Tourettes -a REAL explanation

So since the name of my blog is "Tourettes, Life, and Other Disorderly Things," it stands to reason that I ought to write a post about Tourettes Syndrome. This particular post is going to be in layman's terms (I'm no doctor, so I won't speak like one) and is going to include some of my personal opinions as someone with this disorder (may I point out the word "disorder" as opposed to "disability"). I hope you enjoy!

While I learned the hard way NEVER to ever ever ever post a Tourettes joke on a TS support group page's wall unless you have a hankering for some serious hate your way, I have always been very comfortable in my own skin, and I therefore am going to start this post off with a joke. Why? Because I can! Honestly, I think jokes are always funnier when you can relate to them, don't you?

Q: "How many Tourettesy people does it take to screw in a light bulb?"

A: "Ten plus a therapist! One to hold the bulb, eight to hold the remaining -*twitch* *crash* *shatter*- .....yet unbroken light bulbs, and the therapist to stop the last one from mentally screwing the bulb."

Yes, I know the joke is a little bit dirty, but it brings me to my first point:  
Society's Outlook on Tourettes Syndrome.
It seems like there are two kinds of people when it comes to Tourettes: the 'perverted' and the 'oversensitive.'

Let me start with the 'perverted.' These are the folks who stress the point of the involuntary bad language and crude gestures only a percentage of the Tourettes community possess. The enormous weight they put on this particular tic (involuntary verbal or motor action) is like a kid hovering a magnifying glass over an ant, making the actually quite tiny creature look like an enormous mega-bug equipped to battle Godzilla -and maybe a little more flammable, too. Basically what I am saying is that less than 10% of Tourettesy people have the tic known as Coprolalia -the stereotyped swearing, derogatory remarks, and overall potty mouth, and those that possess it do not always say it out loud -many (most) patients have it on a mental-only basis. I will additionally point out that just as not all people who have Tourettes have Coprolalia, not all people that have Coprolalia have Tourettes. If swearing etc. is their only tic, it is NOT Tourettes because Tourettes Syndrome specifically is a combination of vocal and motor tics, not one or the other. Anyway, to recap, the 'perverted' side of society are the ones that misguidedly assume and emphasize that all or most Tourettesy people say or do nasty things.

Now onto the "oversensitive' types. These are the folks who have cringed every time I used the word "Tourettesy" as an adjective describing people with TS, blow up on people who make TS related jokes, and are overall appalled that anyone ask a direct TS related question to a Tourettesy person or dare ask "what are you doing?" Oversensitives have this weird, blown up idea that people with disorders (or disabilities) might cry or kill themselves or something out of sadness or embarrassment over their condition, and therefore anyone who mentions it outside of the bounds of "you poor dear" should be burned at the stake for potentially hurting the disordered's (or disabled's) feelings.Let me clarify one thing. Tourettesy people usually are born with the condition (definitely with the gene) and show tics very early on in life, so we have no comparison to life with it as opposed to without it. We don't sit around and wish were were like everybody else or dream of what it would be like to not have tourettes. It's just this quirk we have. In fact, some (like me) don't even know when we are doing the tic! It's only when somebody reminds us, "Hey, Kim, I'm trying to take a picture. Unless you want crab-face all over Facebook, come back to reality a moment and smile!" (the crab face is reference to my most distinguishable tic in which I smash my hands into my face and wiggle my fingers like the mouth of a crawdad, by the way.) And as for when people ask us "what are you doing?" I can't think of any reason a person with TS is ever offended or should be. I'd ask too! When I am asked, I simply answer that I have Tourettes Syndrome. Most find this intriguing and ask more questions, which I readily and happily answer. Others say "okay" and move on. No big deal. The oversensatives apologize and dribble all over themselves in humiliation. Ughhhhhh.

Moving on.
What is Tourettes?
  According to Wikipedia, "Tourette syndrome... is an inherited neuropsychiatric disorder with onset in childhood, characterized by multiple physical (motor) tics and at least one vocal (phonic) tic. These tics characteristically wax and wane, can be suppressed temporarily, and are preceded by a premonitory urge. Tourette's is defined as part of a spectrum of tic disorders, which includes transient and chronic tics."

Now, time for the layman's terms. (You're welcome.) 

Tourette's Syndrome (or TS for short) is......

• "an inherited neuropsychiatric disorder" In other words, it is passed down genetically from one's parents then to their offspring, etc. and is a disorder (in this case a specifically mutated gene) in one's nervous system. 
•  "characterized by multiple physical (motor) tics and at least one vocal (phonic) tic" TS includes motor tics (stuff you do with your limbs/muscles/etc) AND vocal tics (noises/sounds made with -you guessed it- the mouth and throat). Always both. Period.
• "tics characteristically wax and wane" The tics will usually come and go or get better and worse periodically. In example, if you have a tic that stays all your life, you will notice that through some periods of your life it was done more frequently than others. Some tics show up at some point only to disappear later to be replaced by another tic. You can have one or both kinds of tics. 
• "tics... can be suppressed temporarily, and are preceded by a premonitory urge." You remember how I called the tics involuntary? They are -who CHOOSES to do these things? However, with concentration, the can be repressed for short periods of time. How easy this is depends on the individual and practice. Any Tourettesy person can tell you that after a bit of repressing the tic, you'll find yourself almost as desperate as a druggie to start doing it again. Even when one does not realize when he/she is doing the tic most of the time, it is still in response to a very demanding urge. 

