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. 

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.

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. 

In The Nine: Inside the Secret World of the Supreme Court, Toobin uncovers the personalities hidden beneath the judicial robes, sometimes revealing moments so profoundly intimate one wonders who spilled the beans. Ultimately, Toobin both humanizes the judges and demystifies their rulings. But The Nine is more than mere character study; it traces the history of the conservative judicial revolution that started with the founding of the Federalist Society and recently began to bear fruit following the resignation of Sandra Day O’Connor. 

-read the rest at the link above

If you’ve ever been steamrolled by obnoxious innuendos from a man you wish you’d never met, then you already know a little about the experience of listening to Brief Interviews with Hideous Men, the audio version of the critically acclaimed David Foster Wallace short story collection. The “interviews” consist of men sharing their innermost thoughts about sex and relationships, often exposing — flasher-like — their twisted motivations and desires. Something about the audio format — maybe it’s the way it cannot be slammed shut like a book, or hurled at the wall — intensifies its characters’ hideousness to a whole new level. 

—read the rest at the link above

If you have ever secretly thought Alice in Wonderland looks suspiciously prim in her trademark pinafore and pale blue dress — crisp and clean despite taking that famous trip down the rabbit hole — then prepare to have your image of Alice rocked. The debut novel by Melanie Benjamin, Alice I Have Been, reveals the “real Alice” behind the beloved children’s book, and she is anything but prim or proper. On the contrary, the real Alice — full name, Alice Liddell — is an ahead-of-her-time tomboy trapped in constricting Victorian garments who longs to roll down hills and feel grass between her bare toes. This defiant spirit makes her the perfect muse for family friend Charles Dodgson, aka Lewis Carroll.

— read the rest at the link above