Beautiful Night

Image source: some site about Edinburgh

In my whiny pirate post, i lamented how tired i was to be living a life in unpredictable, occasionally swirly, churning seas. But i was reminded tonight as i read some of the lyrics to a Josh Ritter song, that some days the life of a pirate can be fairly savory.

Beautiful Night

Up here in the crows nest I am swimming through the breeze 
One last memory from the sun as it is sinking by degrees 
And high above the albatrosses, on the wing is light 
And I will sing to her as she flies by 
On this beautiful night 

Ahead is the horizon, always changing, it stands fast 
Far behind me are the desert islands, shipwrecks Of the past 
And I have seen the cannons sounding in the early morning light 
But I have left my battles for the day 
On this beautiful night 

Below me, all the sailors, they're on this journey too 
And each of us must make our unknown way upon the blue 
So tonight we cast our worries, 
Float Jetsam on the tide 
And we'll watch them echo far away 
On this beautiful night 

Flat earth may end 
We may sail off the edge 
And not be seen again 
So I sing and hope my song will form 
A rope of golden chords 
So that I can rescue someone else Should they fall overboard 

Because some of us are pirates and some of us are damned 
But all of us, need all of us to ever find the land 
And though the passage of good hope may seem 
Like a needles eye 
We're floating on tranquility On this Beautiful night 

Up here in the crows nest 
I am swimming through the breeze One last memory from the sun 

-Josh Ritter

He's a phenomenal musician from right here in Moscow, Idaho. He has so many great songs, i could post one every day for months. Here are a couple for an introduction if you don't already know of him:

Letter From My Brain to My Heart by Rachel McKibbens

This house is dirty, but comfortable.
Behind each crooked door
waits the angry weather of a forgiveless child.
I cannot help but admire this horrible
power of mine, how each small thing
can become a death: the lost house key. A spoiled egg.
A howling dog. There is no prayer or pill for this.
It is a ruthless botany; I might as well
be buried in the yard. I have no one to blame.
Not the mother who sang to an empty cradle.
Not the Dog of Spite who bit my hand,
just this long-legged sorrow
who trails my every joy like a dark perfume.

You have my permission not to love me;
I am a cathedral of deadbolts
and I’d rather burn myself down
than change the locks.

-Rachel McKibbens 

Mumford and Emmylou do Simon and G-Funk

Did y'all catch this on the TV? A pretty incredible duo if you ask me:

The Axelrod Family and more about AEDs

After my post yesterday, (basically vilifying anticonvulsant drugs), i ran across this article about David Axelrod and his family (posted in it's entirety below). I'd known about the Axelrods and their daughter, but i hadn't picked up on the part about their finding a medication after 18 years of trial and error (and thousands of seizures). Dudes, i've only been at it a little more than ten.

So there's always hope i guess, as exasperating as the search can be. I haven't even tried every drug out there yet. 

I suppose i should've qualified my recent me-odio-pharmaceuticals post with the fact that i'd just learned from my primary care doc that my BUN and creatinine levels are elevated to the point of concern (now that i've been in somewhat of a groove on Vimpat and lamotrigine). Sooo, in lieu of hitting up my sister for one of her kidneys, i'll prolly be switching medications soon. 

Gah, it's all i can do not to be a nervous wreck about it though. To the point where kidney failure almost sounds preferable. (I know it isn't, but my fear is legitimately irrational, if that makes sense.) So, i'll make the trek to the epilepsy specialist and we'll probably give Depakote a go (so i can equitably dole out insult to other organ systems- sorry, liver!) Fortunately, i'm neither fit for, nor planning on starting my own family, so the teratogenic nature of Depakote is not of concern to me.

