Category Archives: About Ellis

Book 3 Update + Other News

Say hello to Book 3 so far! :)

I’m experimenting with storyboarding for the first time. It’s a little tough because my computer notes change a lot faster than I can keep up with on paper, but I like this exercise because it helps me realize when my ideas don’t have enough “oomph”—too little emotional content, too little conflict. I’ve saved myself several rewrites already. (As a general note, folks: the more you kick your characters in their metaphorical nuts, the better the story will be!)

I’m not sure how much longer outlining will take. I have 5 “sequences” I want to include in Book 3 (only 3 of which are in storyboard form; the rest are in Scrivener for now). Some are no more detailed than “They go to X and do Y.” Those have to get fleshed out in more detail before I proceed with drafting. I also want to develop at least some idea of what Book 4 will contain, so if there’s any groundwork or foreshadowing that must be set up in Book 3, I can do that.

My concentration has not been what it could be of late, because of this going on right outside my front door …

They’re digging up our street to lay new sewer lines for the town homes that will eventually be built next door. This has been going on for about 1.5 months now. The excavators are doing everything they can to minimize the inconvenience to us—we were even given a parking pass for a private lot close to our house—but still, I’ll be glad when they finish and the City repaves the street!

Otherwise, on the personal front, I might have gone just a tad insane: deciding I want to learn classical Latin, then maybe take a trip to Rome next year—which means learning some Italian, too! Guess what both of these languages have? Trilled Rs. And guess who can’t trill Rs with her tongue? Yup. It’s plagued me ever since introductory Spanish in middle school. I can trill Rs in my throat, but that’s not the proper sound needed here. Instead of trying to rely on Youtube how-to videos (normally so useful, but completely maddening and misleading when it comes to trilling Rs), I’ve purchased a video course prepared by a Russian speech pathologist. Tongue exercises are now part of my daily routine. I hope to conquer this stumbling block once and for all!

Don’t Know Any Iranian-Americans? You Do Now!

Handshake Iran US

Salaam (Hi)! I was born and raised in the United States. My mom was born and raised in Tehran, Iran. After earning her Ph.D., she came to the US for post-doctorate work. This is where she met my (American) dad. It’s also where she happened to be when the Islamic Revolution broke out in Iran, so she decided to stay.

Mom converted to Christianity, and I was raised Lutheran; I’m now an atheist. As a family, we celebrate Nowruz, the secular Iranian New Year. I only know a little Farsi, but the sound of it is very soothing to me. Sometimes I just like to listen to random conversation. Like any good Iranian woman, I know how to dance beautifully. If you haven’t been to an Iranian party full of amazing food, music, laughter, and dancing into the wee hours, you haven’t lived.

I’ve never visited Iran. I’ve never met large swaths of my family. It can be rough sometimes, having large parts of your own heritage closed off to you because of political games played by distant, callous people. Plus, people get Iran and Iraq confused all the time. Falling back on Middle Eastern stereotypes, they think Iranians are Arabs (they’re not) who live in tents amid a desert wasteland (they don’t) and hate America (wrong again!).

Shahyad
Pictured: Azadi Square in Tehran

Many Iranians are atheists, like me, in spite of their government. They understand the difference between American people and American politics, and are welcoming and intensely curious of visiting Americans in their midst.

While America is and always will be my homeland, Iran is in my blood. However, I don’t look very Iranian. I’m ashamed to say that, for the time being, this is to my advantage. But in light of recent events, I still feel compelled to “come out” in hopes of striking a note of empathy with someone, anyone, who might not have any idea what the people of Iran are like.

Mostly? They’re sweet, friendly, and want the same opportunities for peace and success that everyone else does.

What’s On The Calendar – Late 2015 to 2016

february-calendarHey all! I wanted to talk about the important stuff on my workdesk and radar for the next few months. Without further ado …

* Working on Harbingers (Sword and Starship Book 2) *
Hey look, it’s my life for the foreseeable future! To make this a standalone, I’ve had to completely change the beginning, so I’ve been drafting more than editing thus far. I’m almost at the point where I get back to editing existing content. I’m hoping I don’t succumb too much to the feeling of “Oh FSM this all sucks I have to tear it up and start over.” :)

* Working on Retiring the Gods short stories *
After the whirlwind of publishing Blood’s Force, I took a month’s break to clear my head. In that time, I worked on 2 more short stories for this collection. They need a little more polish before I’m ready to call them done; I’ll probably release them in another few months. Something to tide everyone over while I’m toiling on the next novel!

