| Unrealistic
Expectations
I tend to
be pig-headed about certain things that attack my heart. So in this
case, I have thrown my opinions out to other amputees regarding
this subject. So, I have written down my thoughts on the subject,
and then attached all the responses from other amputees. Please
read them - they are SO valid (and not necessarily in line with
mine).
It was only
after I threw this out, that I realised how strongly people felt
about it. Please read it through, it is quite long - but worth it.
Ally - South Africa - 11
years - AKA
There is a problem,
I believe, with the whole amputee/prosthetic industry at the moment.
The only amputees
any able bodied person ever gets to see, are those paralympic superstars,
wearing impossibly expensive prostheses, and achieving incredible,
and mostly impossible, feats.
Then along comes
the new amputee and his family. No problem, surely, they think.
We've seen what technology can offer, we've seen how amputees are
able to cope and walk without even a glitch! We shall get an arty
leg, and go skipping off into the sunset. By next week. Surely.
Not so. Not so.
With this type of stereotypical thinking, the new amputee is set
up for failure before he even gets started. He expects far too much,
far too soon. How can he not? We already know that new amputees
very seldom get all the information they need. They are not given
realistic facts about starting off as a new amputee.
Why don't we see
documentaries on TV on "a day in the life of an ordinary amputee".
Why don't we see the amputee trying to catch a bus, or get onto
the tube? Why don't we see an amputee paralysed with fear when he
reaches a busy escalator? Why don't we wait and watch with trepidation,
as an amputee tries to cross a busy street? Why don't we go shopping
with an amputee, and only buy stuff that's not heavy, that's easy
to get from the car into the home? How about a casual stroll in
the bush? Oh get real. Any ordinary amputee will catch his breath
and wonder when (not IF) he is going to stumble on the uneven ground.
And who ever thinks about heel height as their first and only priority
when they shop for shoes?
Let's not even start
on the expense. I will bet my last damn dime that any able bodied
person thinks that the cheapest limb costs a quarter of what it
actually does. A quarter, if they are generous in their assumptions.
Reality and fantasy
are poles apart, so far that a new amputee will blame himself for
not "skipping off into the sunset". Surely. Everyone else
is doing it, aren't they? Double above knee amputees can run faster
then able bodied people. They walk without a limp. There must be
something wrong with me. Perhaps I am not good enough, or maybe
I will never be able to get this right. Nobody else battles like
this, do they?
My prosthetist told
me the other day that the worst patients he has are new ones. He
says they expect too much. I understand that.
Perhaps if society
continues to portray us as light footed and happy skippers, nobody
will have to address the BASE issues of being an amputee. Like parking,
and stairs, slippery supermarket floors and the cost of getting
yourself walking (just ambling, not running or leaping). Nobody
will have to fund any research into phantom pain, because as we
all know and have been told, it dissipates with time. Well, tell
that to a trauma amputee who is still alive and kicking 40 to 50
years after his leg gets "lost".
If we arm a new
amputee with this information : that he will be slow in the beginning,
that his first prosthesis will make him think that his leg is going
to explode, that he will soon face his first (and not last) fall
and it will be frightening, that his first real arty leg isn't going
to be a top-end technological wonder because socket fit is more
important than anything else; if we warn the amputee, then his chances
of attaining a smooth transition to the life of an active amputee
are so much greater.
We need to give
the new amputee a realistic view of what to expect.
If you know what
to expect, if you vow not to be taken prisoner by fear, if you have
a plan, then I believe with my whole heart that you can do whatever
you want to.
If you are educated
about who and what you are, you will be limited only by your own
boundaries. Nothing and no-one can stand in your way.
It is your absolute
right, as a new amputee, to be armed with the correct information
- realistically speaking.
Lizzie -
many years - Bi-Lateral amp - UK
Hi Ally
There is so much more I would like
to say on this subject, but I don't wish to offend anyone, so I
shall just stick to my main points:
* I think there is a problem with
generalising, as every amputee is different; we're different people,
who lose limbs for different reasons, we have different cultural
backgrounds and (depending on where we live and our income and/or
insurance) we have different healthcare options available to us...the
list is endless...
* I agree that a new amputee needs
to be well informed and feel in control of their treatment. However,
the ability of someone to be well informed has to be tempered firstly
by that person's capacity to understand (e.g. intelligence, emotional
well being...etc), and secondly by their prosthetist's ability to
communicate information. In the end it all comes down to relationships
and communication.
