upon you

against the hard wood floor i stretch my body.
my back flat,
parallel with the planks.

my right hand falls
upon my abdomen,
upon you.

for the first time in two months i realize where you sit within me.

the universe rushes under the palm of my hand.
gift, light, truth, pulse
nestled right here.
just beneath this skin.

who am i
to feel, understand
deserve
this?

i want to grab your hand,
i want to place it here.

feel what i feel.

do you know what you have done?
do you understand what you have given?

this week i thought i forgot how to be grateful,
irritated at the length of lines, commercials, slow internet connection.
how easy it is to get distracted into distraction.

how will i remember?

touch this.

feel this. 

here you are.

survivor

first I had to learn to scoot,
before I learned to crawl.
and before I learned to walk,
I had to learn to tumble, tumble, tumble.
(and dive. down a flight of stairs. in a plastic walker.
thank you seventies for shag carpet.)

I was bred to be a survivor from the beginning.

I am a three course meal these days,
an appetizer, entree, and dessert of emotions.
I have no idea how I taste,
but I've heard your adjectives.
is your tongue numb to being full?

(I am trying my best to be a good meal.
if you complain to the manager,
I may stir atomic heartburn.)

I wanna be where the writers are.
closing down a dark dive bar,
whiskey and ginger in my left,
black ink fading in my right.

(but it's 4:32 a.m. and I am in bed,
tapping on my smart phone, nursing a nine inch scar.
insomnia is to writer's block 

what prune juice is to constipation.
word flow.  

finally.

so what if I'm in bed.)

look at these dark medals that hang under my eyes.
I have earned these swollen circles.

I am a survivor,
of writer's block
kidney death
miracles
an Irish catholic clan of nine lads and lasses
depression
divorced parents
miracles
homophobia
unfaithful lovers
miracles
the death of my father
the dying of my mother
diving down that damn flight of stairs before I was one.
and more.

watch me move today.
really watch me.
(I'm not just what you see,
nor just what your tongue tastes.)

I am a survivor,
of miracles and tragedies

and I respectfully own them 
all.

five words

sitting inside a house for four weeks
makes four weeks feel like four score and some years ago.
the clock becomes a foe
the computer, a square best friend.

(to socialize with more than two people requires a bacterial mask,
which sometimes feels a tad bit excessive.
however, the alternative is not a possibility.)

i miss my classroom, coded handshakes and high-fives with students.
i miss driving to the drugstore when i need toothpaste.
i miss feeling sexy.
i miss sweating on an elliptical.
i miss the sound of a packed Lucky's on a Sunday morning.
i miss feeling a live bass guitar thumping in my chest.
i miss the sound of my voice erupting into a microphone.

my head tells my body:  "you have a new kidney!"
my body tells my head: "be patient, excited head."
my doctor tells my head and body: "you are more fragile than you were before transplant."
my head and my body sit.
quiet.

i'm seeking comfort in this loneliness.
i'm seeking to re-enter the world with electric passion.  ZING!
i'm seeking a way to pay my bills.
i'm seeking eternal caffeine for this spiritual awakening.
i'm seeking to understand my new body, my new life, my new career, my new identity.

seeking.  see king.  see queen.  me.

i was up last night from one to three am, staring at words about toxins pumped into me.
how is it that something so vital to saving my life can create problems that would take it?
pharmaceutical conundrum.

i wanna cry sometimes.  i do.

but i have five words that give my tears perspective.

she gave me her kidney.

(erase the 279 other words above. they are just noise.)

New Beginnings

It has been 2 weeks since I was gifted a second chance at life.  

My body accepted this second chance in record time. 

No joke.  The surgeon's message to my family was, 'the second we connected Meredith's kidney into Maura, it began producing urine on the surgery table.' 