By the way, this is a short story collection that’s exclusive to my mailing list. If you want a copy, feel free to sign up! I’ll send you the current version, then the new one whenever it’s updated.

* London trip *
My husband and I are going to London the first week of December! Yaaay! This’ll be our first vacation since escaping the corporate world, and is kind of a celebration of publishing Blood’s Force. It’s our second trip to London, because we loved it so much the first time.

Hilariously, I keep forgetting about it, only to panic a little when I see how much closer it’s getting. I swear, I might actually forget to go to the airport the day of. This is totally opposite from the last trip. Back then, I made plans 6-8 months in advance, and daydreamed and obsessed over the trip practically every day.

I think the difference is that I was still working my corporate job last time we went. Back then, the trip was a welcome and much-needed escape. Now I spend every day doing the work I want to be doing. There’s nothing I’m desperate to get away from.

* Future Goodreads giveaway(s) *
Not 100% sure yet when, but I’ve got December 12-19 penciled in. Stay tuned!

* January blog tour *
I’m also arranging for a 2-week blog tour in January. Every weekday, there’ll be a different post about Blood’s Force at a different blog. It should be a good way to get more word out about the book. More details to follow once they’re solidified!

Take care and have a great Thanksgiving! I’ll be back in December! :)


Ellis’ Writing and Publishing Toolbox

office 2Powered by coffee, Hello Kitty, and Left 4 Dead.

Hey again! I thought I’d give you a behind-the-scenes peek at everything that contributes to my production process, from draft to finished book/story.

HARDWARE
A room in my house serves as my dedicated office. Up there you see my desk: MacBook Air, laptop stand, cheap mouse, expensive keyboard that makes neat clicky sounds. And omg COFFEE, two mugs a day. Next to the desk is my laser printer, which comes in handy for printing off drafts and review copies. In the drawers, you’ll find things like staples, envelopes, and oodles of pencils (mostly mechanical) and pens (ballpoint and felt-tip). I also draw with these on occasion.

SOFTWARE
Most of the magic happens on my computer. Here are the programs I use from start to finish. With the exception of Scrivener, these apps are all free to download and use:

Scrivener – This program has spoiled me to the point that I can’t draft things anywhere else. The way it lets me split up, organize, and notate things is unparalleled. Plus it lets me save snapshots of old drafts, which I fall back on from time to time.

OpenOffice – I use this to take my Scrivener draft and create PDFs for paperback interiors and free ebooks. While Scrivener has its own conversion tools, I trust myself more. This program performs really well, and lets you do just about everything Microsoft Word can do. That’s way more than I can say for Pages, which I find unacceptably slow and hobbled.

MacDown – I’m currently experimenting with Markdown to see how well it streamlines my conversion from draft to HTML, important for making ebook files. MacDown happens to be one of many free apps out there for Markdown editing.

Komodo – If I need to do heavy-duty HTML editing, I do it here. This is also the program I use to maintain my website.

Sigil – Great tool for creating EPUB files, once you get past its learning curve. I make ebook files manually because (a) I have a good understanding of CSS and HTML, and (b) I can ensure they’ll come out exactly the way I want at the smallest file size possible. I don’t like crossing my fingers and hoping a compile or conversion will work out. I also don’t trust the cruft that gets added to files in that process.

Epubcheck – Lets me validate my EPUB files. Was quite a helpful troubleshooting tool in the past when I couldn’t figure out why my conversion from EPUB to MOBI was failing.

KindleGen – Lets me convert my EPUB into a MOBI that Amazon will accept. It also gives you compression options to ensure the file size is as small as possible. This is important because Amazon charges you delivery fees every time someone buys your ebook. These fees are dependent on your ebook file size, and can eat into your royalties if you’re not careful!

GIMP – This is what I use for designing paperback and free ebook covers. I have experience with Photoshop and InDesign, so I don’t have much trouble using GIMP. Plus, there are tons of tutorials and docs online in case you’re ever not sure how to do something.

 

If anyone has suggestions of things I should be using, I’d love to hear about it in the comments!


The Grand Experiment: What I’ve Learned From 1.5 Years Of Writing Full-Time

amesjumpWould you believe I still haven’t tired of this arrangement? The balances in my bank accounts aren’t as high as they once were, but that doesn’t bother me nearly as much as I thought it might. Mental health is way more important. Not once have I ever pined for the corporate world. As long as I have the means to keep freelancing, I will!

