United Brachial Plexus Network, Inc.

I have been dealing with my BPI for the last 21 years and I am growing weary. I was even considering the costly and painful procedure of limb-lenghtening, but for practical reasons I cannot. My mom says now she wishes that we had taken legal action but back when I was born people didn't sue other people at the drop of a hat and the lawyer I contacted says he can't help me because it happened so long ago. So now I am forced to the realization that I am just going to have to continue living with this thing that makes me feel different. I don't think the people around me really understand, they tell me how lucky I am because it could have been so much worse and I am very grateful that I have at least an almost normal life but they don't know how much I hate my arm sometimes. I love the idea of becoming a bellydancer but everytime I go to the classes and I see myself in the mirror, everyone else has their arms up above their heads doing beautiful hand movements and there I am feeling like I look like an idiot. Now I am afraid to go back to class for fear of looking stupid. Its just so hard living somewhere between the world of ability and disability, I don't really belong to either half. I know that I should be thankful for what I can do, not for what I can't but I just feel so defeated, like there is nothing I can do but wave a white flag. This message board, I know, will be of great help to me because I have always felt like the only person in the world who feels like this and now I know that I don't have to feel that way anymore

I know exactly how you feel. My parents did not sue our physician because like you said that was not the thing to do back than, and they did not believe in it. Now I wish they would have because the doctors negligence back then has caused a major life change for me in all aspects of my life-sports, physical appearance, self-esteem. Also now that there are physicians that are performing surgeries and treatments, the financial responsibility is up to me if I decide to pursue this avenue, and it should be the physcian responsibilty who delivered me 31 yrs ago, and so it gets very frustrating.
I also can relate to you with regards to facing mirrors in a class. I would always stay in the back row of aerobics class because of how self conscious I was about my arm.
As far as encouragment the thing that keeps my head up is my faith in Christ, but also knowing that my life could have been much worse. I work in a doctors office, and I see patients come in with some of the worst symptoms and disabilities that it makes our disabilty look good. It is no fun to live with it, but just know that you are loved by your friends and family because of who you are-not what you look like. Whatever your dream-keep striving to achieve it.

Shandra,

I just wanted to say thank you so very much for sharing your personal feelings with us. This journey is not easy and I am so saddened that anyone has to endure this. This injury does take so much away, and choices and opportunities that should have been made available to you were taken away by somebody else. The hurt and loss most be overwhelming at times.

I will hope and pray that in the years to come that you will find new hopes and dreams to embrace. This experience has made you a strong, wise and compassionate person, more than you probably realize. You have MUCH to offer to this world! Someday you will realize that there are many dreams out there for you and that you can put the pieces of your life back together. Someday you will come to recognize all that you have to give and share with others. As for now, vent and experience your loss, sadness, and frustration because it is what you are feeling. It is all a process and a journey, and we are all in it together. Please know we are here.

Thanks again for posting and sharing a piece of your heart with us. I found it very touching.

Take Care

Hello, Sandra
My name is Kimberly, I am 32 years old and I completely understand the insecurity you have been dealing with all your life because I have also.. My mother told me that the doctors didnt have a name for it. and all they told her was to try and get me to use my arms as much a possible.. What are you limitations? I know we should be thankful that we are alive and we dont want to be perfect by no means. I just want to look normal... and not feel like everyone is staring at me.. I pretty much have full use of my arms except I can't straighten them, it is as if there is a lock on my elbow that wont allow my arm to go straight... I would love to hear from you... Take care..

I was born in 1971. I am a right obpi and I have always dreamed that one day I will get rid of this injury. But due to my family problems and a very very bad father I got older with sadness and had many problems. I have always tried to hide my arm and been wawy from people. Still trying. I sometimes try to be happy but this lasts very short. I have a wife and 2 children but it is really a difficult thing to succeed in doing somethings for my life.
Anymore after the age 33 now I gave up dreaming long time ago and trying to live. Not everybody's story is the same. Some of you are lucky some are not.

But life is a struggle and we have to fight to survive even though we know that we can't win.

Dear hopeless,
I am praying for you. Acceptance of ourselves is a tough thing ,I know. It is what is on the inside that counts.Everyone who is challenged in some way has the stuff to make it and I know you will too.If you keep reading thru ALL forums and topics alot of your hopelessness will disapate. You now have our prayers and support, so please keep in touch.
Carolyn J
LOBPI and 66 yrs old

Thank you Carolyn J.
I am reading the forum and try to be happy with the good news from other obpi people.
Bye

I know I used to dream of being rid of my injury. I hid it, and hid it well. Nobody knew. I have really learned alot in the last few months. One of those things I learned was to accept my arm as part of what makes me me. I have learned that I have nothing to hide. Why be ashamed because a Dr 36 years ago made a mistake? I have learned to be proud of myself. Of how I can get along, take care of husband, our 5 children, and myself without help.

I have learned that being disabled is nothing to be ashamed of. I have also learned that I need to tell people. There are so many of us with BPI and we all feel isolated cause we don't talk, so we don't realize that there are soooo many out there dealing with the same issues.

After my surgery April 15, I was shocked by the attention my splint brought. I really didn't like it. But then I realized it was my time to get the message out there. So everytime someone asked what did I do to my arm I told them "I did nothing. A Dr 36 years ago injured my shoulder. And finally another Dr came along and has given me my arm for the first time in my life." I told them what the injury is called. How it happened, how often it occurs. Everything I knew I told.

I had to repeat this story alot, but those in those weeks with the splint, I informed hundreds of people who had never heard of Erbs Palsy or BPI of it. And maybe, somewhere, someone, will say "Hey, I have that, or my relative or friend has that!" and they will learn through it, that there are others out there, and there is hope for all of us.

We should be proud of ourselves. We have all survived with one working arm, and thrived. Get out there, be proud, and tell, tell, tell. It is the only way to get this injury out of the closet.