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Thread: Who is Perfect?

  1. #1
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    Who is Perfect?

    Last edited by LindaRacine; 02-18-2014 at 08:50 PM.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  2. #2
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    When I click your link it comes up "Page Can Not Be Found".
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
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    Quote Originally Posted by rohrer01 View Post
    When I click your link it comes up "Page Can Not Be Found".
    Thanks for letting me know. I fixed the link.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  4. #4
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    Link is working now. I was able to view the video and would highly recommend it!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  5. #5
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    Awesome! Now, if they only made clothing to fit us so we don't have to alter everything ourselves!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  6. #6
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    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/xm7...-closer_people

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #7
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    Wow thanks Linda and Ed for posting those videos. Very, very powerful. Brilliant.
    Last edited by Pooka1; 02-23-2014 at 07:55 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    Quote Originally Posted by titaniumed View Post
    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/xm7...-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!
    Last edited by rohrer01; 02-20-2014 at 08:54 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #9
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    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
    Last edited by titaniumed; 02-22-2014 at 11:08 PM.
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #10
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    Texas
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    very sad

    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.
    57 years old.
    thoracic curve 68 degrees
    lumbar-sacral curve +/- 41 degrees
    Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
    Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
    THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

  11. #11
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    Quote Originally Posted by titaniumed View Post
    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.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  12. #12
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    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
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

  13. #13
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    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.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  14. #14
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    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.
    Last edited by Pooka1; 02-23-2014 at 05:03 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
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    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
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

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