Thursday, September 8, 2016

Ameloblastoma - A community

To my fellow ameloblastomers- I wanted to let you all know that there is a closed group on Facebook for ameloblastoma support. If you are someone looking for encouragement or have questions, this is the place to go!

And, for those of you who have personally commented on my past blogs regarding my journey through surgery and recovery with amelo, I'm happy to stay in contact with you! You can look for me on Facebook, Twitter (@LBPosthuma), or email me directly at

Stay strong!

Wednesday, March 2, 2016

The Superbowl of Story-Telling

I always watch the Academy Awards. Every year. I don’t care about the fashion. I don’t care about the celebrity couplings. And I don’t care about anything that happens on the red carpet (unless it’s a Benedict Cumberbatch photobomb – I am partial to those). Most years, I’ve seen few if any of the nominees before the awards ceremony takes place (this year was no exception – I’ve only seen Inside Out, The Martian and Star Wars: The Force Awakens). But, I still watch the entire show from the opening monologue through the award for Best Picture, and then I go to bed all teary-eyed, so happy for all of the winners despite having probably not seen the work they’d just receive honors for.

Me, video-clerking c. 1996
This may make me sound like a crazy person (I own it), but I can’t help it. The Academy Awards is the Superbowl of story-telling, and as a writer in the pee-wee league equivalent of my sport, I am awestruck by them. Despite the fact that I see so few films, I still love story-telling through movies--it’s just that nowadays if there’s a screen on in the house, my daughters either have it tuned in to Disney Junior or they’re binge watching a season of Full House on DVD. Back in high school though, when I worked at a video store, I watched just about every movie I could get my hands on. I also spent a lot more time at the movie theater since tickets were five dollars apiece and I didn’t have to hire a baby-sitter every time I wanted to go see Titanic (Which was six times. I saw that movie six times in the theater). Back then I was invested in the Oscars the way most people are—I had actually seen most of the movies and had an informed opinion about who I wanted to win the awards. But truthfully, I think I like the objectivity that comes with being clueless about the nominees more. When I don’t care who wins, I’m able to see things differently. I don’t put these actors and directors and writers on pedestals, assuming they have an edge on a successful career the rest of us aren’t privy to. I’m able to see them for what they are—regular creative people chasing the hell out of their dreams.

As a citizen of a creative universe, when I see another compatriot receive honors for doing well what they are most passionate about, I’m so happy for them it makes me weepy. The older I get, the more I believe that there is no greater satisfaction than to use the specific talents you were given in this life to create something great in the world, so I want to celebrate whenever someone achieves that, which happens about every five to seven minutes at the Oscars, in between commercial breaks.

The fruits of my script writing
Chances are, I will never know what it’s like to author a story that’s turned into something so grand as a movie, let alone one nominated for an Academy Award. In fact, I’m pretty sure I came as close as I’m ever going to get a few years ago when I penned a thirty minute Easter play for my church, whereby I adapted R.C. Sproul’s “The Priest’s with Dirty Clothes” into a parodied Disney musical (I sometimes work within a very specific genre). To date, this little project is one of the most treasured accomplishments of my lifetime. There was something magical about handing a script I wrote over to a director who handed it to actors, singers, set designers, and lights and sounds operators who collectively took the words that were once only ideas in my head and turned them into something so (relatively) big and (undeniably) beautiful. I remember standing against off to the side of the audience during the performance (weepy yet again), listening to them laugh and cry (at the appropriate times) completely in awe of the finished product and all of the people it took to get it there. That feeling times infinity must be what writers feel like at the Oscars.

Probably my favorite moment from the 2016 Academy Awards came in the acceptance speech of Pete Docter, director of Inside Out, which to no one’s surprise (not even an Oscar know-nothing like me) won for Best Animated Film.  He spoke a lot of quotable truth before the music played him off the stage, but the thing he said I loved the most was this:

“We are all so lucky, regardless of a gold man, because we get to make stuff.”

I'm glad that he sees it this way because he's right. The freedom and means by which to live creatively are privileges denied to many in this world. Those of us who are blessed to be in such a position shouldn't take it for granted. We should "make stuff" with all of our hearts, and we should celebrate it when others do too. Which is why I'm going to continue to watch Oscars every year. And the Emmys. And I'm going to appreciate great art. And listen to awesome music. And attend brilliant plays. And read good books. 

And maybe write some good ones, too.

