Alaska, Day 4 -- ghosts of Kennicott

20 August 2017

Sunday

A white 14-passenger van trundles along from McCarthy, navigating washed-out road with thankless aplomb. Grandmother sits up front; the puppy occupies the doorwell. I sit somewhere in the middle. Tall banks of dirt rise and fall alongside us, gnarled with ferns and evergreen roots. I eavesdrop on my fellow passengers, who talk about where they came from, where they're going, what their absent friends are up to, who's seen which episode of Game of Thrones last.

We are headed into Kennicott, a town abandoned when its mines became unprofitable in 1938. Named for the Kennecott glacier to the west--some accident of history to blame for the degenerate vowel--this town has spent more time abandoned than inhabited, it would seem. Though the Forest Service has been restoring some of its old buildings, and putting on tours for tourists (like us), the spirit of this place is still one of quiet and strangely dignified decay.

To the left, the debris fields of the Kennecott glacier. To the right, the ghost town of Kennicott. Grandmother, in her bright orange coat, looks out at the mountains.

We meander through the town, browsing local shops and scattered buildings, restored to miniature museums. Grandmother and I watch a video about the ore processing plant we are preparing to tour while Dad and Margy keep the puppy occupied outside. We wander through the general store, flipping through blown-up copies of vintage photographs and random surviving forms and manifests. I learn that when this town was first established, the Kennecott glacier loomed over it, squeezing its development into one claustrophobic corridor. Decades of ice melt is what opened up its west flank.

Margy explains something, via gesture, to Grandmother as we look out over the mountains from the balcony/deck behind a coffee shop.

Kennicott's west flank. In between us and a ridge of snow-capped mountains lies a vast gray expanse of dirt and stone, layered atop a hidden, surreal landscape of glacial ice.

Someday I hope to hike the glacier, but today we've come to tour the town. And the centerpiece of the tour is the ore processing plant. (The mines themselves are an arduous, full-day hike away, and long-since closed, besides.) Margy stays behind with the puppy while Dad and Grandmother and I join our scheduled tour. It is a bit of a hike to the start of the tour--not for me, necessarily, but certainly for Grandmother (working with half a lung less than the rest of us), and an elderly gentleman with a bad leg. Dad slows and unassumingly takes up the rear, ready to aid in case of a fall. I stay toward the back also, scanning the gravel for chaff left by the mines: scattered stones streaked with iridescent shades of green, and blue--colored thus by copper-rich minerals, malachite and azurite. I pocket one or two particularly pretty stones, each about the size of my thumbnail. I feel a strong, barely-conscious urge to wash my hands after considering what heavy metals and other elements comprise the dust that I've been sifting through.

The crumbling, red, 14-storey ore processing plant looms over Kennicott. Most Kennicott iconography depicts this building, from some angle or another.

View of the ore processing facility from the top, where the tour enters.

Slightly blurry selfie of me in one of the hard hats provided by the tour, layered over my Army surplus jeep cap. I am not sure how to categorize the expression on my face.

Our tour guide is younger than I am. Though he is engaging to listen to, I drift in and out of paying attention. I am more focused on snapping photos of everything I can, from every angle. I use up a whole battery and have to switch to my final spare. Most of the photos turn out to be terrible--dark, blurry, indistinct, whatever. But I enjoy taking them. I enjoy hanging back from the group; I enjoy the excuse to stand in certain places, walk off a ways, look under or go on the other side of things. One other person in the group seems equally preoccupied in taking photos... but awkwardly with an iPad, for some reason. The gentleman with a bad leg is also an armchair scholar, and the tour, more often than not, is less a lecture and more a conversation between the guide and him.

I hold two samples of copper ore--on the left, the colorful, shiny, 80% pure ore they found in the area mines; on the right, a dull, adulterated sample of what your typical copper mine produces.

A workbench area inside the processing plant. A row of empty window-frames lets in summer sunlight.

It seems like the type of place that ghosts hang around in. I can't decide if the ghosts would be angry or just... tired. Tired and homesick and cold.

