life, love,art. heart failure and assorted ramblings

life, love,art. heart failure and assorted ramblings

Don't Talk Like That...

I write to find out what my heart thinks....
I write to expose and work through the ugly parts of this disease, open heart surgery that was less than successful and more recently an S-ICD (internal cardiac defibrillator) implanted in my chest that will hopefully restore my heart beat in case of sudden cardiac death. I am here to celebrate my life, to uncover my fears, to hold on to love, to learn how to live a full life with heart failure, to honor my creativity, and to explore all of my emotions out loud ...before anyone can say
"Don't talk like that!"


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Tuesday, September 30, 2014

Shake Woman Shake

Yes!  Letting go of everything that does not resonate immediately with my soul….No more pushing to make it work.  I know how it feels when things are right, you know in your gut right away.  Every cell lights up!  Forget the try try try again crap. They forgot to tell us, those that do... are passionate about what they are doing. They do not see it as difficult or uncomfortable or hard, we love every second of what we are doing.  Other people’s idea of success is of no importance.  There is not enough time in this world for me to risk one more second not doing anything I am not passionate about.  I am grateful for my gifts!    BOOM..... earthquake!

 "Shake Me Like a Monkey"  Dave Matthews Band

Sunday, September 28, 2014

What on earth makes her think I do not get this!

The cardiologist ripped into me this week.  Her words exactly….”you are not taking this seriously” …. “Denial”…. “When are you going to understand, this is your life?”…”Does your family know how sick you are?”

Are you fucking kidding me?  What on earth makes her think I do not get this!  I asked her to tell me how she thinks I am going to die, then I will consider her way of how I should live (why should I take medications that make me sick…surgeries…etc…etc…)  Her answer was, "everyone dies differently, “I cannot tell you that.”  So  “Why is it so hard for her  to understand that I want to LIVE it differently?”

I really did not know how I am going to die, and perhaps it was unfair to make such a definitive statement.  Then I found this book in the second hand book store. It turthfully, clearly, frankly, told me what I can most likely expect (well actually, it is what all of us can expect) but NO ONE, especially the doctors want to talk about it.

When this day comes, (and it is not here yet!) it is going to be ugly...it is going to hurt but I will be able to do it better, knowing I have had the best, truly fun, with incredible outrageous experiences, marvelously full life I could possibly have had.

And I cannot do that if I am sick and scared all of time!

"Strip Me"  Natasha Bedingfieild

Bitch, moan, crab, kick, belly-ache, gripe

Bitch, moan, crab, kick, belly-ache, gripe and in general I am not a happy camper. I know that lessons come to teach, that everything can be an ordeal or an adventure depending on my attitude, and 42 other platitudes about having a positive outlook on any situation….but sometimes they just out and out suck….There is no attitude or happy quote that will make a pile of shit be anything other than a pile of shit….if it stinks, walk away from it!

Whew...that feels a little better. Not much....but a little.....


"Satisfaction"  Rolling Stones

Saturday, September 27, 2014

Divinely Misguided



Never certain what experiences open for me or why, but on some level I understand that I asked for them all.  Consciously or unconsciously there are lessons I need to learn.  Some I go into knowing exactly what I need to learn…others I have no idea what is waiting for me.  Those are the ones that scare me.

Is the lesson to keep moving forward, risk the pain, for an unknown pleasure?

Worry about the future…or stay in the now?
The fear of the furture or the pleasure of now.


"No No No" Paolo Nutini

Friday, September 26, 2014

Faith



So if fear has been my poison, is it possible faith is the antidote?
Not the typical worn out bible thumping faith, I mean real faith!
Faith in my own heart.
Faith in myself.
Faith that I will know what to do when I need to do it.
Faith that I can do this on my own!
Just big fucking faith….that is what I need!


"Have a Little Faith"  Michael Franti

Thursday, September 25, 2014

I Just do Not Know it Yet.


Desperatly grasping for things that should not be, will never make them be so.
Maybe it is something deep inside of me, my subconscious or the universe saying.
this is not you, this is dangerous, this will only cause you pain.
Twice I listened to that voice and walked away, Twice I discounted my own gut and went in anyway. It failed both times.
  
Perhaps this is not an ending, but a beginning.
And I just do not know it yet...


"And Your Bird Can Sing"  The Beatles

Tuesday, September 23, 2014

Brave.

