Morning view out my window, the last day I ever woke up in Portland, Oregon.

lost rabbit by train tracks, Portland, Oregon

I have always loved abandoned things: stuffed animals dropped on rainy sidewalks, empty shopping carts, eyeglasses, the muffin nobody buys at the cafe. This is not some saintly impulse, though. I love the pangs in my chest, the aches in my calves and joints, the tears. I love these abandoned things because they hurt me.

From the article:

Epilepsy is the neglected stepchild among neurological diseases. On a per-patient basis, it gets about 20 percent of the research money that Parkinson’s receives and about 50 percent of the Alzheimer’s total. These figures include contributions from the government, pharmaceutical companies, and nonprofit foundations. Most of the existing research has gone toward developing anticonvulsant drugs, but these have serious side effects and more than a third of epilepsy sufferers get no relief from them. Epilepsy causes more than 50,000 deaths a year — more than breast cancer.

And yet, as I have mentioned previously, people so often accuse epileptics of exaggerating or faking. They refuse to accept this is a serious disease.

Part of this misperception stems from the (usually) intermittent nature of seizures. People think that because (many) epileptics only experience seizures sometimes, the rest of their lives are worry-free. Those seizure-free days or weeks or months must be cake.

Part of it is because people figure anti-convulsants solve everything. 

No.

The medications are a nightmare. Imagine living with the side effects: blurred vision, stomach upset, rashes, reduced white blood cells, inflammation, mood changes, and the list goes on. Of course, it depends on the person and the medication. I tried several medications back in the day. Every single one made me feel like crap. 

And many epileptics find no relief from pharmaceuticals.

Forget medications for a moment. Consider how epileptics have to carefully construct every single day to avoid triggering seizures. They have to sleep well, eat right, exercise just the right amount (and at the right intensity), avoid stress (good luck with that), and sidestep a whole host of personal triggers.

Wild parties are out. Alcohol is dangerous medication or no medication (but perhaps especially with medication). For me, even occasional late-nighters spell danger.  For some, certain lighting conditions are dangerous: strobes or even just the flicker of flourescent lightbulbs can spark seizures. Music even causes seizures for some epileptics. 

Imagine avoiding music. It plays everywhere—the grocery store, the cafe, at church, the mall, even elevators. Church bells ring out and there is no escaping them. Imagine that. Imagine avoiding flourescent lights or strobe lights. Imagine dealing with the “flexible scheduling” policies of many employers, who expect 24-hour availability. Imagine asking for an accommodation for scheduling issues or other potential triggers on the job. Imagine the wrath of co-workers who think you are “getting out of” something. Or managers who brand you a thorn in their side. (Never mind that the ADA supposedly covers you. Oh, and if you need to assert your rights or sue? Prepare to taint your name and possibly never work again if words gets out.)

Hormonal birth control? Forget it if you take epilepsy medications.

Need an antibiotic? Prepare for possible seizures.

Plan on swimming at the gym? You better not do it alone. 

Driving? If you aren’t seizure free, forget it. 

Plan on taking a walk alone? Make sure you have identification and a medical bracelet. And don’t take anything too valuable. People have been known to pick-pocket epileptics while they convulsed on the sidewalk or floor. (I should know. This happened to me.) 

And then are the auras, mood issues, depression, and non-stereotypical kinds of seizures that people really freak out about. 

Prepare for police to not understand. 

Not to mention those 50,000 deaths. 

Check out my blogs:

Karrie Goes Nuts- my food blog, in which I go cuckoo for cashew cream and all things nutty

Forensic Writer - my blog devoted to forensic science and writing alchemy

West by Northwest – psychogeography SLC

Enjoy! 

Earlier, I posted about the “up & up”  house brand at Target. For me, “up & up” is a “lovemark.”

What is a  lovemark? According to lovemark.com,  “take a brand away, and people will find a replacement. Take a Lovemark  away, and people will protest its absence … Put simply, Lovemarks  inspire loyalty beyond reason.” (emphasis added)

Think iPhone. Think Starbucks. Think Target. Think Trader Joe’s.

When it comes to food, my lovemark is Trader Joe’s. I miss my Portland, Oregon, store dearly and curse the day I left it behind to move to Salt Lake City. I miss the Kalamata Olive Oil, the Chevre with Honey, the Chard of Many  Colors, the Sweet & Spicy Pecans, cheap pine nuts, cheap almonds, cheap cashews, Nuts About Raspberries & Chocolate trail mix, Solid White Albacore Tuna in Olive Oil, Trader Darwin’s Flaxseed Oil, the frozen yum-yums,  and well, the non-frozen yum-yums. I miss the silly stories in the Fearless Flyer. I miss the twists on the store name: Trader Darwin’s (for supplements), Baker Josef’s (for chocolate chips), Trader Ming’s (for Chinese food), and the list goes on.