For shits and giggles here's a list of the described side-effects of Depakote (found here):

The most common side effect reported in patients taking Depakote is shakiness, or tremors, (ha!) with 57 percent of patients reporting this side effect. Nausea was also reported in almost half of the patients taking Depakote in the clinical trials. Vomiting was reported in a smaller percentage of people, up to 27 percent. Headaches and drowsiness were reported in about 30 percent of people taking Depakote in the drug studies, while weakness and dizziness were reported in about 25 of patients taking Depakote.

Other side effects that were considered "common" in the Depakote clinical double-blind trials occurred in anywhere from 5 percent to 25 percent of patients taking Depakote. These side effects included:

• Loss of hair
• Stomach or abdominal pain
• Weight gain
• Weight loss
• Constipation
• Diarrhea
• Fever and other flu-like symptoms
• Insomnia
• Heartburn
• Tinnitus, or ringing in the ears
• Mood swings and/or nervousness
• Higher susceptibility to certain types of infections
• Blurred or double vision
• Back pain
• Problems with muscle coordination
• Swelling in the extremities
• Memory loss
• Change in appetite (increase or decrease)
• Involuntary eye movements

 Rare and Serious Side Effects

There are some serious side effects of Depakote that are rare, but require medical attention if they occur. These serious side effects include:

• Depression
• Having thoughts of suicide
• Liver damage
• Pancreatitis
• Seizures
• A decrease in body temperature, or hypothermia
• Severe bruising
• Bruising easily
• Unexplained bleeding
• Allergic reaction

So without further complaining, here's the article:

By Bella English

Axelrods focus on strategizing against epilepsy

David and Susan Axelrod and their daughter, Lauren, who was afflicted with epilepsy from infancy into adolescence before a medication was found to treat the seizures.

David Axelrod, President Obama’s chief political strategist, and his wife, Susan, will be in Boston on Wednesday to cochair a fund-raiser for CURE, Citizens United for Research in Epilepsy. Susan cofounded the nonprofit in 1998, because their daughter, Lauren, was left developmentally disabled by epileptic seizures. The event is cochaired by Anne Finucane, global strategy and marketing officer at Bank of America, and her husband, Mike Barnicle; their daughter has epilepsy.

Q. Tell me about Lauren’s journey with epilepsy.

Susan: Lauren is 31 now. When she was 7 months old, she had her first seizure, of thousands. I had no idea what epilepsy was, how a totally healthy baby can be put to bed one night, and then have her life permanently changed. We went through more than 20 different drugs, brain surgery, brain stimulation, special diets, none of them successful. One of the miracles was that at age 18, she responded to a new medication and has been seizure-free since.

David: It’s important to note that she functions like an early adolescent. But we’re lucky. Many of the friends we’ve met have lost their children; 50,000 people a year die from epilepsy.

Q. How was CURE started?

David: Susan and two other moms started this at the kitchen table. And now it funds research all over the world.

Q. David went on “Morning Joe” on MSNBC and promised to shave off his 40-year-old mustache live on TV if you can raise $1 million for CURE by the end of November. Really?

David: It followed from a bet I made with Joe [Scarborough] before the election [that Axelrod would cut his mustache on TV if Obama lost Michigan, Minnesota, or Pennsylvania]. I won it, and it called for Joe to grow a mustache. In exchange for letting him out of his obligation, we launched this Slash the ’Stache campaign to raise $1 milllion, with the first $10,000 donated by him.

Q. How much have you raised?

David: About $600,000 so far.

Q. Susan, you have never seen your husband without a mustache. What if you don’t like the way it looks?

Susan: He can always grow it back.

David: This is a risky proposition, but the cause is worth it.

Q. What does CURE do?

Susan: What distinguishes us is that we are exclusively about research. We are headquartered in Chicago but we fund research in nine countries.

David: Part of the problem is that the epilepsy research kept plowing the same ground. It was hard to get cutting-edge ideas funded. I’m absolutely convinced that what started at the kitchen table will lead to a profound new understanding of and approaches to epilepsy.

