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!"


.

.

Thursday, December 31, 2015

Breaking Silence

"Love Potions" are taking over the porch! We install the work on Sat with the artist reception on the following Sat. and I am scared to death. The 3 large canvas paintings are just too big for my studio.  The newest (and just finished) sculpture is out on the porch, paint drying.  I have had such growth with this work! It is not the work you are expecting to see from me; it is not the pretty pictures of flowers, landscapes, life studies. That work was created for others, to like, to sell. It does not matter if this work sells, it matters that I turn my heart inside out and tell you a story. 

It’s a love letter to myself, confirmation that I will go on, flamboyant, vulnerable and disturbing.  It is my heart screaming….can you hear me….this is what it looks like!


"Breaking Silence"  Janis Ian

Thank you 2015....

It has been, without question the best and the worst year of my life.  As I put this together I laughed and cried more than I think I ever have. Once upon a time, New Years Eve was about how much I could drink without passing out.  I lost that challenge more times than I ever care to admit.  The 12 hour hangover the next day was just an added bonus! Do not get me wrong there will be a bottle of champagne opened but it may or may not be at mid night,

But now,  I am reflecting back on the year. This has become a big part of my New Years Eve. The highs and lows are my personal acknowledgment of  my successes and losses.  Now it is time to celebrate and mourn and then..... let them all go. Tomorrow I will welcome the new year with all of the feelings of a fresh start and the chance to make my life even stronger and better!

Monday, December 28, 2015

Declaring to myself and the world that I am not defeated!

The stitches are out! I was hooked up to the computer and re-calibrated! Everything is working just the way it should and the healing is progressing just as it should or maybe even better! This past week I have been thinking about 2016, how wonderful it will be and what I want to do to live the next 365 days spectacularly, and this came across my email on the OM site. And I am like….YES!    Maybe it is time for another Artist Way Weekend!

“You can channel your pain into helping others and spreading a tide of curative energy throughout the world. Helping others can be a restorative experience that makes your own heart grow stronger. In channeling your pain into compassionate service and watching others successfully recover, you may feel a sense of euphoria that leads to increased feelings of self-worth and optimism. Your courageous decision to reach out to others can be the best way to declare to yourself and the world that your pain didn’t defeat you, and in fact it helped you heal.”


"Change the World"  Eric Clapton

Sunday, December 27, 2015

good enough.....


I am afraid of so many things, but the one thing I am not so afraid of is to talk about what or why I never feel good enough.  And here is the thing….each time I share my fears, others seem to know just what I am talking about.  They know these fears, too.  There are so many of us that seem to not feel good enough, not smart enough, not skinny enough, not pretty enough….not perfect. And although I know all of the intellectual reasons that all of these new bumps and scars on my chest do not define me, when I look in the mirror they scream loud and clear "you are so ugly", "you are broken", "how could anyone love this?" at me.  

I think I should start a club and with the single mission of getting rid of the word perfect!  Good enough is my new perfect!


"Body Love, Part 1 & 2"  Mary Lambert

Saturday, December 26, 2015

Really live....



The bruising is beginning to fade and the stitches come out on Monday, all are clear indications that my body is doing what it is designed to do….HEAL… my life begins again and I cannot wait!  So much of this year has felt like it was spent destroying my body, my health my life in an attempt to make it better, when the reality is, just between you and me, I think my body was doing a pretty spectacular job on its own, not perfect but not bad.  From here on in it is just me and healing, no more surgeries, no LVAD, no transplant just sweet amazing, fun, creative, dancing, painting, laughing, loving, life!  It is time to put this pain in the past, time to begin my life again.  I survived, I am still here, and I want to live…I mean really live!

"Get it on...Bang a Gong"  T. Rex

Friday, December 25, 2015

Enchilada Eve.....




Yes Cheryl, There is an "Enchilada Eve"!

15 Years ago in a turkey/ham holiday revolt we opted to have Enchilada's for X-mas Eve dinner. Evans' Enchilada Eve has become a wonderful irreverent tradition at our house and we love it! Unfortunately I was unable to do my Enchilada Duty this year, but what a marvelous gift to see my children Darren and Jill carry on the tradition. It is the little silly things we do year after year, like the Jones family cinnamon rolls that the Evans's have done for 40 years now. These are the threads that stitch my family together and I am truly blessed.


"I Believe in Love"  Indigo Girls

Wednesday, December 23, 2015

Here it is! My battery back up!

Here it is!  This is what is now inside of me….about 3.5 inches long and maybe 3 inches wide about a 1/4 to 1/2 of an inch thick and it is quite heavy.  They let me see and hold it before surgery.  It has been implanted on my side about boob height with a wire that runs in me and up to my heart.  One big incision and two more little ones and day 2, they are still quite sore, but it is done and it is all good!  From here on out if my heart cannot recover from erratic electrical and dangerous heart beats, my hickey will kick in and shock my heart and do it for me!  It is a pretty terrific thing!  ICD technology is not all that new, but it is changing so fast….this is the latest technology and they have asked me to be a part of the research study, I have said yes and am looking forward to being a part of the growth of medical technology.  I am so blessed!

Monday, December 21, 2015

Beginning again...

