United Brachial Plexus Network, Inc.

Really I only was made fun of for my arm one time that bothered me. I was in fourth grade and a kid in my class called me a one armed freak. I still hate that kid to this day! There are other little things my friend say buy they dont mean any thing by it. Most of the time it is just because they forget that I even have an injury. Thats my experience.
Amy

Hi everybody, I had to search all my papers for notes about my password. I found it..
Guess that will teach me not to be a lurker. When you talk about gym class, I had to chucke. I remember not being able to do the exercises, back bends and what not, so for my exam the teacher had me crawl. Of course I laughed as everyone else did. I failed. I could not believe it. So all you mothers out there, if your child has problems crawling, just chalk it up to erbs. I don't remember being teased or being called names, (except skinny), but then I didn't realize I had a problem until 7th grade (that dreaded gym class) I was told I had to have a doctor's excuse if I could not participate in certain activities. That's when I realized that something was wrong and I was not just right hand/arm dominate. I never did get a note, but my dad went to school and I never heard anymore about it. That's when I had to crawl. I must have crawled same arm and leg at the same time, and not opposite. My friends and I had a good laugh. Didn't bother me a bit. Except I didn't get a good grade for that test.

Since finding this board and the "like bodied people" I realize (after many trials and errors) that my erbs arm doesn't always receive the correct info from my brain or it receives it too late. I just kind of relate it to the body boundry thing that Kath made me laugh at. The arm does not know there is a doorway between rooms, and that when people walk by you they tend to "get in your space".

I didn't have red hair and freckles and didn't wear glasses or braces, so I guess I must have looked normal lol lol lol. My friends must have been "pretty cool" cause I never remember having a problem.

As for putting a coat on or getting dressed, it's a bummer if you forget to put the erbs arm in first I can't imagine having both arms with erbs,guess I would probably wear a cape. lol lol

And at this stage of my life, I think my erbs arm is the least of my problems. After finding out that so many other complications arise from the injury (which if far more reaching than just the arm and hand) I would gladly just deal with erbs.

Again, I'm glad to see so many new posters.
Sharon

Bumping Up for cristina

Carolyn J

My arm isn't extremely noticeable, unless you ask me to do a specific task with my right arm. However, if I have my left hand full, and I need to take something with my right hand, it's pretty obvious. Kids at school called me "gimp," and one person even used to say, "Heil Hitler" and raise his arm when I passed. It didn't even make any sense. I suppose it was because I can't solute or heil Hitler (though why would anyone want to even say that?)... I had a hard time in high school coping with drama classes (we did physical exercises) and PE classes. They made us do push-up tests, and my teachers were not understanding. They seemed to think it was something I made up.
I thought I had grown immune to jokes about my arm, but I actually broke down and cried once last year. I was at a party, and over the loud music, I was trying to explain that someone was a pitcher. For some reason, I air-pitched with my right arm, which I'm sure looked awkward. My roommate at the time did an exaggerated imitation (while grunting), and poked fun of me for it. The worst part was that other people laughed along. I stayed for a few moments longer to make it seem like it wasn't a big deal... but I left soon afterward and cried my little heart out.
It's something I have lived and dealt with my whole life, but it still hurts when someone tries to make you feel like you are different or disabled.

WELCOME, MaureenK!!

I am glad you found UBPN. Please email Nancy your mailing address at nancy@ubpn.org and get on the mailing list for our OUTREACH magazine (free)that comes out 3 times a year with great sharing and information.If you want she can send you back issues if you want

I don't know but if I were you I would get a new roommate.She is not a friend who would be that cruel. Print out this Topic thread and tape it to the Bathroom mirror. She needs to apologize to you.

