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!"
Thinking about all that was done and left undone in 2013, wondering what is ahead for me in 2014. As much as we are all told that we can accomplish anything, the reality is that sometimes it is not all in our control. Regardless of how long and hard we try, sometimes it just will not happen.
The only thing I have total and complete control of....is how I feel.
That is what I will be focusing on this year. How do I want to feel?
It is the best example of "Damned if you do & Damned if you Don't" I can imagine. It is so easy to put my hope in other peoples hands, then suffer when things do not happen like I want them to. I have to assume at least half of the responsibility, I am the one that is willing to give up of my heart and hope to others . I have got to learn to own and control my own hope. I cannot depend on anyone else... "There's Hope" India Arie
Maybe it is me, maybe it is the size of the canvas, maybe it is working in a medium that I am not that strong or maybe it is some of all of the above...but I really want her to be a perfect girl, and it just is not happening!
The last week of 2013 is here and I am ready and excited about starting 2014 full of life, love, laughing and creating! Yes, there are a host of issues that will follow me from the past into this New Year but I am committed to finding a new way to deal with them. I am so looking forward to meeting regularly with creatives reading and discussing the book“The Desire Map” by Danielle Laporte with them. It already feels so good and so right!
There is no other time that brings back more memories than a quiet Christmas morning.
The joy of that first Christmas day with Jason, after he spent weeks in the hospital. I brought my new born son home at 4 lbs 11 oz. for Christmas.
The endless Christmas eve nights spent up all night assembling toys and bicycles were worth every moment just to hear the 15 seconds of happy squeals when the boys first see what Santa brought. Darren looking at me and saying, “See Mom…I told you I had been good!”
Those Christmas mornings were wild and crazy, there was so much wrapping paper you could not see the floor, I ached for a quiet relaxed Christmas morning, now I would give anything to just have one of those Christmases back!
This year I had the most wonderful family gathering, took my grandsons ice-skating, had a perfect intimate "Enchilada Eve" with my dearest friend and some family, but Christmas mornings are where the memories live.
Remembering and grateful this Christmas morning.
"Hallelujah" Hannah Trigwell
Darren got me new head phones.....mmmmm.... now I can REALLY TURN THE WORLD OFF!
Every once in a while, I recognize an incredible special creative spirit! They are so magnificently evident, it is hard to believe that anyone could avoid being pulled into their orbit. They have wild infectious uninhibited spirits, you are drawn into their world.
And God bless the parents that recognize the gregarious talents. They nurture and foster these budding creatives to recognize and attain the full potential of their innate talents even when it is hard.
Way to go Miss Zofia! You are indeed a star! Whether it is a snake with wings or the misfit angel of the Lord, you shine on everyone around you! Thank you!
Breakthrough Theater, Winter Park "The Greatest Christmas Pageant Ever"
Dec 18, 2013
You all came together, surprised the crap out of me, celebrating my BA in Arts Administration (UMASS)! I have never been so grateful, touched and honored. No formal graduation could have ever meant more to me.
For 15 years, I have met with creatives every summer and each second Sunday of the month for the rest of the year in a little classroom behind the Casselberry Art House Gallery. We have been on a collective creative journey. We have held each other’s hearts, we have shepherded each other’s talents, learned how to let go of the past, honored our inspirations, to create, sing, dance, write, draw, sculpt, paint and use our bodies, our imaginations and all of our talents to the fullest. Then….we put it all on exhibition! It is far from the typical bunch of artists!
I have always wondered….am I good enough, was I making a difference. Frankly, most of the time, I have felt like a giant fraud and any minute you would all figure out that it has never really been about me teaching you, but the other way around, you teaching me. Over the years, you have all given me so much. The most incredible creatives have come into my life through that back room, we have learned, laughed, cried and grown together. You have given me the greatest gift, the gift of meaning to my art and my life.
I am so grateful to have you all in my life. Thank you Joy & Wendy for organizing, Thank you creatives, painters, sculptors, musicians, writers, drawers, family and friends, for being here, celebrating this milestone with me. Thank you all for the marvelous gifts, cards, oodles of champagne, killer cake, yummy food but most of all the incredible scrap book you made for me. Your kindness, your generosity, your love and all of your incredible talents will live in my heart forever. Thank you is just not a big enough word to tell you all how I feel! But, until we create a bigger better word it is the best I can do….again…Thank you all!
