I do a few things that tend to keep it manageable. I'm an adult with SB
1. Soak in hot water before bed. This is good for alot of muscle relaxation issues. I'm kind of a hot springs/ hot water fanatic and look for hot tubs or natural hot springs when I travel.
2. A Product actually called Leg Cramps. Much like aspirin and it's over-the-counter and should not interact with other drugs any more than aspirin. I get it at Walgreens and it's on the bottom shelf below aspirin.
3. Potassium. I used to cook for a living and learned from a couple of waitresses early on that a banana or 2 per day gives you a little boost of potassium which apparently reduces muscle cramps... seems to work- if I keep bananas around.
Hope this helps
Tom---Colorado
Thank you so much Tom! I'll relay that info on to my mom! I love your practical and effective advicev on managing RLS.
I saw a t-shirt once that had my picture on it (you know the white and blue ones they take of us that we don't get residuals from but they use them all the time) and it said "I'm just in it for the parking"
Lacey
Hey WindRider,
I have SB as well so here goes:
The Good:
Having to be more creative when doing things that people take for granted like going to the bathroom, taking a shower, etc. I think having SB has taught me different ways to do things and that has spilled over into other areas of my life.
Having a great Doctors
A great family and friend support system. Some of our friends I don't think even realize how rare of a person they are. Whether they're women or men they have to deal with more things than they do with able-bodied friends such as waiting for us in the bathroom, going to specific places that are accessible instead of any place at all, etc. But that's why they are our friends and that's why we are born into whatever families we are because for the most part our families can deal with this crap:) I say crap jokingly of course.
An and yes good parking spaces and no meter feeding
The Bad:
Having spent more time in hospitals than most people getting surgeries, routine check ups etc. None of you are strangers to that I'm sure.
The Ugly:
Dating. That's been a real kicker. I'm 31 and have never had a girlfriend despite many efforts of online dating and living an active social life. Despite having lived a fortunate life, I have very little hope in this department.
Bladder and bowel control problems. I guess you could relate this to dating but having to spend a ton of time in the bathroom and all that gets very frustrating.
Mom to a 12 y/o boy with SB.
Good: parking (when idiots who don't NEED h/c parking aren't taking up the spots); getting bumped to the front of the line at places like WDW and Epcot, my son always makes out like a bandit during Trick or Treating at Halloween *LOL*; w/c sports (Murderball, anyone? *LOL*) like racing and sled hockey
Bad: ACMII. (He was about 5 before he could even think about eating "real" food without yakking it up. He still has trouble with many tastes/textures of food, but the yakking isn't so bad now.)
Ugly: bowel management. Now he's got an ACE so it's good, but he still hates having to take so long doing it when a "normal" person can get it over with in minutes. And surgeries. (Knock on wood we've been good for a while!)
OK. Here's mine:
I'll stop here. Life is just to good to go on and on and on.