Here is what I am up against, a medical industry that has set tests, treatments and procedures, if you fall outside the norm or the medicines fail to produce the results they want, they will keep pushing until you are mashed and forced into their “management” box.  If your body does not perform according to their expectations, then I am wrong.
Heads dug into pages of test results, not once do they ask,
How are you feeling? 
What do you want the rest of your life to look like? 
What do you want to accomplish with this life?
I am forced to fit their protocol. To stay alive as long as possible it does not matter to them what “alive” is to me, the definition of alive for the medical industry is breathing (and even that is questionable).   I want to live now.

….and I so am tired of trying to get someone to hear me.
"Living in the Moment"  Jason Mraz

Monday, September 22, 2014

Lovingly, Georgia

I had truly forgotten how wonderful it felt to just read!  After several years of textbooks and digesting words for no other reason than to regurgitate them at a later time seemed to have just about killed whatever desire I had to just read.
Lovingly, Georgia was by no means a story, but a pretty amazing compilation of letters that were written to her friend, Anita Pollitzer.  I almost felt like an unwelcome voyeur peering in on some of their most intimate thoughts.  Amazed at how the thoughts and feelings of women artist really has not changed that much.


"No Sugar Tonight"  The Guess Who

Change

I want this to be easy. It is not going to be.
I do not want to do it alone, but the reality is each of us has to. No one can do it with me. The universe has kicked my crutch out from under me, and is making me do this by myself,

First a curse, then a blessing…growing and becoming emotionally stronger is not easy but I want to do it. I need to do it. I have got to be strong enough to do this by myself.
I will be strong enough!
And the art is going to show me the way!


"Change"  Tracy Chapman

Sunday, September 21, 2014

"Never let FEAR turn you against your playful heart"


Some gifts come when I least expect them.....thank you
a friend sent this via FB and it could not have come at a more perfect time
...on days when it gets so hard, it is nice to be reminded.....

be still


Please….. I am so tired.
…be still
It hurts.
…be still
Why?
…be still
I do not want to.
…be still
Is it me?
…be still
I do not understand.
…be still
It’s too late.
…be still

I can be still,
will it make this stop?

"Save Me"  Gotye

Saturday, September 20, 2014

Broken

Could there possibly be anything more broken than the current state of health care?  At the most incredibly inopportune time I receive a letter from my health insurance company…Humana…stating that my doctors and hospital (Florida Hospital) will no longer be in their network.  It is an income generating multi-million dollar business.  The state of my heart is of no concern to them. Makes an already difficult set of circumstances, absolutely cruel.  I am exhausted.


"A Prayer for...." Seal

Friday, September 19, 2014

Out of the Loop

I was told somethings would begin to happen, 
I chose not to deal with it at the time. 
The thought process was…. if they were right, and this was still up for debate as far as I was concerned, the time to deal with it and make the necessary provisions would be when (and if) it happened.
I am beginning to detect the circles. 
One thing always leads to another; it is never a single isolated incident. 
It keeps going around in circles and 
I want to get out of the loop!
"Save Me"  Goyte                  

Thursday, September 18, 2014

Just plain UN-natural



Oh how I struggle to have faith in the natural process (of anything…of everything)!  Shouldn’t the natural process, in just about any life situation, just happen without so much directed effort on my part?  It feels as though sometimes the circumstances of my life take over and wear me out.  Then I find that I have to exert a great deal of energy to recover gracefully and maintain that horrible self-defined and most probably unrealistic facsimile of an appropriate respectable life.

Should any natural process be so difficult? Or maybe my expectations of “natural” are just plain un-natural.


"Every Day is a Winding Road"  Sheryl Crow

Meds & QVC ….no-no-no....

I cannot be held responsible for my actions while watching TV on prescription medications!  A recent round of new meds produced a massive mental breakdown.  The fact that I had even considered watching QVC as a form of entertainment should have been a huge red flag regarding the state of my mental faculties.  But, that I ordered a pressure cooker/crock pot combo is proof positive that I was medicated completely OUT OF MY MIND!

I hate cooking!  What on earth could they have possibly said or done that made me think this was a kitchen appliance I needed!  I need a coffee pot and a refrigerator, as far as I am concerned all other kitchen appliances are optional!   

I cannot even figure out the “effing” instructions! 
What the hell was I thinking!


