United Brachial Plexus Network, Inc.

Hi

i'm 17 with OBPI which obviously means i have had Erbs all my life and know no other way of life. Recently i've been thinking about the whole issue and people have said that i would jump at the chance to have my arm "put normal", but when thinking about this i don't think i would. i know it sounds stupid but because i know no other way of life with "two arms" it's kinda more scary and don't think i would be able to cope with having "two arms".

I would like to ask the question of how do u cope with it happening so far into your life and knowing that there is no way back.

i don't mean to be personal and blunt. It's just i find life hard enough having had Erbs all my life and was just looking for an insight to the other side, as i also know some of you will have had surgery as well where as i have none at all.

i don't mean to sound muddled if i am and nobbody need reply.

sorry and thank you.

Anna

Hi,
my son was hurt when he was 17 for 10days, he is now 22
and has lived both lives,
one with both arms and hands, then lost the use of his right arm, untill surgery,
it was very hard for him, and us,
but we looked at the big picture, and saw that we still had him, to hold, cry together,yell at,love, and care for.
it was Just his arm and not him. that was lost for a while.
i tried having my arm down in my pants just to see how it was for him, so i could understand how he fells,
it was hard
he did have to learn how to bath himself again, get dressed, eat left handed, he had to learn a lot, but mastered it, and then he got the use back,
he counts his blessing every day that he has the use back,
it is like a lot of people has posted in the past years
all injuries are bad, but it might be easier for the person (not the parents) if it happens when they are young(baby's) cause they have to learn how to use the hands from day 1, where if you have the use of both arms for 17or more years and lose the use, you have to start all over at day one,
but the BPI means you are very special, because not everyone has it.
that is what has helped my son at times, and just knowing, that is was just a arm, and not his whole life. he was still able to breath,walk ,talk,yell,eat ext.

hey anna
i am prbobly not the best to answer this as i am a newby at 61/2 mos but will give you what i feel today. it is very frusterating going from do it all work ride fix cut wood carry haul hunt hike canoe etc etc to picking and chosing what to relearn and persue. i have learned to be patient with myself and with others. i am finding that with a little imagination and good sorces of informtion i havn't been bored for lack of something new to try. as for not going back don't count on it. it may not be exactly the same but hopefully close enough.
keep on keeping on red

Anna - I went to a conference that discussed something that is used by people with Cerebral Palsy that really makes a difference in their lives - gives them enhanced walking abilities, etc. The teacher talked about how when this is done with an older child or adult sometimes the most difficult part is learning how to adapt to the new capabilites. She said that many people become very depressed because they no longer 'know themselves' and have to learn all new ways of doing things. I thought it was very interesting - never thought of it from that viewpoint.

Hi Anna

Not an easy question to answer, but a valid one, and one I have discussed several times over the years with others with a TBPI. I can only speak for myself, but this is how I see it...when I was injured and lost the use of my arm, I was 41. The first few months were just a haze of pain, tests, surgery and huge amounts of drugs, and now, I can hardly remember those first few months clearly unless I really try. I guess it's a time and place we all just don't want to go back to. The final result of the nerve graft surgery I had took at least 18 months, and as I was not a candidate for further surgery, I knew pretty early on that what re-gain of function I had by then would be it. There would be no more.

I did worry about my future, what I would do for a living, how I would get by etc but forunately, fate took care of that, so at least, I never had the added mental anguish of wondering how to keep a roof over my head, or finding a new job. All these things, and more can be real serious problems particularly if you are the main wage earner. Coping with those sort of issues when this happens to you as an adult can be very traumatic and difficult at first. It can be extremely scary. This is where suddenly injured people need support and positive, meaningful and practical help.

Looking back at the surgery I had, I really don't remember why I had it; I think I was offered it as 'something is better than nothing' so I was kind of talked into it. I knew deep down, before I knew ANYTHING about these injuries that my arm was always going to be more or less useless.

Pretty soon, after about 2-3 years of living with it, I found it was very easy to get on with life...differently, but getting on with it nevertheless. Living with one arm is actually no big deal, and this was pretty clear to me after a surprisingly short time...(the pain is a whole different ball game tho...) I personally never really thought about re-gain of function, preffering instead to learn to live with what I was left with; this is what I call recovery...I recovered from my injuries a long time ago, and they truly do not bother me any more. Searching for the 'holy grail' of a fully or even partially functioning arm, in my opinion for me, is a complete waste of time..time that I spend on other things. Unless I am writing something like this, having surgery to regain or improve function never ever crosses my mind.

Ten years down the line, which is where I am now, if surgery was offered to me that would give me back more function, I DEFINITELY would not go for it. I wouldn't even think twice. I have felt this way for about the last 6 years.

Some people will be horrified to read that last statement, but it is a fact, and I am not alone in this thinking. Several long termers I have spoken to over the years have all said the same. There are so many reasons why some of us feel this way, not the least of which is we can't see the point in going thru more pain etc and months, possibly years of therapy for what could be very little improvement. Don't get me wrong tho...I WILL and DO support ANYONE'S decision to go ahead with surgery..it is their choice, and definitely not my place to persuade them otherwise. I am over the moon when someone tells me their surgery has worked and they are happy with the results...I celebrate alongside them and feel as excited about their future as they must do. Each surgery is a learning curve for the surgeons to help develop more techniques to manage and repair these nerves, and that can only be a good thing in the long term. I am not, therefore, against surgery for these injuries in general, I just don't want it for me.

