[buffie]

I symphathize with your situation Zany as I am a c4-5 quad myself. I was trying to pass another vehicle on te reservation in ft benning, ga and as I pulled into the left lane, I hit the grass, snatched the wheel back, overcorrected the car and lost control which sent car flipping. When it came to a stop I was hanging out the hatchback upside down praying desparately to God to not let me die. It was 4 or 5 weeks later before I started to get any return.
My first return was I started to twitch my left thumb, with e-stim, I began to get use of all the fingers on my left hand although the movement is robotic-like.
It is amazing to me how although, I am just as worse off or worse than others, I still feel sorry for others in our situation. It's like, everytime I hear about a new sci, my heart sinks. I don't wish this on anyone. It breaks my heart.

[korrobe]

in sept 05...a few of my buddies and i were drinkin plenty while playing horseshoes and home run derby in a park on the eastern shore of maryland when we decided to go for a swim. i was the first one to dive in, but the last one out. when i hit the bottom i tried to swim up, but no luck. i just held my breath. my buddies of course thought i was just messing around...so it took them a few minutes to jump in a get me above water. i was under for about four minutes...but luckily managed to spit out the water and breath on my own. i was in and out of consciousness until after my surgery the next day. i was told i shattered c6 and have hardware from c5 to c7. it's been almost two years since then. since then, i got back to teaching 3rd grade (i went back after 5 months cause i was going crazy at home), i play quad rugby, i sing in a barbershop quartet, and do everything i did before. i have full arms...full left hand...and about 70% of my right hand (the docs say except for my one hand i'm about a t7 para...so i consider myself lucky). that's about it. adios

[President_Evil]

I guess mine is pretty boring.

well im 16 now when I was 15 I noticed I was walking strange like slightly limping and passed it off as tired legs and things like that.
I finally went to my GP and he thought it was too do with my brain so Off I pop to kings college in london for MRI scans and CT scans, nervously waiting, I get told 4 hours later than I have a fatty growth around my cord and I will be having an OP the next day too remove it, because it is pushing my discs into the cord.
I was told i'd be up and walking in 2-3 weeks but how they were wrong.
ALthough huge improvements have happened, I can now stand up unaided which makes transfers and stuff very very easy, and apparently my Consultant and my Physio's Up at good ol stanmore think I will be up on a frame soon.

all this in the space of 9 months =)

[Murray]

Greetings -

Wanted to throw my hat in the ring and tell my story, too. Been epileptic - grand mal - since I was a kid. Did about everything I could to compensate. Excelled in athletics. Surfed, mountain climbed, fought forest fires, took risks, got married (?), worked construction - mostly concrete - and taught hs English for 32 years in OR. (Trust me - It's harder than you think.) After retiring from the teaching game I went back to construction fulltime. Good exercize, good sleep, good food, good mental/emotional health and staying on my meds kept the seizures at bay. I'd been coming off a bout with booze - recovering alcoholic - stupid, I know ... doesn't exactly mix well with the anti-convulsants. I was "behind the eight ball." Should have stayed home from work. Stubborn. Went anyway. Forgot my meds. Was on the roof, hanging siding on a dormer, and had a seizure - lost consciousness, flew off the roof, did a header 30 feet below. My hammer blew out T11; severed the cord; broke a dozen ribs; did some internal damage ... am now a T6 neurologic T11 anatomic complete. Can't blame anyone but me - no matter how hard I may try. A tough lesson to learn, but I'm still alive. Shouldn't be. So there's an upside.

I miss basketball and sex ... not necessarily in that order. But, again, I've got time to work on some w/c b-ball skills, and time to try some alternative sex stuff ....

Here's to us.

[ziggy]

I got paralyzed after deciding to not attend a concert that i had tickets to because i had this weird feeling that something bad would happen if i went because i had to drive and i was going with a bunch of party animals.

Instead i went to a house party where i could spend the night and during the party,i dove into the shallow spot and broke my neck.The worst part is that i was done swimming and they were going to cover up the pool,but i decided to take one last dive in.

How's that for a night?I pass on a concert at the last minute so that i couldn't get myself in a jam and end up going somewhere else to ruin my life.