What’s New

The past couple of months have brought some of the most extreme highs and lows yet. Our biggest low came in August, when our cats Persephone and Rochester passed away within a week of each other. We knew Sephie was in decline, and we were prepared for that. She died peacefully at home. Rochester’s passing, however, was a total blindside. After Sephie died, he stopped being himself. The vet found a slew of incurable problems, including cancer. Putting him down was arguably the hardest thing I’ve ever done. Both cats are greatly missed.

About a month later, I actually finished Blood’s Force and put it up for sale. I was so hyper-focused on this effort toward the end that I forgot little things like taking my car in for inspection. (Oops!) It was also my first time publishing anything to vendors like Amazon and Nook. The process was nerve-racking at times, especially when Amazon initially rejected my book for having the insidious, horribly misleading keyword “Morning” attached to it (i.e., Amazon rejected me for my last name OMG what do I do?! Thankfully, they approved it the second time I tried publishing it). But now that I know what to expect, I think it’ll be easier from now on.

I was really excited to be done with my book after six years of effort, plus I had no idea how long it would take to put together a paperback, so I “went live” with just the ebook version at first. This wasn’t a horrible approach, but as I found out, putting the paperback together through CreateSpace really wasn’t that bad, even with doing the interior and cover layout myself. It was about two weeks from start to approving the physical proof. In the future, I’ll wait to “go live” when both paperback and ebook are listed on Amazon.

Now comes the transition from pure writing to writing + promotion, and I’m still very much an anxious noob with the latter. I’m trying to educate myself and ease in without worrying about selling a million copies right out of the gate. Money wasn’t my goal anyway. The goal was to finish a book that at least one other person enjoyed.

So far, I seem to sell the most by word of mouth and by placing books in people’s hands myself, one copy at a time. I also gave away copies to people who signed up for my mailing list. Of all the copies that are out in the wild now, I’d say a third were given out. I’m hoping to impress people and get them hooked on the series. :)

What Hasn’t Changed

Scheduling with self-compassion remains a big thing for me. I like having a set time for writing each day, and also having an idea of what I want to accomplish every day and week. But if other things get in the way, I let that happen and adjust accordingly. No big deal. I don’t set hard release dates for books or stories, and I don’t do pre-releases either. Some people can work well with that, but for me, it creates unnecessary pressure and stress.

I’m still learning how to manage my anxiety, mostly through mindfulness meditation. It seems like promotional situations are my largest trigger right now. I’m just not a “Hey, look at me and buy my things!” person. I’ll be delegating as much of that as I can. Where I saved money on Blood’s Force by doing a lot of things myself (ebook and paperback creation, web design/maintenance, mailing list management), I’ll be laying out money so someone else can worry about promotion for me. It’s always good to allocate your funds to best advantage.

Income Breakdown

I’m still editing at The Daily WTF. My income there has increased to about $300-$400 a month.

In another month or so, I’ll also start receiving royalty payments from some of the stores where my book is on sale (I have to exceed a $10 minimum in royalties first, which has only happened at 2 stores thus far). My book is no runaway bestseller, so I don’t expect royalties to add much. Still, I can cover a few bills every month as-is, which isn’t bad!

Just FYI, this income breakdown is here more for illustrative and tracking purposes than to brag or measure myself against. Money is never the goal of this enterprise, but I think it’s helpful to provide an idea of what the finances look like for a full-time writer who’s just slipped her foot into the publishing world.

Again, I’m very grateful to my past corporate self, who socked away most of every paycheck over many years and helped make this possible. My husband also makes this possible with his financial and emotional support. :)


My Uncle’s Painting

painting

Mom was in the midst of a major clear-out of the attic, amassing unwanted items for an upcoming neighborhood yard sale. When she gets it in mind to clean house, nothing is sacred. (Those sentimental heart-strings that spontaneously form around objects I haven’t looked upon in years? I must have gotten those from somewhere else.) Relics of our shared past piled up in her bedroom for the ultimate judgment: stay, or go.

My sister and I had first dibs. Mom walked me through the inventory: a half-strung acoustic guitar, crumpled homework assignments, faded needlepoint, piles of sheet music. I managed to turn all of this down- and then Mom pointed out a framed watercolor of a Boston street.

“Do you want this?” she asked. “Your Uncle Manoo painted it.”

My great uncle Manoocher, to be precise. He was my mom’s uncle, one of my grandmother’s three younger brothers, and had died a few years ago. I only met him once that I can remember, when I was six or seven years old. Considering there’s a large swath of my Persian family I’ve never met, that’s not bad.