Q. Is the federal government doing enough?

David: I think we should be doing more, and more medical research generally. This was an issue in the last [presidential] campaign, and I believe deeply in that. What we need to do is make sure the National Institutes of Health are presented with promising new approaches that they’re willing to invest in. CURE is an incubator for those ideas.

Q. What is the incidence rate of epilepsy?

Susan: The Insitute of Medicine says 1 in 26 Americans will develop epilepsy. There’s a growing number of senior citizens, due to brain tumors and stroke. There are also head injuries, including a good number of our veterans, who develop post-traumatic epilepsy.

Q. David, you have described epilepsy as “terrorism of the brain.” Why?

David: Because you never know when a seizure is going to strike. It can hit anytime, any place. To me, terrorism is fear of the unknown attack.

Q. How is Lauren doing today?

David: She lives in a place for people with developmental disabilities. She’s got jobs, she’s got activities and lots of friends. She’s made incredible progress. We’re grateful, but we’re still aware that every one of those days is a gift.

Q. You’ve been a senior White House adviser and campaign strategist for President Obama. What do you do next?

David: Now I’m director of the Institute of Politics at the University of Chicago, half time. I’ll be writing and speaking the other half, and kibbitzing with the president when he asks for it.

Q. Do you have a message for Republicans now that the election is over?

David: One thing about having a child dealing with something like epilepsy, it does remind you there are bigger things even than politics. There are challenges that unite us as human beings. My message is let’s try to work together to solve those things that face us all.

A Ted Talk Worth Watching

"It wasn't until I let go of the life I thought I should have, that I was able to embrace the life that was waiting for me."

-Janine Shepherd

I loved this Ted talk of hers:

*** 

"When you let go of what you are, you become what you might be."

-Lao-Tzu

Anticonvulsants, Serpents & Insanity

Don't worry, I won't be quitting any day jobs (ha) to pursue a career in photoshop or poetry any time soon. Mine tends to be all sorts of emo, and sophomoric, but i enjoy creative writing and every now and then i can't help but try my hand at it. Suggestions are welcome.

Anticonvulserpents (Title pending?)

The bottle shakes. Rattles.

Snakes inside.

No.  

Just tablets, silly girl.

From the good physician. Who knows things:

Names, doses, titrations, chiralities, medications and clinical theories.

Nevermind the sensation of capsules, 
chalky pills sliding past lips, down throats.

The side effects.

The feeling your boat is unmoored and the world is turbulent, distant, blurry, churning, bewildering, mess.

No Truth in those tablets. 
Yellow, white, pink, blue, green. 
(Weren't those colors safe once?) 

No panacea for me. For lots of us.

No divinely-inspired commandments in those tablets. 
No trace of God or Moses even. 
Only daunting lists and warnings:

Diplopia, ataxia, nausea, dizziness to the point of falling, pharyngitis, tremor, headache, somnolence, rash, insomnia, gum hyperplasia, facial widening, infections, anxiety, suicidal ideations, mania, depression, irritability, aggressiveness, nystagmus, confusion, weight gain, kidney failure, weight loss, hyponatremia, anemia, vision loss, liver damage, diarrhea, death, vomiting, kidney stones, body hair, oligohidrosis, glaucoma, increased seizures, 
am I forgetting some? 

Serpents, vipers. 
Complicit in the plight of Eden. 
The fall from Grace. 
Vexation, strife, 
strangled promises, 
dashed hopes. 
Medicinal. Venomous. 
Deadened everything except the writhing, agony, worry, anguish, fear, affliction, seizures, feeling wasted, that drowning sensation, the notion of slipping, drifting away, 
of going fucking insane, 
of being a victim. 
Domestic violence. 
You and your brain. 
Till death do you part.
In a house full of serpents.
Overstaying their welcome.
Pharmaceutical dependence
Can't live without them?
No offense to actual snakes out there,
Who are far more benevolent than the average, conventional, piece-of-shit, anti-epileptic drug. 

Perhaps i'm uncommonly jaded. 
And a complainer.

