Talei is tall. She is also wayyyy thin.
She also has perfect model proportions (although her neck is two inches too long to match the Hellenic Ideal), and the most exquisitely fine and slender hands, the lucky git!
Spot which hands belongs to Talei!This is not usually a problem. Especially for us. We're an exceptionally tall family, forever producing men of around 6'5" tall and even our women, for generations, have hovered around 6 feet. Oh, apart from me, that is! I'm the Jessica Mitford of The Murphy Sisters!
So excessive height doesn't faze us and you have to read my post "The Murphy Giants" to understand why Talei's height became even remotely a problem ...
... however, it became even a greater problem than we ever could have imagined thanks to a great deal of dangerously unprofessional medical irresponsibility:
THE MARFAN'S DRAMA
I was already three years into my research into the Murphy Giants when Talei went to the dentist to have her impacted wisdom teeth removed: "I won't touch her without a medical certificate to say her heart's OK!" the dentist told Baby Jane.
"Why wouldn't her heart be OK?" Jane asked.
"Because she has Marfan's Syndrome!" the dentist replied with total and absolute certainty.
OK, that's a serious accusation, right? Marfan's Syndrome is a horrible genetic disorder that will, if you're not careful, kill you young! Jane knew that and, well, it's absolutely NOT something you just throw at a mother out of nowhere! Bad Dentist-Person! Bad, bad Dentist-Person!
Immediately Talei was raced over to the doctor. Her heart was fine! No problem whatsoever, which is quite a relief because, as you know, my mother had a congenitally deformed heart.
Jane was relieved, but then the doctor said, out of nowhere "You know, don't you, that she has Marfan's!"
And so the saga was underway!
"Why wouldn't her heart be OK?" Jane asked.
"Because she has Marfan's Syndrome!" the dentist replied with total and absolute certainty.
OK, that's a serious accusation, right? Marfan's Syndrome is a horrible genetic disorder that will, if you're not careful, kill you young! Jane knew that and, well, it's absolutely NOT something you just throw at a mother out of nowhere! Bad Dentist-Person! Bad, bad Dentist-Person!
Immediately Talei was raced over to the doctor. Her heart was fine! No problem whatsoever, which is quite a relief because, as you know, my mother had a congenitally deformed heart.
Jane was relieved, but then the doctor said, out of nowhere "You know, don't you, that she has Marfan's!"
And so the saga was underway!
Terrified Talei waiting forthe appointment
for the "second opinion"!
The second opinion? The doctor looked at the shape of her hands and said "Yup, those are Marfan hands.", then flexed her hand back as far as it would go and said "Yup, that's Marfan flexibility", then took out a tape measure, measured her and said "Yup, those are Marfan proportions. It's Marfan's all right!"
Talei and Jane were both devastated.
"She does NOT have Marfan's!" I said when I got the news, but no one was listening!
I was furious! And even more furious with the doctor because I'd measured Talei only months earlier and KNEW FOR A FACT that she was almost exactly the Hellenic Ideal ... yet the figures the doctor produced for her proportions had her with arms almost down to her knees. "He's wrong!" I kept telling Jane. "Those figures don't match the ones I got!" and "You only have to look at her to see she doesn't have longer-than-normal arms!" and "Just get out a tape measure and check her proportions for yourself. You'll see he's wrong!"
"Stop thinking you always know more than doctors!" Jane said, simply refusing to question the diagnosis!
And so it was on:
Talei and Jane were both devastated.
"She does NOT have Marfan's!" I said when I got the news, but no one was listening!
I was furious! And even more furious with the doctor because I'd measured Talei only months earlier and KNEW FOR A FACT that she was almost exactly the Hellenic Ideal ... yet the figures the doctor produced for her proportions had her with arms almost down to her knees. "He's wrong!" I kept telling Jane. "Those figures don't match the ones I got!" and "You only have to look at her to see she doesn't have longer-than-normal arms!" and "Just get out a tape measure and check her proportions for yourself. You'll see he's wrong!"
"Stop thinking you always know more than doctors!" Jane said, simply refusing to question the diagnosis!
