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eddie103

:::Family Matters:::

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::: Family Matters :::

My wife came home from work last night and asked if I had read the thread on Martine Wright. She had and it upset her. Not that her story is not a sad one but rather that many facets of her story are “similar” to our own.

She has asked me to post a request for responses and / or thoughts from family members who also have lived through your’s and mine amputation / accident etc.

When crap happens to someone, the effects of this crap is felt by others surrounding you.

Her point is that there is, again, little mentioned any where about the affects on the family and / or other family members.

How has your situation affected these persons, etc?

I will post my own observations shortly.

ED

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Hi Ed

I will touch on the financial side...the emotional side I will get to at a later stage, maybe. I might ask my mom to comment. We'll see. We don't talk at a touchy-feely level that much.

When I lost my leg (vehicle accident) I had no medical aid or insurance. I had an unemployed husband-from-hell as far as making money went. Our government's third party insurance or road accident fund, flaty turned down my claims. Not one red cent.

My closest and almost only family, is my mother. She was 55 when I had my accident. My husband was unemployed.

I only found out a while later that my mother cashed in every single one of her insurance, pension and endowment policies so that she could keep us going and look after me. It's ten years later, and she's still working. We haven't caught up yet. I doubt we ever will.

I can't begin to imagine the stress I have put her under - she is a single middle aged woman with absolutely no nest egg. It was a financial disaster for her, never mind the emotional holocast she had to go through. I'm her only child.

Ally

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Hi Ed,

My story is maybe a little different, as my step-dad was driving the car that hit the wall that fell on me - causing my amputation.

It's been hard for him to cope I think, and at times I see that it catches him out and I feel awful for him. For me, there is no blame - it was an accident - and I don't see him any differently now, than before. Recently, coming up to the 2nd anniversary, he seems different, and I can tell that he's thinking about it - plus the fact that I need more surgery for my knee and now these neuromas - can't be easy for him.

Really hard for my Mum, she has me, going through all this, and she has her partner who set everything in motion, but who really needs her support too! She has to be there for both of us, and sometimes I will say that I understand my step-dad's moods etc., cos I've been there with him! Mum's great and accepts the way things are, and is always there for me, and ready to help when things aren't good.

My sister couldn't cope at all, at first, and it took time for her to even be able to look at my stump (at the time, she lived with me). She couldn't handle seeing me and the day of my amputation, she sat there and cried when I came back to the ward. Now, the anger has gone, and she is aware that sometimes I need to do it a little differently, and sometimes I struggle, or have an off day - but she's cool with it all now.

My Dad - well he takes everything in his stride, but I know that he used to try really hard not to be upset when he saw me, ( I could still see that he had been crying though) and he sort of just coped. Now he's like a rock, he listens and sees when things aren't good, and is just there for me.

Friends are mixed - some have been fantastic and there for me, and some - well they can't cope with seeing me, my leg etc., and so they just don't call - and I've stopped calling them - only so much you can do to reassure someone that you're still the same personality!

The journey so far has been fast, and filled with ups and downs for everyone. So, there it is in a nutshell, the after effects of an amputation - all the emotion, guilt, pain and then the getting back up and on with it - never really any choice from my point of view!

Sue.

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Sorry guys, forgot the most important people - my sons.

They were 8 and 6 when I had the accident, and they were amazing through the whole thing. They asked questions and I kept them informed all the way, and they visit the limb centre with me sometimes also. My eldest has become such an understanding lad, helpful and aware of others and I think this is a good thing. My accident hasn't had an impact upon them, as to them, Mum is still Mum. :rolleyes:

Sue

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This is a hard story for me as my accident caused my family and friends great hardship. It strengthened me and my husbands love and friendship but brought huge strain on resources and emotions.

My amputation on the other hand almost five years later has given me back my life. While hard initially for my kids and husband to cope with our world is ten times better and getting better every day.

My kids have become really good at cooking and cleaning. They have a better understanding of disability and what it means to other people. It took them a while before friends etc were invited back to the house. Now we have band practice, footy matches and bbqs down to a t.

We are a much happier household now. Yes I still have bad days and yes some of my close friends could not cope and have walked away but hey thats their loss.