  "I Should Have Known Better"  The Beatles

Wednesday, September 17, 2014

Secrets

Secrets….I never used to believe in them…I was certain that they were always destructive and cruel. This is my lesson. Secrets may not be the evil wicked things I had always imagined. The awful ugly things and the exceptionally wonderful things will always be secrets.  They are my secrets and I would not change one of them, I do not want to miss a thing, but I understand, I have been there, I know why they will prefer living in the middle of the road, it is much safer there.
   "All of the Stars"  Ed Sheeran

Friday, September 12, 2014

I am keeping them!

(Top) "Holding on to My Heart"                               (Bottom)  "Anticipation"
For as long as I have been creating this style of work, I have never hung one in my own home.  I think for the longest time, they just felt like work, a job….hanging my work, the layered paper pastels somehow felt like stapling a 50 page report about office procedures to my wall.

But these 2 pieces…these were different, not in execution, but in conception.  

These came from my gut, without consideration of how they would sell.  
They spoke to me. They sang to me, as they moved from my heart, into my imagination and finally, into reality.

They are my reminders that
I need to touch and feel it all,
be willing to fight to hold on
and prepared to let go.
"There is a Mountain"  Donavon

normal ????


When did normal happen? And why?

At what point in my life was I convinced that normal was the goal?

Who is in charge of establishing normal?

What happens to “not” normal?

Will we ever be able to except “not” normal?

Holy Crap…. what if I celebrate “not” normal!

That’s it!  I am not only going to search for “not” normal

I am going to sing, dance, paint, write and celebrate NOT normal!


"Coming Around Again"  Carly Simon

Thursday, September 11, 2014

Hot Tea and Tissues



As it turns out there have been little gifts tucked in between the never-ending nose blowing and constant coughing! The time to read a new book and watch an old movie and not feel the least bit guilty!

The little gifts of a kindred spirit and admiration of another female artist in the book “Turn” and the giggles, tears and connection to the movie “Same Time, Next Year” are so comforting.

Hot tea and tissues, new books and old movies, why do I always wait until I am sick to indulge?

"The Lazy Song"  Bruno Mars

I Remember This Day... I Remember That Day 9/11


I remember this day.  I remember that day. 

I remember in 1994 there had already been one attempt to take down the WTCs. I was searched and scanned before I could get on the elevator.

I remember thinking to myself, what a ridiculous idea…anyone thinking they could bring down the WTC 1 or 2.... never mind both.

I remember passing Calder’s giant red stabile on the streets as we arrived.

I remember the absolutely huge,  35’ x 20’ tapestry by Miro’ in the lobby of 2 World Trade Center. 

I remember the severe contrasting scale of the art, the buildings and the teams of people that were perfectly comfortable and at home, living and working in their presence. The awkward balance of size and scale was beyond breath taking!

I remember how high up in the air I was, how exposed I felt, but how much I could see from such an amazing advantage.

I had forgotten how spectacular that day was!

I remember the day they came down, thinking to myself, this cannot be real. I was tucked safely in my own studio, and still felt an overwhelming, paralyzing and terrifying fear. 

.....a fear  that took over every one of my magnificent memories and the absolute awe of The World Trade Centers, the feelings, the people and the art
                                                  …until today.


"Auld Lang Sine"  Maira Campbell

Wednesday, September 10, 2014

Shutting Down

I move from strong, hard ass, independent to wounded, sensitive, failure on a daily basis.  Yes, I am strong sometimes, I like being full of strength and resolve, but more often than not, I just plain hurt.  It is a pain created by years of not being heard, seen or valued.  Art gave me value, above everything else,  When I shut down there was art. I was not seen or heard but my art was.  

Art is my voice, my ocean. 

I wonder if not being seen or heard is the reason I chose art to speak for me, or did the art choose me when the ideas needed a voice.


"If Only"    Dave Matthews Band

Tuesday, September 9, 2014

How Cool is This??? What a great unexpected little gift!


Am currently forced to sit relatively still while my body does it’s healing magic, and opted to catch up on some reading….that in itself is a gift! I am a fan of second hand books and the their prices!!! Amazon always gives you the option of purchasing used from non-Amazon book sellers. I heard of the “diary/journal” of artist Anne Truitt (1921-2004) that focused on her feelings and thoughts about balancing her life as a woman and artist. It had been on my “want to read” list for some time and last week I ordered it!  I do not think you can imagine my surprise when I flipped open the cover and found this.  What an unexpected little gift!