• "Tourette's is defined as part of a spectrum of tic disorders, which includes transient and chronic tics." This is a recap, so I will do the same. TS is a conglomeration of a variety of tics which can last your whole life or change periodically (or randomly).

 Yep, that's about it.

And finally...

How does Tourettes affect my daily life?

Now, like I said already, having Tourettes all my life, I can't give the most detailed explanation of the difference between life with TS and that without. Nevertheless, I am neither blind and can therefore state the obvious differences.

While some people require medication, I do not because my TS is pretty self-manageable. However, I am subject to a few minor limitations by "regular people" standards. Other than the odd glances and curious questions thrown at me when I perform a tic, I often find myself in aggravation when it comes to meticulous projects and time management. The constant flexing of the muscles in my forearms (like over 70 times a minute -try and see if YOU have the muscle strength to do it that fast) is harder for me to control and therefore I tend to burn myself cooking, cut myself cleaning, and otherwise make a mess of things. As for my scrunching (that crab-face thing I spoke of earlier), I don't even know when I do it, so I will lose several minutes (and even hours with nobody to stop me) without realizing any time has passed at all. You can imagine the difficulties associated with THAT problem. 

There are also certain jobs I cannot safely apply for. Anything concerning food preparation, serving, or whatever is something I would be unable to do because I touch my face too much without realizing it -NOT allowed in any restaurant or fast food place. Furthermore, janitorial positions would be a bad idea for the reason that touching my face could potentially put harsh or harmful cleaning solutions and chemicals against my skin (and on a personal note,who wants potty or trash on their face? Ew!). That isn't saying I don't cook or clean in my own house, but you know. Other jobs I should not apply for are things like secretary or accountant -anything relying on a good sense of time-management, as explained earlier. There are plenty of jobs left, and even these places would not be allowed to discriminate against my TS, but I would be highly inefficient at some, and downright 'dangerous' at others. Besides, I don't see any of these as a real loss. I intend to get a teaching degree or a psychology degree, myself. 

As for raising kids, I am a good, attentive mom, but I know to have distractions available for my toddler during the times I do unknowingly sidle into a long tic session. Nick Jr is my hero at keeping my daughter out of trouble while I'm out of it! On days that I feel my TS is a bit harder to control than others, diapers are changed on the floor rather than on the changing table so just in case I get scrunching, the kid can roll wherever she wants to and not hurt herself -you can't fall off the floor, after all. And yes, my baby girls (the toddler and the one in my womb) carry the TS gene and have a 75% chance (99% if you are a guy, btw) of showing tics. My firstborn is already scrunching. ^^ Hey, she looks like her daddy, so she's got to take after me in something!

So there you have it, folks! Tourette Syndrome in a nutshell. May awareness be spread and jokes be told! Also, if you know any CLEAN Tourette's jokes, feel free (aka PLEASE DO) share them in a comment at the bottom of this post! Much love to all! -Kim

Swept Away

Firstly, let me apologize for the inexcusable and enormous gap between posts! (Now note that although I previously dubbed it inexcusable, I follow promptly with an excuse.) Between my mother and mother-in-law's visit in October, Thanksgiving and the first of the baby doctor's appointments in November, family up for Christmas and all that jazz in December, I have sorely neglected this blog so early in its bloom. And thus, I begin anew!

One of the greatest things about this new year of 2012 is that I am very, very close to finally completing my first full-length novel, Wolf Prints. (Look! Look! See? I get the right to underline the name of one of my books now! Huzzah!) I have a couple novellas out, sure, but nothing compares to the pride that comes with calling oneself a novel writer.

(Warning! The following mega-paragraph is a detailed explanation why never to use the named self-publisher. If you do not want to read it, you may comfortably skip past it and continue with the intended contents of this blog. However, if you are an aspiring author, this may save your bacon.)

I am also expanding my publishing horizons this year. With "Diamond Heels" and "Diamond Heels: Special Edition," I naively self-published with a free site called lulu.com. I am neither afraid nor ashamed to tell you that Lulu is a scam. Yes, they really will publish your book. Yes, they will give you a free ISBN number. Does this sound too good to be true?

It is. Unlike other self-publishing sites such as Amazon or whatever it is you intelligent folks use for your publishing needs, Lulu does not make its money by selling your book. It will not advertise, but it will ask you to purchase a highly expensive advertising agreement to make your book available on Amazon. (Luckily, I did my research before actually finding out the hard way about the following). Your book will be on Amazon for a couple days if you are a highly lucky individual. After that, Amazon will take your book right off their market because Lulu is mot one of their sources and therefore thinks it is posting junk on there illegally. Fact is, Lulu knows this. They do not care because this leads right into their main trap (one I have unwittingly fallen into).