Until then though, enjoy this fan video of his imagined Songs Eight Six film adaptation. And if you happen to be a millionaire movie director, let's make this happen...

Thursday, February 18, 2016

My Spirit Muppet, Don Music

Does anyone remember this guy? 

His name was Don Music, and when he wasn't banging his head on his keyboard, he looked like this. 

According to his portrayal on Sesame Street,  Don was a tortured singer-songwriter Muppet with an undoubtedly tragic backstory the show never fully explored. He's attributed as the composer and lyricist of alternatives to such children's classics as "Mary Had a Bicycle" ("Mary Had a Little Lamb") and ("Whistle, Whistle Little Bird" ("Twinkle, Twinkle Little Star"), and in the Kermit the Frog Newsflash segments that tell his story, viewers are shown the VH1 Behind the Music type expose of his anguished creative process. 

It's in these segments where we observe the genius of Don Music. His strength was his knack for pairing simple words to catchy tunes. However, it's painfully obvious that rhyming is his Achilles' heel, and as many creatively-minded people unfortunately do, he resorts to unhealthy coping mechanisms when confronted by his weakness. Each time we see Don get frustrated trying to think of an ending to his songs, he repeatedly slams his head onto his piano, loudly lamenting "I'LL NEVER GET IT RIGHT! NEVERRRRRRRR!" until Kermit the journalist intervenes to talk him out of quitting his craft. 

I doubt that Sesame Street was meaning to confront the topics of self-injury and crippling low self-esteem when they created this character; they were more likely going for something along the lines of slapstick comedy, I would guess. However, after the show received several communications that children were banging their heads onto things to emulate him, the Don Music Muppet was retired from Sesame Street, and he lived out the rest of his existence in quiet obscurity, like so many talented artists before him.

I never forgot about Don Music. I wasn't one of the kids who gave herself a concussion over him, but I'm pretty sure that if such a thing exists, he is my Spirit Muppet.  Like Don Music, I am admittedly a self-defeatist, my own worst enemy. I'm a woeful rager and a doomsdayer in regard to my own talent, and I often rely on someone else to pull me off the "I'm giving up writing forever!" ledge. This is not a quality I'm proud of. In fact, I find it utterly unattractive. However, I recognize it as the hill that I keep dying on, and I'm trying to figure out my way around it.

That's ultimately what Don did, after all. Once he got the freaking-out out of his system, he always came back to finish his song. I think that was the intended message behind his character as a whole: sticktoitiveness. Never give up on your dream, kids. Maybe you think you're writing a song about stars that twinkle but really what what's inside of you is a song about a whistling bird, and you're going to have to struggle for a while until you realize that, but the only real failure is in giving up. 

Don Music, the poster Muppet for perseverance in the face of internal conflict. 

Though I wish that it didn't, this lesson totally applies to the status of my current novel in progress. I have spent fifteen months thinking that the story was meant to be one thing and then realizing it's probably best if I rewrite it as something else entirely, and I'm in the banging-my-head-on-the-keyboard part of accepting this. I don't know how this happens, or why it seemingly happens to me with everything I write. Inspiration is fickle, I guess, which is putting how I really feel in G-rated language when I'm way passed an R-rating of pissedoffness about it.

I know that I am not alone in this kind of frustration. This happens to a lot of creative projects. Ideas dead end all of the time. Or they evolve. Or, they get shelved to incubate. Then when it feels like it, inspiration returns and everything comes to fruition in a way it never would have if the idea had been forced to completion when it wasn't meant to be. 

Early Frozen/Wreck-It Ralph
Life illustrated this to me recently again in the Valentine's Gift my husband gave me. He bought me The Art of Disney postcard set because it was on a Pinterest board entitled "Stuff you should buy for me" that I directed him to because we don't do traditional Valentine's Day exchanges because the whole holiday is a farce in our opinion he is thoughtful. The set consisted of 100 postcards, each featuring a picture of a drawing, sketch, or film cell from a Disney film. As I was looking through them, I noticed that there were few concept art pictures that took me an extra moment to place. The artwork on these cards featured characters from the films Frozen and Wreck-It Ralph in very early stages of their development, long before they had evolved into the characters as they appear in their films. The Frozen sisters looked like impish flower children while Ralph was channeling an orange broccoli Donkey Kong. (I much prefer him the way he debuted in his movie, looking like the child of Fred Flintstone and the Brawny paper towel man.)
It's hard to believe that these images ever served as inspiration for what Anna, Elsa, and Ralph eventually became because they just seem so wrong-looking. I'd only ever seen the finished products before, and because they seemed so right-looking (Disney market research at its finest) it felt silly that there could have been a time when they were anything less than their end results. But, of course there was a time like that. Because before these characters were established, they began like every thing else does: as vague concepts. Ones that get bent into and out of shapes by all sorts of variables before they are considered finished by their creators. The pictures on these postcards represented  mere points on a timeline of the creative process. Building blocks. Rough drafts that evolve into the masterpieces.

