United Brachial Plexus Network, Inc.

Xiggers

I think as a fellow person who suffers from bpi pain I can speak for Susan in saying it is not the loss of the use of the arm that is her problem. Its the intense pain that come with it. For some of us it never goes away. We stop mid-sentence because the pain has a hold on us. Then once the pain lets go we can continue. Hell i often forget what I was saying because the pain is so intense I cannot concentrate on my thoughts. Like Susan has mentioned in her posts
I too press my chin to my chest when the pain is very bad. I feel like people wonder what the hell I am doing sometimes but its a part of my life. I too have thoughts like Susan and can very easily identify with her posts. I dont think I could ever commit suicide but I do wonder why I go on living this life of pain.

I find keeping busy helps with the pain but sometimes my body wont let me be as busy as I would like. I think amputation might be my answer kind of a setting myself free from the flail arm. I know it wont end my pain but might allow me to be more active.

Susan,
I admire your honesty & courage. The mere mention of suicide is something that is extremely taboo in our current society. Which in my opinion only creates a void that prevents any exploration of ones feelings, thoughts, and situation that might very well help them out of the torment that shackles them to such a fate. Conversation of suicide is also taboo because our culture is so scared of death and separated from it that we put all of our elders in 'retirement' homes far away, most kids idea of food or meat is something that comes wrapped with cellophane laying on a board of styrofoam under the glow of fluorescent tubes. There is no connection to the cycle of life in which that animal or grandparent was part of, and from that no deeper appreciation or respect of that life. This disconnection makes most tremble in their boots at the idea of holding a dying friend or slaughtering an animal for food. So people are plugged to machines that keep them around for who? I believe we'd have a lot more vegetarians around if everyone had to be part of taking a life to feed themselves. Cultures that still embrace the cycle of life don't have such a problem with the discussion or reality of suicide. Of course certain religious dogmas enforce this taboo without allowing one to entertain even the thought of it (possibly a simple form of self propagation for those religions). Suicide is a very 'human' thing, animals don't do it , because they don't have to, if they are depressed and tired of they're current existence, they help continue the cycle of life by being eaten by an animal that is 'hungry' for life and wants to live.

In other and older cultures suicide was noble, a thing of respect. Usually warrior cultures that had a very deep connection, appreciation, and respect for their environment and surroundings. One would take their own life out of loss of honor. This may seem ridiculous to some, but our current culture doesn't place that kind of value on honor, it simply doesn't mean that much to us. Different people valued honor to greater depths, greater importance. Important enough to not want to live without it. A value is placed on principles that demand those principles live longer than a solitary life. For me there is a quality of life that I demand, and if I have to live below that standard I prefer to be free. This in no way means I don't treasure life, to me it means the exact opposite. I value life so much that I refuse to degrade it's existence by dishonoring it with some substandard existence that is a shadow and shell of it's former glory. It comes down to ones spirit. If that spirit is permanently shattered and broken, than I believe that to continue to live is a form of slavery to survival. Life is to be exalted, embraced and cherished. And if I can't live it with that passion than I don't want to live.

All of this said, I refuse to disrespect the gift of life without fighting tooth and nail to regain it's lost glory. And I fully understand anyone's attempt to persuade someone from suicide. I wouldn't pass someone that has fallen on the sidewalk without trying to help them back up. But to ask or demand that some stay living on the floor of the sidewalk is 'inhumane' and a form of twisted slavery. No one wants to feel that they didn't try and help someone that has fallen, but at what point do you realize someone can't get back up and respect them enough to make their own choice about what 'they' value worth living and dying for.

Obviously this is something I have a strong opinion about. I personally told my family in the beginning, that if in three years I feel I am a voyeur of life and not a participant than you have to respect me and let me go. Some fully understood and some I'm not so sure about. I told them this because I didn't want it to be something hidden and shameful or thought of as a surprise if it happened and wasn't seriously considered. Why disrespect the life I've loved and ones living life now by being dishonest about my passion for it. And I made the promise to myself that I would have to be off all meds for at least six months before I make a decision. I don't have a fear of dying, but that doesn't mean I don't have a love for life. It's my love of life that makes me consider my end of it. In someways I wish this was culturally fully understood so there wouldn't be a need for discussion about it. But maybe that feeling comes from the difficulty one experiences discussing it in this culture and from all the different view points we all share and the desire to not hurt people more than honesty permits. Thank you Susan for your honesty and willingness to open discussion.