During his visit, Uncle Manoo stayed at our house. I remember his bone-crunching hug and kisses- Persians are very affectionate- and the cigarette on his breath, probably the first time in my life I’d been exposed to it that closely. Mom scrambled to find something he could use as an ashtray. As far as I know, he’s the only person she ever allowed to smoke inside her house. Before his visit, I’d been told Uncle Manoo was an architect. For a brief period of time, I had wanted to be an architect too. I drew lots of pictures of houses from the front, using rulers to get the doors, windows, chimneys, and bricks- yes, I drew each individual brick- just right.

Later on, I’d found out Uncle Manoo had also known several languages, written poetry, and produced a few paintings- like the watercolor in my mom’s possession. She was fine with selling it if I didn’t want it, but I couldn’t imagine allowing such an artifact to leave the family. I took the painting home with me, and placed it in my office.

A few weeks later, my mom called excitedly to tell me about a book that had been published in Iran: a book about my great uncle.

ketab

As it turns out, Uncle Manoo is considered the father of modern Iranian architecture. He designed several modern buildings, taught at a collegiate level, and translated important architectural books written in other countries into Farsi. He treated his students like they were his own children, so much so that a group of them collaborated to produce a book about his life, work, and mentorship.

The book is only available in Iran. My last surviving great uncle was able to procure two copies, and sent one to my mom. I was able to flip through it the next time I visited her. It’s impressively huge, nearly two feet tall and several inches thick. My Farsi is poor to middling, but I could spot the innumerable mentions of my uncle’s name on the front cover and amid the pages. Given the lack of understanding, I focused more on the pictures: Uncle Manoo’s letters, poems, designs, and paintings, as well as photographs with family members and students.

One of the pictures, in particular, continues to amaze us. It’s a scanned photograph of the very painting I rescued from the neighborhood yard sale.

paintingscan


The Grand Experiment: 1 Year Since The Big Leap

amesjump

I can’t believe it’s been a year since turning away from the corporate world! I have zero regrets. Defining my own schedule from day to day feels like the new normal, and I’m committed to keeping this going.

However, it’s fair to say that I brought a lot of unresolved baggage back with me from Corporate America, and the public school system before that. Aside from putting the finishing touches on my novel(s), I’ve been working to identify and address those issues, which has helped me become a happier, less anxious person.

Looking back on my old “what I’ve learned” notes, here are some things I can add to past recommendations and observances:

Defining a new routine is still important.
Like most self-employed, I fell into the trap of feeling like I could, or should, be on the clock all the time. After all, I was now working on my passion, right? It didn’t feel like work (mostly), and I had the time- why not be working?

This is the quick path to burnout and resentment. Instead, figure out when your work hours are. What’s your ideal time of day for working, and how long can you keep at it before your brain gives out? For me, it’s 8AM – 12PM, with occasional breaks in between to stretch and let my mind wander. Yeah, I realize that’s not a “full” 8-hour day. Screw that. During those four hours, I tend to have my nose to the grindstone, and get more done than I would’ve in a full day at my former office.

Once I get to 12PM, I’m done with work that day. If I choose to work beyond that, it’s overtime. Usually, though, I don’t. I spend the rest of my day on chores, reading, and play- i.e. stuff I do just for the fun of it. Play time is just as important as work time, and shouldn’t be ignored!

Likewise, it’s good to give yourself weekends- one or two days a week when you do no work at all, allowing your brain to recharge. And when you finish a big project, a longer break is warranted.

Checking in on goals and todos is still important.
Not just to ensure you stay on track. In truth, the plan always needs amending. I’ve learned I’m horrible at estimating how long it will take me to do something. I also find priorities shifting and disappearing constantly, as Life throws curveballs.

I’ve also found it’s easier (and more satisfying) to stick to one thing, and see it through, rather than trying to take baby steps on 1000 things at once.

Giving yourself little rewards and/or visible signs of progress is also important for feeling like you’re getting somewhere. This could be something as simple as a checklist or burndown chart you post on your wall, and update as tasks get done. In Scrivener, my favored word processing tool, I’ve taken to marking all of my incomplete scenes with a red flag icon. When I finish the scene, I get to remove the flag.

Being your own dream boss and cheerleader is SUPER important.
Over the past year, I learned I’m not my own dream boss- at least, I wasn’t. I tended to be overly demanding and self-critical, angry at myself when I couldn’t stick to my own arbitrary timetables. My inner voice, quite frankly, was a nagging slave-driver.