My parents(who live abroadso I only see them once or twice a year) have rejoiced with the rest of us. No pain, much much more mobility any obstacles I now face we all face together.

I hope this has helped. Being in pain long term was the worst thing ever. I was bad tempered and edgy a lot of the time. Thats when my family suffered the most.

Best wishes Rachel

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I know my parents feel some guilt. It was their call for my foot to be amputated as I was only 5 at the time. Their feelings of guilt are balanced with the knowledge that I was (am) better off than I would have been.

I have made an effort all my life to make sure I have a positive approach to being an amputee, so I hope that everyone in my life has seen it as a possitive experience . I've tried to be a person first and an amputee second. That doesn't always work cos I have some "special" needs that do get in the way. But I do try to minimise the impact on my friends and loved ones. I think it has had a good impact on my kids. They have grown up with my leg in their lives and (I hope) made them better people too.

Cat

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I agree Ed, that when crap happens to someone, it does effect those around them and your wife is right, very little is mentioned of this. It seems, to me any ways, that at the beginning we're usually so involved trying to deal with our own emotions, recovery, etc, that sometimes we tend to lose sight of the effect it can have on family, caregivers and friends, though certainly not intentionally. After all, it's a new world for them as well.

My wonderful husband, my rock, he held things together, even when I wasn't sure, if I had anything to hold together. We had some bad days, of course, but when I started focusing on his emotions, as well as mine, things became much clearer to me. That this wasn't just about me, that I had a partner to consider and that his life was turned upside down also. It was then, that we seemed to be more on the same page with each other, sharing our emotions. But the years have passed and once again, I wear the pants around here!!! :P :blink: :lol: ;)

My son (only child), married with two children. Though I could see he was having a hard time at first, he never said anything and was always there for me. They'd come over quite often, but if the amputation was brought up, the subject seemed to get changed most of the time. Which told me they were not very comfortable discussing it and I would never pushed it on anyone and nowadays really no need to. :D

As far as family and friends. My family didn't adjust to well at first, nor did his. With his, I think it was all the attention being giving my way, didn't seem quite necessary in their eyes...... oh well!! :rolleyes: :)

My family, IMO, just wanted me to act as though it never happened and that's not what I'm about, it happened and that's that!! I wasn't going around hiding myself for anyone. I tried to understand their feelings, but enough all ready!! Anyways, the years have passed and so to have any misunderstanding. :blink:

Most of my friends were fine with it and the ones that weren't, they've moved on. I feel and have always felt, that if others can't see me, for who I really am, then they need not see me at all. :ph34r:

So by all means, be aware of the ones around you and their feelings. Let them know just how important and needed they are in this new journey ahead. ;)

Sheila lbk

Maine USA

Keep Smiling :)

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this wasn't just about me, that I had a partner to consider

Soooooooo true, soooooooooooo true!!

My family, just wanted me to act as though it never happened

Soooooooo true, sooooooooooooo true!

It's the balance of these that must be achieved!!

Sooooooooooo true, soooooooooooo true!

ED

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Hi all, Great post Ed ;)

As my partner was involved in the process prior to amputaion (I had elected surgery after many years of suffering) I assumed that they were ok, but actually they have found it quite difficult. Sometimes I think it is harder to watch someone you love suffer pain and frustration than it is to suffer it yourself.

And the journey from amputation to walking.....it's such a long and slow one! :( and it's hard for them to stand by and watch. They know that they will never fully understand how I feel, that can make them feel pretty helpless.

Reading this post made me really think, my partner has never expressed a desire to read the stuff on here, but have I excluded them from it, even if unintentionally?

My family are pretty uninvolved, they just sort of ignore the fact that I have had my leg amputated. I think that they expected me to have the amputation, get a prosthesis and then walk like normal.

I have found the reaction of friends upsetting, they cannot deal with it, but I can't just pretend it has never happened, it's not going to grow back! :D

Pehaps they will be better when I have my prosthesis home and they can then pretend I have a real leg!

Thanks for this.....It's made me think :rolleyes:

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I think that they expected me to have the amputation, get a prosthesis and then walk like normal.

..........not only walk BUT do everything you did before!!!!

ED

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My amputation was many years ago, and I was 13 at the time. In those days there was no internet, and my doctors/prosthetists knew of no other children my age...not even young adults... that I could talk to. I don't often "go there" because it was such a horrible, nightmarish time in my life.

