My life with spina bifida

[chris8258]

My name is Chris, I’m 30 years old born with spina bifida. I’m writing this in hopes that a parent will read this and find some use of it. I’m the perfect example of what you do not want your child with spina bifida to become. Now I’m not a bad person, I’m just not successful in life. It really is hard for me to say these things but I’m hoping that it helps me change my ways.

Anyways, the first thing that came back to bite me in the ass was public school. I’m not a fan of it for a number of reasons. First being the kids just never understood me, teased me, and just made my life at school a living hell. To this day it makes me sad. I wanted to learn, I wanted to learn everything I could get my hands on, but the kids just got to me too much. I would do home school in a heartbeat if I had a chance to do it over again, and so would my mom.

I made it to the tenth grade and dropped out hooked on drugs at 17 because the only people that would except me where the other losers in the school. We need a lot of help fitting in to the fast pace environment of grades 7 and up and the help just was not there, and to my knowledge it’s still not. For some reason we tend to be very smart, and I guess that is because we exercise our brains more than any other muscle in the body, and emotional issues can really cripple that.

The fact that I never had a good education made it impossible for me to pay for college, I also had zero interest to even go back to school until I was 24. So for the last 6 years I sat around and learned everything I could about computers. I read book after book after book. I learned a lot. I would build computers and sell them on ebay for extra cash, but shhhh I can’t tell the government I made a little money or I will lose my health coverage. They allow me to make 60 dollars a month, more than that and it’s gone.

I’m sorry if this post comes off as a big poor me post, but I just needed to vent. Sometimes I wish life would just be over, and I don’t want any of your children to ever feel this way. Love them, protect them, fight for them, never leave their side. This world can be very cold, and unforgiving.

[kali]

hi Chris, I have tears in my heart and eyes! I have a 9 year old boy with sb! my message to you is its never too late to reach for the stars. The fact that you learned all you could about computers is proof that you can do it! I realize children can be cruel, becasue of ignorance. I am so sorry you had such a hard time as a child, and I am trying to protect my son by such feelings by treating him the same as is other brother and sisters. a child with sb is no different then any other child. why not try going back to school? night school? I wish for you the best!

[chris8258]

hi Chris, I have tears in my heart and eyes! I have a 9 year old boy with sb! my message to you is its never too late to reach for the stars. The fact that you learned all you could about computers is proof that you can do it! I realize children can be cruel, becasue of ignorance. I am so sorry you had such a hard time as a child, and I am trying to protect my son by such feelings by treating him the same as is other brother and sisters. a child with sb is no different then any other child. why not try going back to school? night school? I wish for you the best!

I did fill out my FASHA and am waiting to hear back from them, but as of right now I just don't have the money to get into school. I do save money from time to time and take classes online but they don't count for a college education.

So my fingers are still crossed about school at this point.

[Bigwilli]

Hi Chris,

I'm proud to hear you took the time and taught yourself computers. Keep up with the school and don't let setbacks stop you. What are you wanting to study in school? I have had setbacks in my life when i was young (I'm 39 now) that I thought I would not recover. I look back now and think wow was I wrong! Your so young and the future can hold alot of promise if you go after what you truly want. Ditch the drugs and that alone can save you money. Turn your misfortunes into a passion, you can do it...

[Barb]

Thank you. I do homeschool my boys for those reasons (well and plenty of others) and most people act like I am harming him for not exposing him to the 'real life' that public schools offer. :eek: Thanks for sharing your experience

[KMkaggerud]

Hi Chris,

I am 38 yrs old. I also got teased as a young child. I also had my setback that I hated and at one time I to wanted to die from being different. But I had the suppport of my family to help me through it. I was also not treated in my immediate family any different then my older sibling.

But like Kali said she treats her child with SB the same as her other children. Bigwilli said said use what you have learned about computers and use that as an asset to get yourself working on something you like to do. You could also be a good role model for younger people with disabilities and people that have used drugs.

[chris8258]

Thank you everyone for your kind words. I'm still ticking. Things the past few months have been going a bit better. I started taking lexapro and it seems to have helped me a bit.

I still feel lost at times, but I can see some light at the end of the tunnel.