I’ve worked on revising that- developing an inner voice who’s laid-back, encouraging, and doesn’t get pissed off when things don’t go as planned. Let me tell you, this boss is a lot easier to work for, and has eased my anxiety considerably.

The Money Front
Still not a millionaire ;) But my income has gone up since my promotion to Editor at The Daily WTF. I now make roughly $260/month. Enough to cover a couple of bills, not enough for self-sufficiency. I’m still relying heavily on my husband’s income, and the savings that Past Me socked away during her corporate career.

The good news is that financially, we’re on about the same ground that we were last year, just prior to leaving our jobs. We’ve bought another year off- and we’re more than happy to take it!


“I Did So Love Being A Star”

catseye_nebula

I’ve read Madeline L’Engle’s A Wrinkle In Time at least a dozen times since I was eight years old. One passage in particular has always stuck with me:

Suddenly there was a great burst of light through the Darkness. The light spread out and where it touched the Darkness, the Darkness disappeared. The light spread until the patch of Dark Thing had vanished, and there was only a gentle shining, and through the shining came the stars, clear and pure. Then, slowly, the shining dwindled until it too was gone, and there was nothing but stars and starlight. No shadows. No fear. Only the stars and the clear darkness of space, quite different from the fearful darkness of the Thing.

“You see!” the Medium cried, smiling happily. “It can be overcome! It is being overcome all the time!”

Mrs. Whatsit sighed, a sigh so sad that Meg wanted to put her arms around her and comfort her.

“Tell us exactly what happened, then, please,” Charles Wallace said in a small voice.

“It was a star,” Mrs. Whatsit said sadly. “A star giving up its life in battle with the Thing. It won, oh, yes, my children, it won. But it lost its life in the winning.”

Mrs. Which spoke again. Her voice sounded tired, and they knew that speaking was a tremendous effort for her. “Itt wass nnott sso llongg aggo fforr yyou, wwass itt?” she asked gently.

Mrs. Whatsit shook her head.

Charles Wallace went up to Mrs. Whatsit. “I see. Now I understand. You were a star, once, weren’t you?”

Mrs. Whatsit covered her face with her hands as though she were embarrassed, and nodded.

“And you did– you did what that star just did?”

With her face still covered, Mrs. Whatsit nodded again.

Charles Wallace looked at her, very solemnly. “I should like to kiss you.”

Mrs. Whatsit took her hands down from her face and pulled Charles Wallace to her in a quick embrace. He put his arms about her neck, pressed his cheek against hers, and then kissed her.

….

“I didn’t mean to tell you,” Mrs. Whatsit faltered. “I didn’t mean ever to let you know. But, oh, my dears, I did so love being a star!”

As a kid who was getting more and more interested in astronomy, I was captivated by the idea of being a star. Well, it just so happens I am a star- several of them. So are you. This is probably my favorite thing that I have ever learned.

Our universe is made up of one simple element: hydrogen (one proton, one electron). The insides of huge stars are the only places in the universe where hydrogen atoms can be fused together into bigger elements like oxygen and iron. When those massive stars run out of fuel to burn, they explode into supernovae, scattering their own ashes for thousands of light years in all directions.

The ashes contain most of the elements in the periodic table. Those elements eventually clump together with elements ejected by other supernovae to form new stars, planets, and other neat things- like you and me. Carl Sagan put it this way:

“All the elements of the Earth, except hydrogen and some helium, have been cooked by a kind of stellar alchemy billions of years ago in stars, some of which are today inconspicuous white dwarfs on the other side of the Milky Way galaxy. The nitrogen in our DNA, the calcium in our  teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of star-stuff.”

Many Mrs. Whatsits sacrificed themselves against the darkness, and the end result is us. You and I might even share atoms that came from the same ancient star, millions of light-years distant in space and time.

Blood ancestry connects us to other humans. Star ancestry connects us to the universe: animals, flora, mountains, oceans, planets, asteroids, even our star-cousins forming in distant nebulae right now.


The Grand Experiment: 6 Months Since The Big Leap

amesjump(Image credit: imagebase.net)

November 2014 is a big month for me. My spouse and I have been together for 10 years- and it’s now 6 months since I jumped ship to write full time!

I can’t believe how fast it’s gone. Am I glad I did it? 100%! Do I feel any yearn to go back to my old full-time schedule? Not at the moment. Though I do miss certain coworkers of mine, I’ve enjoyed a lot less anxiety since leaving, particularly since I no longer dread waking up in the morning.