And no…… I still do not know what I want to do when I grow up!
I have spent a lifetime being (and not very well) what
someone else has dictated I should be, following all of the rules. Most of the
time I do not know who those “someones” are, I have never met them but they are
experts and made the rules and I have followed them. How to look, act, how much
money I should have, how a lady behaves, how a mother should raise children, how a wife
should honor her husband, when a mother in-law should speak, the list goes on
and on. I have done all of these things
by the rules. Sometimes they worked, but
more often they didn’t.
Every time they didn’t, I felt like a failure. These “someones”
judge me, they are voices in my head, they are always critical, they always
point out everything I have done wrong and continue to do wrong without any
consideration to what makes me happy.
I have noticed large amounts of grousing here lately. This is not an apology, I am not sorry but it is perhaps an explanation. Grousing and writing is how I process the anger and frustration I have when this crappy heart failure snatches life and profoundly influences my days, my decisions, and my happiness.
I look at myself in the mirror and I look deceptively well. I work at it! I want me and you to believe I am normal but the fact is I struggle everyday. I have to struggle for normal every "effin" day!
Heart failure is the inability of the heart muscle to pump enough blood to meet my body's needs. Heart failure creates a nasty mess of symptoms, and every one of them piss me off, severe loss of energy, chest pain, shortness of breath, coughing, dizziness, confusion, fat feet, swollen stomach, and extreme exhaustion at the drop of a hat. What I once did with little thought or effort is now a flipping monumental undertaking. And when I do them any way (and most of the time it is so worth it!) I am out of commission for several days afterward. My entire body, organs, tissues, and brain are starving and screaming desperately for the blood that is being denied to them. Heart failure sucks, it is debilitating, and gets progressively worse with time.
Today is as good as it gets,
it does not get better. what EVER I have wanted to do NOW is the time!
And she smiles when she feels like crying. An amazing amount of hurt and anger. Why did I think time would change anything? There are people in this world that will never understand. I cannot afford to give them any more of my energy.
There are no circumstances that a "ROAD TRIP" will not cure!
Topping off the holiday weekend
with a birthday road trip trip to see all of my little guys, who by the way, are not so little any more!
A whole mess of them from 38 yr to 5 yr. all boys. Two sons, 4 grandsons. Two of them celebrating birthdays this week ....
All of them very BUSY!
Guaranteed to inspire me, or wear me out
Either way it will be so much fun!
and another monumental round of the cha-cha-cha
2 steps forward, one big step back I believe in magic...I believe in magic...I believe in magic...I believe in magic...I believe in magic...
I was not ready for this....but it is happening anyway
There are some women and most men that have been born and survive daily without the desirable “cooking gene”. Science has not yet unraveled the mysterious set of circumstances that prevent the cooking gene from developing in the normal human being. This DNA anomaly is a lifelong condition that literally millions of people live through daily! The most glaring evidence of this condition is an irrational fear of the kitchen, followed by panic out breaks in grocery stores and an inability to follow recipes. For those of us living daily without the cooking gene…..Cooking is just another household chore, just one-step above cleaning the toilet.
You can only imagine how terrifying Thanksgiving is for women (and most men) that suffer with “NCG” (no cooking gene). The entire annual holiday that is dedicated to cooking. Yes, they tell you that it is about giving thanks and being grateful, but that is a clever ruse.
To alleviate the stress brought on by Thanksgiving and NCG our small family will not be celebrating Thanksgiving in the traditional way! I will indeed be giving thanks, but not by using every pot & pan in my tiny kitchen, cooking bad food all day, washing, soaking and scraping all night, then stuffing a refrigerator full of leftovers that will probably spoil before they are eaten and eventually be thrown out. And of course the worst part, the incredible guilt I feel because by the end of Thanksgiving Day I have truly hated the entire experience, and am anything but thankful.
This year we celebrated Thanksgiving on Wednesday evening, said grace irreverently over a bloomin onion with a very tall glass of really cold beer, a perfectly cooked steak with all the trimmings, all cooked and served by someone else! A perfect evening spent in the company of dear friends and family with good food and marvelous conversation, my perfect picture of Thanksgiving.
So today, I celebrate Thanksgiving Day by gloriously reveling in all of my incredible blessings with interesting conversations, funny stories, being creative, watching parades and football
…..But.... there will be no cooking!