I even miss the weekly  disappointment of discovering a favorite food had been discontinued. Some people over at Chowhound even have a verb for that: getting “Trader Joe’d.”

Oh, and the cheap prices, of course. I could stuff several canvas bags full of food and never spend as much as I did on one bag at Whole Foods.  And yes, my loyalty and love know no bounds.I love Trader Joe’s beyond all reason. I am willing to pay  people to ship Trader Joe’s products hundreds of miles in USPS flat-rate boxes. Sure, I can find  some decent trail mixes or olive oils or snacky things around here, but they are not Trader Joe’s. If I want a little joy—a little love—with my calories, I gotta get Trader Joe’s. Sad, maybe. Desperate, for sure. Loyalty beyond all logic and reason, hell yes. What is your “lovemark?”

The best part, though, is the name:

image from the Target website

“up & up” just sounds happy. In this time of economic crisis, layoffs, rising prices, and endless unemployment, many people previously accustomed to fancier brands have turned to generics. Anywhere else, the prospect might feel depressing. At Target, it is “up & up” – not “down & out.” 

And for those who always stuck to generics, why not move “up & up” with sophisticated, minimalist labels that scream class?

image from the Target website

I also love the association with the old expression “on the up and up.” It rings of trustworthiness, quality, reliability, and honesty. 

Combine all of this with cute expressions on each package (“simply duds” on the laundry soap bottles, “face fabulous” on the benzoyl peroxide gel), and every product feels like a less-pricey version of Philosophy.

My affection for “up & up” reminds me of how I feel about Trader Joe’s. I just get happy when I hold one of the packages in my hand. That a brand can have this effect on me even when I am aware of the branding that makes it happen? That is powerful stuff. 

Many SLC locals and online commenters flat-out accused him of faking. You might think this is due to the righteous (and rightful) disgust over his crimes, and that would be partly true. However, people have hurled the same accusation at me and other epileptics I know. People tend to see epileptics as “crafty,” conjuring seizures to manipulate situations and “get out of” work, school, whatever. Of course, in Mitchell’s case, public reaction is complicated by his behavior in court, but still, it touched a nerve. 

You can read the post here.

This all got me thinking about perceptions of truth in writing. I write literary nonfiction. I use the word “literary” because it makes more sense to people, although most writers label the genre “creative nonfiction” or CNF for short. The word “creative” trips people up. “How can it be nonfiction if it is creative?” They always ask. Never mind that all writing is creative, regardless of whether its author bases it in fact. The idea is to distinguish “creative nonfiction” from, say, a school book report or newspaper article (although, of course, those involve creativity, too – in word choice, logical leaps, organization, research, and the list goes on). 

Writers debate the notion of strict adherence to truth in memoirs and essays. Some argue that every single detail must remain pure, unadulterated, unaltered. Others argue that small details, such as the color of a baseball cap, are open to creative manipulation. Others claim to adhere to a “higher” truth and therefore pledge no allegiance to a literal one. These are the folks who make headlines when someone snitches about their lies. Of course, some writers get accused of lying even when they tell the truth as best they can. Some families like to keep dirt swept under the rug. 

My view? I believe in sticking to the facts. The trouble is, sometimes the facts themselves get a bit slippery. Memories are mercurial. They change and evolve and sharpen and blur and disappear. One sister’s fact is a brother or father’s lie. That is just the nature of the beast. So while I stick to facts, I also recognize that my truth may not be your truth. 

It gets even more complicated when a writer suffers from mental illness or epilepsy. After all, those illnesses tend to slick up the railroad ties, sending trains of thought careening off course. Sometimes, I feel I must work doubly hard to document and check my facts. I question my perceptions and memories-because I know readers do. Often, I use research to help me feel more confident in the facts as I remember them. Family photographs, diaries, letters, cards, newspaper articles, and emails to my sister and mother all serve to help me get things right. 

When people find out about my seizures or discover that a writer has depression or bipolar disorder, they tend to question the “truth” of their writing even more. They tend to find it less believable. 

People have asked how I can remember something. They have commented on what seems (to them) like paranoia or hyperbole because my insight into seizures is-for obvious reasons-quite different from what they have always “known” to be the “truth” about them. 

Then there is the flip side: people who say they love writing by epileptics. They believe epileptics possess some “different” or “special” way of seeing the world. They mean it as praise, but it comes off as more of the same. After all, if I possess some “epileptic” way of perceiving the world, doesn’t that mean my “facts” are all tainted by epilepsy-that my perceptions could never hold up to scrutiny by “sane” logic? That my logic is not logical at all?

Do writers with mental illnesses and seizures face an even tougher uphill battle when it comes to winning trust? Are readers-and even family and friends-quicker to deny the “truth” of their writing? Is it fair to question “truth” more scrupulously when you know the author suffers from something like seizures or bipolar disorder? Do you find yourself doubting? 