[Murray]

Hey, Zig -

It's a wild ride, isn't it? One moment, you're havin' a good time partying with your buds; the next, you're in the trauma ward wondering what the hell just went down. I remember comin' to with my girlfriend at my bedside - silent. I couldn't recal anything, didn't really know what was goin' on; then I glanced toward the foot of the bed and saw my brother, still in his work clothes, a tear sneaking out from underneath his sunglasses. I knew something bad had happened - just looked at Toni, then Mike and said "Shit" about a dozen times. That, and some other stuff.

That was about three years ago. Seems like a million. But - what the hell - we're still here. Still breathin', occupyin' space ... gotta do somethin' decent with what we got left.

Without sounding maudlin, I'm genuinely sorry about your accident.

Hang in there ... to all of us.

[Chilepepper]

Life can be funny. One moment your having a time of your life. Then the next breath your world as become upside down in that blink of an eye.

[LilCube]

My story is a long one, but the short story is I broke my neck when I was 15. I was in state custody at the time. 15 years later and I'm just now about to start my life. I'm an incomplete quad. I have some functionality in my left hand, though far from normal. Only my thumb works to any real degree on my right hand. No triceps, and nothing below my shoulders. Got back alot of my feeling. Mostly a numb dull feeling, but feeling none the less. My feet are hyper sensitive. Almost everything hurts them especially my right foot.

The long version is on my abandoned website. I recently had some issues and in an effort to help myself better understand my feelings/thoughts, I wrote my life story. I wrote it as if it was a screenplay or book. I put it on an old website I started and never finished. Common theme with me. The site is about 6 years old so not very upto date, but my bio now is. The stuff as it relates to my injury and recent issues is from Chapter 5 on...but it's all a pretty good read. There is some colorful language but nothing too bad.

Here's the address...
http://www.lilcube.com/about.html

[bobo2006]

I joined on 27th July, 2 days before my 32rd birthday. I have just been reading posts and getting encouraged/discouraged etc.

I was injured on 3rd December, 2006. I haven't had the guts to paste anything here as I often do not want to share my stories. but lets be fair - if i have to read all your stories - i should contribute??? !! .

I live in Nairobi, Kenya and had just finished the production of a tv drama series which involved travelling to the remote parts of Kenya and enjoying the nice scenery Kenya has to offer. It was pleasant being a tourist though I was always busy working not enjoying the view of the Mt. Kilimanjaro from the Amboseli National Park, taking pics of the herd of elephants or even riding on donkey backs in Lamu...(wish i had done all this).

After the production we headed back to Nairobi and we had a girls night with all my girlfriends. On this day I did not drive my car to the bar but left it at home, one of the girls volunteered to drive us all. We had a lovely time and they dropped me off home at 6 in the morning as i hummed away a vernacular song we found very funny.... when I got upstairs (2nd floor apartment) i locked the door and got to bed.

My live in boyfriend had gone partying too and when he got home later after me couldnt get to the house as I had locked. He tried knocking but i couldnt hear. Finally he broke the window and i heard! on going to open the door, he was very furious (i think we argued) but opening the door and anything else i cant remember.

I just remember being in hospital feeling cold and saying I cannot move my feet. Apparently he threw me down from 2nd floor to ground floor. I compressed T4/5 and bruised my butt. It has been a long journey sometimes I cry a lot, then other times I am grateful to be a life. I hate the wheelchair, anyway, the boyfriend took off to his country (he is african but not Kenyan).

My sister has been with me all the way from the first day, she is my source of inspiration, I believe what cant break you makes you!!

Luckly I have always been a positive person, hope I continue being positive...

ITS TOUGH LIFE!!!

[cate]

Oh Bobo. that is tough.Continue being postive, you will get a lot of support from this site.
Anyway welcome, and best of luck to you
Cate

[nomis]

Welcome Bobo
Wow what a story!
Yes, life is tough.
But remember it's speckled with lots of delights, big ones and little ones.
I'm sure some now are coming your way.

[miss piggy]

Hi Bobo
Welcome Stay strong As for your x boyfriend thats all i going to put.

[angel888]

I have been an SCI almost since my birth.. I was 3 weeks old that time when my parents noticed me not moving my feet even though they try to tickle them. They got worried so they went to the doctor and had me checked. They ran a couple of tests and later I was diagnosed with neuroblastoma in my spine. It was a bit rare. Neuroblastoma is usually found in the kidneys but mine is in the spine. I had to be operated. The cut 3 nerves from my spine and had to go on a cobalt treatment. The doctors told my parents that I would be paralyzed. I was on intermittent catheter, and used suppositories to have BM.

