Wednesday, August 06, 2014

About that Syndrome....

Sebastian is afflicted with a hereditary genetic condition known as Bithil Syndrome. It gives him yellow eyes, incredible hearing and eyesight, quick reflexes, and (although he'd have no way of knowing it without an x-ray) a funky lower vertebra. Although I have been accused (rather nastily, I might add) of making this up, I didn't. I swear, I didn't. The problem is, there are literally thousands of weird syndromes, and most of them are so rare that if you look them up on Google, you won't find them. But just because something doesn't turn up in Google doesn't mean it doesn't exist.

So how did I hear about it? Well, it all began some  eleven years ago when my older daughter took a freshman biology course at LSU. For extra credit the students could volunteer to have their DNA tested, and so she volunteered. Because we were very interested in genealogy at the time, she called me up rather excited to tell me she had this weird thing they called "Bithil Syndrome," and they had asked to run more tests on her. (To complicate matters, she may have misspelled it; it could actually be Bithel.) Eventually, the geneticist told her she had the purest expression of the syndrome they'd yet found in the western hemisphere. Now, I've always known my daughter had incredible, unnatural hearing; when she was a little girl, you could whisper something in the living room, and she'd open her bedroom door at the other end of the house and shout, "I heard that!"(Yes, it was a pain.) She could read highway signs waaaay down the Interstate. The only aspect of it she doesn't have to any great extent is the quick reflexes; hers are only slightly above normal. And she doesn't have yellow eyes because the color is recessive to brown and, like me, my daughter has brown eyes. But my father had yellow eyes. He was also an incredible marksman and, when we were kids, he spent a great deal of his time yelling at us not to make so damned much noise. So I know exactly where it came from.

Since I was in the middle of developing my idea for the Sebastian series at the time, it seemed like a cool thing to give Sebastian a real genetic condition that made him just a little bit different. It also provides an unusual, identifiable thread for him to follow in his quest to untangle the questions about his paternity (something that comes up again in a significant way in Book #11, which I'm writing now). If I'd been clever, I'd have contacted the geneticist involved and asked for more information, but I didn't, and at this point my daughter can't even remember his name. Because she's now a medical doctor herself, she keeps promising she's going to look it up for me. But she's still a resident and I quit holding my breath long ago.

So, do I have the syndrome? Yes and no. I have that damned funky vertebra in my lower back. But my eyesight was seriously damaged when I was in oxygen for a week after birth. I do still see very well at night (I only recently realized that most people don't see what I see), but the down side to that is that bright light kills you and family members who don't have the syndrome constantly complain that you keep your house dark. Ironically, from my mother I inherited another genetic defect that causes hearing impairment. In me, it averaged things out so that my hearing is only slightly above normal (enough that I am still driven crazy by electric hums that most people don't hear and I wear earplugs in the cinema). But my younger daughter, who inherited the one genetic sequence and not the other, is actually hearing impaired. (Yeah, she's cranky about it.)

So there you have it. This is why I generally avoid talking about it--because it's a sort of personal thing, and the truth is that when I started the series all those years ago I didn't realize just how rare it is, or that the series would go on so long, or that this aspect of it would generate so much interest.




35 comments:

Sue said...

Fascinating... So since Simon has yellow eyes, can we look forward to Sebastian and Hero raising a child with this syndrome? Like Amelia Peabody, you can groom Simon to take over the family business. LOL

Barbara Butler McCoy said...

This is pretty fascinating - sorry some remarks have been nasty, especially since you addressed the syndrome at the end of one of the books. So, Baby Simon has it and -Ack! my brain is shorting out! - then there's the Sebastian-look-alike highwayman/smuggler ... does he have it, too? This is one of the aspects of the series that keeps me intrigued ;)

cs harris said...

Sue, yes, Simon has it.

Barbara, I can only figure they must have Googled it, and when nothing turned up, they jumped to the conclusion I'd invented the whole thing and rushed to Amazon comets to complain. And yes, Knox has it, too!

Anonymous said...

Thanks for posting about it again. I know you have done it previously. I can't wait 'til your daughter gets out of residency and can do more research for us, um, I mean you. I just love that you gave it to Simon (and that his yellow eyes will drive his grandfather crazy, tee, hee). Hope writing on the next one is flowing smoothly. Can't wait to find out more about Sebastian's heritage. Sabena

Anonymous said...

C- this was great information. i didn't realize this was an actual syndrome. and that just makes it even more interesting. and anybody who says mean things like are just jealous. there is a lot of that in the world sadly. i think all their children should have it - that would really make Jarvis nuts! good luck on #11! best, ali

paz said...

Once upon a time, people wrote thank you notes. Now people write rude and mean spirited rants, the more public the better. Amazing when you think about it.