For all of my loved ones, family and friends, near and far, I am truly thankful, you are in my heart today and every day!
Happy Thanksgiving! "You'll be in my Heart" Phil Collins
It’s all about choices! I am strong because that is what I choose! Crappy days will come. There is no avoiding them! It is how I get through them that defines who I am. And sometimes I forget how strong I can be. I am screwing up my courage, putting on my big girl panties. It is all about being strong.
I have been through the crap, I am still here, I am smiling and I am strong!
I had an unusual mother-in-law that had the most
marvelous “one liners” and my favorite was “Scratch it and get glad" I think it basically means crap is going to come into our lives…everybody is going to
get their share. And although in theory is
misery loves company, the reality is
nobody loves misery. Misery may gather a crowd for a little while,
but it will not last and in the meantime,
the crap takes over your life. If you want a happy life, full of friends, life and love, "scratch it and get glad"!
A wonderful day, a wonderful friend that has survived the most painful loss any woman could possibly imagine continues to teach me every day, that no matter how hard it gets, how much it hurts, how many times I cry, I need to be strong, do not let the past take away my power and don't give up. Pain and survival pull us together. It provides an unspoken but incredibly strong bond. It is through that bond, that her words carry immense significance, and when she tells me just be the best I can be today and whatever that is, she will stand beside me. I believe her with all of my heart. Thank you for a perfect day! Thank you for my incredibly creative, strong, deep thinking, open hearted friend. I am so lucky!
To be in the company of 2 other dear VoG women made it a
Surrounded by art created by children was fun and inspiring!
VoG Women, engaged in art and life.
How lucky I am to have these women and art in my life.
"Art" Tanya Davis Julia Child is one of my all time heroes, not because I like to cook, as a matter of fact I hate to cook! But she has always been my living proof, that passion about creativity transcends all cultural expectations of success. She always did what she was passionate about. She was admired, loved, and incredibly successful in the eyes of those she loved and the public, even though she was not young and physically attractive.
MiSTAKES.....I have more than my glaring and obvious share of them. I have many many many "rip roaring cannot believe she did that" others to choose from. The choices are virtually endless, but every one of them came with a wonderful lesson. If the truth be known, I suspect it would work out to be about a 50-50 split, good to bad lessons. But, if I knew then - what I know now, I would have made a whole lot more
mistakes, and loved every minute.
Stand back, I have enough time, energy and inclination to make a whole lot more amazing mistakes….Ooh
When you spend a lifetime creating, gathering, holding on
to, and shaping life, letting go is a difficult concept to wrap my heart
around. I cannot allow myself to stop
creating, loving, laughing, living, but I do so knowing that at some point I
will have to let it go. It is a new
element in everything I do and it makes every day, everyone and everything full
of more importance and passion. No one
shows or tells you how you let it go, I am figuring out how to do that on my
own and it is not easy.
Depending on words... More so than ever before, between school and the computer. Finding a level of frustration rising as I spend less and less time in the visual and more and more time with words. The words are ok, and I find that I can express myself adequately, but not the same, not the same as colors and shapes. It feels like wearing gloves to thread a needle. I will try to communicate a feeling but the intensity will just not be there. I respect the talents of writers more and more every day!
"Shape of My Heart" Sting, Josh Groban, Chris Boti
Sometimes the hardest part of this happens when they find out or when I tell them. Some are able to take it in stride, a short hick-up, and an I “never knew” and we move on, others seem almost betrayed, hurt and afraid. They will smile politely reply I am so sorry and in an instant I can feel the emotional withdrawal begin and they quietly back out of my life forever. Where is the book that teaches me how to do this?
The one thing I know is…. as soon as they know,everything is different and that is the part that I hate the most…I am still me nothing has changed! .
Ever have one of those days that things feel like they just might go right? Of course after yesterday…that would not be hard.
First I was stood up for a lunch date, nothing more humiliating than being seated by the hostess who has been told you are expecting a second.....that never shows up. You know they are all staring! So, do you pay for 1 iced tea and slink out or order lunch, like I am a strong, independent woman. I came here....a single...in a booth...ON PURPOSE! The broccoli cheese soup was spectacular!
Then in the midst of communicating with the state government and uploading requested information to their web site my internet/cable goes down. As if communicating with the government and navigating their red tape was not already fraught with technical difficulty!