Shortly before Christmas I noticed a lump on my left tibia. I thought I may have bumped it on something, but the lump didn't go away. My Mom took me to the pediatrician who x-rayed it and immediately referred us to an orthopedic surgeon. He had warned my parents that it looked bad, but they didn't tell me anything until after the biopsy. In fact, they weren't even the ones who told me. I remember being wheeled by an orderly into a small conference room where my doctor, a nurse and my parents suddenly appeared. My doctor told me that the lump was cancerous and I said, oh, so you need to take it off, right? It was then that he said they would have to remove my leg above the knee. He had tears in his eyes. I didn't see my parents because they were behind me. I just remember screaming...and screaming...and screaming. Then I turned around and looked at my parents, hoping they would "fix" it and "make it OK" like they always had. Of course they couldn't, and I went from being shocked and scared to being angry. I told them I wasn't going to let them cut my leg off, and they said "OK....if you feel that way in a week when your surgery is scheduled we won't make you do it." I can sort of see what they were doing, but giving that kind of power to a 13 year old was so overwhelming. And that was only the beginning. After I decided I had better have the surgery so I could live, the subject wasn't discussed anymore. My parents took me to doctor appts., rehab, etc., but acted like everything was back to "normal." Not that they didn't love me, but that was the way the coped with it. I played along and found that as long as I was "OK" then everyone else was happy. Again........that tremendous power I held. I told my parents I wanted to hide the fact that I had an artificial limb and they said fine when all I would wear was long pants/jeans....even at the beach. And no one even thought of suggesting that I take my leg off to swim when "others" were around. My Mom even made up what she called white lies for "nosey" people who asked why I limped. She would just say I injured myself and justified the lies by saying it was none of their business. She was trying to protect me, but what happened, of course, is that I became more and more ASHAMED and so ALONE.

Many, many hours of therapy and years of life later, I finally mourned my loss and moved on. What I would urge the parents of a child, or really any loved one, to do is to let your child know it is normal and OK to feel depressed and angry at times. Be eager to help them in their journey....encourage them when they want to try new things, and always include them in plans and stand proudly by your child when they are putting themself "out there". Hold them and let them cry..tell them it's OK to do that. Don't EVER act like nothing ever happened...there is a big difference between that and accepting what has happened and being comfortable with it. Keep the lines of communication open, and don't be put off by an angry outburst. Your loved one will have good days and bad ones, but even the bad ones will be better if they know you still love them, support them, and are proud of them, just the way they are.

I'm now married and have two small daughters who think Mommy's leggy is "cool". Geesh....I could go on and on, but I think I'll close for now. Hopefully, somewhere in this "novel" is some good advice! :rolleyes:

Karen :-)

AKA

Orlando, Florida

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My last amputation was when I was 14 yrs old - I had my amputation for different reasons to you Karen...I elected to have my amputation. I didn't have counselling until many years later and neither did I have pain relief - apart from the odd asprin or paracetamol. It was very hard...

...but, your posting was great, as it said it all for me:

What I would urge the parents of a child, or really any loved one, to do is to let your child know it is normal and OK to feel depressed and angry at times. Be eager to help them in their journey....encourage them when they want to try new things, and always include them in plans and stand proudly by your child when they are putting themself "out there". Hold them and let them cry..tell them it's OK to do that. Don't EVER act like nothing ever happened...there is a big difference between that and accepting what has happened and being comfortable with it. Keep the lines of communication open, and don't be put off by an angry outburst. Your loved one will have good days and bad ones, but even the bad ones will be better if they know you still love them, support them, and are proud of them, just the way they are.

Lizzie

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This is so true! From what I read, sadly, there's a common thread in the behavior of friends and family members.

My husband: He couldn't handle it at all, so he very quickly became my ex-husband.

My mother: She still has some pretty serious issues with my amputation. She seems to think that life is somehow punishing her by giving her "perfect little daughter" a visible physical difference. Our relationship has survived this, but just barely.

My father: He's learned that ignoring it won't make it go away. Even though he was (understandably) lost at first, he's figured it out along the way and he's helped me through some tough moments.

