Denial? Or a full recovery?

Treatments, Rehabilitation, and Recovery
jennyb
Posts:1183
Joined:Fri Nov 02, 2001 5:24 pm
Injury Description, Date, extent, surgical intervention etc:January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Denial? Or a full recovery?

Post by jennyb » Tue Sep 02, 2003 8:31 pm

As many of you know, I have a severe tbpi, all signs point to full avulsions, altho, as in so many cases, biceps did return to life after 2 years, but better late than never eh? It isn't of any functional use so maybe it shouldn't have bothered....
Early on, I decided that pursuing surgery was NOT an option for me, I was 21, had a busy life and the trauma of the accident had already taken more of my youthful life than I was willing to part with. I was adjusting very well to one handed life, the pain was subsiding, so I declined surgery. Without going into boring detail as to why, but following a LOT of research, I would do the same today. MY ARM, MY CHOICE. I don't want to debate pros and cons of surgery, I want to talk about attitudes to people who decide NOT to pursue surgery.
As I have stated many times on these message boards, I consider myself fully recovered from tbpi. I do have this flail arm which is getting annoying, but apart from that, I can't say it has affected me very much at all. I know I've been very lucky in this and am grateful every day. Actually, that's a lie, I don't even think about either of my arms any of the time (unless righty hurts....)

But, there are some who do not regard me as lucky, they think I am in denial. In denial of what? In denial of the fact that I have 'something wrong' with me, how can I possibly live this way.....refusing to see that a) I don't consider there is much wrong with me and b) I DO live this way and have done for decades.... they say, because it's too late for surgery for you, you have to pretend there's nothing wrong, you're not dealing with 'the arm' etc etc etc
Sometimes I am driven to defending my position quite vehemently, I've been discussing amputation with my AB (able bodied) friends, they are shocked, disbelieving, sending me websites from doctors who can 'fix my arm' ho hum been there, dealt with that, read the adverts....I know it means they care, but really, saying "Have you thought through this? Have you discussed the options?" to someone who has lived 23 years without a dominant arm , raised 3 kids and worked full time is certainly a case of denial, but not on my part.....

I am sick and tired of this attitude. In honesty, I don't have to put up with this kind of crap from my fellow disabled peeps, they tend to accept my point of view even if it doesn't tally with their view of the bpi, but the AB's and their 'concerns' are starting to get me down.
How can I help peeps see that to me, disability is ONLY disability as long as it causes problems in your life, and as long as it bothers you personally. If it doesn't bother me, but DOES bother someone else, surely THEY are the one with issues about disability, not me....and how is that ME being in denial? Do people really think that refusing offered surgery is NOT dealing with the injury? Even after the success I've made of my life for all these years, they think I haven't dealt with it?

Sorry to go on (and on and on) but since I mentioned amputation I'm getting a lot more of this crap and I just wish I could help these poor people see past their OWN prejudices about disability and acknowledge me and my life without a right arm.
And yes, I'm angry.......

John K
Posts:108
Joined:Sat Nov 03, 2001 7:06 pm

Re: Denial? Or a full recovery?

Post by John K » Tue Sep 02, 2003 9:34 pm

Well said! I too have been thinking of amputation. Whenever I mention it though i get the same reaction. I have only lashed out once. Arent you proud of me? He is my best friend I thought of all people he could identify with what i'm going through. His reaction reminded me only another bpi person knows exactly what we are faced with. They just dont understand i've been through all the drs and i dont see advantages of other surgeries and i refuse to harvest muscles or nerves out of the good working parts of my body. I get along just fine in my one armed world. I just think if i could get rid of this anchor on my left shoulder things MIGHT be easier. But i did have one customer offer to make me an orthotic to help relieve the weight from my flail arm. So I will try that.

I do have one concern with amputation my bpi arm seems to heal slower than the rest of my body does anyone know of the risks of healing after amputation. This will be a topic for my drs if i decide to look further into amputation. Also my diaghram is paralyzed so that makes it difficult to go through surgeries. Oh yeah and im a big chicken too probably my biggest obstacle.