There were likely dozens, maybe hundreds more sketches of Anna, Elsa, and Ralph in between the ones on the postcards and the ones in the films. After all, it's hard to know what makes something right until you know why all the other ways of doing it aren't, and it can take a very, very long time to explore all the ways that something can be wrong. As a spectator of great art, that makes complete sense to me. I affirm that that trial-and-error is a valid process. However, as a writer producing my own work, it's a source of great frustration that the only way I seem to be able to produce anything is by writing a page one hundred ways and then deleting the ninety-nine of them that were wrong. I have a hard time accepting that my rough drafts are a necessary benchmarks on the timeline of my own creative works and not just time (so, so much time) wasted driving at full speed in the wrong direction.

Rationally though, I know that they are. And I know that there aren't any shortcuts to writing quality work. It takes as long as it takes, and it's going to take even longer if I keep banging my head on the piano.

I just wish knowing that would keep me from doing it.

Tuesday, February 9, 2016

I Do Not Farm

One of my favorite comedians of all time is the late, great Mitch Hedberg. If you aren’t familiar with his work, then carve out a least an hour of your day to spend on YouTube watching some of his bits. I promise he will make you laugh. He’s not a dirty comic, though he does occasionally swear, depending on his audience. But, seeing how most of his stand-up centers around food, he’s not likely to offend people, unless they take issue with the buoyancy of limes.

There are many jokes of Hedberg’s that I have committed to memory, but as an indie writer struggling to make a name for myself, there is one that is so pertinent to my career that it pops into my head often, usually when I researching marketing strategies or attempting to understand book sale algorithms. Here it is:

I love this line, but I also hate the truth behind it. So often when someone works in a creative field, there's an expectation that their skills are interchangeable with others considered in the same sphere. Creative people aren't always seen as specialists the way maybe doctors are lawyers are. I mean, it's obvious you wouldn't go to a cardiologist and expect him to perform brain surgery, or hire a patent attorney to defend you in a murder trial. But when it comes to specialists in the arts, we assume their talents should be all-encompassing: a painter should paint and sculpt. A musician should be able to play guitar and sing. An animator should know graphic design. And a writer should be able to write anything.  

Granted, there are some logical overlaps here. Many times people who are talented in one area of creative art are often naturally skilled in another. But, that's not always the case. Some people have a niche that they totally own and have little interest or ability outside of it. Does that make them less of an artist? I don't think so. I mean, was Shakespeare a one trick pony because he was only a playwright and not an acrobat, too? I guess I just don't see anything wrong with being really good at one thing. I don't think it makes someone a failure if they aren't a triple or quadruple threat. To not be good at everything is human. To be good at everything is to be Justin Timberlake, and almost no one on the planet is him.

I became a writer because I really love telling stories, and the written word is my favorite medium for doing that. However, if I want to be a writer who is read by other people, then I can't just be a writer. I have to be a writer+. I have to be good at things that don't even fit within the same realm of writing if I want an audience for my work. Indie authors have to wear a ridiculous number of hats to get their stories to the public, and not all of us (especially this girl) look good wearing even one hat, let alone multiple. 

The average indie author must first write their piece (author hat). Then, they either self-edit (editor hat) or hire an editor (researcher hat, financier hat). Then, they have to create or hire out the cover art  for their book (graphic designer/photographer/researcher/artist hats). Then they have to format their story into book form (formatter hat). Then they have to market the book (there are too many hats for me to list here...people get actual college degrees in marketing, that's how complex it is). Then, they have to do press (public relations hat). If a writer wants to keep a following, they must also become savvy with social media, keep up a blog, make public appearances, network with other indie authors, etc., etc., etc. (Um... fedora? Sombrero? I don't know. Just more hats). They must do all of this in addition to their day jobs (Less than 5% of writers make a living writing fiction at any given time). All of this, and then the average independently published novel only sells 150-300 copies during its lifespan.