[hopeful]

Chris,
I have a 24 year old daughter I want her to read your story keep looking forward your life can help someone else and remember you are never alone.
My daughter keeps alot in she is just now dealing with it. I am thankful for you to be honest about what your going through it will not only help you but someone else think about that. Hopeful

[chris8258]

Chris,
I have a 24 year old daughter I want her to read your story keep looking forward your life can help someone else and remember you are never alone.
My daughter keeps alot in she is just now dealing with it. I am thankful for you to be honest about what your going through it will not only help you but someone else think about that. Hopeful

I kept it all in for so long it hit me like a truck all at once. I hope she can learn from what I have gone through. You can always shoot me an email at chris.lawrence30@gmail.com if you need anything.

[brennachu]

So, yeah, I just wanted to kinda follow up on this and ask, Chris, if you're doing ok now? That's so hard to read a story like that regardless of the disability. I'm a huge advocate of learning and growing, no matter how old you are. Hey, my boy (who has SB) has never had a proper job, but he's a brilliant musician and that's how he makes his money. A bit of busking and gigs in pubs. He's 33 now. One day he just woke up and said, "F*ck this. I'm done livin' like this." And now he's doin a bit of Polytech to be an sound engineer.

You've got the whole computer thing going for you. You must enjoy it or you wouldn't do it. Just do what you like to do and it'll pay off.

Thus sayith Brenda. http://therethere.net/rd2/Smileys/rd2/priest.gif

[angel]

I am so sorry to hear the stories about having such a hard time in school. Mine was different. I had a good time in elementary school and up to 7th grade. Eighth grade was a nightmare for me but taught me a lot about myself and what limits one has before they are just FINISHED. The teasing lasted for several months for me but finally came to an end for two reasons. First the one major player in the group that loved to give me shit finally crossed the line one day and slapped me right across the face. I was always mild and didn't try to fight back just avoid. At that moment something in me snapped and i balled up my fist and punched her right in the face. I didn't even know i did it until it was over. I guess i had reached my limit. I am not an advocate of fighting and am in no way telling anyone to do so this is just my story. After that she stopped completly (that and my sister told her if she ever bothered me again that her A$@ was grass). It was still enough after that i didn't want to be friends with any of them. I found out it was ok for me not to like them either. I was better off with no friends than people like that and it opened a whole new world to me. I was the one in charge I was the one who chose how i was going to be treated!!!!!! I got my power to take charge of my life.
I switched schools the next year because I basically hated everyone there now. I went to high school at another school (with my brand new attitude) and had the time of my life. Those who didn't like me fine they didn't like me but i didn't sweat it. The ones who did really did and that was the majority of the students. I would go thorugh high school 10 times over if i could because i truly had the best time of my life.
I had a new confidence and i noticed that the people around me treated me differently as well. I threw myself in the mix, even if i was scared to death i would be rejected i still did it and showed no fear (eventhough there was plenty of it) I figured if i didn't do that I had no chance at having the life i wanted. I made it my goal to find a way to get what i want. Everything i want out of life no matter how long it took or how hard it was. I had to change my view of myself before i was able to make any real changes in my life.

Angel

[eng188]

My name is Chris, I’m 30 years old born with spina bifida. I’m writing this in hopes that a parent will read this and find some use of it. I’m the perfect example of what you do not want your child with spina bifida to become. Now I’m not a bad person, I’m just not successful in life. It really is hard for me to say these things but I’m hoping that it helps me change my ways.

I'm cory, 32/m, T-2 incomplete myelo (or "cystica"?).


Anyways, the first thing that came back to bite me in the ass was public school. I’m not a fan of it for a number of reasons. First being the kids just never understood me, teased me, and just made my life at school a living hell. To this day it makes me sad. I wanted to learn, I wanted to learn everything I could get my hands on, but the kids just got to me too much. I would do home school in a heartbeat if I had a chance to do it over again, and so would my mom.


I went to four private schools in three states, due to moving around so much. Never went public, but I would have liked to give it a try. Public schools have more endowments, usually, and therefore have the potential to be better than private, even if their reputation isn't all that.

There was an interesting spot on CBS Sunday Morning just now about homeschooling. Some folks come out of it great, but others tend to lack social skills, and that's the last thing someone with spina bifida needs more of.