* I see no reason why we shouldn't
value people, who have a disability (whether it be an amputation
or not) and who excell at sports or physical activities, just as
we value people who excell in mathematics, sciences, english, history...etc.
After all they have an innate ability and that ability should be
celebrated. I don't believe that celebrating people with amputations
who are successful in a sport, means that every person with the
same amputation should believe that with the right prosthesis and
rehab, they will ultimately be able to be successful in the same
way too. OK, they can dream about being as successful, as everyone
needs their dreams, but for the vast majority of amputees, it is
unrealistic - if only for the simple reason that the majority of
amputees are elderly.
* I am personally more impressed
to hear that a new amputee has managed to walk down the parrallel
bars for the first time, than I am to hear that Oscar Pistorius
has won another race. At the same time, I don't think we should
dismiss his effort. I think amputees as a group, need to celebrate
other amputees achievements (that's why I like this forum so much),
no matter how big or small. After all, everything is relative in
this life, isn't it? Achievements and limitations should be seen
in perspective.
* I don't see a problem with the
amputee/prosthetics industry, as it (as well as the limbs) has improved
so much over the years I have been an amputee (approx 40 yrs), to
be almost unrecognisable! However, I have a big problem about the
cost of prostheses and prosthetic components, which I understand
is largely down to the practices of large corporations such as the
NHS and health insurance companies.
Lizzie
Catherine
- Australia - BK - long long time
Ally I totally agree
with Lizzie.
As much as I complain
about my SACH foot and fitting disasters I am in awe most of the
time at how the industry has evolved. I've been watching it close
up for nearly 40 years and can still remember the dark dingy places
where I got my first few legs. The buzz saw they used to get my
cast off that terrified me when I was little.
I too agree that
new amputees need to be given Knowledge and helped to understand
the restrictions they may face in the beginning. I say MAY face
because we are all different. But they also need to be told what
is POSSIBLE. People need to have goals and dreams and I for one
would never deny any person those goals. Better to aim for the sky
and only reach the clouds than not try at all.
I think the cost
and availability of components is sometimes the only thing that
holds us up and that's the one area that new Amps need to be informed
and that's the one thing that needs to change the most.
Given the opportunity we CAN do ANYTHING.
*jumps off my soap
box and takes a few breaths*
Cat
Eag - LBK
- 2001
Ally, Cathrine &
Lizzy.......you all have said everything I have thought for along
time. When amputation happens to you - you think you will just walk
out of the prosthetists office perfectly...that's not going to happen....not
without alot of practice.
Cost is unreal...most
amps nearly hit the floor when its cost is added up.
AWESOME
BLUE, LBK, JULY 05, UK
Wow Ally,
I think I fit into
every category here. I’m a new amp just 5 months with a prosthetic.
But let me say right here and now, I have very high expectation
of myself and a high expectation of my prosthetist.
However because
of the support I received from the Physio team I had a realistic
outlook on what was achievable. Their pragmatic approach to rehabilitation
ensured that I got no ideas of charging off at a blistering pace
and setting world records. Quite the opposite in fact. I was told
what my limitations would be, and that getting me upright and walking
would be a major achievement in the short term never mind anything
else.
Prior to my amputation
I was extremely fit. Sport over the years had played a major part
in my life and believe me when I tell you I have never been beaten
by anything. If I was not the best I could be then I would be harder
on myself than anyone else ever could. The point I’m trying
to make here is, this was the attitude and determination I took
with me into the world of being an amputee. This was something else
that was not going to beat me.
The physio’s
warned me that I would not be skipping off into the sunset by next
week. But I was determined that I bloody well would, and I was not
going to settle for anything less. It hasn’t worked out quite
that way but it’s not far off.
Ally you are so
right about giving the new amputee a realistic information I was
so fortunate to be told the realities in advance. But this knowledge
of limitations made for a greater feeling of achievement when I
exceeded them.
I have no idea of
where I fit into the great scheme of things, whether I have achieved
more or less than the average, I don’t even know how you would
determine average.
Being told by friends,
family and colleagues how well I’m doing means I don’t
know what part of the picture I help to paint, am I your happy skipper
and doing a disservice to the cause ?
What I do know from
my very short time as an amputee is that any new amp should be encouraged
to achieve. To go beyond the boundaries, and I wish I could help
a few along the way.