A Little Something to Brighten Your Tuesday

Sunday Drive Home (Photo-loaded)

Whitebird Idaho, site of the battle of Whitebird Canyon (Chief Joseph) 1877

On Sunday, i joined a convoy of Thanksgiving Weekend pilgrimage-ers and meandered and weaved our way like a needles through the quilt of Idaho mountains and farmland and countrysides. For us it seemed like a lot of traffic, but it was probably sparse compared to most places. 

I hooked a ride over the internet from a kid i'd never met before. It's chancey; it's a pretty long drive so if you end up with a dud, it could be a miserable 5-6 hours. 

My ride was a scrawny, pale, protestant-meets-punk-looking dude from Star, Idaho which is a rural, conservative farm town not known for it's surfeit of scholars and worldly thinkers. He sported a Yankee ball cap and a rudraksha bead bracelet; I didn't really know what to expect. 

It turns out he's a sociology major looking into a job in disability advocacy. He works at a women's center.(!) He was a fantastic conversationalist. We had great time shooting the shit about everything from politics, family dynamics, psychedelics, music, the Apolcalypse, beer, literature, vans, pets, religion, post-college plans and hunting. 

We were treated to an awesome sunset that seemed to go on and on. Some low-hanging clouds looked close enough if only i could Go-Go-Gadget Gumby my arm out the window and snag a clump of spun sugar right out of the cotton candy-pickin' sky.

 Sorry if it looks like the same photo over and over again. I couldn't decide. Decision making no es mi cosa favorita. Overandout. Love from Idaho.

Jofus

Jofus

Oh, how i missed this boy, my broha. It had been more than a year since i'd seen him. He's been studying in China which seems inconceivably far to me. My brother's an amazing guy. I'm so proud of the stellar young man he's become. The kid is as adept in the wilderness as he is in a gimungous, sprawling metropolis. He's sensitive, emotionally intelligent, yet a total stud-muffin.

I'll never forget one February in '08, days after i'd been dumped on Valentine's via text message by a guy i'd dated for more than a year. I was totally immobilized by the affront to my heart and subsequent derailing of my emotional roller coaster. He was the first man i'd fallen for. I was crushed. sunk. undone. unable to peel myself up, i was glued in tears and shock and sorrow to the shower floor. It was hours, days maybe, i sobbed in a ball pressed against the cold, hard, tiles. I'm a crybaby. It was rough.

My family finally convinced me to go out to dinner. I managed to scoot my ghoulish self, dazed, oozing, scabby, gaping heart wound and all, out the door and into the car with the rest of the clan. 

At the time my little brother was all of 15 or 16. I'm not sure how the topic of the break-up was introduced. I think my dad (step-dad) was conducting a well-intentioned check-in. I told him i felt better, but still pretty turdish. He said, "Well, at least you can write some more bad poetry." 

"Thanks" i murmered, mostly dumbfounded. Before long, it lead into more discussion about my having been dumped. My step-dad commented, "You were too easy." (Which i wasn't; i'd resisted months of daily romantic appeals from a guy i'd been good friends with and attracted to for years.)

Anyhow, i'm not sure if my face betrayed it, but my already fragile spirit was disintegrating on the spot, ready to shatter and fly off like the seeds of a dandelion into some other day and place and time. My brother, in uncharacteristic force said, "Dad, stop talking." 

He came to my rescue. I'll never forget it. It's one of only two times i ever heard him stand up to his father. He was the kind of kid you never had to discipline; one stern look or harsh tone and he was rendered teary-eyed and cowering. He's such a sweetheart. 

***

It was so good to see him. I'll be damned if he didn't snag me up out of a small, internal moment of emotional distress again during this last visit. I'm sure it was a product of my having resisted just about every photo opportunity i'd ever encountered, but my parents were taking pictures of my brother and sister in the kitchen over Thanksgiving break, and never implored me to join them for a snapshot.