Carolyn J
LOBPI/ age 69


Message was edited by: Carolyn J

Luckily, I was never teased as a child or teenager, but that didn't stop me from feeling like a freak. I HATED PE and wished that I could just do a push up or hand stand. My PE teachers for the most part were helpful and I do recall my PE teacher from the 7th grade tried teaching me how to hit and catch a ball in soft ball tell me that there was a one armed major leaguer who did it, but it was just never that easy. I always felt the eyes of people, who were too polite to say anything, I guess. I learned how to hide it, the best anyone can hide it, but I was miserable. I felt like a monster. Never thought I would date, after all, who wants a girl with a "bad arm" right? But I think with time and age, I got use to it and am now even somewhat comfortable with it. I never discussed my arm with any of my friends, but they haven't asked either. Somewhere along the way, I got confident and I don't think about it that much anymore. My boyfriend of 2 years refers to it as my "sweet arm, b/c it's so sweet." (His words, not mine) At first, it bothered me b/c I didn't like the attention, but now, I like it. He's comfortable with it and me, which is all I ever wanted.

I think the fact that we all have this condition (?) means that we have some type of insecurity b/c when you're a kid, you want to be just like everyone else. Oh well, such is life, or mine anyways! But now, I like being me, which took alot of tears and cursing to get me to say that, but I do.

So, I guess my nickname is sweet arm. Corny, but it's all I got!

Elissa:)
Everything we adults with Erb's/OBPI's have shared similar experiences. I know there is a long Topic Thread from 2006 or 2007. I'll try to bump it up for you.

Also, some spouses/significant others have only "gotten it" after attending a Camp. unfortunately in my experience, it was "An Elephant in the Room" as Kath put it last week.

How wonderful it is to be Validated when I found UBPN in 2004 at age 65, and I can openly share now about my wonderful new Family at UBPN. My son, age 36, "got it" at Camp this year.

Carolyn J
LOBPI/69


Message was edited by: Carolyn J

Welcome
Maureen and Elissa

I am glad that you found us. Now your journey begins and don't be surprised at how many tears you will shed as you read other peoples stories.

What will amaze you the most is how much we have in common.
I can hide my arm because it just hangs due to the nature of my injury and the way it healed.
If I move my arm then you can see how strange it is.

I never spoke about my arm until I found UBPN 9 years ago.
Now you can't shut me up when it come to Awareness and Prevention.
My friends never really talked about it and some did not notice until their Mother's asked them.
I had some answers but we all thought I had a rare injury.
Now they have read my materials and Outreach on bpi and are so supportive and interested.

I actually when through the steps of grieving my losses and celebrating my gains from this injury.
I realized I was going through the grief process when I was almost finished with it.

Please ask any questions you have.
There are no silly questions when it comes to our injury.
We all understand here and have had some great conversations on things we thought were silly questions.

I look forward to reading more of your posts.

Kath adult/robpi
Member UBPN Board of Directors

Carolyn, I am trying to figure out a way to explain my injury to people. I would love to hear any suggestions for helping people “get it”. For better or worse, our injuries can be used as a way to differentiate us from everyone else. It would be great to have an “elevator pitch”.

Also, Kath, you, mentioned grieving losses and celebrating gains from your injury. It seems that you have a very sophisticated view of your injury. If it’s not too personal, could you tell more about your grief process?

Dear "tommygun",
First, Welcome to our UBPN Message Boards. You are welcome on ALL of them and please feel free to ask questions, THERE ARE NO DUMB QUESTIONS HERE.

For Starters, people only "get it" when they want too(those closed minds almost killed me and I won't deal with people like that any more!)I KNOW you know that kind when you start talking...."that" glaze comes or they change the subject...stop, don't waste your energy...Since finding UBPN, I've printed out that brief paragraph explaining what BPI's are and hand it to them then excuse myself,& move away

FYI, my son's eyes were "opened" when he met so many other adults with varying BPI's AND all the Brave children, some with casts, or splints on at this years Camp. There IS NO experience Life-changing AND Affirming than atending UBPN's Camp. Moms, Dad's, siblings and BPI kids got their questions answered and lifetime friends made. I highly recommend coming in 2009! (Camp is every 2 years). Also, keep reading, as time permits, the posts on this year's Camp Forum and view the pictures everyone is posting there.

HUGS,
Carolyn J
LOBPI/69