I hope this has partly answered your question Anna, it can be a hard one to answer as we are looking at it from our own side of the fence, and it can be really difficult using this electronic medium to explain it properly without upsetting others sometimes! :0)

Take care

Liz B :0)

Hi Anna and Hi Liz!!
I am going to repsond here too WITH MY OWN PERSONAL POINT OF VIEW - I want to stress that it is my own point of view and not anyone elses!

As you both know Gavin my son has an obpi and I was devastated when it happened to him and if I could wave a magic wand and go back in time, I would not want him to have suffered his injury at all.

BUT I am immensley grateful that he has had this injury since birth - for many reasons,
he has had the opportunity of some surgery to restore some function -it's not everyones choice, but for us it was a good thing.
He has NEVER known what it's like to have had two "good" arms and so to a certain extent, he just gets on with life and doesn't let it bother him too much.
He has never had to re-learn a new trade because his injury has prevented him from carrying on his old one,
He doesn't suffer pain like most people with a tbpi do
we know that what he has got in terms of recovery is good and we know there's no other "magic cure" out there, so we just get on with things.
He doesn't (YET) feel inadequate because of his arm, I hope he never does - not many people ask him about his arm yet, possibly because the surgery worked to a certain extent and it's not too noticeable
plus ( and you might think this is REALLY weird !!) in a strange way, I think it's made him and me better people, more tolerant of differences in people and more aware of disability issues in general. He is definitely a firm believer in equal rights for everyone, and at 11, I think thats a good thing.
Well, it's just my point of view, and time is a good healer, so perhaps I am past the bitterness and anger I had when it first happened ( and there was a lot!) but I am happy it happened to him at birth and not later in life.
The only thing I NEVER want him to do, is to have a motorbike, I really couldn't bear it if he had a motorbike and suffered a tbpi as a result of an accident - I KNOW it can happen other ways too, but that's the one I can hopefully prevent!
as I said, just my own thoughts!
Karen

Hello Anna,

I must admit I have been pondering your question ever since I read it two days ago. I am not sure I can really answer because like a person injuried at birth I have learned how to adjust. My accident was in 1991, when I was at the age of 27. If I had been asked this question in 1991 my answer would be VERY different than it is today.

In 1991: I felt like my life was changed forever, I had no idea how I was going to financially support my son, I figured dating was out of the picture or any kind of a social life, I was constantly looking for a "fix" or a "cure"... actually in the beginning I was looking for an acurate diagnosis! It was extremely scary trying to figure out how to do things with one arm or after my surgeries an arm and a quarter or on a good day a arm and a half!

In between 1991 and 2002: I found doctors that helped, I found a couple lovers that helped , I learned how to dress myself again, I learned how to fix my hair again, I learned how to cook with little help... I am sure you get the drift... I had to re-learn a great many things. But, I had done it once so I just learned it differently the second time around. The most important thing I had to learn was to listen to my own body. My body tells me exactly what it can or can't do. I know if I pick up my friends new baby I am going to hurt later. But I also know if I don't pick up that new baby I am going to miss how she smells, or feels all snuggled in and she is going to miss the feel of just how much I love her. So it is worth the pain later. Just like trying to curl my hair. What use to take 10 minutes can now take up to an hour. But it is worth it to see my husbands eyes when he looks at me.

Coping in 2003: I have been married for 3 and a half years, I stopped trying to fix my arm, I found trying to fix it just made more stress thus making more pain and frustration. I feel perfectly "normal" with a bum arm because it is a part of who I am today. The struggles have made me stronger and smarter. I guess for me it just boiled down to adjusting and accepting. Truth be told I am not sure if I really remember doing things two handed. I guess that is not true because when I have a set back...dropping something or trying to button my shirt.... I get pissed off when my hand does not work. But, life goes on and I plan on going on with it, regardless of what limbs work.

GREAT question, Anna. Thanks for posting.

Joy

Hi anna, don't worry about your question, it's not offensive and I have often wondered how it would be to grow up with a bpi, or how it would be to have a functioning arm that didn't work properly, it's normal to be curious about how others cope and feel, and if you can't ask us who can you ask?

The initial few months after the injury were probably the worst of my life, but what with the morphine and the amazing healing powers of the brain I hardly remember it. We have a section on the tbpi website where people tell their stories, most of them are more newly injured than me and their vivid descriptions of their total devastation bring it all horribly back to me-it's cathartic to know others have been thru the same thing but it makes it hurt all over again.
I declined surgery once I knew i would never have a functioning hand, and I'm afraid 23 years later I now feel like Liz- I wouldn't have surgery now for any reason, no matter how much function it would bring-I'm totally adapted to one armed life and can't see the point of it for me. I've considered myself fully recovered for decades now-I could have surgery for my short sightedness too but I don't see the point of that either.....you can live with disability as long as well meaning peeps don't treat you like a glass ornament-I trained my parents to back off pretty early. I have a full and busy life and no regrets about the past, including the tbpi. Frankly I'm at a loss to know what able bodied types DO with those extra arms........:0)
Good question Anna!

I've lived on literature all of my life and I have to say; the responses to this question are way out there for cool.
Thanks; Onepaw

5 years down the line and I agree with Liz and Jenny.
There are occasions when another arm would be handy, but most of the time I am totally adjusted to one-handed life. Anyway, peeps with 2 hands often wish they had 3, when they're doing a difficult job, so what's the different. You get used to using what you've got.