When I was older, I was rehabilitated and started walking. I used a walker and a brace. There even came a point where I could stand without braces and without anybody holding me. My BM was already with the help of enema. I also had scoliosis but too lazy to wear a brace and eventually had it worse.. I had been constantly CT scanned to see if there was a recurrence but there was none. Then we stopped the ct scan. I was able to go to school with only me as a disabled.

At age 13, I noticed my legs are weakening. We ran some tests if the possible cause was a recurrence but found everything normal. We had to place locks on my braces. I was fully dependent with the locks and allows my legs to fully lean on the brace. I had a pressure sore. My mother cleans the wound. 2 years after and a junior in school, I still had the sores that never healed. I also frequently had UTI at that time. I was always absent in class. I always want to vomit. I had no appetite to eat (but lost the pounds I want to loose) .. We went back to my doctor to have me checked. The doctor saw the wound he said it was clean but they had to close it. At that time, we also consulted my nephrologist and had some tests done. I had a severe UTI. Everyday before and after going to school we had to go to the hospital for antibiotic shots. He told us that to lessen the UTI, I should have a cutaneous vesicostomy. But it was just 3 weeks before vacation. We just waited for the vacation to have the 2 operations. I stayed in the hospital for 2 weeks. Went 3 times to the OR for debridment, closing of the wound, and cutaneous vesecostomy. Almost whole summer I was laying on my stomach to keep the pressures off my legs. They healed. But after walking, the sores were back again.

The school opened and me a senior, but the sores were still there. I had to stop for 2 months. I self studied at home and my mom got to get my assignments from my teachers every week. I had to take the tests in the clinic but thank God still have my scores high.. I went back to school but the sores were still there. I didn't wear the braces anymore but I couldn't stand. I could not even use a wheelchair 'cause the school is not disabled friendly. It has a lot of steps. I had to be carried everyday. I also have never imagined myself in a wheelchair. I was bit ashamed of it. I finished senior year and graduated and started to use a wheelchair. Still the sores were there. I did not attend my graduation. After several recurrence and healing of the wound, it finally healed completely.

That summer after graduation, we consulted a doctor for my scoliosis. He was a neurologist. He said I should be thankful because neuroblastoma usually has a recurrence at age 13 and I could have died 3 years before that time. I had the operation on my scoliosis. It was 86% in severity but after the operation, it lessened to 63%. They could not make it really straight 'cause my bones were already not that flexible.

I am already 19 now and studying online for medical transcription. For my social life, I have none. But I am very thankful I have my whole family with me and keep on thanking the Lord for them.

Sorry if the post is long and boring.. I thought my post will be short but my memories just went back.. and if you wonder why I finished school so fast, school here in the Philippines is 6 years in elementary and 4 years in high school...

This post has been edited by angel888: 26 August 2007 - 01:15 PM

[nomis]

Actually, angel888, that's an interesting post.
You've certainly had your struggles but it's great you've managed to get yourself a good education.
How come a gorgeous angel like you is holding back on the social scene?

[angel888]

nomis, on Aug 27 2007, 10:14 AM, said:

Actually, angel888, that's an interesting post.
You've certainly had your struggles but it's great you've managed to get yourself a good education.
How come a gorgeous angel like you is holding back on the social scene?

thanks!!.. well I am usually at home.. I seldom go out.. can't get out alone.. my family is busy with their work.. I am not into parties.. and I always feel out of place in social gatherings..

[nomis]

angel888, on Aug 27 2007, 10:28 PM, said:

thanks!!.. well I am usually at home.. I seldom go out.. can't get out alone.. my family is busy with their work.. I am not into parties.. and I always feel out of place in social gatherings..

Parties aren't my thing either - too superficial and pretentious (and maybe I'm a bore). But it would be nice if you could get out to some club or activity. Think of all those people who are missing out by not knowing you.

[angel888]

nomis, on Aug 27 2007, 11:20 AM, said:

angel888, on Aug 27 2007, 10:28 PM, said:

thanks!!.. well I am usually at home.. I seldom go out.. can't get out alone.. my family is busy with their work.. I am not into parties.. and I always feel out of place in social gatherings..