Ally, a thought
provoking and useful debate, I just hope as a newbie my experience
and comments are considered to be worthwhile .
Jim - USA
- June 88 - RBK
Ally
I really don't know
how to respond, so I'll just start talking for a minute.
I don't remember
having any expectations. I had hoped that the first aortagram would
open my arteries so that I could walk without pain. Then I hoped
that the aorta-femoral bypass would give the legs the supply of
blood needed to walk normal.
When it came loose,
(the graft), I hoped that I would be out the next morning with it
fixed. I got out a month later without a foot, BUT - I had circulation.
Like Mike, I was
always physically active. I just didn't think that there wasn't
anything that I couldn't do - once my leg healed. It was a minor
inconvenience.
There was no one
to talk to about all of this. My CP was an AKA, and quite frankly,
a pompus ass. We did not get along at all. He had lost his leg in
Guyana at the Jim Jones cult thing there in the '70's, while in
the AF. He started talking to me like he was a first Sgt., (which
he never was, only a private), and I had to let him know that I
had outranked him and not to talk to me like that ever again.
When I finally got
my first leg, I went home and started terracing the slope in our
back yard with a pick and shovel, for my wife to plant a garden.
While I still had
my cast on, I was outside with the blower, cleaning the driveway
off, climbing the ladder to get on the roof, one foot and one knee
at a time, and going out on my 50cc scooter that we had to go camping
with. I would get in my car and put my stump on the console and
drive with my left foot, until I got my leg and then, as well as
now, I drove away with my prosthesis.
I HAVE NEVER THOUGHT
AMPUTEE!! Any more than I think late 60's, (which I am), or anything
else. I am just a guy with one short leg, that I make up for with
an item called a prosthesis, that evens me up.
It's my circulation
that slows me down today - not my leg. I have totally rebuilt a
1/2 acre property here in Missoui, building a complete guest house
from the ground up, with a 5' tiled custom shower and bathroom,
doing all of the work, ie; plumbing, framing, wiring, tileing, sheetrock,
roofing, painting and carpeting all by myself (and my wifes help
as she could).
I then tackled the
house, and reguilt every room, with beam ceilings, vaulted areas,
with custom tiled showers, and boxed in clawfoot tub, with a handicapped
4' tiled shower for me. I have also completly rewired and replumbed
the house.
All of this while
going through my 16th to 43rd operations, one of which was the loss
of a kidney taking out the deseased aorta-femoral bypass that started
all of this. There were also 3 major infections, and a heart attack,
with placement of a stent. I had pushed so hard working on the house
with chest pains, that one heart artery that was closing up built
it's own colaterals. I also whipped gangrene of my big toe on the
good leg during this time.
I have pretty much
got my heart angina under control now where I am looking at one
back family room that still needs to be remodeled, and finish the
fine work on the kitchen, which I started in '96 when my toe was
gangrene and I thought that I was going to lose the other foot.
My wife promised to be my hands and strength because I was so loaded
with morphine for the pain, but I wanted to get to a certain stage
before I lost my last foot.
You know, I hear
about all of the atheletes, and I am impressed - Not because they
are atheletes, but because they are using their potential - That's
all. Like Lizzie said:
"I am personally
more impressed to hear that a new amputee has managed to walk down
the parrallel bars for the first time, than I am to hear that Oscar
Pistorius has won another race."
Lesley out roller
skating -THAT'S IMPRESSIVE I don't care how many times she fell.
By God, she tried. That's what impresses me.
I hear of people
who dance or drive race cars, and I say "that's great, he's
doing his thing", but I'm no more excited than someone who
went to the shopping mall alone for the first time. Now, THAT takes
guts.
Don't misunderstand-
I'M ALSO NO LESS EXCITED. The one dancing and driving cars, first
had to learn to walk to the mall.
Some may not ever
get past the mall - but they tried.
Mike said it very
well, when he said:
"What I do
know from my very short time as an amputee is that any new amp should
be encouraged to achieve. To go beyond the boundaries, and I wish
I could help a few along the way."
To bring this "short"
note to a close: Each day, I just get up and work the best with
what I've got. My prayers are always for those who don't have as
much as I have, and gratitude and thanks for what I do. My life
goes on.