And LOL to the idea that if you can't find it in the internet, it must *not* be true!!

I just finished re-reading "Serpents," which I think is my favorite book because of this scene: "Jarvis's famed self-possession slipped. Sebastian...knew in that instant that Jarvis would never forgive him for ... having been privy to the enormity of his failure" LOVE it.

cs harris said...

Sabena, she has three more years, so it'll be a while! And the book is going fairly well, finally. Although I'm afraid it's going to be long.

Ali, I don't know if I can go through another of Hero's pregnancies!

Paz, I think it must have something to do with anonymity--it brings out the nasty in certain people. And yes, I loved that, too; one can just imagine Jarvis's chagrin.

Anonymous said...

Ooooo....long. I can do long. That sounds just lovely to me. Sabena

Amy said...

I was intrigued by this condition as well. When I first read that Sebastian had yellow eyes I kept wondering are they yellow like a banana or more of a gold yellow. I imagine that your dad's eye color startled some people.

Lynne said...

But Candy, this is just about the most fascinating story - think how unique it makes you and the girls. I always wondered about Sebastian's singular qualities and now you tell us he was for real...all very cool. Thanks for sharing all the details...and pay no attention to the nay-sayers. What do they know?

Anonymous said...

C- hey what a poor Sebastian - he really wants a girl. You will just have to be brave like Hero. ;-)
Best, Ali

JustWingingIt said...

Long? There is no such thing as too long of a book where Sebastian and Hero are concerned. I usually think the ending comes too quickly and am loathe to leave the world behind. But that's just me. :)

Very interesting about the syndrome and your family's very real life experience with it. I can definitely understand why having a child who can hear everything would be super annoying...and inconvenient. lol

Best wishes with the writing for book 11. I have every confidence that you'll turn out another winner.

Veronica

cs harris said...

Sabena, the big problem with long is that it takes longer to write!

Amy, my dad's eyes were more of a tawny gold. They were actually very pretty. I suppose I used the word "yellow" because that's the word used in the syndrome description. But then, scientists do tend to drive straight to the heart of things.

Lynne, it can actually be a bit of a pain. My daughter and I live in sunglasses. And she is constantly embarrassed by hearing things she shouldn't--when we sit out on our gallery, she can hear conversations INSIDE our neighbors' houses. And when your husband and other daughter are hearing impaired (Steve's is from the war), watching television is a challenge; either they can't hear, or Sam and I wear earplugs.

Ali, I know; I really want that daughter, too. Actually, the newborn is more of a handicap than the pregnancy.

Veronica, it was indeed a trial! The weirdest part was that I simply could not understand HOW her hearing could be so good. My dad was actually deaf in one ear from the war, so while I knew noise bothered him, he was nothing like Sam.




Cat said...

I think it makes the books more special, something no one else has, real and not paranormal.

Glad the book will be long, its bad to read fast and then wait, and wait, and wait...kidding about that part. Kind of like poor Hero-pregnant for a long time.

Lynne said...

I do feel for your daughter - an unintentional eavesdropper must be horrid. But you and Steve will manage - my dad was slightly deaf all his life and mom could here a pin drop. Oh, dear, the fights over the tv volume. But they managed. But I still find it so interesting that it really is a syndrome that exists ...and it makes the books so much better to me. (I like Ali's idea - give it to every kid Hero has and just annoy the crap out of her father ...oooh, the plot ideas...)

Helena said...

It must have been something of a relief for your daughter to have an explanation for her unusual hearing. And it might be helpful in her career: the relative saying to the patient just after she leaves "you should have told her about X", where X is the symptom which solves the diagnosis!

I've never questioned that the syndrome was real. I seem to remember your explaining it in the first or another early book, and that was good enough for me. I'm sorry you've had nasty comments from some readers, but thank you for the more detailed description.

cs harris said...

Cat, it's funny, but I don't like to read long books. So I always worry when something I'm writing runs long.

Lynne, fortunately, we rarely have time to watch tv, so it isn't an issue that often. My younger daughter simply turns on the subtitles on movies.

Helena, yes, sometimes it's embarrassing and sometimes it can be very useful!

Suzanne said...

How fascinating. It must be really difficult to have such acute hearing these days. How would your daughter have coped with the noise in cinemas, or worse, nightclubs. My hearing is only normal and I have trouble with them. They are so loud now that it actually hurts and I tend to avoid them.

It sounds great that your new book is long. We can never get too much of Sebastian and co.!!

Susan J. said...

I think it is so irritating the way younger people see the Internet as something like the Holy Grail. Of course not everything is going to be on it, it's only as good as the data entered into it! My 87 year old father has been collecting old books for about 60 years and I'm sure as hell many of them are not mentioned on Google. Only recently he gave my husband a rare book about the history of underground London and my husband could find no trace of it on Google. I suppose if he mentioned it on a blog or something, younger people would deny it existed, even though he can hold it as an actual book in his hand! For God's sake, technology is only a tool, wake up and smell the roses! Think for yourselves.