And so it was on:
Word got out. Scouts from The Queensland Netball Association, who had been coming up from Brisbane to watch her play, immediately stopped coming to the games! And other parents started to call to say their children had also been diagnosed - by the same doctors, I should add - with Marfan's. Seems the whole town was riddled with this horrible genetic disorder.
Even Jessica, 6 foot 5" and so incredibly beautiful - perfect figure, perfect face, perfect skin, the Hellenic Ideal in every way - so perfect, even, she could walk into any modeling agency on earth and be immediately offered "million-dollar lifetime contracts"! Yes, even perfect Jessica was told she had Marfan's.
And they were all living terrified "safe" lives, unable to do or commit to doing anything, so as to protect their hearts and extend their life-span.
Talei was terrified too; like, to-the-bone terrified. She gave up netball "to protect her heart", and I noticed her computer was linked to all sorts of Marfan's websites and chatrooms, and that she was following the adventures of one feisty "Carpe Diem" Marfan's girl who frequently dressed like an ancient Egyptian pharaoh because ... well, isn't Amenhotep IV supposed to have had Marfan's.
Yup, everyone was convinced Talei HAD Marfan's Syndrome, including Talei, and that was that!
"She doesn't have Marfan's!" I kept saying, but no one was listening.
I was furious! It was all so wrong! Marfan's is a genetic disorder, right? To suddenly give this diagnosis to a single individual in one generation doesn't make sense. You'd have to have a long family history of the giant-ism; a family tree budded all over with exceptionally tall ancestors, all of whom died young, and who most likely didn't breed.
Yes, I know we indeed fit that profile, but only to a point. Yes, we have a family tree with giants up-the-whazoo, but our Giants all lived to ripe old ages, had zillions of kids, were forever stealing each others cattle, stealing each others wives, and in consequence fighting big Irish battles. No "living safe" for any of Our Guys! And, besides, for three years, I'd been deep into the subject of Giants; reading my way through thousands of books, only finding snippets here and there, trying to put together all I could find on our Murphy brand of Giantism, and knew for a fact ...
... we Murphys produced a different type of Giant!
But NO ONE was interested in what I'd found.
But, just look at Sergeant Murphy, right? Of Barnum Circus fame! "The Strongest Man in the World"! A giant who was daily showing off "Feats of Strength" and tossing elephants or whatever! A Marfan's Giant simply wouldn't have survived!
And I have a vague recollection of dad talking about HIS Great Uncle Patrick, who was once classified as the tallest man in the world, saying how, after Patrick retired at the age of 60, he so craved exercise he took a job as the local postman and walked over 40 miles a day, believing that, since he was going to be doing the walk anyway, he may as well get paid for it ... and then he'd come home and eat five dinners in a row. In what way does any of this suggest Marfan's?
And then there was that magnificent 1775 scientific tome, "Human Anomalies"! OK, you may think "What did they know back in 1775?" but you have to recall that this book is one of "The First Children of the Enlightenment", and the authors were being so, well, "enlightened", knowing they were inventing Science as they went along, so were all careful objectivity and measurements and thorough investigations and careful catagorising and cataloging. I know I only read the chapter on "Giants" but, boy, from what I saw this is one seriously mighty text ... and they really should re-issue it because there's a lot in there that is still relevant today.
Like Marfan's right? Yes, I know Marfan's wasn't "discovered" until ... what ... 1865? Nearly a century later! Yet, read the book for yourself! There's a definite description of "Marfan's Giants" in there, although, naturally, that isn't what they call it!
And also note that, although they used different terms, they classified their "Marfan's Giants" in a different category to "Blood Giants" ... and that the book actually specifically stated that the Murphy Family produced Blood Giants!
"WE DO NOT HAVE THE GENE FOR MARFAN'S!" I kept saying, but no one was listening!
Honestly! Gosh, people make me sooo cross!
But then after just less than three years of "living safe and terrified", everything changed! And it happened in Typical Dramatic Denise Fashion too:
2008, holidaying in Australia, we were all at the Fairground, the kids off doing something else, and Jane was bringing me up to date on the Marfan's front ...
... "She does NOT have Marfan's!" I was saying for the gazillionth time without Jane listening, when ...
... in one of those curious and extraordinary co-incidences that have enriched my entire life ...
