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LindaRacine
02-18-2014, 01:14 PM
Great video message. (http://blog.petflow.com/this-is-so-touching-everyone-should-watch-this-at-least-once/)

rohrer01
02-18-2014, 09:04 PM
When I click your link it comes up "Page Can Not Be Found".

LindaRacine
02-18-2014, 09:50 PM
When I click your link it comes up "Page Can Not Be Found".
Thanks for letting me know. I fixed the link.

mariaf
02-19-2014, 07:13 AM
Link is working now. I was able to view the video and would highly recommend it!

rohrer01
02-19-2014, 12:31 PM
Awesome! Now, if they only made clothing to fit us so we don't have to alter everything ourselves!

titaniumed
02-19-2014, 11:02 PM
Pro Infirmis is doing necessary things that ALL people need....and its so deep, at least for me....so I will simply add another video they made.

The man in the bear suit had a traumatic brain injury in an accident 8 years ago...

Get Closer

http://www.dailymotion.com/video/xm7lzn_pro-infirmis-get-closer_people

Ed

Pooka1
02-20-2014, 07:23 AM
Wow thanks Linda and Ed for posting those videos. Very, very powerful. Brilliant.

rohrer01
02-20-2014, 09:50 AM
Pro Infirmis is doing necessary things that ALL people need....and its so deep, at least for me....so I will simply add another video they made.

The man in the bear suit had a traumatic brain injury in an accident 8 years ago...

Get Closer

http://www.dailymotion.com/video/xm7lzn_pro-infirmis-get-closer_people

Ed

Ed, That was profound, too! I get the gist of people giving him a hug that normally would not have because of his appearance. However, I see another side to this. Look at the variety of people that didn't "look" like they even wanted a hug going up and hugging him! It goes to show how much human contact we really need to be emotionally healthy. I think even our physical health can decline without human contact, as demonstrated by the baby story so many have heard about. All of the smiles! I think I saw Jess and Sparky in there! LOL Not, really, but there was a lady with a cute, white, little doggy that reminded me of them! ALL people need hugs, from the gangster to the grouchy old man to the little girl and, of course, the man in the bear suit!

The dress:
Back to Linda's video. I went clothes shopping yesterday with my DIL. Of course, she's had surgery and stands normally so only has fit issues pertaining to any "normal" woman. However, most everything I wear looks okay and my deformity is not noticeable AT ALL because I'm so well balanced. However, I tried on this one dress. It looked super frumpy on the hanger and I thought to myself, I'll bet this dress looks much better on the body. Well, I was right! It wasn't a super frump ON. But, the only drawback was, this dress had a tieback near my waistline. When I tied it, it not only made my deformity very visible, but seemed to accentuate it! I thought of that video that Linda posted, and I really liked the dress (except for that one detail that glaringly stood out to me). I told my DIL if people don't want to see my deformity, then they don't have to look at me! THIS is part of WHO I AM. I thought to myself, THIS explains a lot about ME and why sometimes I don't feel up to doing things that people "think" I should because I "appear" like everyone else by the way I dress. I bought the dress with DIL's FULL approval. She understood exactly what I meant. It's not a sympathy dress. It's just a pretty dress that doesn't hide ME. It's very modest, with long sleeves and almost ankle length. Well, maybe it is a little bit frumpy, but not UGLY like it looked on the hanger!


So I'm not saying we should dress to accentuate our out of the normal curves. But, really... why should we have to hide behind the bear suit? If we like something and it reveals an imperfection, should we shy away for fear people may SEE us?

Thank you Linda... and Ed!

titaniumed
02-23-2014, 12:05 AM
I have a brother in a bear suit....

He suffers from a rare form of Kleinfelter’s and also lived through a brutal car crash and had resulting brain surgery. He isn’t perfect but does fine. He is a trooper! Now, I need to get him in a casino because his ability to remember and calculate numbers is beyond belief! I feel like Tom Cruise around him just like in the movie “Rainman”. Deep breaths sometimes, but I do need to add a smiley face right here even with all the questions and challenges.