Today is the day!  Finally…the day is here and the last surgery…it is almost over…one quick overnighter and a “back up battery” and I am good to go.  Ready to start a new life and New Year with a little bionic hut-spa!  I will confess that I hate hospitals, but I do not think that comes as a surprise to anyone, any I am nervous about having electrical “equipment” implanted and a bit apprehensive about what the “shocks” will feel like or how often I will get them, but on the flip side I think some of the anxiety I have had for years and have just learned to cope with may finally go away and a whole new freedom will arise!  I am ready….let’s get it done….I am ready for it to be over so I can begin again!

"Heal Yourself"  Ruthie Foster

Friday, December 18, 2015

holding on....

I have tried so hard to understand why he is in my life….clearly there is something I have to learn, he is still here and I continue to reach out.  But each time I come away frustrated, baffled, lost, hurt and almost angry.  I would like to search for our lessons together, but I do not think that is going to happen, we are in such different places.  “I am going to have to let the tender darkness do the holding on for a while.”

One more…last time…finally….this is it…no more.




One more…last time…finally….this is it…no more.  A huge sense of apprehension accompanies this ICD surgery.   I think there will be a great deal of comfort of knowing my heart has a “back up” system.  There is also a great deal of relief in claiming this as the last surgery to keep this going.  This year and these surgeries have and will give me the best quality of life available.  It is up to me how I want to use this life, I have so much more to do!

                   "Defying Gravity"  Lea Michelle

Tuesday, December 15, 2015

Independence Day 12-21

Have been feeling pangs of independence…I felt them before the last surgery too.  However this surgery will be nothing like the first.  This one is going to be a cake walk.  Easy deal….in and out of the hospital with just an overnight stay!  I have truly come to hate hospitals, even more than I did before.

It is kind of a double edged sword, having an ICD!  The bad part (at least for me) is that being fiercely emotionally independent, this means my life may be depending on a little battery powered “ hickey “ implanted in my chest.  The good thing is I can be confidently alone and live my life without so much fear about sudden cardiac death.  This appeals to me and scares me at the same time.

This independence thing seems to have taken on a new ferocious meaning since my own ability to financially support myself has been so severely impacted.  Sometimes I feel like I just need to prove to the world and me…that I can do this…My Independence Day is Dec 21st.
"Hammer & Nails"     Indigo Girls   

Tuesday, December 8, 2015

I passed....

I had an EKG this morning for the sole purpose of measuring things to determine if I fit all of the criteria for a newer kind of ICD implant.  This hoo-ey –doo-ey  ICD has leads will not have to be threaded directly into my heart but will function just as well outside my heart without risking infection and more damage.

I passed….so surgery is on for the 21st!  This is the last surgery....the last invasive procedure...the last...from here on out I am on my my own, I have given it all I have, I did it all.  It is all on me now and swear I will live and create, and love!

"I Lived"    New Republic

Sunday, December 6, 2015

Friday, December 4, 2015

This time I open my eyes before I click my heels 3 times!

"You just had to learn it for yourself."

Lessons, I suspect they have been here all along.  I just could not see them and in some cases did not even know it  existed or recognized it as a problem.  But the pain it created is real.

Yesterday I realized there is a huge difference between “cared for” and being “taken care of”  just a few short words that on first blush seem to have the same meaning.  But there is huge difference and confusing the two can cause massive amounts of heart ache. 

This time I open my eyes before I click my heels 3 times!

"For Good"    Kristin Chenoweth & Idina Menzel

Wednesday, December 2, 2015

the magnificent practice of letting go....

Blank canvas and ready to begin again, but letting go FIRST!
I learned again, that old habits die hard…

After completing a wonderful and successful large abstract piece, I was anxious to begin another.  It was a spectacular failure!  I am fairly new at abstract painting, and spent some time reading about and studying the process.  Over and over again, regardless of the size, style, medium or artist the one consistent element was that they approached the canvas, let go of preconceived images and allowed the paint to express a feeling.  My first true abstract I was able to do that, it was a marvelous experience….I wanted more! 

And then because I wanted the second painting to be as good, I reverted back to my original “we are all taught to do it” method of painting…make a plan, do a sketch, arrange the composition.  And this work like all other pieces I created in the past….was controlled, I controlled every aspect of it.

Yesterday I planned, I sketched, I controlled the work and the painting was horrible!

This morning I woke up, painted over the image and I am starting again.  Today there will be no sketch, no plan just a free exploration of feelings, a dance with paint and the magnificent practice of letting go.  And that is precisely how I want to live my life from here on out.

                                                                                      "If You Could Read My Mind"  Gordon Lightfoot

Tuesday, December 1, 2015

not waiting...

No they cannot break me.  The current medical industry disregards me  Their need to control my personal information, translates into controlling me and my medical decision making.  It puts me in emotional fragile territory and this time keeps my life on “hold” unable to make commitments for  anything, waiting to hear if the ICD is a going to be implanted or not.   I have been struggling with this for the past month. 

At the risk of sounding like a cynical conspiracy theorist, when the test results are not what they expected or contrary to their expectations, they delay and avoid me.  I cannot wait any longer; I do not want to postpone any more life.  I am moving forward…It is my body…It is my life, I want to be living not waiting.
"Arms Around my Life"  Janis Ian