We part ways with the tour after exiting the processing plant, 14-storeys down ad hoc ladders and stairs constructed by afterthought. The tour continues further into town, but Grandmother and Dad hurry back to catch the five o'clock van back into McCarthy, and I follow.

I think a meal commenced after this. A conversation long in coming. A series of small but significant revelations. Pregnant silences. A truce.

Some time later that evening, after the sun should have set (but didn't), I wander off to try my hand at painting en plein air. I sit on a large rock by McCarthy creek and look out toward a mountain and... come up with something.

I refill my water pen in the creek as needed, and try to get used to how watercolors behave in the saturated Alaskan air--as opposed to the thirsty air of Colorado. At some point I accidentally flip the painting into the dirt... but kind of like the texture that the accidental grit affords it. I paint until I lose my light, and I paint some more after that, until I realize that the light has faded to where continuing to paint will make it worse, not better.

Me, sitting on a rock in my purple gore-tex, reenacting my painting the next morning now that I have Dad handy to take photos for me.

My final watercolor piece, resting against the rock I was sitting on, along with my watercolor tray and the watercolor pen I was using.

Me holding up my watercolor piece the next day, lining it up with the landscape that I'd painted.

(Later I show my painting to N., and he identifies it as Sourdough peak. I'm proud of myself, that I was able to paint something he recognized just by looking. After all, when it comes to watercolors, I'm still pretty much making it up as I go along.)

The light is gone when I slip back into Ma Johnson's, and Grandmother is asleep. I move quietly to avoid disturbing her, resting my painting on the beside table, putting my stuff away, and gathering supplies for a shower without turning on the light. Only after I've thoroughly warmed my hands and feet and core with hot water am I able to slide into bed and drift to sleep.

Alaska, Day 3 -- in media McCarthy

19 August 2017
Saturday

Today, I decide not to take any medicine. This allows me to drink a little alcohol--at lunch, a very dry English cider with a skull on the bottle; at dinner, a hopped cider from the Square Mile Cider Company (my favorite cider of all time). I spend the day in languorous trance: limbs heavy, thoughts muddled, movement slow. It is not uncomfortable, but it is not exactly pleasant, either. It is how I used to move through the world... before I found a medication that worked. Strange how "normal" is not, in fact, a constant after all.

There is nothing in particular planned today. Margy and I start the morning with chai from the Potato. It is pleasant: complex, and not too sweet. We wander up and down the muddy roads. We breathe McCarthy in. I make sure not to go anywhere without my camera swinging from my shoulder.

Grandmother stands next to a gate wrought from artifacts and junk. It makes no architectural sense, and I enjoy it very much.

Close up of copper ore held in place by rusty screws. It is part of the gate. Something about it makes me feel as though magic might be real.

Close up of another part of the gate. It is the metal skeleton of an antique child's bike, suspended in decaying metal circle.

A red building. "McCarthy General Store" in spindly black font. A cow skull, for some reason. The store has a sign on the door that simply says, "shut." I don't think this place has been used in quite some time.

Rusted remains of a typewriter or cash register, slimy with moss and rain. Antique junk like this is everywhere you look in this little town, rotting away wherever it was left.

Red cabin behind some kind of... wall?... constructed from (what I think are) angular fuel cans.

Mountain looms over antique yellow building.

At some point we rendezvous with N., who takes us on a tour of the old hardware store building. Upstairs, the rooms-cum-offices are littered with reminders of school trips and internships and art projects that once took place there. I find a wall of haiku.  

Moisture-warped poster containing several ink sketches of flowers and a haphazard smattering of three-line poems--English haiku/senryuu.