I have stood in the store window looking out at people my whole life.....not necessarily due to my scoliosis since it was hidden so well, but with my brother, father, and many friends with many disorders and diseases.....I have seen all the faces and reactions. Every person in Linda’s movie I know.....everyone of them is just amazing!

I guess the only way to tackle things is through awareness....These films should be a public awareness campaign....run them during commercial breaks. Taught in schools....

My father expressed his feelings about being in a wheelchair and how people react differently because of this. ALS doesn’t affect the mind and the doctors even documented that his mental activity was X4. He had no problems communicating with anyone about any topic matter, and needed the interaction. There is no reason why this should happen, it is just peoples knowledge or past interactions or Hollywood that pre-programs their actions.

Everyone has a brother in a bear suit....Everyone knows of someone who tackles their own issues or afflictions in their own ways....It doesn’t have to be this look of “Oh my” or “Lets move along quickly”.....Maybe some need a hug, or at the very least some acknowledgement, it doesn’t have to be what it is.

When you really think about it, no-one really is perfect.

The girl in the 1st film has a huge scoliosis.....and she really looks good and has such a great smile....and even though she probably has adapted well, she will probably not live too long. If I ever met her, I would have to hold the tears back.

I consider myself extremely lucky

Ed

scooter950
02-23-2014, 12:52 AM
just viewed the video- it makes me so very sad. maybe i'm still dealing with myself, maybe it shows deformities too much, I don't know I am so sad now. I feel so deformed.

mariaf
02-23-2014, 07:35 AM
I guess the only way to tackle things is through awareness....These films should be a public awareness campaign....run them during commercial breaks. Taught in schools....Ed

Really great post, Ed. My dad suffered the last 4 years of his life with Alzheimers and I know that many people didn't understand the disease. In fact, I probably thought I knew more than I actually did about the disease until my father got sick.

Over the years, I've tried to use the many trips I've made to Shriners with my son as opportunities to talk to him about these things. I think/hope that seeing children in wheelchairs, with missing limbs, and other conditions has made him more understanding and compassionate. I've explained since he was very young that these people are just like him on the inside. I'm also pretty outgoing (OK, I'm told that I will talk to anyone and everyone!), so we usually end up making friends while we are there. I hope my son has come away with the outlook that in fact, nobody is perfect, but everyone is perfect and special just the way they are.

susancook
02-23-2014, 03:36 PM
Maria, talking to your kids in the car is an advantage that I used over the years with my kids. You have their undivided attention/ears since they cannot jump out of the car going 60 miles per hour.

I worked at a camp for handicapped kids when my kids were younger. My daughter was 10 at the time and helped out. We were talking about a kid that was developmentally delayed and I asked her how she enjoyed fishing with him. She said, "He thinks just like me, just slower". I loved it! She gets it!

My dad had Alzheimer's and it was a real learning experience. We do need more public awareness.

Sounds like you are an compassionate advocate for your son. Good luck! Susan

mariaf
02-23-2014, 05:52 PM
I love that story about your daughter, Susan! I bet she turned out to be a very kind and caring person.

I also learned recently that a kid on David's HS baseball team has diabetes. He wears some sort of pump from what I understand (perhaps to administer insulin/meds). David had never mentioned it to me, but one day somehow the topic of diabetes came up, and I was going to try to educate him a little about it and he said "oh I know, a kid on my team has diabetes". He said it very matter-of-factly which made me feel good because I knew it meant that it was no big deal and that they treated and viewed this kid the same as everybody else.

I don't think there can ever be enough public awareness about any of these conditions.

Pooka1
02-23-2014, 06:01 PM
If you teach a child HOW to think, in this case to be empathetic and compassionate, you never have to teach them WHAT to think. It routes them to being accepting and understanding.

If you teach a child HOW to think in terms of demanding evidence, being skeptical, valuing reason and ration and logic and intellectual honesty, you never have to teach them WHAT to think. It just routes them to science automatically.

susancook
02-23-2014, 06:15 PM
Sharon, you are so right! I would also add that you need to model compassion, non-judgemental caring, and an attitude for service to others. Modeling behaviors that you want to teach/convey to your children is essential and powerful. Children learn more from what they observe adults doing/behaving.

