United Brachial Plexus Network, Inc.

I am new to this site as of today.
Amazing that all of this information is out there and I had no idea!

The lingo is all new to me but I am a 42 year old L-OBPI that did get surgical intervention at age 6. I had what would be considered a good cosmetic effect but still feel I have some significant functional impairment. During my childhood, I thought it was the surgery that was the inciting event in my life that made my arm so different. I did not understand that it was something done to help me. The surgery, the body cast and the endless PT and doctors visits all seemed to be just one tortuous nightmare. Having a child with Erb's Palsy caused a lot of shame for my mother. It was not a topic of open discussion in my home. As a result, I grew up with significant shame around this issue. It was not until I went to medical school that I learned that shoulder dystocia is a textbook entity and something that others in this world have in common with me. In the subsequent 15 years, I have unraveled pieces of this for myself. I am curious if anyone else experienced a similar parental response growing up........

hello marylandmom welcome to the forums. i did not grow up with my injury. i was injured during a botched surgery in may of 2010. i am glad you are willing to come here and discuss this issue. there is nothing to be ashamed of. i wish i could be of more help. it may take a day or two for someone to respond but there is usually a response eventually.

My mom wasn't ashamed, but felt a lot of guilt. I am glad that you have been able to finally get answers and come here to talk to others.

My Mom was very open about what happened to me. I always knew the doctor made a mistake and pressed to hard on my nerves. She was in awe of the doctors at NY Hospital, who began treating me at 2 1/2 weeks of age. I was born in a hospital and at that time the mothers and babies remained in the hospital for two weeks... They had my arm pinned to my shirt and told her that I was scratching my face... still can't do that!

She felt sad at times and worried a lot but was very positive at how much I had gained. She really never shared her pain about my injury and tried to keep a positive spin on it. When we were in public and people asked questions she answered them with the same line. " She was injured at birth... the doctor tore her nerves and it's a miracle she can move ... She has done so well... That usually ended the questions from people on trains and buses. She taught me to answer the same way, as a child. When I began to travel alone on public transportation and people questioned me, I had an answer.

I'm glad you found us and have also been able to research so much information on your own.

I am 27 with LOBPI. Growing up my dad would explain my injury to me if I brought up the topic and they he very little about it. I was left with very little answers to my problems. My mom didn't talk to me about my injury as much. I don't feel like I am able to talk to them about it today, and I also get very emotional when talking about my arm. I think I'm generally a sensitive person, the arm just adds to the melting pot.

So I stand somewhere in the middle that my parents were open to talk about it but at the same time I felt like they didn't want to. I'm thankful to have my UBPN friends available online!

Also, we meet for chats Wednesday nights (5-7 PM Pacific Time, so I believe that is 9-11 PM in Maryland, don't quote me on that though )

Link for the UBPN Chatroom: http://ubpn.org/index.php?option=com_aj ... Itemid=121

Thank you all for your kind words and input.
I might like to join the Wednesday night chat one of these days.

I would amend my initial posting to say my mother felt "guilt" and "shame" about my L arm.
But I dare not bring the topic up with her.
(And there are certain words that are sensitive for me : "arm" "bodycast" "your arm" "shoulder"...they have some emotional content. I hear strands of that in other peoples' postings.)

Once as a young child I remember wishing out loud "I wonder what it would be like to have 2 normal arms."
I got an angry reply: "You DO have 2 normal arms!"
End of THAT discussion.
She does not see this part of me:perhaps too painful for her.

Additionally, when I miscarried my first pregnancy at 10-12 weeks, her attempt to bond with me went like this:
"I know what it is like to not be able to give your husband a perfect baby."

Nice. Comparing Erb's Palsy to fetal death.
Never mind that by that time I had become a successful, married woman, and a pediatrician to boot!
(Is it any wonder that I spend my days tending to the wellbeing of children?)

So, she and I have some atunement misses......and I think my Erb's Palsy did not help that issue.
Perhaps we would have had our issues anyways.
Have been unraveling that in some individual therapy in past 18 months.
Erb's Palsy coming up as a "core issue": not surprising.
Would not trade it for the depth of character it has given me and the sensitivity it allows me to have towards others.
I am a 'keep trying harder" and "don't give up"person as I have read many others say.
But there is a painful part to it all as well: I have shut that part out or a long time and not paid it its due respect.
Rambling now.
Thanks for the conversation!

Dear "Marylandmom...
I too "stuffed everything painful, bothemotional and physical that I had all of my life and when menopause hit I paid a HIGH PRICE for the "Stuffing EVERYTHING". Help and relif came when I... #1)recieved help in Counselling...took 3 -5 years and 2 different counsellors...if 1 person isn't a good match, change counsellors... and #2: I really started healing big time the day I attended UBPN Camp 2005 and sat & talked IN PERSON with other adults.
I must say I was relieved to read here in the "Medical Resources" Link that Depression often is a SECONDARY inurir/medical issue for adul;ts with OBPI's.
There is no need to suffer without getting help...but you must reach out for it. I sincerely hope that you do.

Please vent here as often as you need too. We have been there too.

Hugs,
"bossy" Carolyn J
LOBPI/72

Dear Marylandmom

As you begin to talk about your arm more openly and freely you will begin to heal.

One of the things I realized, in hindsight, was that I actually went through a mourning process.

At the end of it ... I mourned my losses and celebrated my gains. Many years ago I wrote a post on the board that was published in Outreach magazine. It was about what I had lost and what I had gained. It was after I wrote it, that I realized I was mourning and angry etc... It was a very healing process and while I was comfortable with my arm (so I thought)... I became so much more adjusted and comfortable and could speak about it without any emotional feelings.

Spending my first 60 years thinking I had a rare injury was lonely. We are not alone anymore and over the years have been able to share our black humor about our arms... Prefer to share that on private board...

I hope you can come to that point soon and realize that it is about how you deal with your arm... not anyone else.
I have sibling who had problems because I was injured and got so much attention... that's just how it is... and I realize now they can't help it... But I can help my reaction to them.

my attitude toward my hand is that it is MY hand. it doesnt work like it should, but i either accept it as it is or be miserable about it. i chose to accept it the way it is and go on. it aint going to change (much) so why worry about it to the point that i am so stressed that it takes over my entire life? i can adapt. so can anyone else. i do get aggravated sometimes and say i want a hacksaw to chop the dang thing off but it quits hurting then i change my mind and i want to keep it. i do take the injury very seriously, but i just have to accept it for what it is and work at improving it. as far as parents go, they will never know about my injury. they are both deceased