Immediate acceptance. Typically there is some adjustment time that occurs.  For some it could be a few hours before the kidney takes to its new home...for others it can be a few weeks.  The fact that my body accepted this in seconds only confirms my faith and trust in the undeniable grace that has unfolded within and around me. My body opened itself to love and received it without fear, without hesitation. I received this gift with the deepest sense of gratitude I have ever, and quite possibly will ever feel. Now the awe I feel for my life, for humanity, for second chances, for my love, for my soul mates, for my friends and family, for my past, my present, my future, and for Meredith...is indescribable. I believe it may be some time before I actually have the words to explain.  I also believe there really will never be words that can adequately explain it.  It's one of those rare life experiences that can't be shaped in words.  How do you put "awe" in words?  I hope to try to find a way to share what this means to me...but I have come to accept that it's going to be a process.  And I'm excited at the aspect of how this process will reveal itself to me.

Even though it seems impossible, I'd like to entertain the chance at trying to give this awe words, because this awe is changing me.  

Forever.

(Small dose of grungy reality, so I don't make everyone sick with sappy happy joy. There are A LOT of difficult things I'm adjusting to. There is a lot my partner is adjusting to. There is a lot those close to me are adjusting to.  Having a transplant is huge, but helping the body adjust to all the medications to prevent rejection is also quite huge. Huge and rough (when I write rough, hear Tina Turner's voice growling in Proud Mary.) ROUGH. But of course, worth it. It's what makes this new beginning possible. So it is hard, and pumping my body full of toxins to prevent rejection is REAL hard in the first month post-transplant. But I choose to focus on the awe. I choose to see past the pettiness that occurs in daily life and focus instead on how unbelievably fortunate I am, how unbelievably fortunate my partner is, how unbelievably fortunate those who love me are for this gift we have all been given.)

Awe. 

Awe for life equals a new attitude.  This new attitude is is drenched in the feeling of possibility.  This feeling of possibility wakes me up, and is accompanied with an energy I have not woke up with in years. This week I woke up without swollen hands, without swollen eyes, feeling rested and full of dreams, goals, and a renewed passion for my life.  

(I remember who I was just a few weeks ago.  I didn't let my disease get in my way-I worked on recording and releasing an album with my band, I moved into a home with my partner.  And I did these things with a sense of trust.  But I have to admit there was a lingering fear that tangled itself around each adventure.  This fear was rooted in rejection.  What if people don't like the new album?  What if I'm not ready to live with someone? What if, what if, what if?)  

On August 8, 2012, I put fears to rest.  The surgeon cut me open and restored my faith. In humanity, in myself, and in all that I am capable of doing.  

I am capable of anything.  I am capable of anything.  I am capable of anything. 

I will pursue what I want and I will go after everything and anything that will make me stronger and more fulfilled. Regardless of the outcome, I am not afraid to try, because I have faced my biggest fear and have come through stronger than ever. 

I will:

Get my band to Philly, NYC, and Atlanta!  
Take a cooking class!
Audition for theater! GLTF!
Share Meredith's and my story, increasing awareness of Live Organ Donation!
Write! Get Published! 
Go to Ireland with my partner and family!
Yoga!

This is my Act Two.  Every morning is a new page and I hold the power within to shape it however I like.

This is a gifted second chance at making the most out of my life.  

In honor of Meredith and her gift, I am going to make the most out of this second chance. 

One week.

One week.


Seven days.


168 hours.


A cup of coffee in hand, a toe swollen with gout (4th episode in the last 2 months, and it's not from eating meat of drinking hard liquor), and I sit with the reality that in one week, the journey I have taken over the past 6 years will come to a close.  I will have a new chance at life.


Just writing that sentence gets my eyes wet.  This is real.  This is so very, very real.


Monday morning I went to the clinic and gave three vials of blood to compare with my donor, confirming that we are still a 4/6 antigen match and good to go.  When I was walking into the lab, it had a whole different feel than it has for many, many years.  I had such a strong sense of faith, such a strong sense of knowing that as real and as huge and as overwhelming as all of this is, it is meant to be.  It is meant to be in ways that words can not explain.  If there's some cosmic way that proves we are all connected, I am soaking in it right now.  I am soaking in the reality that a complete stranger I met under two years ago is as close of a match as my own siblings.


