United Brachial Plexus Network, Inc.

A question that I have been asking myself over and over again these past few days.

Some of you who post here are aware that I am actively trying to start a support group here in the UK for adults with a bpi, with some success so far, and with the blessings and encouragement from all the medical professionals I have met up to now and discussed the support group idea with.

These have included two leading surgeons here, and several Physios, Orthoticists and pain clinic personnel. I have also been encouraged to make a support group for adults here a reality, by the people who started the group for parents of children with an obpi in the UK over 10 years ago. All these people have unanimously agreed that it is a very good idea, is long overdue in the U.K., would be very beneficial for adults with a bpi and all have offered to help in any way they can, even to provide rooms for meetings, etc.

From my trip to the Paris BPI Symposium, I learned that most bpi surgeons worldwide, are not against the concept of support groups specific to this injury, and would happily refer their patients to them, provided the group set up and operated under a code of conduct, and I personally don't have a problem with that. So, EVERYONE I have spoken to, including a few injured adults have, by their positive reactions and suggestions, fired me up even more to pursue this thing, and to make it actually happen.....

...but now....

I'm not so sure I'm doing the right thing.

A couple of things that have been mentioned in recent posts here have made me step back and question whether a support group for adults with a bpi could actually cause more anguish and psycological pain to some people. A big part of the group's activities would be to have regular meetings, mainly in a social setting where people could talk about what has worked for them, share unique experiences etc....how would some people feel when, inhevitably, they will meet others who have re-gained more function? others who have less pain? had a bigger compensation settlement? and even worse, instil false hope in someone re: surgery? or depress someone newly injured when they see
how bad it might actually be a few years down the line?

I have been so single minded and involved with the whole thing, setting things in motion and meeting people that I seem to have lost the plot somehow. Looking back, I made sure that I had the approval of the medical profession first, as I thought they would be the biggest obstacle, but now, I think I missed the point; I should have asked more ADULTS first if they actually WANT a support group, and is it likely to be unwelcome and not actually needed by them?

It's fairly obvious that the medics, physios etc encourage the idea, because a support group can and should take care of the emotional side of things, and this can only make their job easier, but they don't actually live with the injury themselves. What if, after finding the group, and maybe meeting others, despite everyone's best efforts someone became worse, psycologically because of it? Angry and depressed? Would that person have been better off not knowing of, or meeting others? better off being left in ignorance of others who unwittingly awoke feelings of despair or whatever, that were previously buried? I would be mortified if that happened as a result of something I had instigated.

Help me out here, guys;

I really am at a crossroads with this thing. It takes up so much of my time (although not too much to show for it yet..!) for which I am definitely NOT complaining..I don't care how much time it takes up, I have felt driven to do this, for a while now, because of how alone I actually felt before finding others like me here. Now, I'm beginning to think a support group for adult with a bpi is maybe not such a good idea after all.

PLEASE let me have your feedback on this. I am not looking for an ego massage here, just really need to know that I'm not going to inadvertently be the cause of more harm than good. I am very much aware of the saying that the road to hell is paved with good intentions....

You are welcome to email me about this.
Sorry about this long message.

Liz B.

wow difficult one liz but i reckon what your doing is right...........a support group for people living with bpi & what its like living with the injury dealing with the pain etc. i think where the problem comes in is 2 things like you say giving people false hope or people finding out early on this is an injury that doesnt go away. but i think the support & the chance to meet others outweighs that. i wish there had been support much earlier on in my injury how relived were we when we knew we wernt the only one in the world going through this. id be very interested to know what guys who are newer injured feel about this?

liz your looking at practical support how to claim benefits get back to work etc. i must say this was a nightmare when i had my injury thinking what the hell can i do workwise & being pushed into going back but not knowing how also not knowing if i could, think it may have been nice to see others were working. but you get the downside to it that folks may have this pain for a very long time. my thoughts are the benefits of a support group outweighs the downside to it.

your also getting balanced medical advice, were all adults & i dont think the truth is bad.

keep up the good work hazel

I recognize much of what you are grappling with...it is a very similar situation to the one parents of obpi children found ourselves in about eight years ago, when our support system first came into being.

