I agree that certain aspects of empathy are genetic, when my daughter passed two of my closest friends didn't attend the service or acknowlegde her death with a card.
I am forgiving of them because I understand they lack the skills to be able to contact me, whether it's denial or not being able to face me with the right words, instead I feel bad for them.
As for here on the home front, I don't get empathy from anyone, which sometimes makes me furious, but I keep it to myself. I feel that no one can feel your pain or the intensity of it so they can't understand something they can't visualize.
On a lighter note I have started pool therapy, I love it, all floaty and no pain, I might be able to restart all my frozen muscles afterall, oh for a pool in my backyard, covered of course!!

kmeb:

You wrote: "some literally pretend I'm dead... (she cant eat or drive - why bother) And if one is homebound - the pain can be devestating....."

My god, who would have ever thought that family members can think like this.
My how times have changed.

Melody

People in many cases are afraid of illness or dont know how to deal with it - for some they are scared they are going to "catch" my neuropathy (I've had drivers from the agency I use for transportation make me sit in the back seat for fear of germs) - others I know it upsets them to see me so disabled after being so active my whole life - but the true ones hang in there... but think about how many activities revolve around food and meals... I dont mind watching others eat, but if you cant drive to get to the location and I'm out of the way of anyone really any more - ya kinda get forgotten.....

I understand.

Alan and I don't live near any of our family. We live in Brooklyn, and everybody else lives in New Jersey.

His family AND my family.

We have missed so many family get togethers because Alan hasn't driven in 6 years. I remember 40 or so years ago, when, if a family member didn't drive, SOMEONE came and picked them up. My Aunt Lucy didn't drive so one of my mother's other 4 sister's husbands came and got my Aunt Lucy. This was every weekend. Every Sunday, every friday night. Someone went and picked up Aunt Lucy, brought her over to my house (with everybody else) and then at night, SOMEONE always took her home. My Aunt Angie also. In those days, it was never thought of to get together and leave someone out.

But most of these people have passed away and my generation is not the same and my mother's generation. The people today are entirely more self absorbed. Even if they drive, well, they are too enmeshed in their own lives to think of going out of their comfort zone and pick up someone.

I would never asked to be picked up. In the past, if access-a-ride took us to a person's house, and then we had to go to ANOTHER person's house via a car, Alan and I would always pay for the gas. I don't care how rich a person is, if I'm riding in that car and they are driving, I chip in for the gas.

But now the Access-a-ride is on strike, and even if you get a trip you are told "we can't guarantee that someone will come and you can't bring a guest'. So I had to skip Cornell last Friday. They are mailing me my meds.

They are very nice at Cornell.

But we are used to having at least the Access-a ride to get us places. Now we don't even have that.

How sad that families are so spread apart. Nothing beats a cup of coffee and some muffins and some family chat time.

I guess the world really changed, didn't it??

melody

I am going to try and address different sets of issues that have come up here?
1] Babies responses? Maybe it's the 'smell'? We know with animals that smells and imprinting are key to bonding issues...maybe that it a key initial primal sense? People who smell 'good' are more attractive than those with medical diseases or conditions? Think of all the 'meds' we take...Maybe they make us 'nasty' to kids? I just read a study about 'smell imprinting+ pain connections' Ill try to find it and post it.....
2] 'Empathy' regarding our diseases? Well, the lack of education does foster ignorances, by others...WE have to be day-to-day advocates to start, no ...stop the bias of 'mis-informations' that float out on the news and others sources...we have to WRITE and state how silly it is to believe that whatever we have 'IS CATCHING"....
3] and most important about empathy....How many of us have an 'Aunt Hattie' or equivalent with dementia in our midst? I have a FIL...and he is snug in a care center about 500 miles away. IS it worth it to go see him for a 'possible' five minutes of lucidity on any given day?
4] Lastly...That said, IF one has a serious and long term chronic illness..most family members cannot deal with it after about 2-3 years...attachments aside..they are already divvieing up any potential assests...you are well, written off. I say this from long experiences, a set of parents who died from chronic issues, then a bunch of siblings who are also dealing with some 'similar issues' but not necessarily related [Thanks to all you dealing with the genetics?] and well, some folks are either too self centered or indifferent to care to share or just be with those who are home-bound. It's not always a nice place to be! Yet, if one on these boards were nearby to me, and offered any help...there might be a time I sure would appreciate the offer! Even if only for some small bit of 'forbidden' coffee? Some live in big cities where 'resources' of many types for 'access' are available and not expensive. I live in a clear cut suburb, and while some 'resources' are out there...they are sporadic. Not long ago, I drove an older person back to her 'retirement community' because the 'arranged ride' well.for the ride home...evaporated! It was a cold wet day..no sense for a neuro person to stand out in in the wet and cold...when I was gonna go not far from there on my way home. It IS when we need constant Medical Appointments...and trying to be independent, that we cannot always rely on 'friends or family'...they did their ten turns! Doing more, helping others, well pay-backs come round full circle in time... Anyone who can? DO it now and soon! Your turn may come fast, and then you can find out how frustrating it IS!
Empathy? It to me is realizing that what goes around comes back...and if you haven't had it...the lack will come and bite your backside! Or kick it or whatever...SUE YOU THERE??? I think you could elaborate better here?
-j

