United Brachial Plexus Network, Inc.

Remember this injury is a result of birth mostly because of the doctors so they aren't too forth coming with information especially when they want to hide it. In those days it was easier because you couldn't access information like you can now.

I appreciate all of your responses. Its been three days since I ahd "The Big Talk " with my parents.
I always have a feeling even though they have not done anything in the past, maybe they will get involved now.
I am having a real big problem dealing with life by myself I am mostly a people person or a social butterfly.Lately I feel like a person locked in a closet with no one to go to... I have friend but they really dont know what to say or do and I don't want to rely on them for my comfor I feel thats why you have a family. But mine is very dysfunctional and I always try to help them out with whatever they need and now I am realizing the favor is never returned....I had this big argument with my parents about maybe some help getting me a new car,Only because my car I have is about 10 years old and I have owned it for 7 (which I bought myself)and its starting to go out on me no matter what repairs I do to it. I need the car so I can attend school for ultrasound in tampa which is about 45miles away from me its the only school next to me that offers that course ,and I dont want a car to stop me from my future. well I asked and they said No...Its not like they don't have the money, they have property everywhere and they live very well for themselves. The sad thing is I know they have helped out other siblings with the same kind of problems,some needing money to put down on a house. I told them after they said no (again )Is when are you all going to treat me like your kid and start acting like parents.There motto is they weren't treated very well as children so why should they go over and beyond for me (God I thought that was a dumb thing to say ,I always thought you should want better for your children!)I told them One of those houses they owned could of very well payed for some treatment on me and I can't believe that they are just going to throw this all on me. (am I wrong is this a way to make me stronger,I know I don't use this as a crutch and I still keep very busy trying to live a life I just wanted a little help)

I told them I forgive them for there ignorance about my injury when I was a kid..Maybe they didn't know waht to do maybe they really thought it was just going to go away..but no that they know I think they should have no exuse about getting involved.
My dad has diabetes and high blood pressure and I went to the doctor with him and some classes (even my brothers and sisters didn't go)just top give him some support and help him understand.Why can they not return the favor they never ask me how I am and they Boldly refuse to go to the doctors I have sceduled for myself..
Even when I saw the doctor in miami and he said he could help me out but the first operation will be $50,000 they told me they didn't ahve the money (and they still insist nothing can be done for me)but just recently they bought property in Vermont for a couple thousand ,How am I suppose to feel about that
Well My arms are cramping up pretty bad and I can't type anymore so Im sorry for all this but I had to breath to somebody!


Thank you everybody who posted.I hope I don't scare you all away from writing all this, your the family I need right now
THANKS Anthony

Anthony

I am glad you have a place to vent your frustration.

We are here for you

Kath

Sometimes I wish I can turn to my siblings ,but mostly they do not want me to even bring up my injury, let alone defend or support me. most of them say at least Im not in a wheelchair(which makes me feel bad ,Like maybe Im making this out to be more than it is) But then I say I would like them to walk in my shoes for one week and see how they would cope..Its sad that I have to report that my family is the least bit sensitive,and I hate that its probably going to lead me to therapy. I just can't understand in my head why parents would just sweep this under the carpet like its not important. Can't they see the importance in my eyes or my voice why would I have said anything for as many years as I can remember and why when I was younger did they not even realize the problem .Did they choose to put a blind eye to it ,did they think its not a problem at all?

The more I write the more I realize I am fighting a battle without a win.A lightbulb will never go off and I will be left to sort this out for eternity.

What gets me angry is that they are confusing my need for support with pity,They think I want pity!

Last New years I got into a "fit" my whole left side locked up and my back and my legs went along with.
As I go into one of the bedrooms in my parents house
to laydown and suffer for a while, my siblings had to just come in the room and torment me. saying things like "I am doing this for attention", or if they ruffed me up I would feel better. my one brother Sal who isn't always the best one to get along with saw I was in pain and tried to find ways to soothe me.WHile looking for a heating pad with no luck,he got a clothes iron and a towel put it on my left shoulder and ironed my shoulder till I felt better(that was very nice) but to say after all that happened my parents never came into the room to see what was going on and not even to ask if I was ok .....