... two Valkyrie Goddesses, both nearly 7 foot tall and all golden-haired, dramatically dressed gorgeousness, hove into view. The crowd fell back in amazement. Awed silence! Stunned! So clearly NOT drag queens, yet so magnificent! Ooh WOW!!! The Goddesses ignored it all, obviously used to it, and were talking together in deep and serious conversation.
And, as they stalked past us, a single word of that conversation wafted back on the breeze!
"They said Marfan's!" I said to Jane. "Did you hear? They said Marfan's!"
"No they didn't!" said Jane.
"Yes, they did!"
"No they didn't!"
"I'm going to check!" I said and so I raced off after them. "Did you just say Marfan's?" I asked them both, craning my neck upwards.
"Yes! We're the Australian Marfan's Support Group! Why do you ask?"
Ahhhhhhhh! Life is good, isn't it!
"You have no idea how much we need you. Please, can you help us?" I said, and they kindly came back with me to talk to Jane.
What a wonderful conversation it was! Exactly what Jane needed to hear. Although they were not exactly Goddesses sent from some Valkyrie Heaven - they were simply holidaying from Melbourne's winter on The Great Barrier Reef - they were a godsend nonetheless:
Turns out, both of these Amazons had their lives blighted by a diagnosis of Marfan's! "I was immediately dropped from the Australian Olympic Basketball Team!" said one, and "My parents said university was a waste of time for me!" said the other. And then, after decades of "playing it safe" and "protecting their hearts!", the Marfan's genetic test came out. Naturally, they were first in line, which is where they first met ...
... and, as it turns out, neither had it! Twenty wasted years! Time they'd never get back again! Time spent sitting around, unable to do anything or commit to anything so doing nothing and being safe! They were furious. And that's when they started the Australian Marfan's Support Group with the express aim to NOT allow anyone else to be given a Marfan's diagnosis without a genetic test for confirmation.
They had access to government funding, they said, for a geneticist, and they'd even send one up to Innisfail if there were enough folk to warrant it ...
... and right then Talei returned to ask for more money: "This is her?" they both cried out! And "For heaven's sake!" "Ridiculous!" "Those are NOT Marfan's proportions!" "The main manifestations involve the cardiovascular, musculoskeletal, ocular, and central nervous systems. And she doesn't have any problems with those." and "If her heart is fine, why is she playing safe!" and "She's not wearing glasses!" "Eye problems are a major part of the diagnosis!"
"She does NOT have Marfan's!" they told Jane, and this time, finally, Jane was listening!
Well, they were lovely and followed up, and Jane was given links to government funding for genetic testing, and, to get the numbers to bring a geneticist into town, Jane called a meeting of all the families who'd been given a Marfan's diagnosis, (and, looking at them all gathered together, Jane could see for herself the ones who 'most likely did' and how different they were from the folks, like Talei, who were simply "tall and thin".), and they all submitted forms and the geneticist arrived ...
... and took one look at Talei and said "I've seen a great many people with Marfan's Syndrome and I'm so convinced she doesn't have it, I'm not going to even bother testing her." and "Doing a genetic test for Marfan's is like reading "War and Peace" looking for a missing "e". It's not easy and I only do it when there's a question mark involved, and there's no question mark here. She does NOT have Marfan's! It's that simple!"
And with those words, the Marfan's Drama was over! Thankfully, it was after only three wasted years, sitting around, doing nothing and playing it safe! With so many dangerously irresponsible diagnoses around, she was very, very lucky!
Jessica didn't have Marfan's either!
But the best part of this stupid, stupid episode is the discovery there's this feisty "Carpe Diem" Marfan's girl out there, who frequently dresses like an ancient Egyptian pharaoh in honour of Amenhopet IV, believing that "if they're going to stare at me anyway, I may as well give them something to stare at!", and who is enjoying every single day of her life, however long that may be! Yo, you GO, Girl!
And the main thing to be gained from going through this heinous experience is:
DO NOT ACCEPT A DIAGNOSIS FOR MARFAN'S WITHOUT CONFIRMATION FROM A GENETICIST!