Yes...I know it is corny, but you just had to know I would do it...                            "Turn Turn Turn" The Byrds

Monday, September 8, 2014

Holy CRAP....I know I am sick when....

When I voluntarily take all of this crap ON PURPOSE!
I will be kicking this very soon because this....THIS..... has got to stop!!!
GRRRRRR!

"Doctor My Eyes" Jackson Browne

OK-OK..... I lied!!!

I am in desperate need of a giggle or two and this was so happy!
I know....I know I promised..... NO more Burning Man...OK OK I lied!
But how could I pass this up....it is so happy.....and oh my I am dancing!
"I love you..." Michael Franti & the Spearheads

Maybe that is broken...


wooosh...a pile of negative spewing out recently in this blog...
...guess it is better here
than anywhere else
...guess I am hurt
...guess I am angry
after years of wanting...
this morning it was finally offered
and I realized, I did not need it any more.
maybe I am supose to do this alone
maybe I am already broken or maybe I am very very strong.


"If You Coud Read My Mind"  Gordon Lightfoot.

Sunday, September 7, 2014

Where are the damn rules?


Damn, that is so much easier said than done.  I bounce back and forth, and still have not figured out how to incorporate heart failure into my day to day life.  I do not want this disease to impact my life, it does anyway….I  ignore it and move forward and heart failure gets “louder” and more invasive.  How do I do this…damn it….how do I do this!

Where are the damn rules?


"Dust to Dust"  The Civil Wars

Saturday, September 6, 2014

Superpower?

I know this sounds so ugly, but one of the most amazing things I am learning is that I get to choose who and what I love and or care about. Yes there are rules to some of this.

Rule……There are people that you must love….. parents, spouses, children, siblings, friends. I suspect there will come a time in everyone’s life when we question each of these relationships and wonder how much love has to do with it and how much of it is just following the rules.

Are we listening to our own hearts or the rules someone else made up?

Quietly figuring out the people and things that I love, that I want to spend my precious time with and breaking the rule. I do not want to hurt anyone’s feelings, but for the first time in my life I am learning that I do not have to “engage”
in their drama, maybe some think it is because
“i don’t give a fuck”, and maybe
that is what you will call it,
but it truly is a super-power that brings so much peace.


"no...no...no"   Paolo Nutini

Friday, September 5, 2014

Magnificently UNbalanced!

I am looking for the balance in my life between  what I can control and what I cannot control.  At my age am still learning how to live between  effort and surrender.  I am beginning to think maybe there is no such thing as balance, or maybe I am struggling to find something that does not exist. 
You know…. now that I think about it, I mean really think about it, I am not sure I would like the balance in life that others tell me is worth striving for.   Maybe it would be boring, stagnant, monotonous, and totally uninspiring!
Maybe it is time to quit looking for the gurus’ idea of a successful balanced life.  Maybe I should just take each situation as it comes and deal with it, not with the idea of creating balance but just doing what needs to be done by  being kind, having purpose and being happy….  
Who cares if is balanced or not…in fact I think I prefer that it be magnificently UNbalanced!
"Living in the Moment"     Jason Mraz

Thursday, September 4, 2014

and suddenly...



and suddenly I remember
that most of the time
it is my choice
whether or not I engage with other peoples
 foul moods,
rude behavior,
raunchy language, 
and unyielding demands.

That is when my mouth suddenly goes....

"You Make me Smile"  Uncle Kracker

Wednesday, September 3, 2014

My Long Tall Woman in the Black Dress

My Long Tall Woman, my dark angel in the Black Dress gave me the answer I could not find on my own!
I was deciding who I was, what I wanted and how to go about getting it.  I was exploring something new and different and vacillating back and forth... Maybe I was being insecure and immature, but something just did not feel right, regardless how hard I tried, how curious I was or how much I thought I wanted it, I already knew in my heart it was not right for me. I was looking for assurance or a guarantee that I should do it anyway. Then she (the sculpture I just brought home from an exhibition) tipped and fell over without anyone or anything close to it.....I realized she was telling me that the words of a 2000 year old Sufi poet, that surrounded her creation were meant for this moment....
"Run my dear from anything that may not strengthen your precious budding wings.  Run like hell my dear from anyone likely to put a sharp knife into the sacred tender vision of your beautiful heart."   Hafiz