Parties aren't my thing either - too superficial and pretentious (and maybe I'm a bore). But it would be nice if you could get out to some club or activity. Think of all those people who are missing out by not knowing you.

You are right with parties being superficial and pretentious... I usually try to go to dog shows which is about x4 a year but I'd rather be cheering for my pets than talking with people.. I just don't know what to say....

This post has been edited by angel888: 27 August 2007 - 11:36 AM

[nomis]

Just go 'woof woof' and see what happens.

[angel888]

maybe i'll try that...

[Ches]

Im with Nomis, you need to get out girly! You dont have to go party. There is tons you can do in this world lady. Seems to me like you are an unbelievably strong person, you've been through things that would have been unbarable for me. So Im confused, you obviously can't be stopped you have made it this far. So whats stopping you?! People in the real world can suck at times, but it just helps you thin out the good ones. Everyone needs company, family can drive you crazy... If I lived closer to you, I would come drag your ass out of the house!

This post has been edited by Ches: 28 August 2007 - 11:52 AM

[Murray]

Ditto that, Ches - good call. Angel, go get 'em. Like she said - you got some moxie, girl. Use it. And keep using this forum to get some encouragement from time to time. Best of luck. -Lynn

[jessee]

I've been a member here for a bit and still have not shared my story. So here it is, I'll try to keep it as short as possible.

My life was going great, I had just gotten married and was pregnant with our first child. One day after work (July 22nd 2005) I was sitting in a parking lot waiting to meet up with some friends for dinner. My car was facing a major road and it was rush hour. I noticed a guy standing in front of the party store next to the parking lot. He was on his cell phone so I assumed he was waiting for a ride or something. I turned my head and was looking south waiting for a familiar car to enter the lot. Just as I turned my head I noticed the guy start to walk behind my vehicle. It was July so I had the windows up and the air on. Then in one quick second he changed directions and was at my window with a gun. He told me to get out of the car. I panicked and he tapped on my window with the gun and told me to get the f*@k out of the car. Something told me not to get out and I slammed the car into reverse. He shot twice, one bullet hit my headrest the other went in my arm and ended up lodged next to my spine at T7.

My car was stopped when I hit another car in the parking lot. I looked around, didn't see anyone and then called 911. I was able to tell them what happened, where I was, and what way the guy headed (on foot) before I passed out. The next thing I know I'm being pulled out of my car then passed out again. I came back too in the ambulance and I was crying and telling the EMT's that I was pregnant over and over again. After that the next thing I saw was doctors and nurses everywhere. There was one special nurse that did nothing but talk to me and I thank God for her. Of course there was also that one doctor we have all met that says those fateful words... "you will never walk again". I had one word for him and one word only... NO! No one is going to tell me what I can and can not do. I have not given up on walking. I guess I figure it's not up to anyone but me and God. I've read the stories and heard the miracles. Not just the miracle of walking but of surviving. I admire all of you.

The police ruled it an attempted car jacking though I don't think he wanted my car. I still believe to this day that it was some type of gang thing, possibly an initiation of some form. Something in my gut told me to stay in that car. I guess I'll never truly know but I believe I made the right choice. I mean how many car jackings happen in broad daylight, on a major road, during rush hour traffic. Anyone who drove buy would have seen him. The shooter got away, on foot, and still has not been caught. My former employer even posted a 10K reward and still nothing. It won't change what happened to me but what about the next person.

Now for the happy part of my story, my son. He is my miracle, my joy, and my reason for life. I never thought I would ever be in this situation but I am and I'm blessed with a loving husband, a wonderful son, and supportive family and friends.

Did I say I was going to make this short.... sorry didn't quite work out that way. LOL

[nomis]

Gripping story Jessee. What a horror.
Amazing you were able to react so decisively.
I can appreciate the pride you have in your son.
He, too, has a mom he can be very proud of.

[Murray]

Geesch, jesee - That's quite a piece of history. I'm sorry you had to go through that. Hope all the mental/emotional recovery is going as well as your physical rehab seems to be. You're a "tough cookie." That's good. Good, too, that you have a great support group around you and a child to boot. Take a look at spinalcord.uab.edu for an interesting breakdown of statistics on the various causes of sci. I was surprised to find gunshot wounds among the highest. As for the man (used loosely) who did it, his come-upin's will get 'im. You can bank on it. Karma. Best wishes.