I can state with conviction from both my experience as a parent of a child with an obpi and as an advocate for others for the past eight years that the benefits of a support group FAR outweigh any downsides...I am struggling to even name the downsides....the emotional stuff is there for us whether we express it publicly or not...and I am a firm believer that expression leads to healing (emotionally).

I have seen that most people consider it much better to know the true facts and face reality and have access to information that can help you make the right decisions for yourself, than to live on in isolation and, in many cases (my own included) denial.

I think that most people will agree that it is never "easy" but it is "easier" with the knowledge that there are other people out there sharing the same challenges.

That said, there have been times over the years that I have met people who have no interest in participating in support group activities or of even receiving mailings...many of these people tend to join in our activities at later dates, when they are emotionally ready to do so.

I think it is great that you are being sensitive to the feelings of others on this topic, but I urge you to move ahead with your goals to bring people together. There will always be some people who will not be ready for this type of thing, and that's okay. Everyone else can certainly benefit.

Bridget

bridget can i ask a question, im interested in how you feel when you read adults stories of difficulties years later. or do you see that folks have got on despite this injury? just curious hazel

i agree the benefits outweigh the downfalls but thats my opinion.

bye hazel

it's funny liz, i was thinking EXACTLY the same thing yesterday. As u know i'm very well adjusted to my injury, would it have been harder if i'd personally known another tbpi who regained movement, or had successful surgery? If I'd wanted surgery but couldn't get it when others could? If i'd been unable to see the person who did this to me prosecuted? The answer is, it was 22 yrs ago now and I just don't know, i remember the pain of the early days but i don't feel it any more.

The parents of injured babies seem to gain a lot from one another in support groups, despite the fact that all of the children regain differng levels of function, but the key in answering your question Liz, is, as you say, it's different when it's YOU with the injury. So really the only people who can give an answer that might help you are the new injured, or those injured in the last couple of years who have been supported here.
As I'm involved, i know that what we are preparing is entirely 'support' rather than 'recovery & treatment options' driven, which was what we instinctively felt was what was needed and turned out to concur with the guidelines you discussed with the health professionals in Paris. We know we are on the right track.

I personally think that our work is very much needed, and we have done it the way we have done because there is so much 'out there' focused on recovery and treatment options and NOTHING to tell you that life is possible, normal (ish!) and completely OK- WHETHER YOU GET RECOVERY OR NOT. If a doctor had told me in the early years i would get to the stage where i would cease to even think about the arm and live, dance, laugh, change nappies and live around the pain, i'd have laughed in his face. But if i knew of others with flail arms who were already doing these things it would have been a great comfort and maybe have got me where i am now more quickly. Knowing and possibly meeting others with functional recovery or other advantages would maybe have caused me bitterness and pain too, but remember we are all living in a world full of 2 handed people, taking what they have for granted. As Hazey says, we are adults, we can deal with that and do, every day. The benefits of knowing that a total bpi isn't the end of the world i think outweigh the passing feelings of distress that others seem so much better off. I understand those feelings when i see them surface here but i think they are a passing phase that we all go through whether those feelings have been triggered by a bpi with more function/treatment options/money or by something else like trying to do 'auld lang syne' with a group of non bpi peeps. I recently had a pang of intense pain about clapping-not me clapping but the fact that i never taught my first baby to clap because i can't, so i never thought of it. When she went to school and saw the other children clapping she was amazed and i felt terrible. Something recently awakened that memory in me and i felt the pain as intensely as i did 10 years ago when it happened....but it passed and i remembered the great things i do have. And yet when i found that my 3 yr old had pulled the right arm off the mummy doll in her dolls house 'look mummy, like you!' i laughed my head off....you can't control your reactions to things that happen, life is bittersweet to everyone and noone has it easy whatever happens to them.