I think that it's good to know stuff like this, but if you don't want your passion for writing to shrivel up and die, you just simply can't think about it too much. Statistics are a great way to gut check your motives for writing, but honestly if you're in this field because you want to get rich quick (or ever, really), then you should probably save your time and just buy a lottery ticket. You may even have better odds with the lotto.

Instead of worrying about whatever you're writing is going to become, spend your energy on making it the best work possible. The indie writer world is full of a lot or garbage. A LOT. (I know that art is subjective, but there is a sub-culture of people in the indie world who simply publish things just to say they have published things and have no regard for the craft of writing: DO NOT DO THIS, please. All of the writers out there who actually care about the term "indie writer" beg this of you). But there are gems, too. And if writing is your dream, it's likely a dream for a reason. Dreams are usually worth chasing, though perhaps not with reckless abandonment (like, maybe don't quit your job and take out a second mortgage to finance your first book).

As for me, I'm probably never going to be good at farming. Maybe someday I'll be lucky enough to find someone who already has a plow to do that part of the indie author thing for me. Until then though, I'm just going to keep telling stories to whatever size audience all these hats can get me. Because it's fun.

Monday, February 8, 2016

All I Ever Needed to Know About Writing, I Learned From Darth Vader

Quite possibly the scariest thing on the Internet

When I was about four years old, I had a doll named Princess Vader. I don’t remember where I got her or even what she looked like, but I do remember where she was kept and that was underneath a lot of junk at the bottom of my toy box.

Princess Vader rarely made an appearance outside of that box, but sometimes I would peer inside of it to make sure she was where I had left her. If ever she was MIA, I would get very upset until she was found and returned to that place beneath the blocks and Fisher-Price Little People houses where she belonged. I may not have wanted to play with her, but that didn’t mean I didn’t want to know where she was at all times. Tabs were kept on Princess Vader. I had strong feelings toward this doll, despite my lack of memory of her physicality, and that is because she scared the hell out of me.

I don’t remember how Princess Vader acquired her name. I’ve googled the phrase just to make sure there wasn’t some awful, 1980s Hasbro attempt at creating a female version of Darth Vader to appeal to the little girls of the Star Wars era. There wasn’t, but there is this which is arguably worse.

It’s possible that I had named her myself, though I don’t know what would have possessed me to do such a thing.  It’s also within reason that she was given to me by my dad or an uncle who named her Princess Vader as a joke to tease me, since torturing me in that way was something almost anyone in my family would have done for a laugh.

But regardless where she came from or whoever it was that bestowed her name upon her, to this day whenever I happen upon that old toy box, emptied and repurposed for the storage of old books and candles decades ago, my first thought is that I hope she is in there, and I hope she doesn’t come out.

No, thank you.
As far as I can remember the doll itself wasn't particularly creepy-looking. She wasn’t even one of those possessed, My Buddy/Kid Sister that inspired Chuckie from Child's Play. But it was her guilt by association—her name, her Vader-ness—that caused me to reject her entirely. With a name like hers, I feared the connections to the darkside she may have. I feared that those connections might someday come back, looking for their lost Princess.

As for me and likely everyone else from my generation, Darth Vader was the embodiment of all fears. In fact, I can still remember my blood running cold in my veins the first time I laid eyes on him. My uncle had just purchased a VCR and then bought Star Wars to watch on it (because the fact that you could actually own that movie was the number one reason people bought VCRs in the early 1980s). I remember the opening story scrolling (just that it was there, not what it said because I couldn’t read). Then, all of a sudden there were spaceships and lasers and shiny robots and battle guys in white armor, and it all totally captivated me in a way that shows like Sesame Street never had. I had no idea what was going on, but I was amazed—hooked from the beginning.

I then remember after the initial fight scene, there was a small pause in the action. Out of the dust of battle there emerged a caped figure in black, loudly breathing in a reverse snore. He seemed to tower around the fallen storm troopers as he surveyed the carnage of war through his mask—his black, eyeless mask—and said nothing. He just breathed.

It. Was. Terrifying.