Sherry said...

I did Google the syndrome, and when I didn't find it, I assumed you made it up. As authors do.

Getting irritated with an author who writes fiction for possibly making something up is kind of odd.

It's cool that it's a real thing, though.

Maureen said...

I googled it also...nothing. But fascinating, as Sue said. I am sure it must be difficult to share personal details of your private life as you have with us. Thank you for sharing.

cs harris said...

Suzanne, I suspect they hurt a lot of people's ears, and they are really bad for everyone's hearing.

Susan, yes, I discovered when I Googled one of the books I lost in Katrina that not all books are there. We get so used to it....

Sherry, I'm fascinated by the way different people experience the world differently because of the variations in their senses. My dad was colorblind.

Maureen, it can be awkward, yes. But so much of what I write comes out of my own experiences that it sometimes becomes necessary.

Susan J. said...

How awful it must have been to lose treasured books in Katrina. I would hate to lose some of mine, such as my copy of 'Pride and Prejudice' which I have had since I was aged sixteen, in 1970. It is an edition that was published by Macmillan, with illustrations by Charles C Brock, in 1901. The spine is going a bit but I would not part with it for the world. It has an inscription in a copperplate hand which says 'Irene C Hall from Cecil and Wilfrid, 19th October 1902.' I often wonder who they all were and if Irene enjoyed Austen as much as I do?

Susan J. said...

Whoops! I mean Charles E Brock!

cs harris said...

Susan, that sounds like a great book. The spine can probably be reinforced without too much trouble. (Steve has been acquiring bookbinding skills since marrying me, and is slowly working his way through me old books). The most heartbreaking thing I lost in Katrina was a book my dad published (he was a historian) and had inscribed to me shortly before he died. Before I threw it away, I did tear out that page so I could save it, mud stains and all.

Susan J. said...

How awful to have your Dad's book ruined like that, such a personal loss.

Coach Factory said...

polo ralph lauren outlet, gucci handbags, polo ralph lauren, prada handbags, kate spade handbags, christian louboutin shoes, prada outlet, coach purses, oakley sunglasses, ray ban outlet, michael kors outlet store, longchamp handbags, louis vuitton outlet, louis vuitton handbags, oakley vault, michael kors outlet, michael kors outlet online, louis vuitton outlet online, red bottom shoes, true religion, coach outlet, christian louboutin outlet, coach outlet store online, nike air max, ray ban sunglasses, michael kors outlet online, longchamp outlet online, chanel handbags, tiffany and co jewelry, kate spade outlet online, cheap oakley sunglasses, nike air max, burberry outlet online, jordan shoes, michael kors outlet online, louis vuitton, nike shoes, louboutin shoes, michael kors outlet online, nike free, tory burch outlet, coach outlet, burberry outlet online, louis vuitton outlet, longchamp outlet

Coach Factory said...

hollister, longchamp, mulberry, longchamp pas cher, nike free, scarpe hogan, guess pas cher, hollister, oakley pas cher, burberry pas cher, timberland, air max pas cher, hermes pas cher, air jordan, nike air max, michael kors uk, abercrombie and fitch, sac vanessa bruno, nike roshe run, nike free pas cher, north face, sac michael kors, nike trainers, chaussure louboutin, true religion outlet, ray ban uk, louis vuitton, converse pas cher, louis vuitton uk, ralph lauren, nike air max, new balance pas cher, michael kors canada, lacoste pas cher, sac louis vuitton, true religion outlet, air max, nike blazer pas cher, nike air force, louis vuitton pas cher, tn pas cher, longchamp, nike huarache, barbour, ralph lauren pas cher, lululemon, ray ban pas cher, vans pas cher, north face pas cher, nike roshe

Coach Factory said...

ugg soldes, canada goose outlet, mcm handbags, moncler outlet, valentino shoes, ugg boots, marc jacobs outlet, soccer jerseys, nfl jerseys, herve leger, ugg outlet, chi flat iron, moncler, mont blanc pens, birkin bag, canada goose pas cher, canada goose outlet, north face outlet, moncler, insanity workout, bottega veneta, ferragamo shoes, vans outlet, mac cosmetics, north face jackets, soccer shoes, lululemon outlet, ghd, babyliss pro, beats headphones, jimmy choo shoes, canada goose uk, uggs outlet, canada goose outlet, hollister, moncler, p90x workout, giuseppe zanotti, canada goose, uggs on sale, abercrombie and fitch, wedding dresses, celine handbags, ugg, new balance outlet, asics shoes, roshe run, rolex watches, reebok outlet, instyler ionic styler

Dongdong Weng said...