On any other day i'd be relieved at the omission, but in the face of the change brought about by our mom and their dad's separation, i was hyper-sensitive. Major transitions tend to breed worst-case-scenario-ing, it seems. As such, i was dreading any rift or division between us siblings. I freaking love them. My parents had put their cameras away when my brother said, "Mom, take one of the three of us." 

Oh, Jofus. Oh my heart. I knew right then, it was all gonna be okay. We have each other. It's kosher. Divorce is a boat-rocker, but we're braving it out together, us brothers and sisters, by holding each other closer.

Mom and me

Naked, Drunk? Hay-Bailer Man

Thanks to my sister for bringing this to my attention. Love to y'all from Idaho. And i'm sorry you might not appreciate this as much as i did. At least it's only 58 seconds.

Kamiak Butte

One thing about playing women's hockey, is apparently, your sexual orientation becomes open to investigation. As we crammed around restaurant tables scooted together to accommodate the lot of us this last weekend, one of the new teammates started quizzing everyone. More than one couple had both members represented on our roster. They're out and it's great. Fortunately these days, even in Ideeho, people my age are pretty tolerant and accepting. Halleluhjah and amen. Long live love and compassion.

I'm so grateful. Every ounce of me rejoices in the trend towards tolerance and justice in this regard. I'm proud of the non-traditional couples out there who have bravely recognized their love for one another despite potential condemnation, ridicule and even physical violence. They are amazing.

Eventually the query had snaked it's way around the table and landed in my lap. I claimed 70% not-straight on account that statistically, identical twins have a 50-70% concordance with sexual preference. My sister realized guys weren't her cup of tea and she's never been happier, more confident and comfortable in her own skin. 

Me? I don't know. I'll admit it. Men and women both have broken my heart. I came out to my dad Thanksgiving '06 (a little gay-vee with our mashed potatoes). He's an awesome, supportive, loving, and fairly-progressive dude. I'm sure he wasn't shocked; we were always tom boys. It wasn't really a big deal, we're so fortunate. He's been great. I've dated guys since then, though, and he half-jokingly urges pick a team!

Most of the time it's a moot point. I'm single and i'm not looking to change that any time soon. I'm way difficult. We'll just keep it at that. 

So, anyhow, i just tag along with my sister and her girlfriend (our roommate). Even as they celebrate their 2 year anniversary on a hike to Kamiak Butte, a little hill looming in the distance from our little town, with a nice loop trail and vistas of the stunning Palouse.

My twin sister, Nif, with Mollie, a dog i've been
walking every day for a few bucks.

[Aside] Mollie got into cockle burs so badly the other day that her tail was velcro-ed to the back of her legs. It took hours to get those suckers out of her generous, fluffy coat. Good thing she's such a sweet and patient girl. 

6 boots and 16 paws hit the trail with gusto.

The beautiful Palouse from Kamiak Butte

I never did succeed in capturing a photo of the whole bunch.

But i did get a pretty good one of the three of em. My family is so cute.

Vandals, Hockey and Lucky Buddha Beer

Idaho Vandals
Wenatchee Hot Autumn Ice Champions
(I'm green helmet, my sister is maroon)

This weekend was a riot. 2 days, 10 ladies (girls/women what have you), one hotel, 6 dogs (Thank you, Travelodge.), 8 hockey games and well, maybe a few jello shots. This picture was taken right before we were awarded the championship trophy. I didn't get a picture of it, i guess, but you'll just have to trust me, since it really matters not.

I'll pitifully admit, though, there have been times over the last few years where ice hockey was one of the few extra-curriculars that did matter to me. Other things may have been higher on my list of priorities, but in terms of what i enjoy most and cared to devote the most energy towards- hockey, definitely.