None of this was
designed to make sense. I just sat down and started to type. I'm
not even going to re-read it before I post. It's what I felt, and
I hope it is somewhere close to what you are asking for.
Your doing a good
thing. Keep it up. I'm proud to know you.
Anne - bi-lateral BK - 1970
- UK
Hi Ally
This is a really difficult one to answer because I sometimes do
read stuff by new amputees and think that maybe they are expecting
quite a lot, in a short space of time, however, thinking back though
maybe I was also like that, it was just such a long time ago I don't
remember.
I can't really remember
what my expectations were, probably just to walk. The whole process
of recovering from operations, getting fitted with limbs,seemed
to take much longer 35 yrs. ago.
When I first saw
someone wearing pylons, they weren't quite what I envisaged, however
my prosthetist very quickly introduced me to an 18 yr old, who had
been a bilateral since very young, she was at the limb centre with
her mum and fiancee, she walked very well, and they told me YOU
WILL WALK like she does eventually. It was probably one of the best
things they could have done as my family and I had had no contact
with other amputees and even though it gave me and my family quite
high expectations, it did give me something to strive for.
I think today, sorry
starting to sound like an oldie here, everything moves at a much
quicker pace, we all expect everything much quicker, not just limbs,
so maybe its not so surprising new amputees have very high expectations.
Combined with that things are much more visible, which is a good
thing, so we switch on the TV and see atheletes etc. However, as
has been said before, we are all different. Not all able bodied
people become atheletes.
What I have come
up against, in more recent years though, is the low expectations
of the medical fraternity, probably established on the basis of
cost, which I find really depressing.
Mel - Australia
- RAK 2003
Ally, I go on for
ages.
For starters the
media / television.
While trying to
launch Limbs 4 Life and get some media attention I began to realise
just how difficult this task was;
I was told that
people (the Joe public) are not interested in stories like this
because they cannot relate. The average person doesn't believe it
will happen to them. So while they may watch and think "Isn't
that awful" they're time span to remember such a thing is nil
Second, loosing
a limb is not glamourous or sexy hence that's what people want;
yes there are exceptions (models) but how many of us amps are model
material? ?
Thirdly stories
of people(unless it's ugly or violent) are not interesting if you
are over the age of 21.
So those are the
media barriers I have come up against and when you think about it
the sporting paralympian guys don't really get much attention either
when you compare it to a non disabled "sporting legend."
Personally I had
heaps of goals many unrealistic many achievable. I know that when
I first expressed them to my rehab team they thought I was insane.
However that drive and determination has got me along way faster
than any medico ever imagined.
One of my goals
was to wear a mini, (I thought I'd get a Heather leg), the other
was to get back on a dance floor-chances are I'll never do either
of these again; but reality hits when you first get that leg on
and realise what you can do, what will be hard, what will be easy
and most of all what's really really important.
I had a reality
check fairly early in the peace and got my stuff into perpective.
I don't really dwell on the things I can't do and frankly I was
the one who gave me a false sense of things - not anyone else. No
one ever promised me that I could do things I couldn't.
Mel.
Mmarie,
USA, Dec 2003, RBK
I have to say that I had totally
unrealistic expectations. Like Mel, I thought I would get a Heather
leg and everything would be just fine. That's what I told myself.
I can't believe how utterly clueless I was. The thing is, you don't
know what you don't know.
I'm with Neal on the peer visitor
thing. How I wish someone would have visited me. Perhaps a visit
would have given some insight. I wonder if maybe the reason the
doctors, nurses, etc. don't contact peer visitors, at least in the
US, is because of the crazy HIPPA law. The hospital will hardly
let your priest come see you!
That's where this forum comes into
it for me. This is where I finally got some information. I mean,
I didn't even know the questions to ask.
There have been times (I think I've
mentioned this before) when someone has said to me something like
can you believe you've done so well and my response is that actually
I thought I'd do better.
So as for me, yes,
I had unrealistic expectations.
Eag, Jan
2001, LBK
You know guys & gals.......after
reading all the posts we have all been thru Hell and back. Most
of us have not had any contact with amputees until we became one....that
in its self is scary. Everyone (nurses, doctor) just told me that
I wouldn't have any trouble walking just like I had before. I don't
know, maybe at the time they thought that is what I needed to hear.
I just wish I had known of a forum
like this. It would have helped me considerably. You all are so
great & have so much knowledge...and I am so glad to have a
place like this to come to.