I absorb all of them. I'm in a pensive sort of mood. They aren't the best poems I've ever read, nor are they particularly skillful examples of haiku/senryuu. Nevertheless, they make a connection. I pick my three favorite and snap closer pictures of them to remember them later. I don't know the authors' names, or I would attribute them correctly... but, nevertheless, here they are:

-----

I see the fly land

And swat it with ease and grace

He did nothing wrong

-----

The ice looked hollow

standing on infinity

the whole earth melting

-----

melting ice

sculpts

its own body

 -----

Later, we go on a walk. The puppy cannot do without one--and neither can I. We walk further down the creek we'd started exploring yesterday. We find moose tracks and bear tracks. I am looking closely at the multicolored stones that line the creekbed, and I lag behind Margy and Dog and Dad.

Bear tracks. Puppy paw for size reference. They are not particularly large, for bear tracks... which is probably for the best...

Stones of McCarthy creek.

I am carrying, in my pocket, a piece of volcanic rock. I took it from a parking lot on the Big Island of Hawai'i (a parking lot, mind you, and NOT from Volcano National Park, which would have been illegal--not to mention disrespectful). It burns in my pocket with the wrath and fire that wrought it, half an ocean away.

They say taking volcanic rock from the islands is bad luck. They say Pele will curse anyone who carries pieces of her away. Tourists mail thousands of pounds of rock and sand back to the islands every year to try and break the curses they didn't believe in until, well, they did. Some say a disgruntled park ranger started the rumor--others that it is considered disrespectful by the native culture. I find it hard to believe that no minerals would find their way off the islands in export, blessed in transit by the priests of capitalism... and can't see how my acquisition would differ in principle. But it doesn't matter. What matters is I carry the stone in my pocket, and it remembers nothing but fire.

My eye catches on a smooth gray stone, streaked white with quartz. I am compelled to pick it up. Basalt, I think: forged in fire, just like the chunk of scoria I am carrying. But this stone remembers more than that. It remembers glacial ice, and river-water, and rain, and snow. It is calm. It soothes.

An oval impression remains in the soil I plucked it from. I press the piece of Hawaiian scoria into it--a perfect fit. I invite Pele to make her acquaintance with whatever Athabaskan spirits might still dwell here, appealing to pantheons that do not exist to release myself from curses I don't believe in.

I pocket the new stone. A fair trade.

The day winds down slowly, twilight lingering long after night would have fallen, were we further south. I wind down slowly with it, and fade to sleep as darkness falls.

Alaska, Day 2 -- onward to McCarthy

18 August 2017
Friday

I remember little of yesterday--Thursday--having taken no medicine, and spent the day in a somnolent haze, napping on planes and while idling at gates. I brought several weeks' of Sunday newspapers that I hadn't read yet, digesting them a section at a time, scattering them in recycling bins throughout DEN, SEA, ANC. I met up with Grandmother in Seattle, me with my flip phone and outdated papers--her with an iPad, a smartphone, tethered to outlets by charging cords. I met a darling puppy and toured my dad's new house.

Today, though, is Friday, and we are headed to McCarthy. We get going a little after noon, having had a leisurely breakfast (well, from my perspective; Dad would probably call it "time-wasting") and running several errands first. I snack on random things from Carr's as we quickly plunge into wet and isolated woods, leaving civilization behind, making our way east. Oh, there are scraps of it left here and there as we drive--we stop at these to potty, to stretch our legs, to buy snacks and drinks and slices of pie. I buy cards at a gas station of surprisingly high quality, filled with local art and gems and fancy foods mixed in with more typical sugar, grease, and chintzy tourist fare.

At another stop, I sip low-quality green tea and wander around a room filled with taxidermied creatures--some posed as if still breathing; some stretched out across the wall as rugs; most reduced to heads, staring at nothing with plastic eyes. There is a white wolf on the wall, larger than both bears that hang outstretched across from it. Its paws dwarf theirs; its face is frozen in forever-snarl. I imagine that this anger stems from disappointment in itself: for being caught and killed by hairless apes without the decency to challenge, first, with eye contact.

The white wolf's paw, next to mine, for reference.