John K(pushrod243)

Henry
Posts:160
Joined:Wed May 14, 2003 1:30 pm

Re: Denial? Or a full recovery?

Post by Henry » Tue Sep 02, 2003 10:15 pm

Hi Jenny,

I had that conversation with my mom and dad tonight. I was telling them about this board, and how rewarding it is to part of a community of like minded/bodies souls. We talked of how relieved I was after the amputation, and how that decision closed the door on that section of my life.

You and I have talked about amputation before, and you know what I think, but your point about ABs is a good one. You are so right in that they don't get it. It is the same with the pain. Sympathy and understanding are appreciated, but you can't talk the talk 'till you walk the walk. I don't fault them, I just don't tell them. The people that know, outside my family, are those who know when to step back and let it go.

When others inadvertently find out and the predictable questions and suggestions about medicines, therapies, alternate therapies, etc. are trotted out and rejected by me, the confusion is almost comical.
* Aren't all problems fixed by medicine? Nope.
* The miracle of modern science will help. Uh huh.
* Surely it will get better over time. 22 years and counting.

I truly believe that for ABs we are reminders of the failure of modern medicine. Our conditions expose the shortcoming of science and the frailty of the human condition. Looking at us scares the pants off of them.

The irony is that we are icons of strengths, and show how resilient and determined the human condition is. The 100s of messages on this board offer indisputable truth of that. We deal with horror and win. And start again the next day. We have jobs, families, lives, and reach out to help total strangers achieve the same.

The ABs cannot help themselves. We don't need to help them. As you say, it is their problem. You went through the fire, they can only watch from the other side, safe and comfortable, and are left trying to understand what is unknowable unless you are there.

Do what you gotta do for yourself. No one else can. You know that you've dealt with it, and they can never deal with it because it is not theirs to deal with.

Hang tough Jenny.

david wilson
Posts:92
Joined:Tue Sep 10, 2002 11:53 am

Re: Denial? Or a full recovery?

Post by david wilson » Tue Sep 02, 2003 11:49 pm

Jenny
After 23 yrs of dragging around your flail arm why would you even talk to the ABs about something they don't understand? Make the call and go on. As for other BPIs saying you are in denial they are not looking at the reality of your 23 year old desition and that is that you have all the recovery you are going to get. Quit being so nice and recognize that you are the expert in your life. I think it was Will Rogers that said " the only problem with arguing with a fool is that the spectators have trouble figuring out which one is which"
Thanks for being on the boards with your support and concern for all of us in need. You are a gem and will continue to be a force in this comunity with one arm or two. RED

lizzyb
Posts:809
Joined:Sun Nov 04, 2001 6:36 am

Re: Denial? Or a full recovery?

Post by lizzyb » Wed Sep 03, 2003 7:28 am

WELL SAID you guys!! I can relate to so much of what you have all said, especially Jen as we discussed this subject several times when we met and via email.

I too gave up on a surgical 'solution' many years ago even though I did have an intercostal nerve graft within 3 months of being injured. To be honest, in those days I was so bewildered by the whole shock and horror of the injury that I just cruised along with what the doctors told me. It seemed like a good idea at the time; looking back, if I knew then what I know now, I wouldn't have bothered. Yes I can bend the elbow, but so what? Although the fact that I can bend my elbow is interesting in a way it is of no practical use to me whatsoever. (That is in no way knocking the surgeons skills..I am in awe of what these people can do.) It maybe helps my arm to look a lttle more 'normal' and in this way I suppose it spares the feelings of the ABs who are quite shocked by the sight of the arm sometimes, and it gives the surgeons something to do in a pretty hopeless situtation, but I repeat, for ME it is of no practical use.

At ten years post accident, I haven't lived with this injury as long as Jen and others on here, but I had pretty much made up my mind after 2-3 years that I wouldn't consider any further surgery to regain function. No surgery is ever going to give me back 100%, or even close to it, so why bother? I very quickly got used to life one-armed and honestly, if it wasn't for the pain (EVERYONE would agree with me on that one) I never notice most days that the flail arm is there. My brain and I have forgotten it.