[angel888]

Ches, on Aug 28 2007, 11:51 AM, said:

Im with Nomis, you need to get out girly! You dont have to go party. There is tons you can do in this world lady. Seems to me like you are an unbelievably strong person, you've been through things that would have been unbarable for me. So Im confused, you obviously can't be stopped you have made it this far. So whats stopping you?! People in the real world can suck at times, but it just helps you thin out the good ones. Everyone needs company, family can drive you crazy... If I lived closer to you, I would come drag your ass out of the house!

Yes they drive me crazy at times... I think this started at high school.. In elementary I got lots of friends but when we reached high school, they got their freedom of going out to activities that I could not keep up to.. We started loosing communication.. That started my pressures when Im with other people.. I felt I could hinder them enjoying their lives.. I guess facilities also hinder me.. But thanks! I would be glad to be dragged..

[angel888]

Murray, on Aug 28 2007, 06:14 PM, said:

Ditto that, Ches - good call. Angel, go get 'em. Like she said - you got some moxie, girl. Use it. And keep using this forum to get some encouragement from time to time. Best of luck. -Lynn

Thanks Lynn!.. Yes I will be.. i guess it is easier to be with people who really understands our situation... I really am happy to be here and relate with people and know that we are not alone...

[jessee]

nomis, on Aug 28 2007, 10:23 PM, said:

Gripping story Jessee. What a horror.
Amazing you were able to react so decisively.
I can appreciate the pride you have in your son.
He, too, has a mom he can be very proud of.

Thank you for your kind words nomis. We should all be proud of ourselves!

[jessee]

Murray, on Aug 29 2007, 12:30 AM, said:

Geesch, jesee - That's quite a piece of history. I'm sorry you had to go through that. Hope all the mental/emotional recovery is going as well as your physical rehab seems to be. You're a "tough cookie." That's good. Good, too, that you have a great support group around you and a child to boot. Take a look at spinalcord.uab.edu for an interesting breakdown of statistics on the various causes of sci. I was surprised to find gunshot wounds among the highest. As for the man (used loosely) who did it, his come-upin's will get 'im. You can bank on it. Karma. Best wishes.

The body sure does heal better than the soul. I have my good days and bad days and on the bad days I don't feel that tough. This has been a better year and I'm emotionally a lot better than I was in the beginning. Besides I'm not giving up on my dream of walking just yet.

Thanks for the website, very interesting.

I know in my heart that the evil man that did this to me will some day get what is coming to him. Either on this earth or when he faces his maker.

[dorkette]

Hey Y'all!

Newbie here! Last I was googling for something completely different and I stumbled upon this site. When I was younger my mom always asked if I wanted to do a support group or something and I always said no because sitting around in a circle hashing out problems always sounded more depressing than helpful to me. Also, I knew it was one in a million that I’d a fine another person my age dealing with what I was dealing with. But google sent me to angel888's post and it sounded so eerily similar to my own life story that I couldn't not join up and post. It took me longer than expected to write everything thing out so I'm back tonight to bore you all.....

March 1988 - Baton Rouge, Louisiana. Woman is in labor 36 hours until she has a healthy baby girl... except for Meconium Aspiration (had to go look up the terminology). They suction lungs, do a chest x-ray just in case. Tumor is spotted, and seven days later the woman, her husband, and baby girl are on their way to Memphis, TN to St. Jude's. Diagnosis: Neuroblastoma, shaped with finger-like projects wrapped around spinal cord.

Chemotherapy shrinks the cancer and at 5 months old I have my first major surgery to remove the rest of it. Been in remission ever since and an alumni of St. Jude since June 2006. (Have never heard about the 13 age relapse angel, but I guess it's for the best because it would have scared the hell out of me). While going through chemo my parent’s notice that my legs aren’t kicking like other little babies and they realize that since the cancer was on the spinal cord it caused paralysis. At three was the first wheelchair (bumble gum pink).

