CDH: My Story

As much as I will be writing about my journey through the process of writing and publishing, I thought I would let everyone in on who I am--the author--and some of the non-writing struggles I contend with everyday.

I was born with CDH.

"What's CDH?" you ask? Well, it's Congenital Diaphragmatic Hernia. Doesn't sound too scary, does it? If you check out the CHERUBS website, you will see it is scary. I'll give you the run down of my story.

When I was born, it was quickly discovered that my diaphragm did not form properly and my intestines, spleen, and stomach moved into my chest, preventing my heart and lungs from forming properly. Sadly, being born in the late 80s meant there was no prenatal testing (actually, my mom has an article about the brand new testing for my condition that had recently came out...six months after I was born) so no one knew just how sick I was.

CDH is found 1 in 2,500 births and has a mortality rate hovering around 50%--somewhere between 40-60%. When I was born, I was given a less than 40% of living. I was tiny and born in a hospital that had been open for two weeks. Thankfully, I was born in California and was quickly taken to one of the best children's hospitals in the state.

Miraculously, I survived the five hours between my birth and my surgery. I'm fairly certain I shouldn't have.

Over the next fourteen years, nothing too interesting happened. I had severe asthma all my life because of my CDH and problems with my stomach. I was bullied--by teachers!--about my asthma. I do not have the curable form. The one kids grow out of. My asthma has made me critically disabled, to the point I can't even hold down a normal desk job because it is so unpredictable. One laughing fit, a waft of perfume, even an acid reflex attack can, and will, send me to the hospital. There have been more times than I can count where I have gone to the hospital for as asthma attack and nearly died. Twenty children and five hundred adults will die this year from asthma in Canada, 5,000 in the US, and 180,000 worldwide. Too many people for a very preventable disease.

When I was fourteen, I suddenly had trouble swallowing food. Food would get stuck in my esphogus (not near my trachea, so I wasn't choking, I could still breath) and I would be forced to throw it up. Many people, including family members, believed I was bulimic. Why else would a teenage girl throw up? Even though my mom insisted something was wrong with me, no one believed us, until that day.

I was nineteen and it was several days before Christmas. My mom had brought home some fast food for dinner and I started eating. Then, my food got stuck. By now, this was a normal occurrence for me, so I simply walked to my bathroom, leaned over the sink, and tried to dislodge the food matter. I put so much force into it, I threw up. Only, it wasn't vomit--it was bright red blood.

My mom rushed me to the hospital. Thankfully, we lived close by. I was in incredible pain. It was like someone stabbing you with a hot, sharpe knife over and over in your back. Sometimes dragging it, some times not. I had an endoscopy the next day (that's where they stick a tube down your throat) and my gastroenterologist (RIP) said I was lucky to be alive. My esophagus has ulcers that were dangerously close to perforating, which more than likely would have killed me.

...This does explain why I grew up with cats.

I digress. I was put on the fast track for surgery until my gastroenterologist tragically passed away. Afterwards, my recovery stalled for a year to year-and-a-half. It wasn't until I was referred to Dr. Findley at VGH my hope for a normal life finally started to grow.

After a CAT scan, I discovered my stomach had herniated into my diaphragm again, which was the root cause for my life long acid reflex. Also, my left kidney was badly damaged, my stomach was turned the wrong way, my intestines were looped the wrong way, and my pancreas is underdeveloped. My mom's theory of my surgeon being drunk was starting to hold water (if you even get to see my scar, you would know where that joke came from). Did I also mention my surgeon didn't understand how I was able to live a relatively normal life?

A year of doctor visits, hospital visits, deteriorating health, bouts of anemia, and being forced to drop school, I finally got it: my surgery date.

It happened about ten days before my 22nd birthday. I drove with my mother and sister to VGH at a stupid hour for my surgery. I got stabbed repeatedly with needles and got my first epidural. I can see why pregnant women love them. I can't even remember it and I didn't even have labor pains!

I was out for nearly twenty-four hours after my surgery. I don't remember anything. I vaguely remember my doctor coming in to explain the surgery, but I can't even tell you what he said. Morphine rocks.

It wasn't until the next day I got the awful news. From my loving boyfriend of seven years.