Over the years, I have had so many well meaning friends and strangers giving me advice and urging me to find a 'solution' that they just KNOW is out there that now I don't ever mention the arm or my attitude to me having further surgery unless someone really pushes me. I just tell them that the situation is permanent and incurable. That and the hard stare USUALLY prevents any further conversation on the mattter....but...there is ALWAYS the odd one who insists there must be a cure somewhere and you find yourself explaining the whole thing over and over again. For example...

I have a very good friend who is really down to earth on most subjects, but if we ever find ourselves discussing my arm, inhevitably she comes up with a theory that all I have to do is meditate deeply and get in touch with my spiritual 'gods' or see a faith healer, believe, and it will heal itself...I think most of us long-termers have come across people like that! As far as I am concerned, she is the one with the problem, the one in denial, and can't face the fact that there ARE some medical conditions/disabilities that will NEVER get back to the way they were. Usually a bit of humour and gentle derision of this theory gets her off the subject, but I am SO tired of explaining it to her...

Some people never get it, and I can understand why...as Henry said, you have to walk the walk...that it why is was so fantastic to meet up with a load of peeps with a TBPI at our camp/gathering last month; no-one had to explain anything, we weren't bombarded by advice from the armchair psycologists, we had a laugh..lots of 'em in fact...and I (and others I hope!) left there much refreshed and inspired somehow...it was such a relief to be among people who just....well...KNOW....and not feeling obliged to explain a damn thing or be accused of being in denial. We each had the good manners to assume that everyone there, whether they had or were going through a programme of surgery or not, had made the best decision FOR THEM and each treated everyone elses personal decisions with the respect they deserved, without anyone trying to force their own opinions on anyone else.. Long may these meetings continue and grow....

Keep onto it Jen...ignore the amateur psycs and shrinks whether they're ABS or BPI's (or even...dare I say it...surgeons/drs) and just laugh it off mate; as you say, mostly what they say reveals a lot about THEMSELVES being in denial.

Liz x

Francine_Litz
Posts:2199
Joined:Sat Mar 22, 2003 9:03 pm

Re: Denial? Or a full recovery?

Post by Francine_Litz » Wed Sep 03, 2003 8:56 am

this may seem like a stupid question but I honestly don't know the answer... if you amputate your arm, do you still have the nerve pain?

-francine



Henry
Posts:160
Joined:Wed May 14, 2003 1:30 pm

Re: Denial? Or a full recovery?

Post by Henry » Wed Sep 03, 2003 10:18 am

I can't speak for everyone, but the pain stayed for me. I never had pain that was connected to surface stimuli, so the amputation had no effect.

allison d
Posts:85
Joined:Sat Mar 08, 2003 1:49 pm

Re: Denial? Or a full recovery?