"Long Cool Woman in a Black Dress" The Hollies

Tuesday, September 2, 2014

Because I Want to


I wrestle with need vs. want on a regular basis.  The concept is not foreign to me.  I see need as a bad thing. Need robs me of my common sense, my rational thinking, it blurs sound judgment.
There are people, feelings, things that I want, but I will not ever allow myself to need them and there is a huge difference. Wanting lets me make choices. People and things are in my life because I freely chose.  I Made a conscious decision.
Wanting means I have freely chosen. No more needing.
I am letting go of everything about needing, making room for the new experiences of  wanting.  Wanting to dance, to love, to create and bring images from my imagination into the world. Wanting to make a difference by encouraging other marvelous creatives to do the same.  Not because I need to, but because I want to.


"Gone (going)"   Jack Johnson

I Promise, this is the last of Burning Man

But I love the whole idea of it!  The man burns 8-30-2014

THE 10 PRINCIPLES 
Radical Inclusion
Anyone may be a part of Burning Man. We welcome and respect the stranger. No prerequisites exist for participation in our community.
Gifting
Burning Man is devoted to acts of gift giving. The value of a gift is unconditional. Gifting does not contemplate a return or an exchange for something of equal value.
Decommodification
In order to preserve the spirit of gifting, our community seeks to create social environments that are unmediated by commercial sponsorships, transactions, or advertising. We stand ready to protect our culture from such exploitation. We resist the substitution of consumption for participatory experience.
Radical Self-reliance
Burning Man encourages the individual to discover, exercise and rely on his or her inner resources.
Radical Self-expression
Radical self-expression arises from the unique gifts of the individual. No one other than the individual or a collaborating group can determine its content. It is offered as a gift to others. In this spirit, the giver should respect the rights and liberties of the recipient.
Communal Effort
Our community values creative cooperation and collaboration. We strive to produce, promote and protect social networks, public spaces, works of art, and methods of communication that support such interaction.
Civic Responsibility
We value civil society. Community members who organize events should assume responsibility for public welfare and endeavor to communicate civic responsibilities to participants. They must also assume responsibility for conducting events in accordance with local, state and federal laws.
Leaving No Trace
Our community respects the environment. We are committed to leaving no physical trace of our activities wherever we gather. We clean up after ourselves and endeavor, whenever possible, to leave such places in a better state than when we found them.
Participation
Our community is committed to a radically participatory ethic. We believe that transformative change, whether in the individual or in society, can occur only through the medium of deeply personal participation. We achieve being through doing. Everyone is invited to work. Everyone is invited to play. We make the world real through actions that open the heart.
Immediacy
Immediate experience is, in many ways, the most important touchstone of value in our culture. We seek to overcome barriers that stand between us and a recognition of our inner selves, the reality of those around us, participation in society, and contact with a natural world exceeding human powers. No idea can substitute for this experience

How Will I know?

At the risk of sounding melodramatic, which may be an interesting side effect of being an artist, but again at that risk…once you find out you have a chronic terminal disease things change. Not at first, this takes a while, and believe me there is no one there to usher you through the process, no books on the self-help aisles either!
So this quote, (that did not have a source) makes as much sense to me as anything I have figured out for myself.  Seems to boil down to a few  simple words…love-live-let go. 
When I realized my time was limited, and after I finished licking my emotional wounds, I began running after life and love…coming at it from every direction, making and executing bucket lists, embracing and creating every new feeling, cramming in as much as I possibly could while I still feel well enough to do it. 
What I have struggled with is “letting go”.  How do I know what is or is not meant for me. Every cliché’ insured me that  growth and learning demand some discomfort, moving outside of my comfort zone and no pain-no gain.

How will I know what to let go of and when? 


"I'm a Mess" Ed Sheeran

Monday, September 1, 2014

Tribe, Community and Letting Go....Another Burning Man has come & gone....

"How many dreams out there can we make happen?"
Just watching sends chills up my spine,
I cannot imagine how it would feel to actually be there....

"it's about loving creating it, giving it energy and then letting go of it"

I Believe




This better than anything I could say explains this past week!
All of the quotes and words of wisdom are just that….words….unless I understand how it actually happens in my life.
The only thing I am certain I believe, without question is that I have a whole lot more to learn.

"I Believe"  Indigo Girls