My sister: Ah, my little sister... she's decided it's her job in life to make sure I'm eternally challenged by situations she contrives. She just doesn't know when to stop. I'm sure she does it to "show me" I can do anything I want to, which I mostly can, but she fails to recognize the difference between "Things I can't do" and "Things I don't want to do"... which is why we had a huge fight about the lack of effort I was putting into climbing that artificial rock wall. :P

My daughter: Kids are so wonderful! She's never known me with two legs, so it's no big deal, but she's able to compare between "her mommy" and "other kids' mommies", sees the difference... and I always win. :D

My friends: Some changed, some left, some got told off, some "got it". The cool thing is I've also made new friends (hint, hint).

The thing to understand is people will view things from different angles. Some will see you and think "Oh, wow. If that ever happened to me, I'd rather die" and, being constantly reminded of their own fragility and their fears, will run from you very quickly. Others... a lot of them, unfortunately... will instantly jump into "Oh, you poor cripple" mode. That, obviously, sucks but it's sometimes up to you to change their attitudes. It's never a good thing if they change yours, specially early in your life as an amputee, so you may find yourself avoiding them. Others still manage to get over the shock and will slowly figure out you're still you. Those are the ones you don't want to let go of. :)

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It really hurt at the time, and I've never forgotten him saying that. Ironically enough it turns out that one of his feet is starting to turn black from diabetes

Sad, but deliciously ironic ...

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Ironically enough it turns out that one of his feet is starting to turn black from diabetes

Sounds like poetic justice to me. <_<

You can bet that when his foot comes off, he'll soon be wanting and needing a prosthetic foot off the guy "that never amounted to anything."

Glad you never let his comments get to you Marcus. :)

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This thread has really made me think about others reactions to the amputation, and I have recognised so much of what other people have said in my situation it is quite uncanny. I don't think before that I had consciously really thought about what the people around me had been thinking - have been too busy trying to get back to normal for the past 9 months -thanks for posting it Ed.

My boyfriend - has been absolutely brilliant in every way. Says he doesn't see me as any different now to the way he saw me before and has even named my stump eric. I think the one thing that gets to him though is my nagging at him to do stuff for me when my leg is off. I will be sitting on the sofa, and decide I really want a cup of tea, and it just seems like too much effort to go and make it myself, and I can't carry it into the living room anyway, and so I ask him to do it. And then he sits there for 10 minutes and doesn't do it, and it annoys me because if I could make it I would have made it then and there, and so I nag him, and that really annoys him. Also, i don't think he really likes to talk about it too much. That is it, really.

My Mum - bursts into tears at regular intervals whenever I see her, and tells me that she cries every day for me. It drives me insane as I am certainly not crying every day. She came to see me last weekend and on Saturday my leg was hurting a bit so I took it off. She burst into tears. I shouted at her, and she went to bed crying. Drives me insane, but I know she loves me so I try not to get too irritable with her about it - it can be hard.

My Dad - has become fiercely overprotective of me. Wanted me to stop living in London and go back to live in Manchester near him when it happened. It can get quite smothering, and so, again, I am trying to keep him at a distance as much as possible.

And finally, my friends - have all been fantastic. My relationship with all of them remains exactly the same as it ever was, and they have been my rocks throughout all of this. Funnily enough, I have noticed a bit of a difference with my boyfriend's friends though - we had some of them round for dinner the other week and I was saying something about the leg, and I got a very snide remark from one of them about how I was evidently turning into "one of those people with nothing to talk about but their ailments". I did feel rather like smacking him at that point and told him so.

So there we are. Thanks again for posting this thread Ed, it really has made me think that it is now time, 9 months on, to start thinking of others as much of myself - especially my poor long suffering boyfriend!!