20150527wengdogndong
cheap jerseys
louis vuitton outlet
toms outlet
timberland boots
michael kors
jordan 11
cheap toms
coach outlet store online
christian louboutin outlet
coach factory outlet
gucci handbags
chanel uk
michael kors
abercrombie & fitch
oakley sunglasses outlet
cheap lululemon
abercrombie store
louis vuitton
rolex watches outlet
louis vuitton outlet
abercrombie & fitch
louis vuitton outlet
jordan 11 low
louis vuitton
jordan 4
louis vuitton handbags
christian louboutin
nike air max
coach factorty outlet
coach outlet
polo ralph lauren
coach factory outlet online
oakley sunglasses wholesale
michael kors outlet online

Unknown said...

michael kors
timberland canada
louis vuitton
fake watches
coach outlet store online
louis vuitton
prada bags
louis vuitton
michael kors outlet
prada bags
michael kors outlet
running warehouse
louis vuitton
abercrombie outlet
jordan 9
cheap jerseys
true religion outlet
cheap oakley sunglasses
jeremy scott adidas
michael kors outlet
coach outlet
coach factory outlet online
coach outlet stores online
coach outlet online
michael kors outlet
air jordan 8
true religion kids
ray ban eyeglasses
ray ban glasses
white timberland boots
louis vuitton outlet
michael kors
mont blanc mountain
ray ban sunglass
hollister outlet
true religion outlet online
20150706xiong

dong dong said...

2015924dongdong
ugg boots sale
ugg boots sale
Authentic Louis Vuitton Bags Discount
toms outlet
Jordan 3 Retro 2015
louis vuitton
ray-ban sunglasses,ray ban sunglasses,ray bans,rayban,ray ban wayfarer,raybans,ray ban glasses,ray ban aviators,ray ban clubmaster,ray ban eyeglasses,cheap ray bans,ray bans sunglasses,ray ban aviator,ray bands,fake ray bans,ray ban prescription glasses,ray ban outlet,ray ban canada,ray ban sunglasses sale,ray ban sale
Louis Vuitton Outlet Mall Store
michael kors handbags
football jerseys cheap
michael kors outlet online
Coach Factory Outlet Clearance
canada goose
Coach Outlet Online Discount Sale
mihchael kors bag
Montblanc Pen Refills Outlet
hollister uk sale
Louis Vuitton Official Site Outlet Stores
Designer Louis Vuitton Bags Discount
timberland outlet
Air Jordan 6 Champagne Bottle

chenlina said...

chenlina20160329
cheap nfl jerseys
coach factory outlet
louis vuitton outlet
supra shoes
air jordan shoes
nike store
canada goose
nike blazers uk
cheap air max
nike huarache shoes
adidas wings
louis vuitton handbags
coach outlet
nike uk
oakley sunglasses outlet
louis vuitton
louboutin
cheap basketball shoes
ugg boots outlet
louis vuitton
coach outlet
polo ralph lauren
oakley sunglasses
louis vuitton
gucci outlet
louis vuitton outlet online
moncler jacket
ugg on sale
adidas superstars
louis vuitton outlet
marc jacobs handbags
louis vuitton outlet
ray-ban sunglasses
louis vuitton handbags
ralph lauren outlet
longchamp le pliage
coach outlet store online
oakley canada
abercrombie clothing
gucci outlet
as

chenlili said...

chenlili20160617
ed hardy outlet
christian louboutin sale
nike sb dunks
adidas uk
coach outlet
louboutin shoes
gucci outlet
ralph lauren outlet
toms outlet
hollister kids
nike uk
toms wedges
replica rolex watches
coach outlet store online
adidas superstar trainers
michael kors purses
louis vuitton
hollister clothing
supra shoes
tory burch outlet online
nike uk
oakley sunglasses
asics outlet
michael kors outlet
oakley outlet
michael kors handbags
louis vuitton purses
hollister uk
jordan retro 4
louis vuitton handbags
longchamp le pliage
kate spade outlet
louis vuitton outlet stores
lebron shoes for kids
gucci belts
louis vuitton purses
coach canada
ralph lauren outlet

Esraa Abbas said...

http://www.prokr.net/2016/09/control-cockroaches-8.html
http://www.prokr.net/2016/09/control-cockroaches-7.html
http://www.prokr.net/2016/09/control-cockroaches-6.html
http://www.prokr.net/2016/09/control-cockroaches-5.html
http://www.prokr.net/2016/09/control-cockroaches-4.html
http://www.prokr.net/2016/09/control-cockroaches-3.html
http://www.prokr.net/2016/09/control-cockroaches-2.html
http://www.prokr.net/2016/09/control-cockroaches.html