I started this two years ago with the intention to write about my music and my health as they both shape huge parts of my life.  It's been a while since my fingers have touched this blog...possibly because reality is best served with a huge side of denial.  But where did denial get anyone?  The truth is that I'm not denying all that's going on in my head.  I'm very aware of every itty bitty thought in my head. I'm just not admitting much out loud.  Because that's what most of us humans do-keep chugging and push the crap deep down inside of us so we can manage day to day.  But I think that leads to cancer, so I'm gonna try expressing myself.  I'm going to share with the blogging world what the next two months of my life will be like, because ironically, my music and my health are both about to hit a turbo button of change. And that's worth writing about.

On July 21st I will, with my band, release our first full length album.  Maura Rogers and the Bellows.  We've had a number of changes in the instrumentation, the name, and the members over the past two years.  Finally, the band feels like a family.  A family with maybe one black sheep, but a family nonetheless.  ;) We have spent the last 8 months working on songs, defining our sound.  I've been taking huge leaps from my comfort zone as a singer-songwriter and exploring song writing that considers an accordion in a build, or a melodic guitar lead, or a driving drum beat--such things were never possible when I was making music alone.  And I love it.  It's definitely not easy to try to make a record in kidney failure, but when is it ever easy to do something REALLY worth doing???  The great thing about this is not only the new love I have for the music and sounds that surround my lyrics and voice, but the love I feel surrounding me in the members of my band.  The dedication and support these individuals have demonstrated has humbled me beyond words.  Everything, from getting band photos, to designing Cd's, to mixing the album, to mastering the album has been possible because of these individuals giving their time and energy.  Not because they want money, or want to be famous, but because they believe and love the music.  They are genuine artists, and I'm so grateful to have each one of them by my side. On stage and in life.  When I suddenly find that my body is too weak to work, and my health prevents me from having a daily purposeful job, this music is what keeps me going.  It makes me feel like I'm still contributing.  So when I'm sitting at home figuring out how to keep my stomach calm, deciding which drug will help which symptom, mindfully plotting how to avoid dialysis for the next two months, I can still pick up my guitar and I can still push my voice, I can still find expression, and I can still share my ideas with my band and watch them blossom.  This is my validation, and it is crucial to my survival.  


On August 8th, I will receive a new kidney.  This day has been quite a journey to reach, and now it's less than two months away. I first met with my kidney transplant team in November of 2010.  The last two years have been hard. Hard is an understatement.  They've been a roller-coaster of emotions. Each member  of my family who stepped forward to be a donor, some of them being perfect matches, were either declined because of discovered health conditions or discovered kidney dysfunction.  And there were others in the family who I am just learning about who stepped forward but never made it past the first blood test or interview.   Hope was in my hands, and as fast as it was delivered,  it was taken away.  On top of that loss, a concern for others is added for those whom I care about whose health is also in potential danger.  In December of 2011 I went on the national kidney registry.  This news was delivered via a phone call from my transplant coordinator who explained to me what it means to be on the registry.  It's kinda like a bridal registry, except in place of picking out plates and centerpieces, you're picking what kind of cadaver you're willing to accept a kidney from.  The conversation consisted of questions like this:  "Are you willing to accept a kidney from a cadaver known to be in good health between the ages of 50 and 60?  Are you willing to accept a kidney from a cadaver with some potential health issues, between the ages of 50 and 60? If you are willing to accept a kidney from a cadaver, we will call you and you will need to come to the clinic immediately for your transplant because the kidney only lasts so long on ice."  Wow.  I suddenly imagined a gazillion scenarios of what I would be doing when I got the call...maybe I'd be in the middle of a show, maybe I'd be on a date, maybe I'd be opening Christmas presents, maybe I'd be skinny dipping.  It was a way to entertain myself for a reality that kinda seemed insane.  Really? I could just be shopping for groceries and leave my cart to go get a transplant?  Really.  This was something I know many people are so grateful to receive, and it's hard to think of it as insane.  But that's what it felt like.  And I crashed hard into a wall of despair, thinking that I just had to sit and wait for a kidney.  But with the support of loved ones, of friends, and of strangers I found that I didn't have to just sit and wait.  I could be proactive. I could do something.   Through the social media forces of Facebook and this blog, I was able to take hold of a situation that left me feeling powerless.  I actively sought a donor.  Six months later, over twenty new potential donors later (including family, friends, and strangers) I have been given a date. 8/8/2012.  I'm a fan of even numbers.

Tonight, I'm prepping for a colonoscopy and an endoscopy.  It's one hell of a way to spend my evening and my Friday.  But I'll take this shit, because the end result is worth it.  It's worth the shit, worth the wait, and worth everything in my soul.

*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."

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.

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.

*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.

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.

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.