The landscape fascinates for the entire ride. It takes over seven hours, but doesn't feel like that much at all. Blunt, oft anemic trees stud the landscape, black and thin and needling. Long, cold lakes fill holes that glaciers scraped into the earth twelve thousand years ago. Mountains stand sentry, swathed in mist and rain. At some point, we come across a crest of purple cliffs, and decide their color must be due to some sort of copper-containing minerals therein. Dad calls them "pome-granite" because of course he does.

Much of the conversation over the last few miles concerns how the road is not nearly as bad this time as it was the last time Dad and Margy went this way. Grandmother closes her eyes as we cross a railroad bridge over a deep canyon. At our next stop, I scurry back to take a selfie there, for some reason.

Me in my army surplus hat and red-wool poncho proving that I'm not afraid of heights.

(And here is a video version of the selfie, haha.)

At the end of the road to McCarthy, Dad pays for parking and we haul our things over the footbridge toward town: the only access allowed to those who are not local. A friend of Dad and Margy (let's call him N.) swings by with a jury-rigged truck to help carry our things--and Grandmother--into town. Dad, Margy, the puppy and I decide to walk the last few miles, trailing along behind them.

Dad, Margy, and the puppy walking across the footbridge into McCarthy.

We set up our stay in Ma Johnson's hotel, a charming little place with bathrooms down the hall, robes and slippers and tiny slips of lavender soap sitting on the beds in offering. Dad and Grandmother and Margy and N. go to eat at the Potato, and though I join them at first, I get antsy after a while and leave to wander around and snap photos and daydream and think.

At some point, I come across a drunk local trying to pick a fight with tourists, shouting obscenities and homophobic comments at strangers heretofore unknown to him. They speedwalk up and down the street, trying to avoid him. There are three of them, and one of him, but that doesn't seem to faze him at all. I wonder what his addled wits saw that made him hate these unassuming men so wholly and uncontrollably. They seem nice enough to me. His aggression escalates, disproportionate to his ability to follow through. He makes a sharp, wet sound when thrown to the ground, stymied before he can land a single blow.

Strangely, he seems to let go of his vendetta after this. You can't go in there, his friends tell him, standing between him and the bar the tourists ducked into. He apologizes, tries to explain himself. He is very drunk. It makes as much sense as one would expect. Go home, they tell him. Go home. He tucks in his tail and turns around, walking past me, muddy and muttering. It's times like these I'm glad I tend to be mostly invisible to passersby.

Later, Dad, Margy, the puppy, and I go for a walk. We try to take a bridge out of town and further into the woods, but we startle a black bear as soon as we step beyond the trees. I suppose it wouldn't be an Alaska trip without some sort of bear sighting. It is small and cagey and flees as soon as we start shouting at it, but we still turn around and head back over the bridge. We walk up and down the other side of the creek, instead.

The flush of water carries the cold down from the icy mountaintops and glacial fields to the north and pulls it quietly through the town. The mud here is a simple and unassuming fact, like the trees, or the sky.

It is cold and gray and brown and I am certainly enjoying myself.

the poem that sold me the book

by Chandonnet, Ann. "Splitting Wood." Northward Journal: A Quarterly of Northern Arts, Alaskan Art & Writing, Number 21/22, August 1981, 55.

--

Splitting Wood

Anger's impossible
after splitting wood.
Bile flows out along the human trunk,
the arms, and ax handle
into the cleavages of birch and spruce,
into the neatly stacked cords
and the pleasing litter of chips
upon the snow.

The more lengths split,
the more I become whole:
joints cease their clatter;
rifts slide shut.

Lacking shoulders,
I turn scientific,
teasing the lengths
atop the block
until they come level.
Then my little force
runs straight down the grain.

The bore holes of twigs
are clean as laser burns.
Swelling branches spawn massive roils,
marbled end papers.
Force is balked by these conjunctions.
Wood splits just to them
and no further...
like roads deadending
at skewed headlands.

On the pile reclines a straight young arm;
beneath, a knotty fist of aged wood,
liver spots of decay staining its pale grain.
Some knotfree layers separate
clean as onion rings,
revealing breast-sleek silk.