The way Lulu makes its money is by destroying the book formats the author painstakingly put together. The editing format is incredibly tedious as it is. "First reformat your document into this example so that our system can read it and put it into this other example which you will then have to change into this third example which will lead into this final example to send into us." The author works doggedly through the night to make it all happen, checking and rechecking, reading and rereading, fixing this then altering that... until finally, finally can he/she be sure it is in all ways perfect. Then Lulu will take the work, reformat it once again "to better fit the binding of your hard copy or eReader version" and call it finished.

Now here is where the Amazon part of the scam comes in. By now, the author already knows one way or another to avoid their Amazon advertisement. Therefore, the only way to get his/her book known is to buy it himself (because nobody is going to actually search and order from lulu.com) and distribute it wherever he/she can (be it church, a bff's bookstore, or a Facebook fan page). After a killer of a wait, the overpriced books (which will go up in price whenever Lulu feels like it, giving NO revenue to you even if you were so lucky to get one sold off that site) come to his/her door, he/she opens it up... and realize Lulu completely off-centered every chapter page, threw off the text size, and did all sorts of weird things to the content of the book. Thus, they blame the author and he/she have to do the process all over again, no compensation. Some will do this a third or even a fourth time before realizing the truth: Lulu makes its money by skrewing up the author's book and charging insane amounts of money for more and more faulty prints to be made. An adequate one will never emerge. Ever. Thus, goodbye Lulu! Hello Amazon (or somebody legitimate).

(End of enormous and somewhat interrupting paragraph)

Okay, the very long rant is over and I will continue where I was supposed to be going with this blog.

I came across a really interesting quote this morning that totally epitomizes how I see and why I love the people in Wolf Prints!

"When writing a novel a writer should create living people; people not characters. A character is a caricature." -Ernest Hemingway

When I originally started writing this book, I had my ideas in mind about the characters I was going to use. For the sake of understanding and a little self-advertisement, I will give you a little sneak peak on these characters. (By the way, this is a very loose representation of my interpretation of the classic beauty and the beast story -werewolf appocolypse style. That's kind of all you need to know right now.)

Drake: He was supposed to be my diamond in the rough. The pack leader, haughty, disdainful, etcetera, and yet he was supposed to have a heart of gold. However, as I began writing, the story flew out from under me and began creating itself into something entirely different. Drake made himself an overall Jack-hole with a heart and soul as black as his past. He really did not care a whit about other people, even deep inside. He develops throughout the story, however, not brought out into his true loving self by the beauty character, but transformed into someone he had never been by something much more powerful.

Sophia: She was and is my little mouse, but my intentions to exploit her as a misunderstood damsel-in-distress kind of tanked when she revealed herself to be a (well-meaning but nevertheless) selfish manipulator. She had all the insides of gold with the habits of a monster. Instead of changing the beast, the beast showed her the truth about herself and she must then decide what to do about it.

Steven: He was going to be the annoyingly childish side-liner, side-kick, and otherwise second to Drake -or so I thought. Boy was I wrong! A wisdom I never knew he had brought him out as a remarkable and very important individual -maybe even moreso than his "hero." Steven has many layers to him, but the way he picks and chooses his battles and carries himself with an honorable mixture of confidence and humility makes him shine the brightest out of all of my "characters."

Elly: To be honest, she was going to be a background character of comic relief mentioned now and then in non-influential  scenes of the novel. Well, Elly is a stubborn girl, and the background was not for her. As I had intended to write her, she was a ditzy, shallow, googly-eyed, typically stereotyped blonde teenager with a cheerleading uniform to boot. In the end, she is still "shallow," but you are going to fall in love with that word! Elly is genuine, resourceful, and the banana to the pack's peanut butter. She does not have a celebrated "deep" personality or a mysterious past because she does not need it. The openness of her character, the rawness of her emotions, and the frankness of her attitude are a refreshing and entirely relateable element that, I think, is mostly responsible for the heart-hammering transformation Wolf Prints has undergone from book to novel. 

I would love to take the credit and say that "I made my characters people, not caricatures. I disrobed from the usual blandness of thinking in which so many other authors entrap themselves!" Yeah, but I cannot. To be honest, I am not even sure I was the one to write this book! Yes, it was my original story idea, yeah, I typed it out under my fingers, yes, it was my sleepless nights and premature grey-hairs that paid for this endeavor, but this story changed into something beautiful that I never could be capable of. I mostly blame God, and the fact is, if you want your characters to be people, then you have to kind of let go and let them be as they may. Just like you cannot manipulate real people into boxed personae, you cannot keep a strangle-hold on your characters and expect them to be realistic.

Well, I had my fun. Thanks for reading all about my exciting adventures in writing! Haha. If you want to keep track of my ongoing author-like endeavors, then follow me on Facebook (http://www.facebook.com/pages/Kimberlee-Long-Author-Page/164966216920669?sk=wall&filter=1). Otherwise, until next time! Ciao!