If adult behavior is irrational and uncaring, it doesn't matter what is said. Children are then confused about what to do and think, but the observed behavior speaks louder than the words.

It is essential that when parents observe ignorance and intolerance, that they use that as a "teaching/discussion moment".

Susan

Pooka1
02-23-2014, 07:09 PM
Sharon, you are so right! I would also add that you need to model compassion, non-judgemental caring, and an attitude for service to others. Modeling behaviors that you want to teach/convey to your children is essential and powerful. Children learn more from what they observe adults doing/behaving.

If adult behavior is irrational and uncaring, it doesn't matter what is said. Children are then confused about what to do and think, but the observed behavior speaks louder than the words.

It is essential that when parents observe ignorance and intolerance, that they use that as a "teaching/discussion moment".

Susan

Yes I completely agree.

It's like with horses, all riding is training. If you don't know what you are doing the horse learns incorrect stuff and might become dangerous (through no fault of the horse's). If you know what you are doing, the horse becomes highly trained.

Similarly, all interactions between parents and children are parenting. If you know what you are doing, the child grows up to be a good person. If you don't then the child is at a huge disadvantage.

susancook
02-23-2014, 09:52 PM
Sharon, I wish that it were as simple as doing all of the right things makes perfect kids. I wish that it was true. My kids are awesome adults, but some of the equation is just plain luck. Susan
Ps: love the horse analogy

rohrer01
02-23-2014, 10:50 PM
I have a brother in a bear suit....

He suffers from a rare form of Kleinfelterís and also lived through a brutal car crash and had resulting brain surgery. He isnít perfect but does fine. He is a trooper! Now, I need to get him in a casino because his ability to remember and calculate numbers is beyond belief! I feel like Tom Cruise around him just like in the movie ďRainmanĒ. Deep breaths sometimes, but I do need to add a smiley face right here even with all the questions and challenges.


Ed

Isn't Kleinfelter's where there's too many "Y" chromosomes? I'm just testing my human genetics recall. Of course, I can look it up easy enough. Your family has had more than its share of health problems, for sure. It's so amazing that none of them are related. One of my genetics professors has a brother with Willie Prader Syndrome. That's what inspired him to be a geneticist. This syndrome comes with an insatiable appetite for food. They will eat anything and never get satisfied. They also have a degree of mental retardation. So sad, but inspirational at the same time.

NEVER wear the bear suit!

rohrer01
02-23-2014, 11:00 PM
just viewed the video- it makes me so very sad. maybe i'm still dealing with myself, maybe it shows deformities too much, I don't know I am so sad now. I feel so deformed.

Scooter,
I'm so sorry you feel sad after watching these videos. It made me feel better. We should never be ashamed of ourselves. We didn't do this and NO ONE has a "perfect" body.

I had a woman come up to me in the store while I was shopping the other day. She'd complimented me a couple of times already on how nice I looked in my dress coat. She was behind me in the check-out line and jokingly asked me to rub her so that some of my "thinness" would rub off on her. So I obliged. Then I told her that I had some sort of muscle wasting disease that made me lose weight and I had trouble eating. My DIL was with me and chimed in on how sick I am. The lady rubbed me and said I could have it back, and that maybe some of her appetite would go to me.

I didn't mean to embarrass the lady at all and we parted very friendly. It's what you don't know about that person that you "think" is so perfect. She wasn't happy with her nice straight back. I never took my jacket off or my overshirt so that she could see my deformity. This was the day that I bought "the dress".

I made a post on FB about it being kind of a reverse discrimination of obesity. Not all thin people can help it, and we are not all well. Although, I have always been thin, I have always been teased about it, too!

So, please, don't feel sad. The point of everything here is that none of us are perfect. That woman saw a "package" that she thought she wanted... until she found out only a fraction of what was wrong with it. Then she became content with her plump, but healthy body!

titaniumed
02-24-2014, 01:51 AM
Isn't Kleinfelter's where there's too many "Y" chromosomes?