Is it wrong that I hold these things against them should I let it go, am I being to angry for my own good..Cause all I can think about is if I had my own child, would they want me to do the same as that has been done to me .I would like to think not.

Well getting back to the sibling reliance,That area has been explored with no luck...
They all seem to have the same mentality as my parents(some more than others)and I clearly know that if they brought it up to my parents they feel they might lose their "mealticket" from them. so bringing it up will only bring on confrontation. they must feel its better to argue than to actually do something and maybe make a difference and help me change my image of them.

I always hope I am not scaring you all off ,I just hope I can vent as much as I do without you all getting a bad perception of me,I guess you can clearly see that I must trust YOU ALL enough for me to write all this.
Thank You All
Anthony

My husband had a similar problems with his family. I don't understand it but it does happen. Hopefully you will meet someone and find happiness from her and her family. I like to think I was able to give my husband a better life than he had growing up. Learn from them and treat your own kids better. I feel for you and wish I could give you some way of making things better but it seems I can't. We are all here to listen and let you get your feelings out which is way better than letting them bottle up inside you so go for it and let all your feelings out. We don't judge people here we have all had our down times and have sort and received support when we have needed it.I truly don't understand how people can treat their children as you describe. Keep on with your studies and show them how it should be done with your own kids. GOOD LUCK.
Lyn

Hi Anthony (lucid707),
There was a lot of frustration over the subject of “me” in my household and I think it did more damage than good to the quality of person that I am. I lived at home in New York until I was 41 years old and my parents moved out of the house before I did. The reason that I finally did move was because I had to… they sold the house. To most people this must sound very amusing and they think it’s an invitation to pooh-pooh me, but with graduating with honors and making the dean’s list in college, I still have found it very difficult to find and keep a job. I always felt that my parents and sibs didn’t understand how difficult it is for me, but I have to admit that I played a very real part in all that frustration (even though I may have been “right” about some things). Why do I say all this? Well… you say they don’t care about you but you didn’t discuss any of there grievances. What’s eating them? Don’t seek out their love; instead, seek to understand their upset and maybe meet them half way. I’m not saying that they don’t love you. Their angst is a sign that they do care very much. I’m saying deal with the real problems as best you can. Do they say things to you like “you apologize too much”? Do they yell at you that you should get out of the house more? Do they say “while your in our house you will follow our rules”? Do they say that you don"t listen? Understanding what upsets them may help you to adjust (to erbs). I’m taking your side here. The best way to resolve these problems is to start thinking about taking care of yourself because when you complain that they don’t understand, I think it sounds like you want them to fix it all for you. They can’t. From what you’ve written, I get the impression that you are more up on your condition then they ever will be. Should they have offered to pay for the surgery rather than buy that piece of real estate? I don’t really know the whole situation so I can’t say, but you might be able to find funding for the surgery if they can’t help with it. Check with various government organizations for people with disabilities to find out about jobs, training opportunities and possible funding for an operation. I’d be happy to share ideas with you about growing up with BPP. My e-mail is cdiamondstein@yahoo.com my website is http://www.erbs-brachial-plexus-palsy.4t.com and my yahoo group (with lots of links) is http://groups.yahoo.com/group/ERBSBPP. You have to get a yahoo e-mail address in order to access the group (it’s free). Well good luck with everything. P.S. Don’t explode – it wont help.