I still do plenty of work, but it’s on my own projects, on my own terms. It’s not going as fast as I’d like, perhaps. Then again, if I had my druthers, I’d have ten bestsellers out by now, and would be typing this from a cozy London flat.

Anyway, here’s a little breakdown on what I’ve accomplished, fell short of, and what my financial status is like. I’m hoping it might help anyone else contemplating their own jump out of the workforce.

Accomplishments

* I’ve set up a daily work routine that I’ve stuck to: waking up around the same time of day, writing until lunch, then usually writing a few more hours in the evening. I use the afternoon for exercise, chores, hobbies, and naps.

* A promotion to Assistant Editor at The Daily WTF. I now write a monthly feature, plus help with sorting and choosing submissions.

* Got through two big editing passes with my novel, and am currently on what I HOPE will be the last major rewrite. This sucker will expand the manuscript by as much as 50%! I think the book will end up being better this way than if I just rushed it out as-is. I also think I’ll be able to finish future books faster, as I’m learning a lot about the sort of thinking and planning I should’ve been more thorough about five years ago.

* Put together a more polished freebie for my mailing list subscribers. Retiring the Gods is a short story collection I’ll be adding to over time as inspiration strikes. Where can I send your copy? :)

* Kept up with weekly blog posts here- mostly about writing tricks, but sometimes straying into more general territory.

* Spruced up my website. Navigation is mostly the same, but everything is now in much niftier colors, and HTML5. Ooh!

* Got back into drawing. Using my discipline tricks, I started by forcing myself to work on a picture for half an hour at a time, gradually expanding to an hour. I’m reconnecting with that “flow” I once had that let me sit with a picture for hours at a stretch. My progress is slow as I relearn how to do things, but I’m having fun with it.

* Returned to martial arts after a long hiatus- something that had been completely off my radar! I’ve taken up German longsword with a local HEMA branch. It’s a lot of fun. A little more expensive than I’d prefer, given my reduced income, but hey, I was stashing away the bulk of every paycheck for years before this. Past-Self says to Present-Self, “Go out and have fun, you crazy kid. Just don’t get your bell rung.”  :)

Also, the swordfighting experience will undoubtedly come in handy as I write about knights spanning the galaxy in spaceships.

Income

$140/month from TDWTF. That’s all right now, but I’ll take it.

To leave the rat race one day, you must save your pennies first! Obviously, I couldn’t live on this if I were alone and without significant savings. If you’re looking for ways to stretch your current income further, Mr. Money Mustache comes highly recommended.

Stuff I Still Want To Do

* Finish the novel, and start on the next one! LOL I’m hoping early next year.

* Find a way to stick with my floundering language study. I think the main problem is not having anything to study for– no people to talk to, no upcoming trips, etc. Also, I still can’t roll my double-Rs in Spanish!

Current languages (in order of strength): German, Spanish, Farsi, Japanese

Future languages: Dutch should be really easy to pick up, since I have German and English. However, I don’t have any use for it currently. Quick, someone send me to The Netherlands for an extended vacation!

* Learn to wake up earlier. 8:00 AM isn’t bad, but 7:30 or 7:00 might be better. I don’t know if it’s happening, given how late I like to stay up!

That’s all for now. Here’s to another fun 6 months! If you have any advice or encouragement, drop me a line in the comments :)


Things I Wish Everyone Knew About Epilepsy

lightbulbsIf normal people get one lightbulb over their heads, I get three. Then my brain overloads.

My last full seizure occurred back in 2012. I woke up strapped to a gurney and wearing an oxygen mask. A pair of EMTs wheeled me out of a place that kind of looked like work.

Oh. Did I have a seizure at work? I wondered. Where do I work? What day is this? All the usual confusion flooded in along with nausea and a splitting headache.

The techs packed me up in an ambulance. On the ride to the hospital, they asked the usual questions to assess where my brain was in its rebooting process. Name? Address?

After each question followed a long pause that I struggled to fill. My brain tried to connect to that information, but couldn’t. This time, it was just frustrating. On past occasions, I’d broken down crying.

No big deal, they told me. It’ll come back soon. They had my wallet and purse, which a coworker had grabbed from my desk.

I remained calm in that ignorance-is-bliss sort of way. The EMTs told me which hospital I was at, wheeled me into the ER, put me on a bed, gave me an IV, and said my husband was on his way.