My surgery was a utter failure. Three of my organs, my stomach, liver, and spleen, were all completely fused together. The scar tissue from my childhood surgery had fused them, and because no one one went back to clean it up, they had grown arteries and veins in between them, making them impossible to separate. They tried, but I started to bleed out and they shut down the entire operation.

My dreams were crushed. My hope for a normal life was gone. My surgeon said I was only one of three patients he couldn't fix in his career. Which is no small feat. He is one of the top thoracic surgeons in the province. Head of the Throatic Surgery department at UBC. He has done a lot of surgeries.

As far as surgery, I am unoperatable.

Now, it's been six months since my surgery. The only thing that has changed is that now I know just how sick I truly am. I have applied for disability--twice--and was denied. Yeah, I'll win that one, even if I have to chop off my left arm to do it.

Now, I have been formally diagnosised with the most severe and deadly form of asthma, GERD (Gastro-Esophagial Reflex Disease), hiatal hernia, anemia, anxiety, and depression.

The reason I managed to survive the last twenty-two years was because of my winning personality, my awesome snarly humor, the love of my family, and because I have been a fighter since the day I was born. Also know who else helped? My novel.

If anyone ever wonders why I am so attached to it, this is why. While my life was crumbling around me, I still had my book and my characters. It was my one shining accomplishment in my life when everything else failed. Even if I failed at everything else, at least I could say I wrote a god damn novel. Not book. NOVEL.

So, that's my story. Krysten Hill's story. One of my dreams (other than getting freaking published) is to meet up with teachers, nay, PHYSICAL EDUCATION teachers and coaches and tell them my story. Remember when I said I was bullied by teachers? It was P.E teachers who didn't understand asthma. One teacher nearly killed me twice. I'm not exaggerating.

Not every kid with asthma has it under control. Not every one need a quick puff of their medicine before they are okay. Some are like me, where no amount exercise will help them get better but even a little amount will kill them. Take every case individually. Never generalize asthma. I was generalized and I almost cost me my life. You wouldn't generalize someone with epilepsy, now would you?

Now, one of my other dreams is to meet a family who has a newborn or a young child who was born with CDH and survived. CDH leads to numerous complications. What I wish to tell them is this:

"I was born with CDH and I incurred every single complication a survivor could imagine getting. I am possibly the worst situation that could happen, short of dying at birth. I have lived with not one, but two severely misunderstood diseases and every imaginable medical and social consequence to that. Yet, on August 28, I will be turning twenty three years old. I probably shouldn't be here, but I am. I am a fighter. I always have been and I always will be."

Now, this might not be the most coherent post (it's 4:30am) but I feel it is important that I tell my personal story. It not only shapes my reasonings behind trying to get published, but also why I am such a stubborn ass on how I'm going to do it. I have always expected the best for myself. If I didn't, I wouldn't be here. I also hope I inspire even one person with my little tale. I could probably die happy knowing that.

Kissy, the trashing eating hockey dog!

Everyone say 'hello' to hockey dog!

Off season, she is known as Kissy.

She's a Pomeranian/Shih Tsu/Poodle cross. She's my baby and wickedly smart, and I'm not saying that as a gloating mother. Though, she also likes to eat trash when I leave her home alone.

I'll be periodically posting pictures of the strange places she likes to stuff herself into or weird positions she sleeps in.

She loves! <3 <3

Marketing...without anything to sell.

Oh Social Media.

Everyone hopes they are the next Justin Bieber or Rebecca Black--okay, maybe not Rebecca Black. Discovered and beloved by millions through YouTube or Facebook. Big payoff with little work? The American Dream, no?

Though, how does a little author with dragons break through the barrier? How can she use social media and go, "Hate Vampires and Werwolves? THEN READ MY BOOK!!"

Now, before I get too ahead of myself, I need to explain some things. People have a habit of mistaking my eagerness for being naive or not being realistic about my expectations. Something you have to learn about me, I grew up with very low expectations of myself. I was the dumb-smart kid in school. The kid who got straight A's on every test, but always C+ on her report cards. Even though I could probably wipe the floor with a lot of the smart kids in my grade, I never rocked the boat because I never believed in myself. I never expected myself to actually achieve something. Because I never expected better for myself, I never got anywhere.