Hi Anthony (lucid707),
There was a lot of frustration over the subject of “me” in my household and I think it did more damage than good to the quality of person that I am. I lived at home in New York until I was 41 years old and my parents moved out of the house before I did. The reason that I finally did move was because I had to… they sold the house. To most people this must sound very amusing and they think it’s an invitation to pooh-pooh me, but with graduating with honors and making the dean’s list in college, I still have found it very difficult to find and keep a job. I always felt that my parents and sibs didn’t understand how difficult it is for me, but I have to admit that I played a very real part in all that frustration (even though I may have been “right” about some things). Why do I say all this? Well… you say they don’t care about you but you didn’t discuss any of there grievances. What’s eating them? Don’t seek out their love; instead, seek to understand their upset and maybe meet them half way. I’m not saying that they don’t love you. Their angst is a sign that they do care very much. I’m saying deal with the real problems as best you can. Do they say things to you like “you apologize too much”? Do they yell at you that you should get out of the house more? Do they say “while your in our house you will follow our rules”? Do they say that you don't listen? Understanding what upsets them may help you to adjust (to erbs). I’m taking your side here. The best way to resolve these problems is to start thinking about taking care of yourself because when you complain that they don’t understand, I think it sounds like you want them to fix it all for you. They can’t. From what you’ve written, I get the impression that you are more up on your condition then they ever will be. Should they have offered to pay for the surgery rather than buy that piece of real estate? I don’t really know the whole situation so I can’t say, but you might be able to find funding for the surgery if they can’t help with it. Check with various government organizations for people with disabilities to find out about jobs, training opportunities and possible funding for an operation. I’d be happy to share ideas with you about growing up with BPP. My e-mail is cdiamondstein@yahoo.com my website is http://www.erbs-brachial-plexus-palsy.4t.com and my yahoo group (with lots of links) is http://groups.yahoo.com/group/ERBSBPP. You have to get a yahoo e-mail address in order to access the group (it’s free). Well good luck with everything. P.S. Don’t explode – it wont help.

Dear Anthony,
I just found this site last week. I am the mother of 3 with the 3rd born 19 years ago LOBPI. However, that's beside the point.

50 years ago I was born into a family sounding similar to yours. My crime was I was born female. I also had an older brother injured at birth with mild C.P. and learning disabilities.

When I was 18, one week after H.S. graduation I moved out. I had no money and no car, but did have a job. Back then in 1971 the wonderful landlady (furnished one bedroom apt)waited until my first paycheck for the first rent payment. I truly believe she was heaven sent. Within a few short months I brought my 24 year old brother in to live with me. I bought a roll away bed and we rolled it down the street and carried up the stairs to my apt. He slept in my living room. I didn't have a TV. And little by little I bought the cheapest dishes, linens etc. I could find.

I became my brothers keeper, even though we had 3 other brothers and both parents. They were all takers and never did give. I have written them off. All the better for it. Oh, by the way, my brother didn't live with me forever. He was able to get a regular job in a factory within 6 months. Before I moved away, he moved into another home with a family that had a grown son similar to him. In 1983 while pregnant with my 3rd daughter (had 2 & 1 year old also) I helped my brother get his first apartment, when he was 35. My brother was born in 1947 and not educated, because the laws were not yet in place to do so. SAD He does not read, but is exceptional with money, math and counting. He could drive, but does not.

Fortunately I was born A.O.K. and treat my daughters, now 19, 20 & 22, differently than what I and my brother got. Because of everything I learned from my older brother I knew to fight the system for my daughter. However, all along the way I prayed for wisdom, to do the right thing, and then for strength, to carry it out. I guess it worked. Blessings to you too.

Do you have any agencies in your area that can help? In my county there is something called Futures Unlimited. They are a sheltered workshop that help people with physical disabilities, as well as otherwise. (Locally many people think they only help the severely learning disabled, but not true) When possible they help find work and education in the outside world, to fit your qualifications. This place helped my brother get his job in that factory all those years ago, in 1972. Right now they are also sponsoring training to the public for Union Construction Jobs, for kids that have trouble in school, etc.

For a couple of months, in 1997, I worked Social Service for a Nursing Home. A 40 year old Gentleman Resident, asked for my assistance because he was going crazy vegetating there at the nursing home with his newly diagnosed M.S. He had a perfectly functioning brain and wanted to use it, it was only his body that started to fail. I called up Futures Unlimited and now he gets out of that Nursing Home every day. The head nurse argued with me and told me the place (Futures Unlimited) was only for "Retarded" I knew better, and lost my job over it. I never regretted getting that man out and about. The Futures bus picks him up at the nursing home. It was worth loosing my job. Good Luck. Angela