United Brachial Plexus Network, Inc.

Allison

I wandered through the woods with you at camp and hung out in our injured only room. I think you are one of the most well adjusted persons I ever met... I can't believe that anyone would be so foolish especially at camp... sorry this happened... You have moved on very quickly and are well informed.
You deal with your pain and made adjustments. You have adapted to your life with one hand and really have a great outlook on life... It was a pleasure to meet you.

Jen... I know that you are not in denial because I have been here for almost 4 years... it is understandable... do folks think you don't know about your arm... you look down and how can you be in denial you lived with it for the past 20 some odd years... they don't get it! the strain on your neck and shoulders etc. OBPI often have to hold up arms that are able to move because our arms are heavy I can't imagine how heavy your arm must be. I am not in your position because I have some use of my arm and I can use my hand some what... but I don't think that anyone in their right mind AB or disabled would consider your decsion as something that was made in haste and without much serious thought...

As for someday... we only have today... you live in reality the reality of tbpi.

It is your body and yes, your right, if you yell and scream... you become a nasty bitter person in denial... so vent away where people understand you have a right to make your choice for your body without explaining to every busy body in the world the reasons for your choice...

take care,
Kath

Hey St Jennie,

Eric Burdon sums it up nicely: "it's my life and I'll do what I want."


Henry

Hi Allison,

It's Nancy (Eric's Mom).

I just want to say that we totally respect your decision and I hope it's not we who offended you.

I can only speak from our experience with Eric and for us surgery was the right decision. Eric is lucky. He has had good recovery.

I am absolutely amazed by how well-adjusted you are at only 8 months post-injury. For us, it took about 2 years to get where we are.

We think you are an amazing person. You are strong and comfortable with who you are and where you are. Please don't ever think that we're doing anything but trying to help.

You are SO cool. Eric calls you either "O Canada" or "Team Canada". I know that he was very very happy to attend camp and to meet you and all the "clique". You guys really connected on a level that I couldn't even try to comprehend.

Thanks for being there and thanks for being you!

Love ya,

Nancy, Mark (& Eric I'm sure) although he will probably be in touch himself.

Kath M and Nancy A,

Thanks for your encouragement, support and wonderful comments. Camp was very educational for me, what I went searching for I found.
p.s. I would have found more if I had brought a flashlight...


allison.

Jenny, I agree with everything that has been said in reply to your post. After 23 years of living with your BPI I would suggest that you are an expert in every sense of the word. Only you can decide what is best for you and your body as long as you have all of the knowledge available that can help you make an informed decision. Experts like you have this knowledge so quite frankly other peoples opinions are irrelevant. Changing attitudes is another issue and I think it is difficult because most people who think there is a "cure" for everything live in hope but unfortunately they are ignorant of the facts. My husband is only 14 months post injury and he has wanted his arm amputated from the minute he realised there was no hope of recovery. We are lucky that friends and family know him well enough to realise that for him it will be the right decision. He will be stronger mentally and physically when his arm has gone and he knows that the pain will still be there.

We too have had well meaning people offer solutions even last week at a boot sale some chap presented his card as a "healer" and informed us that he could get Duncans arm to move!!. I just smiled politely, took his card and then popped it into the nearest bin.

It is interesting that people are quite accepting of the surgical removal of diseased organs,skin blemishes etc but getting rid of a flail limb seems to fill people with shock and horror. I think it is related to societies need to look perfect.

Anyway I am now rambling on when really all I wanted to say was ignore the attitudes of other people. It is your life and your body, you know it better than anyone and you have the right to choose what is best for you.

Tina

you know as this conversation is going on, I turned on the show E.R. last night and it shows that pig headed surgeon Romano burning his arm....and then of course he makes the decision to amputate it.

I can completely understand how one would want to amputate a flail arm. I would just wish for all of your sakes that it would help with some pain issues, too. It just doesn't seem right (although I know it's true) that it wouldn't get rid of pain. A bad paradox.

good luck to all of you,
francine

Tell you what-if amputation WAS a cure for the pain, i don't think you would have too many tbpi who didn't go for it within the first 2 years, I would have for sure!

Thanks again everyone. It's been a long time since my arm was a topic of discussion for the AB's in my life, I'd forgotten how annoying and upsetting it is to see their shocked faces at the thought that someone should 'mutilate' themselves. I look forward to freaking them all out with my stump in due course.....:0)

I chose to go the Amp route in June 2002.
I knew that it was a personal choice, and I just didn't enter into a discussion about it with anyone apart from two people: my surgeon and my wife.

I can say without any shadow of a doubt that for me it wasthe RIGHT THING to do. I don't care what medical advances may come along in the years to come, because the time was right for me THEN.

I am more self-conscious about the size of my nose, than I am about not having a right arm. Even though people obviously notice the lack of an arm immediately but don't notice anything wrong with my nose. I went to one of these fun waterparks recently, with all the flumes, slides and chutes. I was a bit self-conscious about the stump at first, but no-one cared, or made any comments. And when I survived the scary Devil's Drop, I didn't think of anything again apart from how much fun I was having.

Anyway, I'm waffling... The amp has given me the following advantages & disadvantages:

Advantage: no cold hand
Advantage: no uncontrolled sweating
Advantage: no risk of burning or cutting the flail hand
Advantage: no subluxation pain
Advantage: no backache
Advantage: no loss of balance
Advantage: no problem getting the arm into a sleeve
Advantage: the arm doesn't get caught or jammed between the seat and the door when driving
Advantage: easier to swim and ride a bike
Disadvantage: er... none

I have been very interested in reading this thread, not only because it is about amputation, ( which is an interesting topic) but because basically, it deals with society's attitudes towards peoples looks.
If we were all blind, no-one would even know that someone had an amputation until they actually touched the amputee - We would be judged on our personality and behaviour not our looks, so what difference does it make to the other party if you have an amputation - NONE AT ALL !
I never cease to be amazed at how some people have the ability and guts to make personal comments to people who don't quite fit the "norm" I.E. the body beautiful brigade.
I recently went to a market research event on dog food (not that the subject is relevent!) and sat next to a man I had never met in my life.
The first comment he said to me was " oh, I see you've overcome your battle with anorexia then"
I was so shocked that I couldn't think of a retort at first.
What on earth made him think that he could make a personal comment about my size????????
It was all I could do to stop myself from asking him where on earth he had got his George Hamilton fake tan from!
I suppose what I am saying is this, there will always be people who feel they can comment on how we look or what we do - but ultimately it's no-ones business but our own.
And I did manage to think of something to say - I told him that it took a lot of my time to keep in shape - he gave me a look of disbelief and I reminded him that ROUND is a shape!!!!!!!

oddly enough he didn't speak to me again after that.
And for those of you who know me well, you will be VERY surpised to learn that he still has his front teeth!!!
Karen

jenny i cant say i agree or disagree with you to each their own right know the only thing that keeps me going is the surgerys and possibilitys of some recovery everybody has to deal with this in different ways as far as denial you are defeniley not in it actually you are way ahead of us who look at it the way i do i think it is awesome that you deal with it as well as you say you do after all the surgerys ive gone thru and will go thru i still havent accepted the fact that this might be as good as it gets so your an inspiration to me cause when the time comes if it does i can say other people deal with this so can i thank you