Sunday, November 13, 2011

*transcripts from a voicemail*

This is why, and this is how, I will conquer what lies ahead of me. I listened to a voicemail from a friend and wrote down the words, because they represent the love and support that have filled my life in the past week. This entry will be my goto when I'm experiencing doubt, because the words below challenged every ounce of fear and despair I was feeling. Yes, my survival rests in discovering a donor match. It also, and perhaps more importantly, rests in realizing the depth of love and support that exists in those who have graced my life.

"Hey Mo. It's me again. It's 8 oclock. And umm, it's your friendly neighborhood stalker (chuckle.) And I'm not calling to be a stalker, I'm calling-sorry there's a guy dragging a muffler in front of me. I'm calling because I'm on my way to pick up ____, for ____ , and I just wanted to leave you another message. Because I think I understand maybe what your message said because your facebook status said that you're officially on the kidney registry. And it just, um, ahh, you know...I think people were trying to be lighthearted on your page, but like I didn't take it lighthearted. You know what I mean? Like it makes me want to hug you. Um, and I know that it probably feels, it's got to, um, feel kind of real to you. And I know that you spend a lot of time, um, you know what I mean, I don't want to say pretending you're not sick, because that's not what I mean. But like you're a busy girl, and you're well loved, and you have a lot of people in your life....and so when all that's going on, it's a distraction I think...and I mean that with the most love. But anyways, maybe hearing that made it a lot more real than it's ever felt.

And so my heart goes out to you. As soon as I read that post it did. I like tried to post something, but like, there weren't the right words. Cause the words were just that I want to hug you. And I love you. And we're all going to get through this together. Um, and I hope you know that.

And I know that you know that I care about you and have your back and you know that I love you. But I think the reason I've been pretty vocal about it, since the last time I saw you,
is because it's a big difference, right? It's a big difference to know that sometimes, somebody is thinking about you and just wants to give you a big hug, and then telling them that. Or I mean you obviously know that I love you, but for me to tell you that is very different. And I think this is a time in which you need support and you need to know all the people who have your back.

And so I just wanted to make sure it's loud and clear that I have your back. Okay? I'm in it to win it. We're gonna get through this."

Sunday, November 6, 2011

goodwill

i only wash my hair twice a week
because fistfulls of curl are twisted reminders that clog the drain,
and clog my faith.

last week, i may have lost my membership to this pale Irish skin
when i couldn't pay the co-pay.

"it's just twenty dollars," said the lady in the pretty white sweater.
but angel, when you've been to the doctor three times a week
and you miss work to see the doctor,
that means you're out sixty dollars,
plus every hour of sick time that you don't actually have because you're in the hole because they don't have enough sick time for a girl whose kidney is failing.

plus it costs four dollars for the first hour to park.
but this really isn't about money.

it's about my body.

i want to shout on the footsteps of every insurance company,
every drug company,
every emergency room trying to cash in on me.
"these freckles are mine,
this port-whine birthmark is mine,
these blue eyes are mine,
these skin cancers are mine,
this failing kidney is mine.
how dare you profit off what is not yours.
and since i have the floor,
how is it that we are in the 21st century and treating pain with poison?
percocet, percodan, darvocet, vicodin, codeine
i've got an addict's gold mine in my medicine cabinet,
stockpiled and pretty,
because my pain is mine."

i do not want to donate to this disaster,
and yet i need it to survive.

damn my mother for being a nurse who practiced medicine like it was an art.
she held the hands of her patients.
"goodwill," she said.

mama, i wish i could stop at the goodwill,
and donate all these bags of clothes that don't fit anymore
for one kidney.
just one.

it's time to clean the drain.

Thursday, June 2, 2011

The Chance

I can't promise you trips to Brazil
And I can't fill your days, fill them up with gold.
But I'll hold you.
I'll hold you
closer than she ever will.

I can't guarantee smooth roads ahead
And I can't memorize what the prophets have said.
But I'll hold you.
I'll hold you
closer than she ever will.

So give me the chance to dance one more time with you
and dance again with me.

I can't pick you up in a fancy car
And I can't offer you rubies from afar.
But I'll hold you.
I'll hold you
closer than she ever will.

I can't keep what is not mine
But I can't give up hope, baby not this time.
So I'll hold you.
I'll hold you
closer than she ever will.

So give me the chance to dance one more time with you
and dance again with me.