Walking into the lab, all I could think about was the hug that needed to happen.  The hug that could take the place of words, the hug that could convey an inkling of the gratitude bursting in my heart.  We hugged and to be honest, I had a hard time letting go.  However, the last thing one wants to do is hold on too long and freak out the donor!  We sat down and waited for our names to be called while surrounded by strangers. We were laughing and tearing up for a good hour about how we trust this was meant to be.


(I had read about a horrible tragedy just hours prior to this, and before going to the clinic, all I could think about was the crazy sadness and beauty that can exist within one hour of this lifetime. Across the city, a young vibrant man lost his life far too soon.  Across from me was a young vibrant woman willing to share her life with me so that I can keep on keeping on.  This world dishes it out in very mysterious ways. And I feel more obligated than ever in my soul to be as conscious of the beauty as I have been of the tragic.)


I am writing this to share beauty.  Because as weak as I feel, as painful as this stupid gout is, as nervous as I can get thinking about paying my bills, I am in the midst of something that feels so powerful, so beautiful that it needs to be shared.


From the getgo, I felt we were kindred spirits.  I had no idea that our bond would run this deep.  But I do know that when I received the following email, I had a sense of unexplainable knowing that this woman was going to help save my life.


On Sept. 26th, 2011, I received this email with the subject matter, "O+":


hey there. just thinking a lot about your situation with your siblings and your health. my blood type is O+, and i have no clue what conditions my kidneys are in (i do love my beer!) but how do you go about finding a match other than blood type? i know we were meant to become friends (soul sisters!) and to make some music, but who knows - sometimes there are larger plans in the picture.


Larger plans indeed, but I was feeling like our friendship was saving my life already, just by all that she brought to it.  It's friendship that in such a short time led my partner and I to our first home together, friendship that led to making an album and releasing it to a sold out audience, friendship that led to dog walks and pet babysitting, friendship that led to soulful conversations about life and love and how to handle all the crazy in a day.  Little and larger things, but literally saving someone's life is beyond what most friendship plans offer.


The beauty of this is only possible if you open your eyes to it.  I have talked with people who I believe are doing their best to comfort me, saying "Maura, transplants happen all the time.  It's totally normal. Everybody will be fine."  Sure.  They do happen all the time. And medically speaking, it's just taking one organ from one person and putting it in another person.  


But here's the thing, it's more than that. 


It's about the beauty of a human being willing to consciously take a huge risk for another human being. It's about opening our hearts to others' needs, and opening our own independent hearts to admit that we may have a need.  It's about recognizing the people in our lives-family, friends, and holy heavens, even the strangers. Recognizing the connections in our lives, and recognizing all that they bring to us-love, challenge, joy, pain, growth.  Our world needs to slow down a bit and recognize our connections more often...at least I know I do.  


The bottom line is this: we have no idea how the connections we make impact our lives unless we stop and reflect.  


I'm reflecting. I'm reflecting. I'm reflecting. The connections I've made are saving my life. 


I know in the next week I'm going to be doing my damn best to recognize all the beauty around me.  And the with second chance I'm being given, I hope I continue to do so long after next Wednesday.

leak

there is a gas leak.
i could smell the foul air a week ago
and imagined the walls bursting into flames.
they shut the line connected to the dryer,
and now there is laundry that sits three baskets high.

but what is a gas leak,
when i'm thinking about two women
gripping the donor teeter-totter tight?

i'm standing, weak
but i can step outside myself
(because i'm a trained actress)
and embrace not only my fears,
but her fears.
and her fears.

this is not simple.
this is not easy.
this is not what i want someone i love to do,
so i can live.

what is my alternative?

i am choking
on fear, on hope.
i am choking
on hope, on fear.

dear body, Houdini this into some other disease,
so i can battle it solo.

i do not want her to go to war.
i do not want her to be afraid.
i do not want to need a piece of her,
to keep me alive.

what is my alternative?

the plumber can fix the gas leak,
and the laundry will be clean and folded.

plumber, please fix the guilt leaking from my heart.

The Making of an Album: In Pictures

On Dying.