Thatís correct. And many years ago the docs didnít know squat about it, especially the rare forms.....When he was in the Army in the early 70ís they were the ones that identified it through blood work. You really couldnít tell with him most of the time, but then he would have these anxiety attacks and freak out. Iím serious about the Tom Cruise thing, I lived that part.....It was an experience let me tell you. He would do things like buy $1000 worth of bottled water if another hurricane was headed his way down in Florida. Stuff like that. (smiley face) My attorney spends more on expensive scotch, but you get the idea.

The car accident he was in almost killed him and they spent 2 hours cutting metal away from him on that one....he was t-boned by a car at 75 right in the drivers side door. He was in the hospital for 6 months and did around 5 hard core surgeries. I would rather do a full fusion.

Yes, I have been exposed to all host of things.....I also have a good friend, a best friend, he being a Thalidomide baby with Phocomelia.
http://en.wikipedia.org/wiki/Phocomelia

When challenges in life are pushed to the limits, you find very special people....

My scoliosis was not even an issue. I just had a curved spine. Simple stuff.....

Ed

mariaf
02-24-2014, 09:03 AM
Sharon, you are so right! I would also add that you need to model compassion, non-judgemental caring, and an attitude for service to others. Modeling behaviors that you want to teach/convey to your children is essential and powerful. Children learn more from what they observe adults doing/behaving.

If adult behavior is irrational and uncaring, it doesn't matter what is said. Children are then confused about what to do and think, but the observed behavior speaks louder than the words.

It is essential that when parents observe ignorance and intolerance, that they use that as a "teaching/discussion moment".

Susan

I can't add anything to this post - it says it all.

Back in my day, some parents used to say "do as I say, not as I do". Today we are smart enough to know that doesn't work :-)

rohrer01
02-24-2014, 08:12 PM
One of my genetics professors has a brother with Willie Prader Syndrome. That's what inspired him to be a geneticist. This syndrome comes with an insatiable appetite for food. They will eat anything and never get satisfied. They also have a degree of mental retardation. So sad, but inspirational at the same time.

NEVER wear the bear suit!

I'm pretty sure that's Prader Willie Syndrome, not the other way around! Obviously, I'm not looking this stuff up and am relying on my failing memory!

rohrer01
02-24-2014, 08:25 PM
Thatís correct. And many years ago the docs didnít know squat about it, especially the rare forms.....When he was in the Army in the early 70ís they were the ones that identified it through blood work. You really couldnít tell with him most of the time, but then he would have these anxiety attacks and freak out. Iím serious about the Tom Cruise thing, I lived that part.....It was an experience let me tell you. He would do things like buy $1000 worth of bottled water if another hurricane was headed his way down in Florida. Stuff like that. (smiley face) My attorney spends more on expensive scotch, but you get the idea.

The car accident he was in almost killed him and they spent 2 hours cutting metal away from him on that one....he was t-boned by a car at 75 right in the drivers side door. He was in the hospital for 6 months and did around 5 hard core surgeries. I would rather do a full fusion.

Yes, I have been exposed to all host of things.....I also have a good friend, a best friend, he being a Thalidomide baby with Phocomelia.
http://en.wikipedia.org/wiki/Phocomelia

When challenges in life are pushed to the limits, you find very special people....

My scoliosis was not even an issue. I just had a curved spine. Simple stuff.....

Ed
Just out of curiosity, did they let your brother stay in the military? They usually don't if they have any kind of anxiety or panic disorder.
It's also a little odd, that you say your brother appeared "normal". Usually these men are very slender build, almost feminine. But, then again, some men are naturally built that way. My dear hubby is built that way and he's not sterile (part of the genetic defect). So, I suppose it could easily go unrecognized.

Yes, when we face challenges, we do meet some unique people. There was a thalidomide woman attending my university, VERY beautiful woman! She had her scooter. She had no arms or legs, but had hands that came out of her shoulders with which she could lean forward to drive her scooter. I "assume" she was a thalidomide baby because of her condition, but never really asked her. She wasn't in any of my classes.