Marcus, Sterling UT, BK,
1988
Good question Ally. I don't think
most amputees are unrealistic but most of what society sees is.
The average amputee (older, diabetic or circulatory problems, etc)
never makes it onto television or into the news. The daily struggles
like a pesky ingrown hair aren't interesting enough to put into
the news either. I'm sure that some misconceptions about amputees
living 'lives without limitations' creep into the medical community
and foster unrealistic expectations, but for the majority of amps
they've already lived with enough pain to realize that they won't
immediately jump out of their wheelchair after three years and run
a marathon.
As far as personal
experience goes. . .the doc that amputated my leg told me that I
would never need a handicap placard for my car. He apparently just
didn't understand that I'd be sore some days. Most of the time I'm
just a normal (ok. . .abnormal) guy that happens to have one leg,
but on some rare days every step is agonizing. I deserve the damn
thing but try not to abuse it when I don't hurt.
Alcyone, RBK, 2004
I must say that
ordinary people don’t know much about amputees and prosthetics.
Some young amputees are also “marketing victims” and
believe in some extraordinary products of some ortho companies.
It’s abig problem of today in all life spheres.
People who can’t
get very expensive prosthetic has great explanation for their inactivity
– if I get those expensive leg – I could do everything
I want. Real truth is very simple – amputee rehabilitation
is long and slow process and person who can adapt on cheap beginner
leg without problems can do almost everything – of course
with better prosthetic it could be much easier.
I call it “syndrome
of big expectations”. I know some bk amputees who work as
painter, car mechanic, seller – they didn’t change their
job and every day they walk a long distance with heavy load. Of
course they have cheap legs and don’t change it because they
haven’t enough money.
Some of mine friends
ask me why I have crutches in my car – “you have prosthetic”.
If I say – I have already put my leg on and I don’t
feel comfortable – “but, you have two prosthetic legs”.
Carol, Fertile
MN, August 2003, RBK
You started a great
conversation Ally. In my situation I believe that I had unrealistic
expectations.
I first happened
unto a site, and I don't remember what it was, where a young guy
in the military had an amputation and was walking a mile on the
treadmill not long after. I should have known that a 20 something
guy in fantastic shape would progress just a tad faster than an
overweight 40 something gal who had been sitting on her backside
for the past 10 years!
My prosthetist also
made the entire process seem a bit too easy, and he still feels
a bit guilty for that today.
As for the athletes,
I love to watch them now. Even though I am not at their level, they
help me to picture the possibilities! The only real problem I have
with it is that we don't get to see any paralympics on television.
I wish those athletes would get more support. That affects me more
so than anything else.
And one last comment,
for stories of regular people like us, the new show Body Rebuilt
(or close to that title) on The Discovery Health Channel on Wednesday
nights is fantastic. It has all kinds of people in all different
situations. Absolutely love it!
Oneleggedtog,
Scotland, RAK, October 1999
I had a peer visit
from a below knee amputee in hospital after my accident - he gave
me totally unrealistic aspirations- as I am above knee - with a
hip injury. this was organised by the physio at the hospital I was
in. I later told her off and she was very humble about it all. He
did give me an insight into how a prosthesis works though.
The insurance company
just wanted to throw money at my injury & I was promised a 'c'
leg to make things 'back to normal' of course nothing is going to
replace a real leg (and hip).
The brain is probably
the most important organ in all this, my brain tells me I have no
disability, but my body tells me differently, it seems there is
a constant battle.
My brain agreed
to go un-caged shark diving in South Africa, my body is not happy
about this - they need to talk...but it's too late now .
Greyhoundgirl,
Maryland, August 2005, BK
wow Ally that article
really hit the nail on the head for me. every single word in your
fabulous article is true to life for me.
I just got my prosthesis
2 weeks ago and I feel I'm doing miserably with it. I see the show
"rebuilt" and look to those amputees that are using their
prosthetics so gracefully and think "am I ever going to get
to that point" "why does it hurt so bad" "I'll
never be able to walk in this heavy thing" and then the tears
come flowing and I wish all over again that I didn't lose my leg.
Noone told me it
would be easy but they didn't tell me it would be this hard either.
Before I got my prosthesis I thought I would be up and running with
it in no time and now I see that it's going to take many months
of 3 day a week PT when I thought I was only going to need it for
a month tops once or twice a week, man was I WRONG!
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