Wednesday, March 31, 2010

Tall Poppy Syndrome

Since the days of the infamous Aristotle etched his thoughts on parchment, Tall Poppy Syndrome has been documented throughout history. Given that some of you may not be familiar with the concept, TPS is a term used to describe a social phenomenon in which people with genuine merit are resented, attacked, cut down or criticized because their achievements distinguish them from their general peers.

I've often heard about this phenomenon, and outside obvious celebrity bashing, I had never actually witnessed it in person until just recently.

My husband and I recently dragged all of our children through what can only be described as a voyage into the second circles of hell last week. We took a 5 day trip to Melbourne. Drama's and nightmares and unwitting entrances into what could potentially have been the setting for a new slasher flick, I got to witness my first actual real life act of TPS.

Standing around at the RCH in Melbourne on Sunday afternoon, I was having a discussion about our goals for Nicola, and one of the things I raised was the fact that I was soooo excited about the prospect of being able to go to the UK Conference this year.

I was absolutely flabbergasted when one of the participants of the conversation laughed almost bitterly and responded with "It's nothing more than a Mr X. publicity stunt."

Now, I can't even begin to tell you on how many levels that is incorrect! I mean, I know how much work Mr X. and his beautiful wife Mrs X. have put into this event. And yes, there are one or two aspects of the event that are publicity driven, but seriously, how the hell else are we supposed to raise awareness of a condition so rare that most people will never even hear about it let alone meet someone who suffers from it?

But now, 3 days on from the moment those absinthal words were spoken, I have come to realise that it is a classic example of TPS.

Mr X. is one of those people that you often read about in those heartwarming stories that go out of their way to help others. He was the driving force behind the International Costello Syndrome Support Group and he has been one of the leading forces behind the conferences. He was also the very first person I ever spoke to about Costello Syndrome.

The day I was given Nicola's diagnosis he phoned me from the UK and listened to me bawl down the phone and virtually held my hand while I walked through those tentative first weeks.

He is part of the heart and soul of this group... and his support is invaluable to almost every member.

I guess that I should be thankful that despite the crap, there are people like Mr X. who still put their own needs aside to be there to support others. It's just sad that there are people who seem to delight in attacking and belittling their efforts and really it just goes to show that they are little more than sad, bitter and lonely individuals.

So why would someone want to attack a person as virtuous as Mr X.?

I guess there are as many reasons as there are stars in the sky... but at the end of the day, it comes back down to TPS.

The social phenomenon in which people with genuine merit are resented, attacked, cut down or criticized because their achievements distinguish them from their general peers.

All that aside, it was wonderful to be able to have a few days break, even if it was pure chaos! The girls had a great time, we got to do a couple of the sights and spend some wonderful down time as a family.

The girls absolutely loved going to the Zoo and it was wonderful to finally get a chance to meet up with one of my dearest and closest friends... (Love you Lizzie and miss you heaps!!!) and the girls loved going to Wonderland...

It was also great, although somewhat confusing, to be able to talk to Sue and Bronwyn again.

Though this meeting has now filled me with a lot of questions and a lot more confusion about the state of my daughter's health.

It seems to be the pattern that our lives are falling into now. Every time we get some answers, something else somewhere changes and we become even more confused and frustrated with the lack of answers or information that seems to be forthcoming.

Now, after all of that... I want to end this entry with a totally heartwarming note. Tuesday morning my brother arrived from North Queensland to help us with moving. He is very much a manly man type of guy... and has always been what I think is really a little bit afraid of Nicola because she's always been so fragile...

This morning he was playing with her and watching her respond and interact with him was just incredible... but the heart melting moment???

When my brother turned around and signed 'Good Girl' in Makaton to her.

I <3 my family, and despite everything, today I just feel blessed.

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