Hi PunchySue,

I'm really sorry that we didn't meet each other at the UBPN camp last month...I really thought you'd be there and was looking forward to having a few beers with you. Very sorry too (more than you realise) that you are still going thru so much sh*te with this stuff. I was going to just email you a message, but thought I'd post here instead.

I have to admit that I was totally surprised to see this thread back at the top of the boards...surprised for quite a few reasons, as I don't think it was you that originally bumped it? I could be wrong, and if I am I aplolgise.

Anyway, the thread is up there now and I hope you don't mind if I add a bit to it.

I totally agree with you when you say that surgery, drugs and even more of both of these will not help you find a solution to why you think you can't or haven't moved on. Both surgery and medication serve mostly practical purposes only, either in combination or separately, but neither can really help you with the battle you have in between your ears, the battle to get your self back on track. Ultimately, (as you said in your post), this has to come from within you, and you alone. Don't forget tho, that either the help of a trained professional and/or group where you can talk about this stuff can be a huge help in getting focused. If you have already tried this, try it again with a different counsellor. AD's can be useful, but even these have to be stopped eventually. You then find that finally, you can rely on your own power and strength of will to pull yourself up and walk tall again.

It isn't an easy road, none of us here have that any more, but it certainly ain't a dead end one either. I won't insult you (or anyone else for that matter) with a load of sickly sweet platitudes or corny cliches, but if you do see yourself as broken china, think of the fact that broken china has been the basis of many thousands of beautiful mosaics throughout the centuries...a bit of a daft analogy there but you get my meaning.

I agree with who ever it was that said sucidal thoughts aren't talked about enough. If they were, then there would be less actual suicides and more understanding of what the person is going through.

You say that it seems like selfishness to stay because you bring so much pain to those around you. How so? How are you causing pain and concern?

How do you truly think all those around you would feel if you did away with yourself?

How would YOU really feel if one of those close to you did the same thing??

Make absolutely no mistake, and I AM speaking from experience here, the level that you think or perceive those feelings to be right now in those who care about you will be magnified thousands of times and for many many years after.

The impact that suicide has on so many peoples lives
cannot be underestimated, and after all said and done, if suicide is used as a means to relieving constant pain, remember that relief is a feeling, and you have to be alive to feel it. You will not feel the relief you seek, if you are dead.


I know you posted that you are not going to kill yourself, and I am very very glad for that, I just wanted to post that there for other people who read here. I am ever mindful that the people who post are not the only ones that read.

I just also want to add a final couple of questions about the last bit of your post.

Are you talking about euthanasia here? If we as humans have a animal that is constantly in pain, for whatever reason, we take the decision on its behalf whether that animal lives on to as you say, selfishly keep us company, or die and be out of its misery. Are you suggesting that those who are closest to us should help us with a decision whether to live or not? I'm not being deliberately cruel, sarcastic or otherwise here, but you are walking, living, eating, breathing and concious? It is the arm alone that you've lost the use of and have pain from?

You need to look hard at the reasons behind why you asked that particular question. When you find the answer to that one I do believe you will find the key to unlocking yourself out of this depression and doubt. It is far more that just about the arm or even the pain. You might well need to deal with stuff that has gone on way before the TBPI maybe.

Thanks for your post and making us ALL think again.