So, with writing, I expect better for myself. The dirt sucked, so now I'm reaching for the stars.

But, I digress.

I know social media can work for people in the music industry, but what about the publishing industry.

I know, I know. "You need something to sell first!"

Technically, I do have something to sell. I have my book. I may not be self publishing (what? Not every can be John Locke...or Christopher Paolini) but that doesn't mean I can't start building my social media presence. I am selling the concept of my book to potential readers, in hopes it will stick just enough for where I finally get published.

Social Media has become an integral marketing tool for any product, including books. Agents and publishers LOVE authors who can handle this aspect on their own. So, even though I don't have a book to sell (yet) who's to stop me from selling myself and the concept of my books?

I have done a lot of--say--marketing on my own. Through the writing forums I participate in and through LJ, I try to plug my book. Either through mentioning a subplot or a character, or character relationship, or even the concept, I try to plug where I can and get the name out there. Even through Twitter and Facebook, I'll mention little pieces of my work.

Yet, I can't seem to market it to agents. That's for another blog post though.

How do you feel about social media when it comes to selling your book? Regardless if you are published, represented, or not?

P.S: On a slightly related note, I did an interview! Take a look here!

http://www.jacquelinegardner.com/

It's a smaller one, but everyone has to start somewhere, right?

Neck deep in edits

Now, here is my first real more 'blog' post. Something I assure many of us writers can relate to: dreadful editing.

Okay, maybe not dreadful. It's a necessary evil in our careers as authors. Everyone from betas, to agents, to editors, to reviewers, and even readers (admit it, you have tried to edit some of your favorite books!) with give you edits or suggestions or alternatives. With all of these people bombarding you with suggestions, where does one, as the original author, say 'PLEASE, STOP IT!'?

Now, I'm not talking about grammar edits. I'm a firm believer that all grammar, spelling, word usage, etc edits should be followed through. 9 times out of 10, they don't affect the story as a whole. Sure, they still fall through the cracks once in a while, but it's not like they do any real harm to anyone. If you are a reader who freaks because a book has one, small grammar edit in 400 pages, you need to get yourself checked.

I'm talking about edits regarding characterization, plots, sub-plots, and major POV shifts (like going from third person to first, or vice versa). Edits that can have a major effect on the story, can be time consuming, and aren't guaranteed to pay off in the end.

No one knows the story better than the author themselves. They deserve to have the final say. Though, how does one look at an edit, go 'uh, no', and not come across as ungrateful and full of themselves?

I have seen published works where it was quite obvious that the author disgrarded pretty much every edit people could have suggested. It comes through their work like a shining beacon. I sure as heck don't want to be known as that kind of author, the one who doesn't listen. On the same token, if I took every edit every person has suggested to me, my writing style and voice (with me being relatively new, isn't all that strong yet) would get lost. The story wouldn't be *mine* anymore.

I'm not a type of person who likes to come across as ungrateful. I am grateful for every single edit, regardless if I use them or not. I know it's because people care enough to take my story to the next level. That doesn't mean every edit is a 'good' edit though. On occasion, people simply miss the point. Not every person in the world is going to 'get' it. It's a fact of life.

Usually, how I determind a 'good' edit from a not as good one is numbers. If five people went over something and didn't say anything and then one person comes by and basically gives a major revision, I'll usually say no. Nothing personal, but who am I going to believe? Five people? Or one?

Well, unless that one person was my editor who bought my book. But I haven't reached that point yet. I'll cross that bridge when I come to it.

How do you deal with these types of edits? Where do you draw the line? When do you say 'enough is enough'?

The Blogging World

Well, I'm not completely new to blogging. I did blog on my website, but I thought I would get more followers here. And maybe a bigger audience.

Not much to say. I am struggling to get my book, Shadow's Dawn, agented, which is proving to be difficult. So, that is probably what I am going to be blogging about most: Complaints about editing, querying, and the publishing process (with some excitements...hopefully.)

Not that I'm the most talkative person...but we shall see.

So, HI EVERYONE.