I made it to the tenth grade and dropped out hooked on drugs at 17 because the only people that would except me where the other losers in the school.

Losers and religious nuts. I hate feeling like I fit in to a group just because that group feels some "calling" to socialize with the "less fortunate".


We need a lot of help fitting in to the fast pace environment of grades 7 and up and the help just was not there, and to my knowledge it’s still not. For some reason we tend to be very smart, and I guess that is because we exercise our brains more than any other muscle in the body, and emotional issues can really cripple that.


I'm not sure SB's are particularly smart overall. In fact, many SB's are mentally disabled to an extent. But indeed, for some of us, our brains are strongest, but more because we tend to not exercise our bodies nearly enough.


The fact that I never had a good education made it impossible for me to pay for college, I also had zero interest to even go back to school until I was 24.


I had trouble making it academically in school. I had no drive for some reason. I tried too hard to fit in, even though in reality, SB's will always have a harder time than most fitting in. For me, I wish I had known/accepted that fact, and just gotten into my academics, and let the social life just be whatever it was going to be. I tried too hard to make certain friends, and too hard to get away from the "nerds".

I also hated homework, and know in retrospect that I invested way too much energy in avoiding it and lying about it. If I had just gone with the flow as far as that, I'd have learned a lot and been transformed into an adult nice and quickly.


So for the last 6 years I sat around and learned everything I could about computers. I read book after book after book. I learned a lot. I would build computers and sell them on ebay for extra cash,


Good on you! That's a start to something good.

but shhhh I can’t tell the government I made a little money or I will lose my health coverage. They allow me to make 60 dollars a month, more than that and it’s gone.

Gotta love it.


I’m sorry if this post comes off as a big poor me post, but I just needed to vent. Sometimes I wish life would just be over, and I don’t want any of your children to ever feel this way. Love them, protect them, fight for them, never leave their side. This world can be very cold, and unforgiving.

It surely can, especially when, to an extent, we NEED to be able to function with able-bodies as well as amongst ourselves.

I'm not entirely sure what to say. I suffered in high school as far as grades. Though I didn't know it at the time, I know my social skills sucked as well. Very nerdy, overly polite, tried too hard to be funny.

I wish I had done some extracurriculars, but I feared being bored and cast off as a nerd (which I already was). I wish I had interest in social things like football games (but I hated football and men's basketball), or community service, or dances or whatever. The thing is, I also didn't like the "popular" crowd too much, though I liked the idea of being more popular myself.

Life is what it is now. The best lives start from the get go. I wish my parents had supervised my academics differently and pushed me in a different sort of way. I wish the school had been my social epicenter, no matter what I did. Big schools can be good for that.

I also wish that, as a kid, I knew more about spina bifida, rather than just disability in general. I'd have known my limits better, and known how to get the most out of my particular life.

Yes, the world can be cold and unforgiving, as you state, but it's that way at times for everybody. Not just SB's or the disabled. It's hard to get motivated. I get scared of making mistakes or not knowing what to do or how to do it. As the cliche goes, many of we SB's have lots of potential. Unfortunately, sometimes we are misguided as to how to use it.

Good on you for getting out there and saying "Enough is enough" and just going in a promising direction (building computers) and seeing what became of it. It's unreasonable to demand our dream life, but at the very least, we can create good ones for ourselves.

[LisaJoy]

I did fill out my FASHA and am waiting to hear back from them, but as of right now I just don't have the money to get into school. I do save money from time to time and take classes online but they don't count for a college education.

So my fingers are still crossed about school at this point.

Chris -- online classes absolutely can count toward a degree! (although the specific ones you took might not) And you can earn an entire degree online, especially if it is a technology degree. My brother-in-law in Texas will finish an online degree from the University of North Texas this spring. Tennessee, where I live, has something called the Regents Online Degree Program, which offers several majors. The private online universities, like the University of Phoenix, can be expensive, but I bet your state schools or community colleges have something on offer. You should try emailing an admissions counselor at your nearest community college. Sorry for being preachy -- it is the college teacher coming out in me!

