Re: Scoliosis Overcompensation Syndrome-DianeV

[Guest guest]

Diane V,

It really is hard for the " world " to understand that people that look

" good " on the outside can actually have a debilitating condition on

the inside.

So much of our culture is wrapped up in looks or appearance.

Also...humans tend to regard what they " see " is true or correct rather

than what the data is telling them. I am a retired air traffic

controller, my husband is a professional pilot...and I can tell you

that many an accident has come about when a pilot decided to rely on

what he was seeing, instead of what his instruments were telling

him/her were the facts. Most pilot training is in actually directed to

teaching pilots to overcome that strong urge to trust what they are

seeing and go with what the instruments are telling them. Its just the

way we humans are....years of evolution and our instincts are still to

trust what we see, no matter what we know.

What that means for most of us is to recognize that the lack of

understanding on others parts is really a lack of education or

information, or an unwillingness on their part to believe that no one

in their proper mind would " fake " scoliosis.

It is harder with parents who believed the medical establishment when

they signed us up for our earlier surgery.As a parent today, I can see

that guilt must play in to their feelings today when we again struggle

with the scoliosis. They feel that they first contributed the genes or

environment that lead to the curvature, or they didn't catch it in

time, or they agreed to surgery in the first place. That is a lot of

guilt for a parent. No wonder they can sometimes be a little defensive

acting or feeling, or both. All we can do is reassure them that we

know that they were doing the best for us at the time that they could.

Its no ones fault. No one was singled out for this malady because they

were " bad " . Its just one of those things.

On the positive side...I would say that most of us came through our

earlier experiences with a very strong, positive attributes.

Overcompensation syndrome maybe, but also many of us ended up being

very high functioning adults....so there is good with the bad!

Take Care, Cam

[Guest guest]

Dear Cam,

Yes, people do tend to only believe what they see. Or they see through their own set of "glasses" / presuppositions. I think the guilt on the parents' part is also very much a factor.

In fact...I have been feeling guilt when I think of my own girls' futures. One was put in a 23/7 Boston Brace at age 6-10 years, then went into a Providence nighttime brace which she still wears at age 13. My second daughter has been in a Providence for a year now. My third daughter has a mild case at this point, so no bracing yet. I feel like I have no reason to feel sorry for myself and my own pain when they will likely go through life with pain from scoliosis in their adult lives, too. And will pass it to their kids. I pray that treatments get better and more effective.

So if I am feeling guilt for my kids, I'm sure my parents feel it, too. I think they don't think that I'm faking it, but that rather I am more symptomatic now that I've found out more about it...psychosomatic? I think it is rather, that I am finally acknowledging the pain now that I know it is NOT all in my head. And it has gotten worse. I even wake up at night with pain...I can't be just dreaming it.

I will keep reassuring them that it was state of the art at the time and that I'm grateful that I had a strong enough back to give birth to 5 kids, etc. Hopefully they will "get it" eventually. Any articles I've shown them don't get read...denial? Probably. Even my husband who believes me doesn't want to read about it, but he's not a big reader and he's working mega hours and is exhausted most of the time.

I also agree with you about the positives of Scoliosis Ovecompensation Syndrome. I am usually a very productive person. I'm not sure I'm so good at being an adult, but I get things done. Although now I am learning to let things go a bit. That has been difficult, but freeing.

Well, I need to get ready to see the extended family tonight for a Christmas Party. Again, thanks for the encouragement.

Diane VDW

Michigan

Diane V,It really is hard for the "world" to understand that people that look"good" on the outside can actually have a debilitating condition onthe inside. So much of our culture is wrapped up in looks or appearance.Also...humans tend to regard what they "see" is true or correct ratherthan what the data is telling them. I am a retired air trafficcontroller, my husband is a professional pilot...and I can tell youthat many an accident has come about when a pilot decided to rely onwhat he was seeing, instead of what his instruments were tellinghim/her were the facts. Most pilot training is in actually directed toteaching pilots to overcome that strong urge to trust what they areseeing and go with what the instruments are telling them. Its just theway we humans are....years of evolution and our instincts are still totrust what we see, no matter what we know.What that means for most of us is to recognize that the lack ofunderstanding on others parts is really a lack of education orinformation, or an unwillingness on their part to believe that no onein their proper mind would "fake" scoliosis. It is harder with parents who believed the medical establishment whenthey signed us up for our earlier surgery.As a parent today, I can seethat guilt must play in to their feelings today when we again strugglewith the scoliosis. They feel that they first contributed the genes orenvironment that lead to the curvature, or they didn't catch it intime, or they agreed to surgery in the first place. That is a lot ofguilt for a parent. No wonder they can sometimes be a little defensiveacting or feeling, or both. All we can do is reassure them that weknow that they were doing the best for us at the time that they could.Its no ones fault. No one was singled out for this malady because theywere "bad". Its just one of those things. On the positive side...I would say that most of us came through ourearlier experiences with a very strong, positive attributes.Overcompensation syndrome maybe, but also many of us ended up beingvery high functioning adults....so there is good with the bad!Take Care, Cam

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