If you miss me
Whisper my name
Dear, I'll come running
My love for you is all I have to claim.

So give me the chance to dance one more time with you
and dance again with me.

Monday, April 25, 2011

*music*

last august, i added a drummer and a bassist. this past january, i added a pedal steel player. three weeks ago, i added an accordionist AND a violinist. i went from being a one-gal band for five years to working with five other musicians in less than a year. i've worked really hard at understanding this transition and accepting the shifts and shapes my songs have taken with each new collaboration. last week, for the first time ever, i felt chills go through me during the build of a song. the sound of the violin aching, the accordion pumping, the bass pulsing, and the drums building, topped by the harmonies of three female voices...it stirred me to tears. i can't believe i have five talented musicians beside me, sharing a musical space with me, learning my music, and breathing their own unique life into each song. i imagined this possible in my head, but i never imagined hearing it outside of my head.

i visited my father's grave yesterday. it was the first time i visited it since he passed last month. i promised him that i would make him proud. with his guidance, and with my new-found focus, discipline, perseverance, faith, plus the company of the talented musicians who have graced my life...i have new hope for my music. i have hope that my music will do what music has done for me for decades.

i'm ready to move people. in bigger ways than ever.

i want to move my father, however possible it may be.

Tuesday, April 12, 2011

Notes for my Father

it's been a month, or four weeks, or 678 hours.
i'm sorting my words, memories, piles of laundry
like laid out l e tt e rs in scrabble.

a dear dead dad makes for a peculiar puzzle.

March 15th.
4:27 p.m.
just yesterday?
just a moment ago?

the doctor pronounced you dead at 4:40,
but your wife and children wore a different watch.
the tick-tock of our clock waited for your last breath
in. out.
in.

no exit.
life is marked with our eyes, ears, and heart
not a stethoscope.

gas is up to $3.88,
which is almost forty cents more than a month ago.
i'm just giving you an idea of how much can change in a month.

you asked too many times if i was heading to California,
and i kept the truth tucked tight in my bra.
(i wonder if you're an angel and can see what else i tucked.)

do you see it wasn't me,
but the ocean,
who changed her mind.

love is a wet hurricane, dad.
some days i wish i could hold on like you.
arms wrapped around one tree,
whipped naked by the wind, by the rain,
smiling.

the night before you died i studied your hand
holding mom's hand holding your hand.
i held on
to my chest
and prayed it wouldn't burst.

at 4:40 p.m. you were still warm.

Friday, April 1, 2011

holes in the air

dear doctor,

i am allergic to shellfish, dust, sulfa, cipro, and bad relationships.
i have chronic kidney disease.
i was born with only one kidney.
i have 20% renal function last time i checked.
i have been in love before. i think.
i lost fifteen pounds in the last year.
i dig the ache in Tom Waits' words and the voice of Dolly Parton.
i have skin that itches like it's crawling with lice.
i enjoy dark chocolate candy and peppermint tea.
i have zero appetite on most days.
i have been hospitalized five times too many for just the flu.
i got carded last night at the bar, and i'm actually thirty. plus four.
i have been on five antibiotics in the last four months.
i have a thing for lips. maybe it's an addiction.

side note: i was also diagnosed with two brain aneurysms.
but i asked for a miracle and i'm aneurysm free.
you can call it a medical mystery,
but i'll take the miracle, thank you.

no, i do not have diabetes.
no, i was not sexually abused as a child.
no, i do not have cancer.
no, i do not feel unsafe at home.
no, i am not a smoker, or drinker, or drug user.

yes, i try to exercise.
yes, i try to eat healthy.
yes, i'm sexually active.

do you want to hear something real?
it's pushing through the knots in my throat.

i am afraid.

i feel my body in decline,
from the moment i wake up until the moment i put my head down at night,
i am acutely aware of the death occurring within my body.

how do i like my coffee?
black.

the question "when is your transplant?" is splintering,
so i punch holes in the air.
please. stop. asking. me. this. question.
please.
because i do not know.

hope?
i got hope.
but it can't be purchased in bulk at Costco.
i work hard to find it at a reasonable price,
so i'll pass on the anti-depressants.

i am a very patient lady, doctor.
i can even wait to climax if asked.

i want you to know
i am doing my very best
waiting for you,
my donor
and my body
to all fall
in alignment.