More and more memory came back as I recovered. I had gone to work that day alone; my husband, who’d worked at the same company, had been working from home. I’d been sitting at my desk when I’d started not feeling well, that familiar dizziness and nausea. Through the fog, I’d realized I needed a break, and feared throwing up at my desk. That was probably why I’d gone to the bathroom and locked myself in a stall.

Then the seizure hit. I fell and banged my head off of something, and wound up crumpled in the bottom of the stall with an inch-long gash in my forehead. Sometime later, someone found me in the bathroom and called for the ambulance.

I was told that blood had gotten everywhere. I believe it; head wounds like to bleed. I even found dried blood pooled in my ID badge holder, which I wore on my hip. The ER doctor who stitched up the wound had this weird glee in this voice when he told me, “That’s gonna leave a scar!”

I had only started working at this place a month before, and was mortified this had happened in front of people I barely knew. I also felt really bad for whoever cleaned up the mess.

It wasn’t fun, but I’m thrilled to say that I haven’t had a full seizure since.

I started having seizures at the ripe old age of 24. It took me six years to find a good neurologist and effective treatment, and as it turns out, I’m one of the lucky ones. Here are a few things I didn’t know about epilepsy until I was staring it in the face:

The doctors don’t know. The brain is still a mystery. The first time you have a seizure, you’re rushed to the hospital and given a CT scan. That scan might show a tumor or brain deformation. Or, as in my case, it might be perfectly normal. So you go for an MRI next. Normal. EEG? Also normal** (but hey, you make a great Borg Queen with all those electrodes on your head).

At this point, your doctors throw up their hands. One seizure could be anything. You may not ever have one again.

Whoops—but I did! And still my brain looked fine. Idiopathic epilepsy it is! “Idiopathic” being the fancy doctor word for “We don’t have a goddamn clue what’s causing it.”

You look to your doctor for reassurance and answers—especially when you’ve been healthy your whole life, you’re scared, and you don’t know what the hell is going on. Unfortunately, medical science just hasn’t figured out why most seizure disorders occur. It’s a tough thing to have to accept.

It’s different for everyone. The problem with nailing down epilepsy and other neurological issues is that no two people suffer identical forms. Abnormal electrical activity can affect many different regions of the brain, to different degrees, leading to all sorts of weird problems.

Some epileptics have the violent, thrashing seizures most people are familiar with, but not all do. Some epileptics just stare off into space. Some lose bowel or bladder control. Some have orgasms. And did you know hiccuping might be a form of seizure? (There’s no consensus on this.)

I’ve been told my seizures look scary, but they sound pretty uneventful as such things go. I tense every muscle in my body, and stop breathing long enough for my lips and hands to turn blue. I’m unaware of it because I’m unconscious at that point. It’s like sleeping in on Saturday, or all those billions of years before I ever existed. I couldn’t care less until I wake up. Then I get treated to a headache, nausea, amnesia—and often, a crushing sense of guilt. Sometimes I’ll cry and apologize to everyone around me.

A person’s epilepsy also may or may not have a trigger. Strobe light patterns may trigger a seizure in some epileptics, but not others. I’m not photosensitive, but stress does seem to make my seizure activity worse. As does my menstrual cycle—a poorly understood phenomenon called catamenial epilepsy.

Frequency is also variable. Some people’s brains have epileptic activity all day long. Others may go months or years without a seizure.

It might come with spider-sense. Some epileptics, like me, have a  set of symptoms that proclaim BEND OVER, A SEIZURE IS HERE. This is called an aura, or partial seizure. My symptoms involve feeling spaced out while my thoughts spin out of control, referred to as forced thinking. (I can never remember what I was thinking about afterward.) Then I feel nauseated, sometimes full of dread. Sometimes I get a sense of déjà vu as well, just to change things up. I also stop being able to spell or string words together in a sentence.

I can never control whether I’m with-it enough to lie down somewhere or tell someone what’s going on. In the latter case especially, I often can’t push words out of my mouth. Sometimes I wave my hands in distress. Sometimes I run to the nearest bathroom, convinced I’m about to throw up (I never do). Sometimes a full seizure follows, and sometimes it doesn’t. An aura by itself is not uncommon. Afterward, I might feel anywhere from “Well, that was annoying. Who’s up for coffee?” to “I’m going to bed, wake me up next month.”

No one knows how the medication works, or if it’ll work for you. That is not an exaggeration. You know what seizure medication is? “Hey, we gave this pill to sufferers of Disease X. The Disease X patients who also have epilepsy stopped having seizures while on this pill. This pill is now an epilepsy drug!”