At eight I have my first surgery I can remember. I was scared to death. Yes, I’m a cancer survivor but the thing is… I don’t remember any of it. I never knew that the days, weeks, months of not knowing what was happening, what was going to happen, if I was going to live feels like. I wasn’t old enough to realize what treatments and etc were. (Up until a few years ago I didn’t even know that chemo is administered by IV) I’ve always lived/dealt with what I call the “after effects,” mainly being in a wheelchair. So when I had to have surgery it was a huge to deal me. Since I didn’t have bladder/bowl control urine was refluxing into my kidneys and they had to correct it. They ended up (sorry that I don’t remember the correct terminology) enlarging my bladder by using a piece of my colon then using my appendix to create two stoma’s on the side of my abdomen, one to bladder the other to colon. I catherize like normal for the one to the bladder and the other is for pseudo enema (push water through catheter which causes a pretty immediate, natural BM) <- because I’m sure you lovely folks wanted all that information. Right after surgery I was pretty freaked out the the enema stuff, mainly because no one decided to inform me what an enema was before hand. But now I realize that I’m pretty freaking lucky to have this much “control” over bathroom needs and I’m eternally thankful that I don’t have a permanent cath and colon bag. For a couple of years after the surgery I had UTI’s all the time (part of bladder being out of the colon would do that) I take medicine daily to help not get them and drink lots of water and I actually haven’t gotten one in a really long time.

Moving on – I attended a "special" preschool with other disabled children but when the school board wanted to put me in a community based class room for kindergarten my mother refused. Since then I've gone to our local districted school (anyone from BR knows how messed up the school system is) and they've usually been helpful in any accomodations I needed. (Tip for parents: nice usually gets you run over, be forceful. It's the only way to guarantee to get things done.) My local highschool was two stories, and their solution for a person before me was to have the football players carry them up the stairs. ... Sounds like a good idea looking back on it ;) but very impractical. I went to the only one story public high school. The handicapped stall in the bathroom didn't have a door (unless you call a piece of cardboard refrigerator box a door) because of the large community based wheelchairs student popuation because aids helping them and such. My entire freshman year I refused to cath at school because it took the school a year to get a real door.

For as long as I came remember I’ve always looked a little slumped over in pictures. They knew for years that I had bad enough scoliosis where I would need surgery but wanted my spine to mature enough before they did it. Backjacket/brace thing was horrible, it was so freaking hot to wear… I hated it so much that I was actually looking forward to spine surgery. When I was 11 they finally did the surgery because an 80 something degree curvature isn’t fun. Now I have a metal rod fused to my spine (as if I didn’t beep already going through metal detectors) with a railroad looking scar going down my back, lol.

(SORRY THIS IS SO AMAZINGLY LONG!!)

Six weeks after surgery I start middle school. It’s the first week of class, I bend over to put my flute on the floor and hear a pop and my stomach muscles clenching badly… my normal sign of something going wrong. I freak, thinking I just screwed up the surgery. Finally getting to the doctor with my mom later that day – I had managed to crack my femer in half (the strongest bone on the body, by the way). Because the rod from the spine stuff was screwed into my pelvic bones it made bending different and I just put pressure on it the wrong way and it popped. To this day I remember being in the doctor’s office going, “I’m already in a wheelchair, please someone explain to me how the heck I just broke my leg .“ I opted not to have surgery since I had just had it and did the traction route instead. I swear to God folks, I wouldn’t wish traction on my worst enemy. Being in bed 24 hours a day for 7 straight weeks… it’s amazing I didn’t go completely insane. Always find out what you’re signing up for before you jump right into it, hee.

Well, that’s really all the medical stuff I can think of except other random side effects. I had horrible gag reflex and didn't swallow properly so around one-ish a feeding tube was put in where my mother had to pump in nutrion for 14 hours during the night. Around 3 it was removed and I always drank pedisure, ensure, sustacal, boost, etc etc for my main nutrional source up until I was around 12 and decided that I needed to eat real food all the time. I still probably only eat a meal, meal and a half a day. Because of all that I’ve always been really petite. I’m 19, 4’5’’ and weigh about 85 pounds… but have no fear, I don’t look anorexic or anything. Since I had chemo so young while I was still developing as an infant, I’m missing a handful of teeth, others are really little and lacking enamel on a good number (braces for 3 years didn’t help a flip...). Also with the chemo, I’ve always had a borderline heart problem (part of the reason I continued to go the St. Jude even after 10 years of remission) and was on a heart med up until about 2 years ago just because the problem wasn’t to get any worse or better. Something minor, I also have right Horner’s syndrome which is an uncommon side effect of neuroblastoma. Basically my eyes are two different colors and the pupils are two different sizes and I don’t sweat on the right side of my face.