Lizzy B

Well alright Sue! Don’t mind if I weigh in on this one, I hope. But then again this is the all too public drop box of the long lost, so I guess I will drop off this little note regardless. I never read your original thread, but being a casually self-involved narcistic butthead, I discovered your thread as I looked for answers to my own sorry problems (drugs vs stupidity thread).
After starring at your thread for a while, I slouched over to the kitchen for breakfast with my wife of 13 years and mumbled something of your thread in an attempt to ignite conversation (again in a poor attempt to self-actualize) and with her quick off-cast glance, and dismissive snort, I realized that I had far more in common with you then I did with her.
Don’t get me wrong, I love my wife, pretty much, but she is a mainstream professional with living parents, healthy children, and no relationship with death— in other words she might as well be a friggin Martian. I wish that was my world, but if it ever was, it isn’t anymore. My world is your world. Pain obsessed, debilitated, isolated and confused.
Sucks, but real—or is it?
I have not had any opportunity to pontificate about my struggles with suicide, because there is no such forum. We live in a society infatuated with death due to the fact that all are terrified of it. One feeds another, so that the more fearful we become the more fear we are fed, until our consciousness’ are little more than an endless panoply of individual fear, sorrow, and death: Clint Eastwood’s Hollywood understanding of physical disability, (your better off gnawing your tongue off—right?) how noble to die without the humiliation of a physical imperfection, right?
We should be so lucky!
Pain is no longer the enemy; it no longer lends itself to description for us. It is us; it isolates us from everyone else in the world.
Or does it?
I take issue with Christopher, as it is misleading to equate the idea of ritualized suicide with western individualistic values. In the west such a death is understood in the context of individual identity, a thing totally “foreign” to eastern society. Suicide was not, traditionally, undertaken to preserve ones individual honor, rather it was undertaken to preserve the honorable ideals of society--of culture—a concept nearly incomprehensible to we in the west. Boshido was the warrior’s code of ancient Japan, a culture identified with ritualistic suicide, but in the training of their young warriors the mothers of these supposedly cavalier suicide participants were admonished with the adage“ if you will cry about such a small thing what will become of you when you lose your arm in battle”.
Warriors didn’t kill themselves for smashing their thumbs with a hammer, and women had better wisdom than to kill themselves at all.
The basis of our understanding of suicide and self immolation is inextricably rooted in Christian/western beliefs of guilt and punishment—in the perfect world fallacy—an ideal of superficial perfection where all who are less than perfect deserve what they get. “Me above all others—I don’t deserve this treatment” would be the obvious stab at the “winner’s circle” for all who have failed the “test of the west”.
But, of course you will say that it is not about culture, or Boshido, or even religion. And of course it is not. It’s bigger than that. These are no more then outward concepts that hold no meaning to a mind that is being ripped apart by pain every day of every week from now through eternity.
Or is it?
The Taoist philosopher Zaungzi related his dream of a butterfly where, in the end, he found it impossible to tell whether he was a man dreaming of being a butterfly, or whether he was a butterfly dreaming of being a man. In other words: “are we life dreaming of death, or death dreaming of life”? So the meaning in this injury, though almost unfathomably cryptic, may well be in how we perceive it.
To the Buddhist what we call life is an extremely rare thing, which through an unperceivable labyrinth of cosmic interaction you and I have arrived at this step and have become a reality that we can comprehend, that we can understand each other, the world around us, and, yes, even death.
What is death then? Suicide from what, to where?
On the death of a very dear friend, one year before my propulsion to this hell, a time when I continually berated myself and struck out at illusionary heavens for my misfortunes, I was told by a wise woman that “this is not about you”. I have lived by those words ever since, difficult though it has often been.
So this injury is not about me. The pain is not about me. None of this is about me; it’s about the cosmic nature of reality and what “we” are. Pain, weakness, and deprivation, or beauty and the ultimate understanding of what it means to be “real”—for us and every single thing around us?
So I crawled off of narcotics, and the pain is, sometimes, better than it was. And sometimes I still wish that I had “sucked the pipe” when I was on narcotics and struggled not to take away my own life. But I didn’t and probably won’t tomorrow, so I get up every morning knowing full well that I am going to get my teeth kicked in and absolutely no one will give a shit—except maybe you—and maybe, just maybe, someone else that has come to this level of understanding, met a dead end, and struggled to understand what it means to be truly alive.
Onepaw

Hi Punchy Sue
I replied to u once already. My Son was born with 2 good healthy arms, it was that blasted accident that stole the use of his right arm. He also broke virtebra c7 fortunately spinal cord remained in tact. 6 weeks aftyer accident and operation he had to return to rehab for a week to help him live with his disfunctional arm. He saw some horrible sights that week. young kids as young as 10 paralysed from the waist down a young lad 0f 18 paralysed from ther neck down (which could have been him) and he suddendly realised how bloody lucky he was and he got on with life as best as he could.