I toyed with death as a teenager.
Tickled its tentacles,
terrifying myself and mother.
The art of how to wallow in the hollows of self worth.
Fifteen years later death tap dances around me
reminding me how powerfully it plays
(how foolish I was)
and how tenderly the human body bows to it.

I saw death visit my father twice.
The second time death never left,
and my father bowed with grace.

What is this skin, what are these bones?
Where did my father go?

Remembering the blue leather seats in his vintage Honda,
I heard my voice,
"Alec, I don't see myself getting old."
Such a bold statement
stills sits on my tongue.
But what is getting old?

What is this skin, what are these bones?
Where did my father go?

I am not morbid minded,
I am just ready to ask real questions.

Dearest darling, 
dearest friends
death doesn't scare me.
It confuses me.

Oh loyal one whose will is to save me,
how do we conquer dying?
Hand me your blood,
and be my bow and arrow.
Let's send death off on a trip to Barbados,
because I've always wanted to raise a puppy.

I am grateful.

"The essence of all beautiful art, all great art, is gratitude."  - Friedrich Nietzsche

Making an album and having a kidney transplant are ironically very similar experiences.  Both require others to become a reality. Without a donor, good health and a good future would not be possible.  Without my band, and without my recording engineer, this album would not be possible.  So a unique perspective is gained being in my position.  Control is handed to others or to the universe, and trust and gratitude become essential in everything.

The upcoming album was conceived one night last October during a show at the Barking Spider (one of my favorite venues in Cleveland.)  A guy was there to record some other band and happened to be early and heard us play.  He was an instant fan-literally grabbed us at the end of the show and explained that he had to record us.  We were all a little skeptical, and yet something inside of me said, "go for it, Maura...what do you have to lose!"  So we followed up and over the course of the next few months realized that we had the opportunity to record in a multi-million dollar studio with someone who loved our music engineering the album.  This is rare.  And the icing on this cake is that he has done ALL OF IT for free.  He has spent the last 6 months coming to rehearsals, connecting with us, exploring our sound, opening his home to us for additional recording, and even helped my partner and I move into our new home.  Kevin Montgomery is a wickedly creative individual with a ginormous heart.  Without him this album would not be possible, and I feel such huge gratitude that this stranger has stepped into my life and become such a strong, supportive force and friend.  When I step back and consider how my band has formed, how Kevin has taken us under his wing, how everyone has given so much time and energy, and how patient and supportive the spouses of everyone in this project have been...I am shaken by intense gratitude. I am shaken that a dream is becoming reality.

I am grateful. I am grateful. I am grateful.  

I imagine renal failure is very similar to all serious diseases. Any serious illness, be it cancer or heart, lung, blood disease etc. changes how a body feels and operates.  Suddenly the body's strength, endurance, and energy feel foreign.  The mind may be strong with intent, but the body asks for patience and rest.   And then there's the emotional toll, not only on me, but on those around me as we all struggle to understand what is going on and how to best comfort each other throughout this process.  I'm still with it enough to know that this illness is not just affecting me, but everyone near and dear to me.  I know this and it makes my heart hurt because I can sense the stress others feel witnessing the decline.  But there is hope and on the bad days, I try very hard to remind myself of this.  I focus on the fact that there is someone willing to make a huge sacrifice to save my life, and suddenly all the stress of bills, all the stress of not working, all the stress of going on disability, all the stress of interacting with negative people, all the stress of dealing with health insurances and the upcoming costs of anti-rejection medications, and all the stress of my body's weakness feel a bit foolish.  (I keep hearing the chorus of Elton John's "Someone Saved My Life Tonight" as I write this.  The lyric and emotion of the chorus grab my gut.) So  I could stress out about a lot...but what is the point of it?  There is so much out of my control. And when I step back, remind myself of this, and recognize that there are hundreds and thousands of people battling some sort of health issue, I realize my disease offers me something so very unique.  It offers me an experience to accept life from another human being.  Writing that sentence makes me want to cry, laugh, and say screw the bullshit.

I am grateful. I am grateful. I am grateful.

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.