For the average, older-than-preschool aged person, I imagine Darth Vader seemed like a menacing character too (black costuming is traditionally a dead giveaway that someone is a bad guy, after all). Once his bad-guyness has been established though, an older viewer would move beyond it to wonder more about him: Is he a robot? Is he a man? Does he have asthma? What’s his beef with the Princess? But being that I was four when I encountered Darth Vader for the first time, I didn’t really care to know more about him. All I could focus on was that I just didn’t want him to get me.

Even now, in a galaxy far, far in the future from the first time I laid eyes on Darth Vader, I'm not ashamed to admit that I find him intimidating. There’s surely some psychology out there to back this up, but I’m betting that because I was so profoundly scared by him when I was young, I’ve never fully grown out of that fear. There’s something about spending a few years trying to squeeze yourself in between your mattress and the wall of your top bunk at night in hopes that when Darth Vader comes to get you in your sleep, he’ll take your sister from the bottom bunk instead that doesn’t quite leave your psyche, even well into adulthood. Even recently on a trip to Disney World when I had the opportunity to meet a fully costumed regular man dressed as Darth Vader, I almost wet my pants in fear for my life. I swear that I'm mostly a reasonable, realistic person, but when the doors opened and my family and I stepped into the character greeting room where he stood breathing loudly and staring at us, I audibly gasped and probably swore.

From a safer physical distance though, as an adult I have come to have an appreciation for Darth Vader. When I reflect on his complete story (as told through Episodes I-VI), I find him less scary than complex and compelling. I almost wish I was an undergrad English major again so I had an excuse to write a ten page essay comparing him to Heathcliff from Wuthering Heights or The Creature from Frankenstein. I want to verbally dissect him, to break him into literary molecules and understand what exactly it is about Darth Vader makes him so iconic. 
This is a real thing you can buy.

A lot of people would probably love to understand that, actually. What does make an icon? What's the formula for a character whose popularity endures almost forty years with no sign of stopping? Judging by merchandise alone, the cultural relevance of Darth Vader is still full-steam ahead. There are millions of writers out there who'd like to milk a cashcow like that. Who doesn't want to be attributed with starting a cultural phenomenon? 

As a writer myself I am always fascinated when other writers seem to discover the equation for massive success with a story. Even if I'm not at all interested in what they're writing, I still want to know every last detail of why so many other people are. After following the trends and trendsetters, what I've come to believe about the success stories of writers is that no matter which dystopic society or supernatural creature is the flavor of the week, what makes something popular will always be a bit elusive. Sometimes the iron is hot by luck, and sometimes it is struck by luck. There are perfect storms from which whirlwind successes emerge, but like storms in nature, there's only so much anyone can do to predict their paths. 

Inasmuch as success is able to be controlled, however, I've learned that there is no substitute for authenticity and creative imagination. George Lucas didn't generate Darth Vader from a computer program that guaranteed him the perfect super villain. He merely tapped into his own hopes and fears and illustrated them in a way an audience could relate to them, too.  This is how I want to tell stories. Sometimes I get lucky, and what I write finds its way to readers who can relate to it. We'll connect through the fear or pain or joy that is transmitted through the the language of story. Other times, I pour my heart into something and it gets dismissed by everyone who lays eyes on it. Both results usually take the same amount of work. 

But, when the iron is cold and the critics are loud, it's Darth Vader that keeps me going. Maybe not him specifically (though, if someone were dressed like him standing over my shoulder and giving me deadlines, I'd be interested to see what I could pump out), but the knowledge that all he is began as an idea in the mind of a writer. So do and so will all the other complex and compelling characters that we will ever love or fear or name the dolls we keep at the bottom of the toy box after.

I'd be interested to hear from any one else who has this sort of strong emotion connected to a character from their youth. Who scared you? Which fictionalized bully did you hate? Who were you in love with? Who did you root for? If you're a writer, do you see any of these characters translated into your own works? 

While you're thinking on that, enjoy this version of Darth Vader, which is way less intimidating that the original. 

Monday, January 11, 2016

Being a Writer

Recently I digging through boxes in my mom's basement and was wondering why she has held on go my old retainer for the past 20 years archiving my childhood when I happened upon a book I had written in the fourth grade. 

