United Brachial Plexus Network, Inc.

I am having a hard time dealing with a lot of life situations I have a family, (and this isn't over exaggerating) taht don't give a damn about me a nd my injury even though I have tried for years to seek out there love and understanding .All I seem to get is .........well......nothing I absolutely get nothing from them And I fell I need to talk to some one or my head will explode ...I don' t know why it is so hard for a parent to sypathize with their child especially when the child has done all the legwork and discovery when it came to there injury ....I want to know if there are more of you like me ? and please DOnt ignore this post I am outreaching to the only people that could possibly understand me .....Thank you Anthony

Anthony

I know how hard it is when we first find all the information on our injury. I went through a bit of a hard time. At first I cried when I began to read the General Board... I could not get through a page without crying for the babies... Then I cried for myself and realized how closed off I was to information I should have had but had no way of getting. Then I cried for my parents at how confused they must have been and the feelings of guilt that they must have had... Then I began to heal and realize I have always been more than my arm. I felt relieved that I could come to the message boards and one by one OBPI/adults began appearing. I was not alone for the first time in 60 years I could talk about it.

My parents died while I was very young and my sibling do not want to hear or talk about it. I am lucky my husband and to some extent my children are interested (the kids have no choice... LOL..) my close friends some are very interested and all of them are so happy that I found UBPN and learned so much...
Your family is not that unusual... When a child is injured the family is injured also. It changes the family and sometimes sibling never get over the loss of attention that they feel the obpi child took from them.

If you are feeling sad it is probably because you understand more about this injury and want to share all you discovered and they are not ready to hear it yet... Give them time...

I am so glad you posted you need support right now and you will get it here...

Anthony,
I am so glad you are coming to camp because it will be good for you to meet others with the injury and we can all just talk, more easily than posting.

Please know we all understand and while each of our experiences is probably a little different, I'm sure that every one of us has experienced some sort of indifference from others to our injury. Because our injuries are not life threatening, others just don't realize the difficulties we all face on a day to day basis.

We are here for you.

Nancy

Anthony

I know how hard it is when we first find all the information on our injury. I went through a bit of a hard time. At first I cried when I began to read the General Board... I could not get through a page without crying for the babies... Then I cried for myself and realized how closed off I was to information I should have had but had no way of getting. Then I cried for my parents at how confused they must have been and the feelings of guilt that they must have had... Then I began to heal and realize I have always been more than my arm. I felt relieved that I could come to the message boards and one by one OBPI/adults began appearing. I was not alone for the first time in 60 years I could talk about it.

My parents died while I was very young and my siblings do not want to hear or talk about it. I am lucky my husband and to some extent my children are interested (the kids have no choice... LOL..) my close friends some are very interested and all of them are so happy that I found UBPN and learned so much...
Your family is not that unusual... When a child is injured the family is injured also. It changes the family and sometimes siblings never get over the loss of attention that they feel the obpi child took from them.

If you are feeling sad it is probably because you understand more about this injury and want to share all you discovered and they are not ready to hear it yet... Give them time...

I am so glad you posted you need support right now and you will get it here...

If you have close friends share the information with them. I shared some information with someone who is not a close friend and she had me giving a speech on ways to prevent this injury. You never know until you open up and feel comfortable talking about it who will be the most supportive. It is not always family I think that they just don't know what to say. They may feel that they have always supported you and you should know that in your heart ... that they really care.

we care here... and we understand
Kath

Its tough being alone or felling alone with a disibility in 1951 there was no help for ERBS just live with it! thats what I was told when I was a Kid I was called stud arm.my mom tryed to get me help till I was about 12 and then every thing stoped my parent got seperated and my dad didnt pay child support so my mom had to work to take care of three kids she had no time for us I had to grow up fast forget the ERbs.By 16 I was working to pay for food and things for my self we lived in 2 rooms.what did this teach me self relince determiation to overcome things and compation for others like you seek your own happyness and try to forget things that disapoint you it does no good.just remember you are not alone here all you have to is ask and the support is here! Tom

Anthony:

Hey, I am a 31 OBPI. I have been so excited about this website & finding all of you, but my family do not get as happy as I'd like them too. My husband is because he asked me everyday how are my new friends on the website.

My mom & dad live next door to me. They don't want me to get my hopes up on anything (too late!) Anytime you need to talk to someone, please email me. I agree with Nancy that we all (children too) different, but we are all connected.

Please take care & jst remember we are all in this together!

Deanna

Hello Anthony!! Hang in there!! All these responses were great to hear for myself as well. My parents were the same way. It's not that they don't care, I think its they didn't know at the time what to do for it or for that matter how to deal with a child who has it. I had this hanging limp arm and thats just how it was. They had 5 kids, I was the oldest and no money to help out even if they could. There comes a point in our lives where we just need to face the facts about who we are and who we want to become as we grow older. I had to listen to "How come you weren't as good in sports like your brothers or your sisters?" (I had twin brothers and twin sisters!) It wasn't a matter of if I was good at them or not. I couldn't do them!!! The frustration still sets it on me. Thats why this site is so great for people like you and I and all the others out there. WE TOGETHER will listen and TOGETHER we will help one another*S*. So keep your chin up!! E mail me if you'd like to!!
Hang in there! We'll all get through this...
Rachel

Anthony
my heart goes out to you - I wish that I could take away your hurt and make you feel better.If you were my son, I would be so proud of you for finding out about your condition and wanting to learn as much as you can.
Sometimes parents don't get it right. I have two children and one has obpi he's almost 12 and my elder boy has a communication and learning disability.
For a long time I was unable to help my elder boy to access all the therapies etc that he could, and that was because I felt such tremendous guilt about his difficulties - I felt sure they were my fault- that I had given these conditions to him, I probably seemed as though I didn't care about his needs - but I was so wracked with guilt that I couldn't cope with them.
I don't know, but maybe your family feels a little like this too.
You have good friends on this board, who understand how you feel about your arm - I hope that one day your family will be able to offer you the same support as your friends.
Enjoy your time at Camp - I am sure you will make lifelong friends there.
Here in the Uk we have a saying -
" you can choose your friends, but you can't choose your family"
It's very true - as you get older you will be able to surround yourself with people of your choosing - I wish you well.

First of all you are not alone.For some reason family will hurt without realizing it.I'm 50 with left and right erbs.My mother took me to doctors and I had surgeries but not alot of compassion.My parents were told to not show me any sympathy because it 2ould make me weak.Of course the whole family was told the same thing.They do love me but they don't understand like these peop[le do.My husband is great but he can't understand everything but he does try.Remember when you are upset about haaving erbs log on here because you have alot of new friends.Andrea53

Andrea

I think that the doctors felt that if they gave us too much pampering or sympathy we might never be able to fend for ourselves.
I know my family was not allowed to give me sympathy nor to help me... I think its like tough love to help us become more persistent and to learn not to give up. I wonder if we were given too much sympathy and over pampered how would we cope with the real world...

Our family lived with us so long I don't think they notice that we are different and feel we are use to it. They really can't understand how it feels because they are not bpi and do not have restriction on their every movement.

Kath