Thursday, June 21, 2012

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.

Monday, June 18, 2012

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.

Thursday, June 14, 2012

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.