When I first came on here, I thought I didn't really know anyone with serious disabilities, except a friend (recently passed) who was born with spina bifida with a meningiocele and was paralyzed from the waist down. But, then as time goes on I find myself giving experiences of so many people I know who fit a certain situation. I guess I never saw the disability. I just saw the person.

I hope your brother is doing well. Never be embarrassed. It seems so often that where there is a lack of function in the brain, especially in autism, there is a HUGE excess somewhere else with superhuman intelligence. Your brother appears to be one of these. It's a curse and a gift. Just look at the gift part! Was he like that before his traumatic brain injury?

My family has had some weird, unrelated things, as well. =)

scooter950
02-25-2014, 12:42 AM
thank you Roher for your kind words, and I echo your comments to Ed - my family had many elderly eccentric relatives and they loved me very much, (when I was a young child) and yet they would not wear their teeth in public, or they would dress in skirts with sneakers & socks - and my mother always cautionned me, "never be ashamed of anyone who truly loves you" and she would assure me that my aunts and uncles and crazy cousins loved me. So I accepted them, with their idosyncracies. i just need to accept myslef. I am on antidepressants again, third time- so I hope I will get some mental clarity and shake this overwhelming sadness. blessings to all, Jamie in TX

titaniumed
02-25-2014, 01:56 AM
Just out of curiosity, did they let your brother stay in the military?


No....they kicked him out.

He is 6í1Ē and very large....and needs to lose some weight....Its amazing how well he has managed with all he has been through....and it shows how strong his determination can be. Like I said, the doctors didnít have a clue till he went into the army at age 18. All of a sudden it was this diagnosis....and of course there was no literature at all, nobody knew anything back then.....The East Coast doctors when we were kids usually practiced from their homes, you went in, stuck your tongue out, said Ahhh, paid him $20 and you were done......No insurance, thatís how it worked. I was dxd by an old doc that way. No x-rays, 10 seconds, ďHe has scoliosisĒ. I also slipped through the cracks.....

My phoco friend has a wooden leg, (small foot under knee) and was born with a webbed right hand in which they surgically separated his fingers. He became a Psychoanalyst for the state of NJ. Went to school for around 20 years to keep from drinking himself to death....and was the wealthiest college student due to his disability. We had a lot of fun. Even toasted champagne from his wooden leg. (smiley face) Phoco is where the foot is just under the knee, or hand at the base of the elbow. When I go back to visit, I stay with him and talk about things......deep things.

Jamie, I hope you can get past this depression quickly. I have had it come and go especially when I used to post all the comedy here on the forum years ago....Deep down inside I think I realized that things were going to work out just fine, and they did....we are not perfect, but thatís ok. I dealt with it by laughing when I could. Full fusion isnít that bad at all.

I kind of miss that period, some of the posts were hilarious! That was in 2008 and 2009.

Ed

rohrer01
02-25-2014, 03:44 AM
Ed,
You haven't lost your hilarity, completely anyway! You still come up with some really great stuff.
You do seem a bit more serious these days as compared to when I first joined the forum.
You were among the FIRST to make me feel welcome. Sorry, it weirded me out at the time! LOL
BTW, I'm not weirded out anymore. I enjoy your posts very much. The forum wouldn't be the same without you!

Pooka1
02-25-2014, 07:01 AM
I kind of miss that period, some of the posts were hilarious! That was in 2008 and 2009.

Ed

That was the period when my daughters were going through their surgeries. I joined at the right time. :-)

In my opinion, because of the types of posts you made, you have always a been a spokesmodel for the forum. I especially like the Benny Hill stuff. :-)

Sharon

titaniumed
02-26-2014, 12:56 AM
Rohrer, You are right, perhaps I am being a bit too serious these days....you should see me at work. I have always tried to keep it light here but this thread has me thinking....

Sharon, Since I have exhausted the Benny Hill catalogue, here is some medically related humor.

Thanks for the kind words guys...

http://www.youtube.com/watch?v=eSdNMRtvq5g

Fruit flies? Thatís a good one....(smiley face)

I hate to break away from this thread, but I guess its time to take a few deep breaths.

Ed