And, if you're in Australia, to get in touch with The Valkyrie Goddesses (I think this is theirs) and they'll hook you up with government funding to pay for the genetic tests!
Even Jessica, 6 foot 5" and so incredibly beautiful - perfect figure, perfect face, perfect skin, the Hellenic Ideal in every way - so perfect, even, she could walk into any modeling agency on earth and be immediately offered "million-dollar lifetime contracts"! Yes, even perfect Jessica was told she had Marfan's.
And they were all living terrified "safe" lives, unable to do or commit to doing anything, so as to protect their hearts and extend their life-span.
Talei was terrified too; like, to-the-bone terrified. She gave up netball "to protect her heart", and I noticed her computer was linked to all sorts of Marfan's websites and chatrooms, and that she was following the adventures of one feisty "Carpe Diem" Marfan's girl who frequently dressed like an ancient Egyptian pharaoh because ... well, isn't Amenhotep IV supposed to have had Marfan's.
Yup, everyone was convinced Talei HAD Marfan's Syndrome, including Talei, and that was that!
"She doesn't have Marfan's!" I kept saying, but no one was listening.
I was furious! It was all so wrong! Marfan's is a genetic disorder, right? To suddenly give this diagnosis to a single individual in one generation doesn't make sense. You'd have to have a long family history of the giant-ism; a family tree budded all over with exceptionally tall ancestors, all of whom died young, and who most likely didn't breed.
Yes, I know we indeed fit that profile, but only to a point. Yes, we have a family tree with giants up-the-whazoo, but our Giants all lived to ripe old ages, had zillions of kids, were forever stealing each others cattle, stealing each others wives, and in consequence fighting big Irish battles. No "living safe" for any of Our Guys! And, besides, for three years, I'd been deep into the subject of Giants; reading my way through thousands of books, only finding snippets here and there, trying to put together all I could find on our Murphy brand of Giantism, and knew for a fact ...
... we Murphys produced a different type of Giant!
But NO ONE was interested in what I'd found.
But, just look at Sergeant Murphy, right? Of Barnum Circus fame! "The Strongest Man in the World"! A giant who was daily showing off "Feats of Strength" and tossing elephants or whatever! A Marfan's Giant simply wouldn't have survived!
And I have a vague recollection of dad talking about HIS Great Uncle Patrick, who was once classified as the tallest man in the world, saying how, after Patrick retired at the age of 60, he so craved exercise he took a job as the local postman and walked over 40 miles a day, believing that, since he was going to be doing the walk anyway, he may as well get paid for it ... and then he'd come home and eat five dinners in a row. In what way does any of this suggest Marfan's?
And then there was that magnificent 1775 scientific tome, "Human Anomalies"! OK, you may think "What did they know back in 1775?" but you have to recall that this book is one of "The First Children of the Enlightenment", and the authors were being so, well, "enlightened", knowing they were inventing Science as they went along, so were all careful objectivity and measurements and thorough investigations and careful catagorising and cataloging. I know I only read the chapter on "Giants" but, boy, from what I saw this is one seriously mighty text ... and they really should re-issue it because there's a lot in there that is still relevant today.
Like Marfan's right? Yes, I know Marfan's wasn't "discovered" until ... what ... 1865? Nearly a century later! Yet, read the book for yourself! There's a definite description of "Marfan's Giants" in there, although, naturally, that isn't what they call it!
And also note that, although they used different terms, they classified their "Marfan's Giants" in a different category to "Blood Giants" ... and that the book actually specifically stated that the Murphy Family produced Blood Giants!
"WE DO NOT HAVE THE GENE FOR MARFAN'S!" I kept saying, but no one was listening!
Honestly! Gosh, people make me sooo cross!
But then after just less than three years of "living safe and terrified", everything changed! And it happened in Typical Dramatic Denise Fashion too:
2008, holidaying in Australia, we were all at the Fairground, the kids off doing something else, and Jane was bringing me up to date on the Marfan's front ...
... "She does NOT have Marfan's!" I was saying for the gazillionth time without Jane listening, when ...
... in one of those curious and extraordinary co-incidences that have enriched my entire life ...