I'm an addict. I love the speed. When you connect with a teammate it's fluid, whiz, snap, blam, swoosh, ka-ching in rapid succession. Fun meets finesse and intensity. Plus, the sport is sprint interval training in sheep's clothing. Well, bulky pads and helmets, but you know what i mean. Really, the rink is an icy stage for a bunch of electrified meat bags with skates and sticks, chasing a hunk of rubber around, but i'm okay with that. It's a blast. 

The camaraderie and community at our ice rink is first class. We have teachers, cops, doctors, students, kids, moms, engineers, bar tenders and old fogies that play. It's a non-check league, so it's less goony than the hockey you see on TV. It's surprisingly low impact. I know a lot of skaters who can no longer run. My sister, for one, would go crazy if she didn't have hockey during the snow mounds-in-the-bike-lanes season. 

Lucky Buddha beer- 2 hat tricks

I didn't sample any jello shots this tourney (mostly because i don't drink much and also because somebody had the terrible idea of making them with Everclear), but i did indulge in one of these beers i found for $1.89 at a nearby store. I highly recommend this light, tasty, Australian-brewed lager. I hate to endorse non-local purchases, but it's fun, and delicious, and dare-i-say may be worth making the exception if you see it around. 

I'm not saying you're gonna score two hat tricks and a bundle of goals if you drink it, but preliminary evidence suggests that you could. 

It was amazing feeling so good again. My ability to be successful on the ice is so positively correlated with more freedom from seizures and side-effects; it's frustratingly apparent when things are off, which tends to be more often during the winter months. Quick reflexes and  bursts of energy are diminished if not depleted entirely in battling seizures. Life is diminished battling seizures. And they're all quintessential to the game of hockey. 

It was beyond satisfying and enjoyable playing on a line with my sister and slinging the puck into the other team's net like the defense was made of Swiss cheese, time and time again. I loved it. We're competitive, it's silly.

I'm still whispering and tip-toeing, but so far it's the best November i can remember. Thanksgiving can be a nightmare on the seizure front. I'm hitching a ride down to my mom's. It's the first holiday since the separation. We'll see how it goes. If i survive, perhaps i'll take a minute to recall some of the holiday disasters my family's endured. Does your family have those? I reckon we all probably do. 

I'm grateful for all of you here and for all you share and for this community of caring and learning and resonance. I don't deserve such a platform or any sort of readership, but i sure as hell appreciate it. Have a safe and lovely week. Whether you're celebrating Turkey day or not, i sure hope you find yourself well-fed and surrounded by friends and family, and maybe a glass of wine or a Lucky Buddha beer. Also, if you find yourself in the unfortunate situation of being surrounded by jello shots, i sure hope, Dear Lord, they are not made with Everclear. 

Cheers! 

Bela Fleck and Brandi Carlile for your listening pleasure. We're headed for a weekend of hockey in Wenatchee. It's an all-women's tournament we hele to every year. I'm still in denial about winter, but i do love me some hockey.  Have a great weekend, all y'alls. Be safe out there.

Pirates?

Image credit: halloweenforum.com

My bloggage may depict a fairly emotionally tumultuous person. Believe it or not, though, i'm pretty mellow, even-keeled, que sera, sera as a sea lion. I don't get riled very often, but i'm tired. Tired of feeling adrift. I'm prolly far enough away from shore to be in the weathered, scurvied, scallywagged stages of it. I'm tired of clinging perilously in the rigging, swinging ropes, perched high in the crows nest waiting, straining for land. Tired of hoping. I'm beaten. Heaving along with the whims and pitches of the sea. Wrecked. Broken. Floating, punchily singing and salty. Wind-whipped. Exposed. Churlish, swords and fists, we bark and parrot, causing a ruckus. Vulgur. Don't give a fuck. Unmoored and boorish. Limping, and leaky and our sails are ripped. Seasick of drifting. Enough. Ready to be steady on two feet. Firm in boots without tossing awake and asleep. Endless. Forever deep. Greens and blacks and blues. Vast and separate and empty. Enough. 

I'm tired of being tough.