Well I stsrted to respone and kept falling alsleep a good thing can be an exhausting thing..They dinner party wore me out..Being house bound looks
and feels pretty good after 60 people slid into a resturant,when there's 10 inches of snow over ice.There was a Toddler who bless his heart slep through
the whole thing.. Then there was a 5 month little girl very tiny,mommy had a
hard time breast feeling..Mom was a nervous mom and 40..The baby was
good about letting anybody pick her up. Usually Babies love me if i'm in my
wheelchair,probaly the movement,relaxing,fun..Well I told Dr. John just help
me over to the baby,my son was holding her,she was smilimg,laughing..Well
I was falling all over hanging on a table trying not to fall down..Well mom
relaxed and was breast feeding...No nobody noticed big sweater,then she got passed on to Dr. John,so forth,Then Bob walked by and she wiggled and
threw her arms out to Bob.Well i finally been over and thinking i'm going
to get a smile she puckered up and let out a yell. See wanted her mother.
Wow that's interesting,everybody said she's tired,my son looked surprised
(babies love me},well when they all became quiet,I think she wise enough to
know I would I would drop her or I was wearing rotten perfune.

Just kidding but a good part of the evening ,people keep coming up saying
I think it's wonderful your here and looking so well..Arn't yo tired what's
that diease you got agin bla bla...Hurt my feelings than latler John said your lucky so many people really care about you..I seen people who lay in bed and nobody comes to see them..They love you Sue,But maybe I would of liked
if they said you look great,he said that's all I heard. Huh!!No they didn't
my son walked up mom everybody thinks you look beatiful and I think you do
to..Then the baby yelled again,hear comes mom ,well we better leave and
her little arms came flying out to me,well i rocked her for a long time she smiled and went to slleep..I hurt everywhere,I'm tired,don't want to do
that for a while,but I believe babies aren't so picky,I think they sence people
no matter,what people look like,if kind they like them or there not jugemental.
Your family are jerks k,Ive got some,we all do..I'm found some very goodpeople here,and I think J.is right if we want to be treated kindly we must
help others as long as we can,if we need help maybe we will run into people
like J. Well i said I was tired so hugs to all and you can hug me anytime you
want. PS I have been told by close family menbers oh I would have come
over but I thought you would be to tired.. For them always.

Maybe we are using the wrong word?

It seems that the posts here reflect others reactions to pain as
empathy issues. Maybe it is just a lack of compassion?

This culture we live in is dominated by TV these days. Watching the Xmas
commercials is extremely unpleasant for me lately. It is the endless preoccupation with THINGS...violent video games, fancy plasma TVs, new cars, etc.

I remember when I was pregnant. There was a Maxwell house coffee commerical of a neighborhood helping a solitary elderly neighbor get a Xmas tree up (which she could not do herself). It was very touching, and even my husband was
commenting that "crying during commercials" is not going to sell much coffee.
I'd cry at the drop of a hat back then when pregnant.
There is an IAMs one of a cute puppy and little boy, with a voice over showing them both aging together...leading of course to the dog's demise.
The concept is that if you use IAMs your dog will live LONGER. Still the tears come for me.

I have been working with sick people for about 40yrs. I see other people move away physically from obviously sick patients. Then I read a book by EO Wilson, who coined "sociobiology". He believes that humans evolved with genes that contain Xenophobic traits. You see animals with this commonly. In a herd, they will sometimes shun or push out the weak, so the predators eat those and spare the healthy. You see small children stare and say "cruel" things to anyone who appears different. Crutches, canes, sometimes even eyeglasses.
It is Xenophobia that drives racial fear and racial hate. It is the holdover from evolution, to fear and avoid anything different..as a self preservation behavior.

I think alot of what we see here is really xenophobia. We think that this is a behavior that can be quickly changed with a few words in a sermon or some education. I don't think so.
It may be ingrained into the genes and will take an evolutionary time to
dwindle out. Xenophobic scenarios play out every day...everywhere.
Making laws may help instill some "fear" to not indulge in discriminatory behaviors publically, but people still have them, keep them secret in the home, and
it will take a LONG time to modify them.

What we see as lack of empathy may just be xenophobia of illness.

I got thrown off juries during one of my jury calls, just because I was using a cane then. I'll never forget the stares from the defendent and his lawyer, when doing the challenges. I guess they figured I was an old coot, ready for a fight..best get old coots off juries!