Lisa

[nanna]

Hi Chris, After reading your note i thought well done Chris! you are taking the first step to change your life! Many people find it hard to fit in and feel a misfit in school, you dont have to have SB for that. I know of many children over the years with SB who have gone to public school and fitted in. In some cases they have been the center of social groups with lots of friends, who have tried to help. However there are many people who find it difficult to find that special friend or fit into the crowd. Many are picked upon because of their look, clothes, hair, fat, thin, poor. What i'm getting at is maybe you might have been in a similiar position if you had not got SB.

I think its great you have learned yourself things on the computer, Keep on going there are some great jobs to be had in IT

Good Luck

[Summer25]

I know this is a little old, but thought I would share my school experience. I absolutely loved elementary school. I was mainstreamed 6 months after starting kindergarten. They wanted to hold me back after my first experience of kindergarten, but my mom refused and fought against it. I had great friends and almost always was found with the boys. Middle school was hard for me. While being in elementary school I really wasn't classified as being "special ed." In middle school I technically was. I had P.E. with the special ed class. So, that changed a lot for me. Right after starting 6th grade I got caught up in the wrong crowd and started dating an 8th grader. Yea, not the best decision of my life. It basically ruined my middle school career. I begged over and over to let me do home school. It also didn't help that I ended up having about 7 surgeries in a 3 month period, with a surgery 6 months before the 7 others in 7th grade and then getting mono while in the hospital I think I ended up going to school the last week of 7th grade and that was about it, but I did do homebound. I was lucky I didn't fail 6th and 7th grade. I never wanted to go to the school I went to because no one I knew was going there. I was made to go there due to them having a special ed. 8th grade I had the mitrofanoff and ACE done so that I could cath through my belly button and do my bowel stuff at home without accidents. It was my life saver. It gave me the independence I needed to go out and do things. I was lucky enough to get into what is called a "Magnet School," where along with learning the basics I got to shadow people in different perfessions and it was more oriented towards what we wanted to do in life or what we thought we wanted at that time. I wanted to teach special education, but later came to find out that just wasn't for me. The classes were fairly small and the same class basically followed you throughout your high school career until about 11th and 12th grade. However, by that time you were all close and never left each other's side anyways. I started choir in 10th grade and traveled around the state with the choir. I also went to Washington D.C. with them. So, we also were close. High school for me was the best 4 years of my life. I graduated on time even after I was told by a teacher that I wouldn't. I finished an A.A. degree in college about 2 years ago and had started a B.S. in special education when I found out I absolutely HATED it! I would come home and cry because I had no life. So, next semester I am starting an A.S. for something in the health field. Right now I am dealing with my best friend moving with her husband and little girl. We have known each other since our 9th grade year, so it has been hard not being able to just call her and go out with her and her little girl. Other then that I think my life hasn't been too bad, so far.

[jordan]

Chris i feel the same way im 12 yrs old and i am seriously at the point to where im asking my mom if i could be home school i am so tired of them messing with me and how i was made everybody has a disibility just in all kinds of ways even though we just moved to maryland a couple months ago i reallly dont ,eave the house and my parents want me to have all the friends i could get so hopefully they stilll say yea

[lisawalker23]

dont be sad boy! u got ur whole life ahead of you

[naomi6896]

My name is Chris, I’m 30 years old born with spina bifida. I’m writing this in hopes that a parent will read this and find some use of it. I’m the perfect example of what you do not want your child with spina bifida to become. Now I’m not a bad person, I’m just not successful in life. It really is hard for me to say these things but I’m hoping that it helps me change my ways.

Anyways, the first thing that came back to bite me in the ass was public school. I’m not a fan of it for a number of reasons. First being the kids just never understood me, teased me, and just made my life at school a living hell. To this day it makes me sad. I wanted to learn, I wanted to learn everything I could get my hands on, but the kids just got to me too much. I would do home school in a heartbeat if I had a chance to do it over again, and so would my mom.

I made it to the tenth grade and dropped out hooked on drugs at 17 because the only people that would except me where the other losers in the school. We need a lot of help fitting in to the fast pace environment of grades 7 and up and the help just was not there, and to my knowledge it’s still not. For some reason we tend to be very smart, and I guess that is because we exercise our brains more than any other muscle in the body, and emotional issues can really cripple that.