Since my awkward stage lasted from age eight-15, 
here's an author photo from when I was five. 
I wrote many as a child; perhaps you're familiar with some of my early work? My first publication was circa third grade . It was a horror-comedy (I was mixing genre at a very young age) entitled Gladys the Giggling Goblin. I soon followed up the success of my debut by trying my talents in the field of drama with, A Horse Called Rosedust. Quickly after that I co-authored a joke book with a friend named Lindsey (most of my friends were named Lindsay or Lindsey as a child, but I remembered that this was the Lindsey with an "e"); however, I'm almost certain we plagiarized all of our material. I distinctly remember illustrating a page for the joke "Why is six afraid of seven?", and I was not a clever enough child to have come up with "Because seven eight nine" all on my own (or even with the help of Lindsey). At best then, I can claim credit for compiling the joke book rather than authoring it.

While my subjects and genres may have varied from one book to the next, there were two things I made sure to include in any publication I put my name on: a dedication page and an author bio section. The dedication page for me was easy. I think almost every book I ever wrote was dedicated to my Granny. She was my favorite person in the whole world growing up, and if she were still here the same would be true today. She was the kind of person who deserved to have things dedicated to her, bigger things than my little stories, like maybe hospital wings or art museums. But since I was never asked to weigh-in on the dedication of parts of buildings, I settled for dedicating my books to her, including Songs Eight Six.

See? You get it now.
The author bio pages of my books were also pretty standard. Typically I included my age (something I would not do now), and usually I proclaimed my undying love for Chicago Cubs first baseman, #17 Mark Grace (again, something I wouldn't do today... probably). However, while thumbing through these early editions of my writing, there was one author bio that struck me:

I stared at this page for a long time.

When we're young, the number of professions we know of are limited. We usually are at least vaguely aware what our parents do for a living. Most of us know what doctors and teachers are because we have business relationships with them. We're also familiar with most of the jobs that answer the question posed in the Sesame Street song "Who Are the People in Your Neighborhood?". However, I don't know that in the fourth grade when I wrote this bio page that I was aware that being a writer was a viable occupation. After all, I didn't personally know anyone who identified themselves this way, and Bob McGrath never sang a verse about the local neighborhood writer. So, I didn't consider "being a writer" a type of career path. Instead, I just thought writing was something people did for fun, and I thought it was fun, so it's what I said I wanted to be. I didn't think of it as a real job.

I kinda wish I'd never learned otherwise.

Recently, I left my day job. There were a few reasons it was time to do this that related to the season of life my family was entering into (I needed to adapt to new school schedules, the commute was becoming ridiculous, etc.), but topping the list was that I wanted to devote more time to writing. You see, sometime between fourth grade and now I had learned that being a writer is a legitimate career for a lot of people. I'd become aware of such jobs as novelists, playwrights, journalists, screenwriters, columnists, essayists...the lists goes on and on. 

The Pottery Barn version of being a writer
However, when I thought about pursuing the dream of writing as my job, the definition of  "writer" I imagined was a very narrow one. It involved a desk, a window, a laptop, lots of coffee, and an never dwindling supply of inspiration. I was confident I would be pumping out two to three novels a year with my roughly thirty hours of writing time now available to me each week. "Being a writer" never felt so possible. 

Except that after about a month of doing this, I became completely discouraged.

I started my first novel in 2011 and published it in 2013. At the time I had two children under five and two part-time jobs. In the past two-and-a-half years, my kids have become school age (so my daytime attention isn't solely devoted to them like it was), I left one of my part-time jobs (and can manage the other one as I wish). I've started two more novels, writing over 200,000 words in them combined. 

And as of last week, I had deleted 190,000 of them.

I wasn't inspired. I wasn't passionate. I wasn't a writer. I felt like I was failing every day, all the time. I couldn't escape the tunnel vision of what I had expected being a writer to look like, and it had killed me wanting to be a writer at all. 

Which is fine, I realized. It's totally acceptable for me to quit writing. So, that's what I did. 

For a few days, I let this be true. I quit. I didn't give two weeks notice. I didn't train anyone to replace or assign anyone to finish the works in progress. I was just done. And it felt so good.

For a few days. 

And then, it didn't anymore. 

I missed creating. I missed storytelling. I missed whatever it was that made my ten-year-old self want to be a writer when I grew up. 

In her book, Big Magic: Creative Living Beyond Fear, Elizabeth Gilbert speaks to frustrations such as mine (and countless others...Seriously you guys, this book is amazeballs inspiring). She knows how to do this because she's been where I'm at. Most writers want to quit being writers at some point, she claims. After all, writing can be an extremely lonely, very thankless, highly criticized, deeply vulnerable job to impose upon one's self. 
Example of what I mean by "deeply vulnerable and highly-criticized." Also, I think s/he meant to write "review" and not "reread." I certainly wouldn't want to reread a piece of crap, and I wouldn't expect this reviewer to either. 