That's just my thoughts, as i said before, it is the new injured who need to say what they feel about this. Whilst we have gained friendship from meeting other tbpi's, none of us long termers seem to be in much need of support and all of us visit here to support others, we are driven to help newbies however we can. We know we have helped them, too, the work we are doing now will i think just concentrate our efforts and is definitely needed. It was the lack of positive info about REAL life with a bpi that drove us to do this, we are responding to a genuine need which currently does not exist anywhere.
So....speak out newbies, does talking to others or learning of their recovery (physical or mental) help you, or does it compound your own unhappiness at the situation you find yourself in NOW?

Feel i have to put another point of view across,
Since responding to Bigsel's post (the jelousey thing)Im starting to feel guilty that i'v got relativly good recovery,Well maybe im the minoraty and i know im v lucky to have done so well with my surgery,My physio recons that only around 10/20% will ever get the same function ,This is due to what i was saying about the difference between luckely retaining some movement in my hand after the accident.
In the past iv harped on a bit trying to keep people looking on the posative side,just to give them some hope,but like has been mentioned is this "false hope" of benefit to anyone other than someone with a simaler tbpi to me,

what do you think, is best to look optamisticly or be be honest,and realistic?

karl

Hazel,

To answer your question, I am very interested in reading about adult experiences (as well as older children) with bpi. My personality is such that I would much rather know all the potential challenges and thus be prepared somewhat to meet them should they occur. Perhaps my desire in this regard goes back to the fact that my son's injury "came out of the blue" as I knew absolutely nothing about bpi, had never even heard of it before his birth. I have a strong desire to never be in that position again!

I do not despair for my son at all, in fact, he is a constant source of inspiration for me. He has a great attitude and is a wonderful kid...all of which has everything or nothing to do with his arm, depending how you look at it.

I feel that one of the major benefits of participating in a support group environment has been the comradarie...not only for myself, but for my son. While it is true that I value greatly the information we share on treatment options (I've learned a great deal more from other families than I have ever learned from the professionals) the support alone has been really wonderful. After hearing so many older adults find our site and comment that they thought they were the only person with this injury, it is a nice feeling to know that my son knows many children (and adults, too) with very similar injuries. He will never feel like he is isolated or alone in this world in relationship to his injury.

Keep in mind that my perspective is one from someone eight years into this...I sincerely doubt my response would have been the same the first year of my son's life. I remember clearly the first time I met another child (older) with a bpi, truthfully, I was devastated to think that my son's arm could possibly look similar to his...but, when my son reached that same age and his arm did look the same, it was OK. I wasn't devastated...I had moved on with acceptance and a greater vision of my son as being so much more than "just an arm."

Okay, sorry to be so long-winded...

Bridget

Lizzieeeeeeeeeeee

My 2 cents??? OK since you asked

I think what you are doing is a wonderful !!!!! thing!!!!!!!!

I don't think you can or could ever go wrong in providing a place of support for people in need. And that is the key point I think. The people that DO need the support/information/friendship will be able to find it with you.

As Bridget and Haze pointed out the truth can never be bad, even if you don't realize it at that exact second.

I remember when I met my first OBPI, and how before hand I was so full of myself. Just knowing that she must be much worse off then me.........cause I've mastered so many every day things Then on the day we met face to face I came home and wailed to Haze, heart broken because she had so much more rom, and strength and bloody hell she could reach the back of her own head with BOTH her hands!!!

I was devastated........................and I learned a very valuable lesson that day Lizzie. I learned that I wished I would have found all of you guys sooner. Because if I would have....... for better or worse I would have been a little better prepared

You can never have tooo much Support or Friendship Liz.


Never !