The fact that I never had a good education made it impossible for me to pay for college, I also had zero interest to even go back to school until I was 24. So for the last 6 years I sat around and learned everything I could about computers. I read book after book after book. I learned a lot. I would build computers and sell them on ebay for extra cash, but shhhh I can’t tell the government I made a little money or I will lose my health coverage. They allow me to make 60 dollars a month, more than that and it’s gone.

I’m sorry if this post comes off as a big poor me post, but I just needed to vent. Sometimes I wish life would just be over, and I don’t want any of your children to ever feel this way. Love them, protect them, fight for them, never leave their side. This world can be very cold, and unforgiving.

Hi Chris,
thanks for your honesty it is quite refreshing my son is twelve and he gets depressed but we treat him no different than my daughter who is older than him and he gets a bit mad but we tell him look you will not get a job unless you go to college and he had an appointment (I work at the hospital) and he spent the day with me and saw what I do and he is quite excited about learning.................I worry that he will feel as though he doesn't fit in with the other kids but he is in a regular public school and some days are better than others thanks for your info...............I worry about what his life will end up like I hope no matter what that he like you finds something he likes to do and can make a living from it........... Thanks!!!!

[katiewags]

Hi Chris,
I have SB too. I'm 53. I did graduate high school but that was as far as I went. I hated being around people. No-one ever said anything to my face but I always heard the snickers and people were always stareing. I think I only made it through high school because of my family. I have 3 sisters and a brother and my parents made me do everything they did. I do thank them for that because if they hadn't I wouldn't be out on my own today. I didn't actually go out to work until about 10 years ago. Until then I stayed home and took care of kids. I did daycare and foster care. I love kids. I've never been married but I always wanted kids so I managed to adopt a son. I got him when he was 3 days old and he is almost 17 now.
I was a part time teaching assistant for 4 years then social security said I had to cut back on my hours or lose my some of my money and my insurance. Since I was already part time they were unwilling to cut my hours more so I had to quit. Now I'm working 2 days a week at a real estate office as receptionist and it sure is boring.
I feel like the government wants you to do better for yourself but when you try they cut you off. Most businesses don't have insurance that pays for the things that are needed by someone with SB and if they do its too expensive so how do you get ahead?
Anyway, I think its great that you know so much about computers. I heard there are organizations that help people with disiblities go to college. Maybe you should check with a college near you.
You're young, I know you can do it. Good luck
Katie

[garry]

hello chris. i am 24 male from india. i have recently completed my engineering in electronics. it was a very hard journey. my father is an arrogant person. he even used to beat me and once broke my arm. i am in wheelchair since my second surgery at the age of 11 to detether my cord. now i developed a neurogenic bladder and was in severe shock to know that the damage was permanent and i would have to cath the rest of my life. my general health depleted a lot due to bad care and mental depression. but my willpower and hardships didnt let me down. i am recovering , mentally atleast. i used to get bad dreams. And u know, there is no free medical care and financial support for disabled people in india. abled people live tough and u have to live tougher , just to keep breathing. in this struggle i lost my bladder within past 8 months. i knew i needed medical help, but i had to delay it becoz of my college. if i engaged my self with the hospital, i would have to abandon my engineering. So i tell u make the most of your circumstances and enjoy being an American.

[LisaJoy]

Garry,

Welcome -- we are glad to have someone from India participating with us. We are quite the global forum these days!

Lisa

[garry]

Garry,

Welcome -- we are glad to have someone from India participating with us. We are quite the global forum these days!

Lisa

hello lisa,
thanks for welcoming me. howz life going on?

have a lovely day

garry.

[chris8258]

Just a quick update. I have been doing a lot better this past year. I went even deeper into computers and got some certifications and the money is flowing in now.

I still have to hide my money from the government, and that sucks. All in all things seem to be picking up and I'm now getting better at dealing with my spina bifida. I still can't believe it has taken me this long to accept it. I'm 32 now. One day at a time.

[LisaJoy]

Hi, Chris! It's good to see you back on here. Glad things are going well for you.

[Gymp]

Good on you Chris,I wondered what became of you.

Life sure can be a challenge.

Gymp