Few things concentrate and empty the body so,
both engage and free.
Blows echo from the trees around;
a scrap of inner bark
glows pink as a conch.

ANN CHANDONNET

multo mane

vox Turturis audita est
et Solem et Testudinem
sensim experrectus sunt
autem hoc caelum
calidissimum
non mutat, et
non mutaverit

--

Early Morning

the voice of the Turtledove is heard
and both the Sun and the Tortoise
gently awaken
but this atmosphere
so incredibly
warm
does not move, and
will not move

Celsius

Boughs bend under the weight
of spring-time snow,
hanging wetly over the sidewalk
in my way.
By afternoon, the snow melts
into a contracted rain.
The trees unburden themselves.
As I walk, my heart
seethes with ambition;
my stomach churns impossibilities.
Hours move silent as the sky
and I,
in this white twilight,
observe the icy buds and blooms
in watery shades of pink, and green,
and try to think of a word
that means "Spring," but isn't,
and try to compose a self
verdant, vernal, viridescent:
born between seasons, between stories,
uniting barren Winter with fecund Spring
in branches, hanging over the sidewalk,
in my way,
heavy with blossoms
and snow.

just a silly thing I spent way too long on

A post from someone's tumblr has been circulating on facebook--and, while it's a cute idea in theory, I think it kinda failed in the execution. Source is here: http://phony-time-traveler.tumblr.com/post/158270493442/jk-rowling-suddenly-light-started-shining (quoted below)

• JK Rowling: Suddenly, light started shining through the window!
• J.R.R. Tolkien: The window, which hanged on the wall, softly letting its curtains dance around the room, suddenly brought a bright light into the house.
• Douglass Adams: Quite unexpectedly, light shined through the window in the room, which was less surprising when you think about the fact that's what windows are for.
• Lemony Snicket: Light shined through the window abruptly. abruptly, usually means unexpected, or sudden. For instance, if your mother picked you up from school after telling you twice about doing that, it would not be abruptly. However, if someone were to tell you your house burned down and your parents were dead without telling you to sit down first, it would very much be called, abruptly.

My primary issue with the above is the preponderance of grammatical errors and poor diction--while the four authors had divergent styles, they all had a very good grasp of grammar and mechanics. To me the most egregious error (ascribed to Tolkien) is confusing the words "hung" and "hanged"...

So, rather than simply complaining, I decided to give it a go myself. Here's my stab at more or less the same thing...

--

JK Rowling: Then, through the window, came a sudden blaze of light.

JRR Tolkien: There came a light through the window: it was unexpected, a torrent of ethereal gold pouring through the glass, as though the warmth of fair Lothlorien had followed them hither, spreading open its gilded arms to beckon them away from their rising despair.

Douglas Adams: Suddenly, light shone through the window--or, rather, it would have done, had the window survived the series of shockwaves proceeding said shining light. Although some might argue that photons passing through a pile of shattered window fragments is more or less the same thing, and that is ultimately what happened.

Lemony Snicket: Light poured through the window suddenly. Or, to be precise, this seemed sudden to the Baudelaires. For something to seem sudden, it would have to surprise you, or to have been somehow unexpected, meaning you did not see signs warning that it was coming. A flash of lightning would seem sudden to most people, but might be completely expected by a researcher conducting an electrical experiment. You may think that your friend's decision to move to France and study the mating habits of the Greater Scaup was sudden--but to your friend it was the natural conclusion of many hours spent considering the possibility. When my beloved Beatrice broke off our engagement, to me it seemed sudden. But the time she spent writing a two-hundred-page treatise on why we should not marry would suggest that this decision was, from her perspective, anything but sudden.