“Change your Facebook profile picture to a cartoon from your childhood and invite all your friends to do the same. Until next Monday there should be NO human faces on Facebook, but invasion of memories. This is against violence towards children, A GREAT CAUSE.”

While I understand the good intentions behind the campaign, I have to wonder: What, exactly, does it achieve for “NO human faces” to appear on Facebook until Monday? I understand the “invasion of memories” idea—how favorite cartoon images transport adults to a state of child-like wonder. Adults forget innocence. They often forget the special vulnerability of children. Regression reminds them. 

However, for those who grew up with abuse, an “invasion of memories” does not hold the same wonder. Abuse survivors never forget what vulnerability feels like. They never forget because they never quite grow out of it; instead, they grow a shell and carry it, snail-like, on their backs, curling up inside for protection. 

Saturday mornings in my house usually meant my father was home, which meant walking on eggshells, whispering, peering around corners before entering rooms, hiding in a corner in my bedroom, staying out of the way, trying not to trip a land mine or uncork a grenade. Sure, I watched Saturday morning cartoons, but I did so cautiously, tensely, with secret and quiet enjoyment, my peripheral vision focused sharp on any movement behind or near or outside, on the front lawn. I never knew when or if the bomb timer would click to zero, his tolerance drained. 

Several Facebook acquaintances—kind to me now—once teased and taunted and laughed at me (or stood by as others did, saying nothing). Still, they have joined the “invasion of memories” campaign, their profile photo boxes like Clark Kent’s phone booth. They step in as themselves and step out as superheroes or Scooby Doo or Transformers. 

Back then, these Facebook acquaintances could not see past my striped tights and dyed black hair to my human face. They could not see past my strangeness to the reason behind it—the reason I adopted a costume, a mask, something to hide my identity. They saw me as, well, a cartoon caricature. Will that memory invade them now? 

*NOTE: I purposefully listed cartoon characters at random, so as not to point a finger at anyone specifically.

Is it bone memory, too? Images forced out of metatarsals, patella, femur, phalanges. Water tower, recurring kidnap dream, man with green skin like the Incredible Hulk, dead body in the street across from our house, greasy sawdust and pebbles when I shake the rug on the backdoor step, brick-red paint peeled from the picnic table in the backyard stuck under my fingernails, a bitter taste when I bite off my nail tips, picnic-table paint in my teeth, sister convinces me to eat blade of grass, sick from the weed killer on the lawn, giant sunflowers in the backyard garden, like planets colliding into Earth, or eclipses, or atomic bombs, or my father watching through secret cameras, toy telescope on the front lawn, wanting to map the stars, climbing onto my father’s shoulders for Haley’s Comet, as if he were tall enough to give me a better view, to push me closer to the sky, the way I could taste the smell of Grandma’s water pump outside her back door—flat soda abandoned in a glass in a dusty windowsill, tooth fillings, sinus infection, blood after a dental cleaning, concrete after the first spring rain—sucking on chips of concrete snapped from Grandma’s porch steps, loving the scraping noise, knowing exactly when we arrived in Froelich even though I was asleep every time, the way the car seemed to stop differently at that particular stop sign, the popping of gravel when we turned down the road, the State Farm Insurance sign at the end of the driveway, Grandma waving from the driveway, the outline of her colostomy bag visible under her skirt, wishing my best friend could have come with me to practice tricks on our bikes out here in the ditches and creeks, blue slushies at Hog Wild Days in Hiawatha, tornado rides and pancake breakfasts, riding over the interstate bridge and crashing rear-over-front, no helmet, MRI, training bras, pink jean shorts, Electric Youth perfume, shooting baskets from the bottom of my driveway hill, no backboard, empty lot across from elementary school playground, hiding in the storm drains, flips on the swing set bars, my sister’s arm bent the wrong way, poking the plastic bubbles in the seat covers of Dad’s Matador, fingers slammed in the car door, secret passageways at the Masonic Temple, clown tapping on the car window and handing me a balloon animal—a cat?—because he felt sorry for me with my finger splints and dried up streams of tears on my cheeks, cat sitting in the southern hemisphere of my broken globe—stop. Back at apartment building. Walking the bikes through the back door to the elevator. Dizzy from my helmet. Feet still vibrating. 

It will not always feel like this to ride my bicycle. But for now, I have to accept that these memories need to come out of hiding, that pushing pedals means pushing images back out into the sunlight, that my bicycle is a time machine.

For the past five years, forensic scientists in London have been recording frequency variations in electricity on the National Grid. It turns out that variations occur regularly, and they create a “unique signature of the electrical frequency” at any particular moment, according to “The…

-from my Forensic Writer blog — a new kind of forensic science that has inspired me.