25 January 2017

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.

04 January 2017

Senryuu

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

22 April 2016

drift

and i was picking pieces of myself
off the sidewalk
because there was no one there
to do it for me or to watch,
or to listen to the gulls screaming
carrion cries fighting over what bits of me i
missed:
a thumbnail here, or a
knucklebone bleached white
since morning, or a
hair, a tooth, a stone.
as the day frothed its last
against the shore, beating itself red
against the stalwart waves,
the impotent assemblage
groaned and cracked
and took up her place,
breathed a sodden, brackish breath:
asking where had the time gone,
and could we get it back,
and would it ever be possible
to sleep
without falling apart
in the meantime?

06 April 2016

and who shall follow after?

there's a place for the women like us
somewhere by the red rocks and the sea
where the breeze tangs of iron and salt
and the waves move more slowly in
the mornings.

there's a place set aside for the people like us
forged half from truth and half from fiction,
braced against the cliff where the seabirds nest
in great exposed stone catacombs ripe with
lichen and ossifying urea.

i stand with my toes hanging off the edge
where solid ground gives way to pure horizon,
waiting for what i know only in the unknown:
fathom only in the faceless forms of mythic artifact.

i will hear my calling once i have moved
beyond befores and afters, beyond the sweet
and terrifying certainty of now, or of then, or then.
when i am myself subsumed into the uncouth wind,
stripped of physic consciousness, borne upon
the biting, crafty wind,

only when i reach this formidable Beyond,
our febrile Eden will begin to grow
within what's left of me.
our ferocious, indeterminate Eden--
glutted on blood and lymph and
lachrymal distillations--
will reach Before every before,
and After each and every after,
and rescue us from ourselves
and from each other.

i stand with my toes hanging off the edge
of a cliff ever dropping clean and quick
into the sea. i take each step back, and i realize
that i am content to wait
for inspiration. i realize
that i am content to lay myself
before the reddening sun, the composite moon.

someday i will sing your song
to the stones and the waves.
today i am content to listen
as you sing to me.

08 March 2016

sui, sibi, se, se

sometimes i wonder what happened to her.
she always seemed so small
the corners of her mouth drawn down
brows forward, furrowed,
eyes ever wet with the myriad tears
she would never learn to shed.
i remember how she used to take two
corners of the sky, pull down and spin and
wrap it around herself like a blanket,
a shawl of moon and stars to breathe
and hide in.
i remember how
she used to be part of everything, and
everything used to be a part of her.
and when she folded in on herself
she disappeared, collapsed
into a singularity
of darkness and light,
of music and silence,
of crippling faceless fear and
ferocious unstoppable hope and--
her gaze, her smile, was the event horizon
beyond which no soul could ever hope
to escape.
i remember when i found myself in her orbit:
a speck of dust tumbling headlong
around the body of a star--
but then she smiled, and looked down
at the ground, and in the darkness
all I could see
was the fitful glow of a firefly
clinging to the palm of my hand.
sometimes i wonder if the wind finally
tore her apart, scattered the pieces
like ashes from the burnt-out aftermath
of arson--or if the sea finally
came, sought her where she slept,
swallowed her wholly and quietly and
brought her back to the deepest place
where the water crushed down comfortingly
against her poor, wounded skin,
always full to bursting
with images and ideas and insight and
everything she couldn't contain
and everything that couldn't contain her.
i wonder if she is buried in the earth somewhere
or if she still wanders between the trees
of some forgotten forest,
her fingers understanding the texture
of each tree, each flower, each sunbeam,
each thought.
i wonder if it is even possible for her to die
and if so, what that might look like
and if the world itself would still exist
once she had departed from it.
mostly i wonder where she might have gone
and if she might consider
coming back
to be with me again.

17 February 2016

Haiku or smth idk

世界の名
意識入り箇所
この眉間

Sekai no na
Ishiki iri kasho
Kono miken

The name of the world
Acquires its consciousness
Right between these eyes

16 January 2016

Nineteen Sixty Five

Blushing light settles like gauze upon
the worn-smooth floor...
hangs suspended, condensed,
in the soft and foreign air:
many-winged insects
stretched across a raftered sky.
Here sings everything with nothing to lose:
here sings nothing, floorboards and shoes and
learning how to float is never easy
rounded calves picking up
sharp heels,
light caught, felt, held ransom
in necklaces and
rhinestones and
fingernail polish and
striking green eyes.
Youth is no object.
Time savored here is free--
feral--feckless--fresh--
fierce in the lingering twilight
pure and cynical and absolutely
Breathless.
This world belongs to her.
And whether these weary walls
realize it or not,
whether these intricately carved and courted people
realize it or not,
the fight has already been won.
The Swan spreads her wings.