Take every bit of surgery they offer you. ok your arm will never be the same again but you will eventually be more or less pain free. I know as the saying goes another persons tooth ache doesnt help yours. but take all pain killers the Doctor offers you and surgery and one days you will be saying "thank god I didnt end it all".
Good luck! be strong and push for surgery as soon as they re-attach the nerves to the spinal cord the pain will ease considerably.

Hi Punchy Sue ,
I posted the previous reply, I have just re-read your letter. I now know you have had surgery and medication you really are in need of some form of counselling and help with your depression, it seems surgery and medication are not enough you are still greving the loss of your arm (all be it still in place).

This injury is very cruel. I too was involved in a car accident, back on 20 July, which left severe nerve damage to my right arm. I am only 3 months into my recovery and so far I have very little improvement, if any. The pain seems to progressively get worse, and the chances of me ever being able to use my right arm seems bleak. I have also contemplated suicide because of this injury. What keeps me going hope and faith that my life will improve. I am scheduled for an EMG on 27 Oct. and from the results the Dr. will determine whether or not to operate. Have had your operation yet? I would appreciate if you can share your experience with me. Thanks, Fred

Hey Fred

I had nerve graft surgery Oct. 2003 at Hopkins. During exploratory surgery, they determined that there was too much tissue damage to find out what nerves where avulsed, so I'm diagnosed total 5 avulsions. The grafted phrenic nerve (controls diaphragm) to my shoulder muscles, spinal accessory nerve to posterior shoulder area, and intercostal nerves 4-6 (between the ribs) to musculocutaneous nerve (controls bicep and arm flexion). Also had intercostal sensory nerves connected to median nerve (travels down arm).

Results: regained some shoulder muscles, at least enough to keep the head of the humerus (top of long arm bone) in the shoulder socket. Also gained a little more sensitivity to touch above the elbow.

Good luck with everything. In my own opinion, wait to you get some concrete answers before going down the suicide road. Everyones injury is different as well as the pain. I'm on a three year post-op plan before I make any big decisions.

LOVE SUSAN

dear sue
i know exactly how you feel ,i dont know how i have sirvived 5 years of this torture 5 years its so hard to beleive that i have put up with this for so long ,the constant crushing,burning acking like someone is attacking my arm elbow with an angle grinder its so bad you cant even discribe what its like the words just dont match the pain,i had a nerve graft 6 months after the accident the docters told me it might help and i might even get some movement back but it didn,t help,in australia there isn,t really anyone who speicializes in bpi ,but in america and europe there are lots of doctors and hospitals that do ,the only thing that they have offered me here is an operation called drez,it is a major operation and very scarrie 6 month recovery and a chance i will lose the use of my legs,the only thing that seems to dull the pain a bit is oxycontin,it helped a lot for a while but then i needed more and more i am know trying to get off it because of side effects ,i dont know how a person is suposed to live with this sort of pain , i am very lucky as my wife is a good person and we have two great kids my son joel is 15 and my daughter shaye is 12 they need me,and i love them so much,i dont want to die like you i just want to be out of pain,there is a new drug i have been reading about it is still only in trials over here but in america i think it is availible it is it is made from the cone shell toxins i think it goes under the name of zinkatide something like that i read about a guy over there who has put up with this pain for 20 years and after a day of useing this the pain was gone so please sue look into it it might be what were looking for,on my way home from work a truck came around the bend about 5 feet on my side of the road ,the driver was drinking a beer as he ran over the top of me and kept going leaving me for dead surely we wern,t kept alive just to suffer the arm we can live without but i dont know how long any one can live with this sort of pain,if there,s anything i can do to help sue plaese email me petermaher1@mac.com best of luck your in our prayers,pete maher and family

That goes for me too, Sue (kinda rhymes doesn't it?)
pkennedy@meltel.net Just don't put anything in the subject line like: "Free Meds", "Hot st0ck", or "rolex watches", and it should get through.
Onepaw