keepsake

today i watched two
little crabs
no bigger than a grain of sand
scuttle white and camouflaged
across my palm
only their furtive sideways skittering
setting them apart
from fragments of coral and
silicon crumbs
(i only saw their tiny
legs once i had leaned in
close enough).
today i filled my hands
with little shells
black and white and brown and
seemingly the same
until
each resident creature gathered
up the courage to come out
exploring the strange new surface
of my skin
revealing snail or
hermit crab.
and then i told my dad that i
would write a poem about it.
that i would capture these
littoral microcosms
these days rolling beneath
emphatic surf--
seeking--seeming--seeing--
liquid earth flying into roiling sea
twilit walks up an overgrown hill
wind tugging at branches heavy
with chameleons
bright hibiscus blooms
color-classified
by bright nineteen-month-old.
i told him i would write
about the feeling
of salt in my hair
of the entire sea stretched out
beneath me
of summery sunny sweetness
distilled into a morning
bowl of fruit
of looking up at stars
spattered across improbable skies
even the shyest among them
bright enough to see.
i told him i would prove
(despite
fidgeting silences
hot miles crossed on blistered feet
staggering
sleep-drunk
mornings)
that i could write a poem
about two white crabs so small
i almost didn't see them.
i suppose
i always meant
to prove that
darkness isn't the only thing
i know how to write about.

My ACA story

To whom it may concern:

My name is Jam, and it is very likely that Obamacare saved my life.

The initial provisions of the Affordable Care Act began to kick in right when I otherwise would have aged out of my dad's insurance. The timing was perfect: my dad started to pay a small premium month to keep me covered until I turned 26, and I wasn't left with a gap in coverage. If the ACA hadn't come into play, my original plan was to go without insurance—after all, I was a young, reasonably healthy college student (or so I thought), and I couldn't afford to pay monthly premiums anyway. The healthcare available through my university, as far as I knew, only covered catastrophic care and visits to the on-campus doctors and nurses, and not referrals to specialists or extended testing.

Cut to my senior year. I've been struggling since high school with being constantly tired and headachey, but I attribute this to lifestyle choices and poor sleep, and power through it. During my senior year, however, things start to go downhill. I begin rapidly losing weight. I can't eat solid food without terrible pain. I am constantly hungry, but full after eating one bite. My throat is bathed in acid 24/7. I suffer like this for almost a year, subsisting entirely on Ensure shakes and barely pulling through some of my classes. It is a gastroenterologist, paid for by my dad's insurance, who ends up diagnosing me with celiac disease. There's no way to know how long I would have persevered with antacids and protein shakes and no diagnosis if I didn't have medical coverage. I shudder to think that undiagnosed celiac disease can lead to severe anemia, permanent loss of digestive function, and even intestinal cancers.

Fast forward to winter, 2014. By this point I've had to quit at least one job due to extreme fatigue and depression. I've powered through several temp jobs and am trying my best to keep the one I have right now. I can't keep up with my 40-hour-per-week schedule, however. All I can think about, all day, is sleeping. I try to get on some medication for depression, but the side effect of sedation pushes me over the edge. I come within a hair's breadth of attempting suicide. I call a crisis hotline for help. The police take me to the emergency room, and I end up in a psychiatric hospital for six days. My memory is hazy until I detox from the benzodiazepines, but I remember one guy stabbing himself in the leg with a dull pencil when they tried to discharge him. He knew he wasn't ready to go. The pencil went at least an inch and half into the muscle of his thigh. His insurance wouldn't pay for more than 72 hours. I was still on my dad's insurance, and all six of my days were covered, minus a co-pay that my parents could split between the two of them.

After I turn 26 and age out of my dad's insurance, I get on the Medicaid Buy-In for Working Adults with Disabilities in my state—which, if I understand correctly, could only be created via funding from the ACA. My fatigue is increasing, week after week. I cut my working hours to 32 per week. I have to quit that job and seek out another one that will let me work 20 hours a week. I have to cut those hours to 15. To 10. I have to quit working completely. I drop into regular Medicaid, which I qualify for only due to the ACA expansion. It's January 2016. I'm having trouble getting to the grocery store to buy food. I'm having trouble cooking my own gluten-free meals. I can barely do laundry or sweep my own floor. I go to the emergency room because I'm so tired it feels like I'm dying. I'm sleeping up to 18 hours a day, and for the other 6 I wish I were sleeping. They find nothing immediately life-threatening, and counsel me to follow up with my primary care.