But that's the thing I realized--I imposed this upon myself. Being writer was a choice I made, and I made it because I like writing. I've always liked writing. Long before I ever had a reader, I was writing. I like writing because it's fun. Sometime in the past few months I think I forgot that. I started defining writer as something I had to do instead of something I wanted to do. Success became a goal that I thought I had some sort of control over achieving instead of it being a feeling of satisfaction in the work I enjoy. And subsequently, I didn't enjoy it anymore. 

One of my favorite parts of Big Magic is when Gilbert talks about her own decision to become a writer: 

Like Gilbert, I feel fortunate to have found that nothing interests me more than writing. Many people spend their entire lives with nothing interesting them at all. It's a privilege then, to be frustrated doing what I love than to love nothing and feel no frustration. Given those two sides of the coin, I'd call frustrated every time.

So, that's what I'm going to do. I'm going to be frustrated and keep writing. Because when it comes down to it, I still really want to be a writer when I grow up, whether or not it's a real job. 

Thursday, February 5, 2015

The Post You've Been Waiting For (If You Have Ameloblastoma)

Before I had my surgery, when I researched people who had survived ameloblastoma (which spellcheck wants to change to "ectoplasm" - and that's awesome), I was discouraged by the number of people who began to document the journey to recovery but never finished it. I told myself that I would not be one of those people - that I would complete MY story if only so that the next person diagnosed could see this process from beginning to end. The good, the bad, and the ugly. 

But my surgery was back on September 17th, and here I am almost five months later, and I've said nothing about it. At least, not anywhere that anyone searching for it could read it.

When I was in high school and into college, many of my writing teachers advised that to best tell an autobiographical story, the story-teller needs to be far enough removed from the situation to have reflected upon it. It can be therapeutic to write when emotions are raw, but to accurately relate what happened, time must pass. I've found this to be true in regards to my surgery, and I think I'm ready to talk. 

I'm okay. I'm healthy. I'm recovering. Life is - for all intents and purposes - what it was pre-tumor. And I'm grateful for that and for all the blessings and love I received during this difficult season of life. 

But, I'm also human, and what I went through was hard. 

First things first - to recap, this is what happened.


See that section of the model between the two, faint blue lines? That part of me no longer exists. A team of about five surgeons cut out and removed approximately four centimeters of jaw, tooth, and nerves (and that purple blobby thing which was the tumor) and replaced that section of bone with an equivalent piece they cut from my hip, as well as that fun metal jawline you can see in the image (It was screwed into my bone and is still there. And no, I don't set off metal detectors.)  The surgery itself was about five and a half hours long, and it went well.
The morning after surgery...pre-swelling
I couldn't eat or walk or even stand without help - but I didn't need any sort of pain management once I woke up from the surgery, and for that I was grateful.  Twenty-four hours later, I was released with a walker and a lot of instructions on how to recover at home.

The swelling was intense and peaked around day three. If you're wondering whether or not I'm comfortable sharing these pictures - I am not. I, like most people, am more vain that I care to admit. I have pride issues, and part of my pride issues is that I DO NOT LIKE to be seen unless I'm "put together." I don't even like admitting that to myself, let alone the Internet, but it's true. However, I feel it's important to share this, and important trumps pride, so I'm getting over myself. 

Holy crap stage
Basically, I went from not looking like I had a tumor, to having a tumor removed, to looking like a giant tumor was taking over my entire head. Or that I was a monster who had eaten my former self and was slowly taking on her likeness.

The surgeons were able to make the necessary incision in my neck fold (that's an attractive word, isn't it?) so that once healed the scarring would be as discreet as possible. My neck incision required 17 stitches (pictured), while my hip required only 14 (not pictured, because this is a G rated blog... well, sometimes). I am looking forward to the opportunity that - when asked about my scar - I can tell someone I had a head transplant. Because honestly, that's sorta what it looked like. 
Neck stitches and more swelling
During the ten days after surgery, my body did show signs of healing. I remember being amazed at how quickly I was able to walk again. I remember also being very hungry. Very, very hungry. And very, very grateful for all my friends who had bought me Panera gift cards so that I could "eat" soup. My mouth opening had been reduced to around ten millimeters at first with the hope that I could eventually reach 30 millimeters with time and stretching. Someone who could open their mouth 40 millimeters is considered to have a wide opening. Pre-surgery, I could fit both fists in my mouth at the same time (again, not pictured, but it's totally true). I basically had a flip-top head (pictured). So, to only have the hope for 30 millimeters was discouraging.  (UPDATE: I'm proud to report that last my surgeon checked, I'm opening WIDER than 40 mm - and I can get MOST of one fist in, in case you were wondering) 