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hi all

yet another post to get you thinking again (good one ed)

Its been almost one year since my accident (alk) and time to think about others ,

after my return from hospital, i wasnt a very good person, my left leg was gone and my left arm was as good as usless and i was pretty much beat up as a person can be,

however rather than sit back and recover in my families care I JUST HAD TO DO EVERYTHING MYSELF, THIS CAUSED SO MUCH HURT AND HARDSHIP FOR MY WIFE AND CHILDREN.

i put them in a no win situation, if they offered to make me a cup of tea i would make some cutting remark about me not being a cripple or some other remark ,if i made the tea i would spill it , or make yet another cutting remark about how lasy and uncareing they all were.i really was a sh***t. not the person i was at all.

it was the same when my folks came up, when workmates called round, yet all the time my wife and children never complaned or anything .

then one day out of the blue i decided that i HAD to leave and "get my act together" before i did something really stupid.

so i rented a flat for six months,again my wife didnt stop me but let me know that she was just a phone call away and i can come home anytime i was ready.

once in the flat i set about proving (to myself) that i wasnt totally useless, its strange now but what went through my head is beyond words.

on the financial side i work for a good combany with a good sick pay scheme so money wasnt that much of a problem.

well some of the stupid things i did i went hiking up the hills (i had only had my leg for a few weeks) 12 miles on my first walk in snow and ice (how stupid was i ).

went back to work ,only to be sent straight home and told get better then come back.

i went days without sleep walking the strees at night, looking for something i dont know what (i still dont know)i went walking in the woods miles from anywhere for days at a time without telling anybody,

i got offered to see a shrink ,i just laughed it off and told them what they could do,

i was hell bent on proving to myself? to others that i wasnt hopeless ect.

All the time this was going on my wife yvonne was quitly in the background watching over me or trying to. then one night or should i say early morning on one of my night time walks i saw yvonne sitting in the car watching my flat, she was crying, suddenly it hit me !!

it wasnt me that was hurting it was yvonne and my family i suddenley felt so low i cant tell you how bad i felt.so i called her , and we talked for hours and hours (a good tip dont keep it bottled up talk) we got the kids invovled as well (kids :- kerri 19 mark 16). i still couldnt return home straight away, but over a few weeks i managed to return home without any problems, all my frends were over the moon that i was "back" and to date i have had no bad things happen except what I PUT EVEYONE THROUGH . so on this case there is a happy ending. but if there is any one new to this forum reading this DONT make my mistake talk and then talk some more.

sorry to ramble on so much i guss that im still going throu the "healing process"

thanks for reading this and rember keep talking

mick (very happy to be home)

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Wow Mick I'm glad you got through it :)

What an awesome family you have!!!!!

Cat

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Well my hubby married into it, so to speak, as I lost my limbs when almost a teenager. However remember warning him at the time there would be difficult times, or more to the point times when I was difficult! Anyway it didn't seem to bother him too much and we are now 28 years and 3 children later.

Got to say there weren't too many problems with the limbs up until about ten years ago, when I developed problems thro a change in services, it was really difficult for about a year when I couldn't wear the limbs and think that really tested us, well it definitely tested me. Since then things have improved somewhat altho. am still battling to get better services in my area and he is quite supportive of that.

Ann

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Hi Mick, that is a remarkable story of Love and Courage. The courage that it must have taken to step out of the picture, so to be able to see the picture clearer. To not keep putting your wife, children and family through a time of such uncertainty yourself. That took a lot of guts and especially at such a vunerable time in your life. I believe, if we don't take the time to find ourselves, odd are, others will never find us either. Your wife and family are very caring people, to allow you this space, yet still watch over you, that's a lotta LOVE... :blink:

However, I totally agree with you telling, especially newbies, that what you did, was not necessarily the right path to take and would advise against it. Though I am with you 100% to, TALK AND TALK SOMEMORE!!! Because if there is no communication, there can be no connection and without that, we are alone. Just my opinion. ;)

Sheila lbk

Maine USA

Keep Smiling :)

We're normal, it's others who look different!

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My dad took it very hard. He couldnt even come in, and when I couldnt sleep, he would come in there, when my stump was covered, and cry with me. He hurt for some time, and then after I got my leg, he was fine. My mom was always there for me, and helped me until she felt I could and would do it on my own...my mom bathed me when I was too weak to handle it...and she told me to do it on my own, and she gave me a gift...my class ring.

My sister took care of me in the hospital, and the medicine made me feel cranky...and I was screaming at her. But she didnt really see me as any different than I was before...and all in all my grandparents of course were kind of worried...but they were always there, they helped me excercise, because my stump was bent a lot, and they helped me get it straight again....without the friends and family, I couldnt have gotten through this, emotionally, as I did.

Lesley

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