Currently, I just started my second year of college at the beginning of this week. Angel, with the embarassement of a wheelchair – I totally get it. I’ve always been an academic, mostly by self motivation. Many people who just see me think that since I’m physically disabled that I’m also mentally so part of the reason I’ve always tried to do well in school is to make sure I’m known to be smart (probably not the best reason). Also I’ve always refused to have an aid at school (mainly because I never needed one) and refused to get a power chair. I try to blend in as much as possible. When I was little kids at school just wanted to play in it, then got a little older and one would have those days where I would come home crying because some kid told me something idiotic. By middle school age people who didn’t already know me would asked that lovely timid question of, “What happened?” and I never minded answering although I never been quite this informative (not even with most of my current friends). Usually my standard answer if I had cancer when I was born and it made me where I can’t walk. During high school one of my good friends told me another girl that I was friends with at school but didn’t hang out with on the weekends or anything asked her what happened with me and she was like you can ask her yourself, you know. She isn’t going to bite your head off or anything. I know that people are just trying to be nice with the “I don’t mean to offend you…” but it just makes me laugh. I don’t see the question as offensive, because it isn’t as if I don’t notice that I’m different. However I made a speech in English class senior year saying wouldn’t it just be all the more awkward if I introduced myself as “Hi, my name is so and so and I was born with neuroblastoma.”

I’ve been extremely lucky in life. I drive (year and a half of HELL process to go through though and it’s a big, red soccer mom van but hey it drives!), go to school, work, have an amazing set of friends, and new goal of moving out (I’m sure I’ll be grumbling about that somewhere else on this board). Angel, your comment about not having a social life was one of the main reasons I wanted to post all of this. Maybe you just haven’t met the right set of people? I swear that they’re out there. I heart my friends. We go to the movies? They pick me up walk to where ever we want to sit and plop me in a seat. Go swimming/the beach? Throw me in the water and fish me back out. I know it’s hard to except that kind of help to people who are nonfamily but my friends look at me stupid when I say they’re probably sick of having to tote me around. And they just respond with I’m always the one who drives and use my gas money so it’s even (haha).

The only thing I’m lacking is a love life. Never had a boyfriend and at 19 it’s getting pretty pathetic. A few months ago I had the horribly, mortifyingly embarrassing conversation with one of my guy friends going what the hell is it? Me? or the chair? I don’t think I have an atrocious personally that turn’s guys off and I don’t think I’m unfortunately looking or anything (I’d say average) so that left the chair which to me was understandable because if I was in someone else’s shoes I’d totally have reservations about it (also way side comment: why do people like to assume that a person in a wheelchair is/should date someone else in a wheelchair. That to me is the stupidest idea ever.) Anyway my friend’s response was that I’m not very flirty and don’t really put myself out there. Well personally I think I lack the flirting gene because even the handful of guys I’ve had had crushes on throughout my life the flirting thing just wasn’t coming. And yah, I don’t “go out” go out a lot. Been to a bar/club 4 times and it was always for an event (friend’s birthday, concert, etc) because I don’t dance, too young to legally drink out somewhere, and just generally feel out of place in that kind of setting. However I will say that it was a lot less awkward that I had always imagined it to be. So no I’m not a social butterfly at a soritery exchange every weekened but I don’t think I’m a hermit crab either.

So there it is – my life story in a very long nutshell. I’m sorry if I rambled on and on about everything. I hope y’all find something useful out of it.

Have a nice night and GEAUX TIGERS!!

[angel888]

That really was eerily similar with the same age and almost the same effects considering that neuroblastoma wrapped in the spine is really rare as my doctor would say.. I am glad to hear from you dorkette.. well, you were really right with those body brace.. I really didn't stand it and like you I really was also looking forward for the operation.. Oh and driving is really cool.. I really wanted to learn to drive but I think that conversion of cars for the disabled here in the philippines is not yet available or quite expensive.. About that age 13, my doctor told me that when I was 16. That news really came to a shock and made me more thankful that I am still well and alive today.. Well maybe you were right with me meeting the wrong people, but with my situation now wherein I study online which means I don't get to meet people, it would really be hard starting to meet new friends... But let's see after I graduate and start looking for a job.. maybe..