Artist's rendering of how wide I could open my mouth pre-surgery
What was also discouraging to both me and to my doctor was the rate at which my swelling was subsiding. When I returned to work thirteen days after my surgery date, I still looked like this:

But, my stitches were out of both my neck and my hip. So, I was taking the bad with the good. 

With stitches
Without stitches
It was at two weeks and two days after my surgery when I started to run a fever. I wasn't in any pain at all, but I was lethargic. We called my surgeon the following day and he actually performed a house call (which is unheard of and shows his dedication to his patients). After just one look at me, he sent me back to the hospital with a suspected infection in my jaw.

When I originally went to the hospital for surgery, my husband and I had taken every measure to ensure life would be uninterrupted for our daughters. We had planned then for me to be in the hospital for at least four days, but I had been released after one. It was a shock to be sent back with no time to plan, no one to watch our children and no idea when I would be getting out. 

Worst case scenario when I was admitted was that I would have to have the bone graft removed from my jaw (another surgery), heal (without that bone in my face), and have the same surgery performed again months later by cutting out a piece of my other hip (another surgery). 

After about four hours, I was cleared of worst case scenario and just told I would be staying there until my swelling began to reduce. There are many horror stories I could insert here from that hospital stay (But who doesn't have those? And unless you're having a baby, who actually enjoys going to the hospital?), but instead I'll just say that I was kept there for four long days before I was finally released looking more like this.
About three weeks post-surgery
I was put on antibiotics for three weeks following my release, and from this I developed something called "drug fever." Every time I would take my medication, about an hour afterward I would become completely lethargic and get a fever of around 100 degrees. This of course terrified me because I assumed each time (for the 10 days in a row this happened until we discovered what was going on) that my infection was returning. 

It was also during this time that something else became apparent. I had known prior to the surgery that I was going to lose sensation in a section of my mouth and face because in order to remove my tumor, a nerve had to be severed. This was not a "maybe you'll lose sensation" - it was definitive.  On the list of "potential" side effects of was the lost of motor function. As the swelling finally resolved, I noticed that I didn't have full function of my lower lip. It was lagging when I talked and smiled, I would chew on it without realizing it. When I opened my mouth it would creep in over my teeth and I would have to manually pull it back down with my fingers. 
After (now skinnier thanks to not eating for six weeks)
The change looks subtle in person, but it's very noticeable in pictures. And I'm completely self-conscious about it. Additionally, underneath my chin and extending to my throat there is a large mass of protruding scar tissue beneath my skin that "may or may not" resolve. If I want it removed, it will be an additional surgery with an additional hospital stay, heal time, and risk for infection. 

So, in the meantime, since I don't want to do any of that, I'm just becoming very creative with how I pose for pictures. 

I wish that I could say that I bounced back from all this with a spring in my step and a song in my heart, but I didn't. And I don't think I was supposed to. I went into this with a positive attitude and faith that God was going to use this time in my life for His purpose, and I still believe that's true. But part of recovering from this whole ordeal is processing through it all. It's realizing that sometimes random. awful things happen to people. It's feeling the love of my community as they rallied around me, supported me, and prayed for me. It's being depressed for awhile. It's watching too many movies on Netflix. It's having a huge writer's block. It's not feeling pretty. It's feeling guilty for feeling so vain that not feeling pretty bothers me this much. It's learning how not to value myself on my appearance and realizing how much I did before all this. It's - as a dear friend of mine puts it - recognizing the beauty from the pain.

If I had waited until I was "fully recovered" from this to have written about it - I would have never written anything. But, I'm a writer.

I hope that if you are someone who stumbled upon this because you have ameloblastoma that you don't find my story discouraging. I am not discouraged. I had periods of discouragement, but they passed. And yours, when you have them, will pass, too. And if you need a cheerleader in the meantime - contact me and I will personally break out the pom-poms.

Thank you to everyone who stuck by me through this and never said anything like "at least..."