Post by allison d » Wed Sep 03, 2003 10:36 am

Thank you all for posting to this topic. I couldn't have expressed my own thoughts regarding recovery/denial/surgery any better. However here's my two cents.
I had my accident 8 months ago. I have no function in my right arm due to the avulsion of all 5 nerves. I've researched the boards and read most of the posts relative to my situation. My neurosurgeon advised me that surgery was not an option for me after the neurosurgical team (5 of them)reviewed my mri's and a ct scan.
I did however research the internet and noted that surgery is being done on this type of bpi. I discussed this with my neurosurgeon and also with my orthopedic surgeon who had worked in a bpi specialty ward prior to his move to Winnipeg. (I see an orthopedic surgeon for a broken bone in my 'good' hand). Both surgeons agreed that the minimal results they have witnessed, achieved through a "sucessful" surgery, was not worth the pain and suffering/future PT etc/etc etc... I was actually relieved when I heard this!
I didn't want any surgery that wouldn't give me back full function. It's my opinion that succesful would be full return of function, not bicep return that would enable me to hold paper down while I write! The arm works perfectly fine as a paper weight now.
I believe the people around me were and are more mentally and emotionally effected by this than I am.
I could not believe how fast the human body adjusts/adapts/compensates to being one armed. Tasks that seemed impossible initially after the injury(like putting on long sleeved shirts), are possible.
I explain to people that my life now is slower and more relaxed, not such a bad thing? Why does not being able to peel potatoes anymore(although some of you can, not me yet) seem like a bad thing? I don't miss it a bit. The packaged powdered ones are pretty good!
I just returned from the UBPN Camp 2003. I went to obtain information about pain mgmt and physiotherapy techniques, but mostly to talk with other bpi adults and get the information that only people living with this could answer. Thanks to Courtney, Eric and Ryan. I now have useful answers/techniques to solve and combat my every day situations and future endeavors. You can't imagine how helpful those sessions and late night talks were.
I feel my decision to not have surgery is justified and that I have dealt with this injury. However, I was approached by individuals without the bpi injury at camp who demanded explanations as to my decision and declared that I had better deal with this injury and get surgery asap. I was both offended and shocked by these attacks.
I'm doing just fine, after only 8 months post injury, and with an injury to my left good hand - I had the cast removed from it a day before I flew to camp, I was able to take a vacation by myself.
I will be fully recovered from my accident when the good hand heals. The right bpi arm has recovered as the bruising and pain in my shoulder area from the accident have healed, I think.
Right now, I consider myself almost fully recovered and definitely not in denial. Denial my a$$. I believe that my 'recovery' is happening so quickly because of the brutal honesty of the injured persons' posts. These people have at least 10 years experience with this, and know of what they speak. Thank you to Jen, Henry and Liz. They are my mentors! They have researched the bpi world fully and I can trust them.

Allison Day.




lizzyb
Posts:809
Joined:Sun Nov 04, 2001 6:36 am

Re: Denial? Or a full recovery?

Post by lizzyb » Wed Sep 03, 2003 12:33 pm

Just a quick reply to Francines question about amputation; empirical and anecdotal evidence provides proof that neuropathic or de-afferentation pain such as that associated with avulsed nerves will not be alleviated by amputation of the affected limb. Amputation should never be regarded as a pain relief measure.

It CAN however help with sometypes of pain in the shoulder and neck caused by the weight of a flail arm and any pain caused by surface stimuli that Henry mentioned.

jennyb
Posts:1183
Joined:Fri Nov 02, 2001 5:24 pm
Injury Description, Date, extent, surgical intervention etc:January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.

Re: Denial? Or a full recovery?

Post by jennyb » Wed Sep 03, 2003 7:15 pm

re amputation-as Liz says, it won't deal with the neural pain, I've always known that. But mine is often set off by the dead hand getting cold, amputation will therefore remove that stimulus. It will also greatly reduce the dead weight hanging off my back-I don't have many secondary issues as yet, but I will have if this arm carries on dragging my back to one side. I'm very active, but I'm 44 now and I can see that I'm going to have to work harder to stay fit-that means more running, more riding and more swimming, all things that will be much easier after the chop.

Allison, I hope you told those busybodies where to get off. I know they think they are helping but they will NEVER 'get it'. I'm sorry this happened to you. Next time, just take a look at them....are they physically perfect? Is ANYONE? Well, virtually every condition from weight to wrinkles to spectacle wearing can be 'cured' surgically.....spot their particular 'fault', and suggest they stop being in denial about it and get it sorted surgically a.s.a.p! Then, they might get it.....

Someone brought up that other most irritating comment...."What if surgery advances in the next few years and they could fix it?" What do you think it is about "I am totally adjusted to one armed life" that they JUST DON'T GET? If they spent half a second thinking about the bloody nuisance of having a dead arm dangling just in case some nerve doctor gets lucky in my lifetime they might save themselves a lot of stupidity.
Thanks for the kind words guys, don't get me wrong, I don't give a monkey's what other people think of me, but I wish they wouldn't regard the personal matter of MY arm and its fate as public property. I try and say moderated versions of this stuff to my tormentors, but, surprise surprise, when a crip (saintly, heroic-you've seen the stereotyping) turns nasty, then, apparently.....it means I have 'unresolved issues' 'a chip on my shoulder' bla bla.....so, I'm just venting here so I can carry on my saintly angelicness in the AB world out there.......Take care crips :0)

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