... two Valkyrie Goddesses, both nearly 7 foot tall and all golden-haired, dramatically dressed gorgeousness, hove into view. The crowd fell back in amazement. Awed silence! Stunned! So clearly NOT drag queens, yet so magnificent! Ooh WOW!!! The Goddesses ignored it all, obviously used to it, and were talking together in deep and serious conversation.
And, as they stalked past us, a single word of that conversation wafted back on the breeze!
"MARFANS"
"They said Marfan's!" I said to Jane. "Did you hear? They said Marfan's!"
"No they didn't!" said Jane.
"Yes, they did!"
"No they didn't!"
"I'm going to check!" I said and so I raced off after them. "Did you just say Marfan's?" I asked them both, craning my neck upwards.
"Yes! We're the Australian Marfan's Support Group! Why do you ask?"
Ahhhhhhhh! Life is good, isn't it!
"You have no idea how much we need you. Please, can you help us?" I said, and they kindly came back with me to talk to Jane.
What a wonderful conversation it was! Exactly what Jane needed to hear. Although they were not exactly Goddesses sent from some Valkyrie Heaven - they were simply holidaying from Melbourne's winter on The Great Barrier Reef - they were a godsend nonetheless:
Turns out, both of these Amazons had their lives blighted by a diagnosis of Marfan's! "I was immediately dropped from the Australian Olympic Basketball Team!" said one, and "My parents said university was a waste of time for me!" said the other. And then, after decades of "playing it safe" and "protecting their hearts!", the Marfan's genetic test came out. Naturally, they were first in line, which is where they first met ...
... and, as it turns out, neither had it! Twenty wasted years! Time they'd never get back again! Time spent sitting around, unable to do anything or commit to anything so doing nothing and being safe! They were furious. And that's when they started the Australian Marfan's Support Group with the express aim to NOT allow anyone else to be given a Marfan's diagnosis without a genetic test for confirmation.
They had access to government funding, they said, for a geneticist, and they'd even send one up to Innisfail if there were enough folk to warrant it ...
... and right then Talei returned to ask for more money: "This is her?" they both cried out! And "For heaven's sake!" "Ridiculous!" "Those are NOT Marfan's proportions!" "The main manifestations involve the cardiovascular, musculoskeletal, ocular, and central nervous systems. And she doesn't have any problems with those." and "If her heart is fine, why is she playing safe!" and "She's not wearing glasses!" "Eye problems are a major part of the diagnosis!"
"She does NOT have Marfan's!" they told Jane, and this time, finally, Jane was listening!
Well, they were lovely and followed up, and Jane was given links to government funding for genetic testing, and, to get the numbers to bring a geneticist into town, Jane called a meeting of all the families who'd been given a Marfan's diagnosis, (and, looking at them all gathered together, Jane could see for herself the ones who 'most likely did' and how different they were from the folks, like Talei, who were simply "tall and thin".), and they all submitted forms and the geneticist arrived ...
... and took one look at Talei and said "I've seen a great many people with Marfan's Syndrome and I'm so convinced she doesn't have it, I'm not going to even bother testing her." and "Doing a genetic test for Marfan's is like reading "War and Peace" looking for a missing "e". It's not easy and I only do it when there's a question mark involved, and there's no question mark here. She does NOT have Marfan's! It's that simple!"
And with those words, the Marfan's Drama was over! Thankfully, it was after only three wasted years, sitting around, doing nothing and playing it safe! With so many dangerously irresponsible diagnoses around, she was very, very lucky!
Jessica didn't have Marfan's either!
But the best part of this stupid, stupid episode is the discovery there's this feisty "Carpe Diem" Marfan's girl out there, who frequently dresses like an ancient Egyptian pharaoh in honour of Amenhopet IV, believing that "if they're going to stare at me anyway, I may as well give them something to stare at!", and who is enjoying every single day of her life, however long that may be! Yo, you GO, Girl!
And the main thing to be gained from going through this heinous experience is:
DO NOT ACCEPT A DIAGNOSIS FOR MARFAN'S WITHOUT CONFIRMATION FROM A GENETICIST!
And, if you're in Australia, to get in touch with The Valkyrie Goddesses (I think this is theirs) and they'll hook you up with government funding to pay for the genetic tests!
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