I'm able to schedule a sleep study with National Jewish Health, paid for with Medicaid. By the time I go to the sleep study, I've had to move back in with my mom because I can't afford rent. I'm working again, but only 10 hours per week, and even then sometimes I have to call in sick. I'm incredibly fortunate to be working for an organization that lets me set my own schedule, even at the last minute.

When the sleep study results come back, I get an actual diagnosis: idiopathic hypersomnia. I start to read about it and it explains my entire life from when I was about 16 years old. It's a very mysterious and rare condition, but is believed to be a cousin to narcolepsy. Having this condition is like having tranquilizers constantly in your blood. Waking up in the morning is like fighting through a bottle of Xanax to keep your eyes open.

The good news: there's medication for that--paid for with Medicaid. It takes a few months to find a good one and adjust the dose, but I go from maybe 10 hours of work a week on a good week to a solid 15 to 20 every week. I can feed myself again, do some cleaning, run errands on my days off. I still can't work a 40 hour workweek—the medication is not a perfect cure-all—but I have hope again. The fog of depression that's been following me around since high school lifts. I don't want to die in the mornings anymore. I don't constantly think about giving up. I no longer obsess about cutting myself, burning myself, hurting myself just enough to release adrenaline, to keep me feeling more awake—even just 15 more minutes. Taking my medication feels like magic. So this is what it's like to get through a day without desperately needing a nap. So this is what it's like to actually want to get up and do something. So this is what it's like to feel awake.

As the current administration begins the process of dismantling the ACA, I've been researching my options. My current income from working part time and picking up odd jobs, in a good month, is around $1000. The out-of-pocket costs of my current medication, at my current dose, would be about $300 to $600 dollars per month. And that's not including necessary office visits to talk about side effects, adjust dosages, and check in to obtain more prescriptions. Without medication, I would completely lose my ability to work, and would have to rely on the kindness of friends and family in order to stay alive—or on government disability payments, although that's not looking good, since they already denied me the last time I deteriorated. I know that my parents won't let me starve or live out on the streets, but it's more than just being able to work. What kind of quality of life is it to sleep for 18 hours a day and stumble around in a stupor for the rest of it? How could I possibly keep my depression from coming back? Without access to regular therapy, what hope would I have to keep myself from falling back into the type of suicidal pit that almost claimed my life two years ago?

At this point in time I have five pre-existing conditions: autism spectrum disorder, celiac disease, recurrent depression (severe), idiopathic hypersomnia, and polycystic ovary syndrome. Without the provisions of the ACA that protect people like me with pre-existing conditions, where am I going to get coverage? What kind of medications, therapies, doctor's visits, am I going to be able to afford on $1000 a month? If I'm shunted into a state-run “high risk pool,” what kind of premiums and co-pays will I be able to afford?

Not to mention, the “idiopathic” part of idiopathic hypersomnia means, “without known cause.” There is a biological reason that I have the symptoms that I have, even if it's unknown now. Cutting off my healthcare at the root means I'll never have a chance to figure out that ultimate, original, causal diagnosis, which for all I know might even have a cure.

All I want is to have a reasonable quality of life. I want to work for decent hours and decent wages. I want to take pride in my occupation and in my education. I want to go out with friends and family and enjoy their company. I want to have the energy for my art, for my writing, for long-distance cycling, for camping, for practicing new languages, for learning new things. Without medication and therapy—without healthcare, I have very little to look forward to, and very much to dread.

I hope that my story helps shed light on how important the ACA has been to people. I believe that affordable, accessible healthcare is a human right, and should be given to all citizens of our nation.

Thank you for your time.

Senryuu

Bits of old brown paper crack
Under my fingers--memories splintered
On a blue fitted sheet