You probably don’t have Disease X. You probably don’t need treatment for Disease X, or any of the horrible side effects that come with it. Too bad! There is no medication specifically targeted to treat epilepsy. There’s just a huge swath of these “Disease X and also seizures” meds that you get to Russian roulette your way through until you find one—or a combination—that stop your seizures without killing you.

Again, not an exaggeration. The first medicine I tried made me suicidal. The second gave me a serious allergic reaction. I was damn lucky to wind up unscathed on Pill #3, but this one has a reputation for a wee bit of severe liver damage. I have to get my blood tested twice a year to make sure my liver isn’t, you know, disintegrating.

But, no more full seizures. It’s a trade-off you learn to accept, unless you want to be found in a bathroom stall covered in your own blood.

pillsOh- and never miss your dose. That in itself can trigger a seizure.

Some people never find a drug that works for them. Depending on how badly epilepsy affects them, surgery might be the next option. It’s no more complicated than cutting away the part of brain in which the seizures occur. Yay?

There are odd things you can’t do anymore. If you don’t have an aura, you’re often prohibited from driving. You’re not allowed to skydive (fine, I never wanted to!). You may or may not be able to donate blood anymore—not just because of the medication in your blood, but also because those medicine levels drop when you give blood, which itself can result in a seizure.

Due to the medicine(s) you’re on, you may have other weird prohibitions. I can’t eat grapefruit or starfruit, for instance. Also, alcohol has a completely random effect: either it doesn’t touch me at all, or it puts me right to sleep.

Being on chronic medication means you always have to worry about how much medicine you have on hand, and when to harass your neurologists for prescription refills. A bad neurologist might never return your calls. Then you run out of meds, have a seizure, and back to the ER you go! (Yes, this happened to me. A good neurologist is hard to find, but invaluable.) When you travel, you must remember to pack your pills and a note from your neuro. Yes, Mr. TSA Agent, I’m allowed to have these. Really, who’d be taking this stuff for fun?

You feel like it’s your fault. Because no one really knows what’s going on inside your head, why it started, or how to make it stop, it’s tempting to look for your own answers, especially after getting burned with shitty pill after shitty pill.

Google things like neuroplasticity, and it sure seems like it should be possible to rejigger your brain somehow so the seizures vanish without medication or surgery. You begin to feel like there’s something you’re not doing that you should be doing. What could it be? “What if I avoid stress and caffeine from now on? That ought to stop the seizures from triggering!”

So you experiment a little, cross your fingers … then you have another seizure, and you feel like a failure who places an unfair burden on everyone you care about. I feel like I have it easier than my loved ones, who have to watch it happen or be prepared to rush home at a moment’s notice because I feel an aura coming on.

It could be my fault. There might be something I did or am still doing that led to all this. I may never know, which can be really frustrating sometimes.

What to do for someone having a seizure. There are a lot of first-aid sites that cover this better, but here are a few general points:

  • If the sufferer is thrashing, don’t restrain them. Just make sure they don’t bump into anything.
  • Don’t stick anything in their mouth.
  • When the seizure’s over, turn them on their side (if you can) to open airways.
  • A seizure doesn’t automatically necessitate a trip to the hospital. If the person has a known seizure condition they’re already being treated for, it may be OK for them to stay home. See if there are family or friends nearby who can confirm. When in doubt, call an ambulance.
  • Check for medical IDs that the EMTs can look at when they arrive. It’s important for them to know what medication(s) they’re currently taking, and if they have any allergies.
  • As they’re coming around, be calm and reassuring. They probably have no idea who they are, or why they’re on the ground feeling like crap. When it hits them, they might be accepting, or they might freak out. Again, let them know they’re OK.

Aside from my daily meds, epilepsy isn’t much of a specter in my day-to-day life. The longer I can extend my seizure-free streak, the better. I’m basically training my brain not to do that anymore. There’s a chance I could shed my meds in another few decades of no seizures, but more than likely, I’ll be on them for life, increasing dosage over time to account for my liver adapting to their tricks.

Or, hey- maybe a real neuroplastic therapy will surface, or marijuana will become the seizure stopper. I’m definitely keeping an eye on that front!

** – My EEG is now abnormal in the left temporal lobe. Over time, epilepsy changes your brain, reinforcing the connections that lead to seizures.

Sorry for the rant, but I hope it was informative! Leave any sort of comment you want  :)