This question of are you giving too much hope... When I took the adult information created in the awareness committee and manipulated it into a brochure format, I titled one section "There Is Hope". Pr. Gilbert (Paris) read the document (he was one of the professional document editors) and blasted me and said - there is NO HOPE FOR SOME so don't keep this in here. And I said to him - but how can you say that there is no hope when the future holds so much. And I told him about Nancy Birk who supinated for the first time ever in 47 years following a surgery. How does one really know what research will bring with the stem cell stuff and all. And with that he backed down and admitted that there was 'some' hope. So I changed the title and added the line "research is ongoing" so that there was some positive statement in there.

There are good and bad things about support groups. This site (as you know) is my lifeline. Had this not been here I would probably be in a psych ward....honest. I fell into a few very deep depressions during Maia's 3 little years. When I went to my first support group picnic in PA - Maia was only 3 months old I think.... I was SHOCKED to see the kids- to see their arms and their scars and the way they held their arms. I was so sick / nauseated / freaked by seeing this.

I remember one mom who was so proud of her son - "show Francine how you lift your arm honey" - and this little boy with inches and inches of keloided scars lifted his arm in such an awkward and compensatory way. I thought "this is what you get AFTER surgeries???" how could this be? It was so painful for me to see this. But it was reality.

It took me a long time to realize that this injury is a 'lifetime' thing and I could only swallow a tablespoon of that at a time. But without the support group and everyone on here, I could never have done it.

Now three and one half years later, I think about that little boy all the time. I wish he would come back to a support group picnic so I can celebrate his function with his mom...and show her what Maia can now do. We're the only ones that understand what this is all about and how it feels and all the emotions one goes through....people on the outside..... well they are clueless.

Liz - forge on. We need each other. We are lifelines for each other. Starting a support group is such important work.... even if people gather just once in a while and have a beer together.

-francine

Hmm, very interesting discussion - my first reaction is YES it is needed Liz! I am due to see my handsurgeon today, (its valentines, should i take him flowers??;) and will ask out of curiosity how his profession are taught to break the news to new TBPI's - they definitely seem to prefer to keep you in the dark - so's not to get a bad reaction? Thing is, there's all different personality types who end up injured, and what they do and feel about it after injury is down to personality to a great degree. For example, a lot of TBPI are bikers, who will probably have been following bikesport for years, seen how when a racer picks up an injury, he's whisked off for surgery to fix it - the 'nuts and bolts' way of thinking. so naturally that person will be thinking there is a 'mechanical' IE surgical answer to this, so that's at least partly why some are quicker to look at surgery/treatment options. I too have felt guilty my recovery has been so good, but as well as false hope beware false PESSIMISM too, if i had just given up all hope of recovery on day one, let everything freeze up and not paid my dues with the physio EVERY day any innervative recovery i did get would have been wasted on a frozen hand. I was warned by an ambulance driver early on in the injury that he had seen that happen to folks who just gave up hope, sad but true. But the bpi was just the icing on the cake it was other (mainly spine) injuries that work finished me for, being able to move my hand didnt save my livlihood. If i never had any recovery at all i would have had to accept that too by now, but its just human nature for folks to try get max recovery, advances are being made all the time and like my hand doc says, it IS treatable in many cases. i wish there was a magic wand to wave and hey presto everyones fixed like it never happened but there isnt. Do others with less recovery resent the fact i was so lucky there? I cant answer for others. I would never say to someone new injured you will definintley recover, OR you definitely wont because either answer would be untrue even the 'experts' can't say with 100% certainty what will happen to each injury. Does my posting about good recovery depress people? I hope not.
When i moved into my house after staying at my mothers a few months after injury, without internet support that i found my support system otherwise was nothing, my family didnt understand (i recently berated my mother for saying my recovery was due to her church group prayers, i said a phone call asking if i was coping ok with one hand running the house would have been more useful) - i definitley thought it was a lifeline to folks who understood.. there are sooooo few who 'get it'. Ooops rambled a bit there, LIz i would say yeah do it if folks want to get involved or not is up to them but i reckon its much needed, in my opinion!