The afternoon was peppered with phone calls from grown children wanting to know what the Thanksgiving and Christmas family plans were. (which evidently I have not done anything about!) Crap, wasn't Easter last week?
Then showed up for a board meeting whose location had been moved, and I missed the memo on the venue change…..ooosh, how embarrassing.
Having survived yesterday I am due for a little boom shaka-laka!
"But we never say a thing and these crimes between us grow deeper."
Often wonder when all doing it
the same became what we want in life.
For many years it was all I wanted.
To be the same, to not stand out, to be perfectly normal, conducting
myself in the socially accepted manner that commanded the admiration and
Now...I want more than anything to
not be the same!
"When all the little ants are marching-Red and black antennas waving
They all do it the same-They all do it the same way"
"Ants Marching" Dave Matthews Band
all in a row
Standing with arms wide open, waiting for my next!
Being open for what comes next does not mean I am not worried, excited and nervous about what comes next! I have no idea what “next” is going to be, but I do know it has to be something new and different , it just has to be. The old comfortable knowing no longer connects with me and I am feeling stagnant and stale.
All the years growing up, the years of young motherhood, the years of corporate politics, the years of family dysfunction and not one time in my considerable life did anyone tell me I was in charge of my own moods! I have to wonder how different things might have been if I was in control of emotions and moods rather than the other way around.
I still do not have total control over this, every now and again there is a foul mood sneak attack. The "I am mad at the world or vice versathe world is mad at me", "I feel so sorry for myself", and my personal favorite "nobody loves me" nasty moods will slip into my life when least wanted or expected!
For the first time in my life I have figured out that for the most part, I am in charge of my moods and to bastardize the words of Scarlett O’Hara “as God as my witness, I will never” be in a bad mood again. I am only picking the good ones!
There is beauty in the world I just have to know it is there and figure out how to see it. I am in charge!
Accepting reality, looking at every situation for what it really is instead of what I want it to be….and MOVING ON. I think perhaps artists and creatives may have a harder time at this than most “normal” people.
But maybe my inability and/or unwillingness to accept ugly reality is what makes my life wonderful!
In some ways, I’m afraid of writing, or some part of me is afraid of what people will think about me. I've written some things here that I would be afraid to talk about with any one. Yet I still write here because – well, I need to reassure myself. If I can write about it, I have lived through it, I have survived it and I have learned from it. Here, I am myself, as much myself as I can be through words. Here I am exposed. Most of my heart, fears, doubts, happy days, and celebrations are here. That’s me, here behind and in between these words.
My heart and soul had run dry and I looked outside of myself for help. At first it was not easy, I felt like I was giving me and my power away to fill those empty places, but when it brought so much incredible enjoyment it became easier and fun.
Now, when I stand outside my situation and observe.... I am watching those fun and fulfilling expectations turning into needy frustrating dependency.
I am learning that expectation is stealing my power and dependency embezzling my happiness.
If I want to keep my balance, I cannot expect or depend on anything from anyone but me.
I claim to be all of these things,
but in reality,
all of them are much easier said than done.
For the most part,
it is a theory I subscribe to
but talking about it
and doing are very different things.
It is time for me to quit talking,
step up to the plate, and start doing.
I had to be willing to play the game, before I was comfortable enough to change the rules. The rules are like insurmountable walls created by nameless people and entities that are established for the purpose of controlling me, my behavior and establishing socially accepted winners. Some rules are good and necessary, but in life and in art I am learning how and when to break the rules to create the art and the life I am craving.
To truly live and understand life and creativity, I have to be patient, I have to be willing to play the game by the rules before I can know how to successfully bend and break them.
"So, don't mind if I fall apart...there is more room in a broken heart. I believe in love."
I am watching chaos dance around my life, not in my life, but all around me. I find myself dodging chaos at all costs and I begin to question whether or not chaos is just a part of life. Is there some connection between chaos and passion. Could it be unbridled passion creates the chaos and/or does it feed the other way also, does the chaos ignite unbridled passion.
Am I doing myself any favors by avoiding chaos at all costs?
"Just Dropped In" Kenny Rogers and the 1st Edition
Every October while everyone else is promoting pink for breast cancer,
I celebrate RED.... for my heart!
Four years ago this week I began the most incredible journey of
my life. A massive heart attack, an
aortic pump, a stent and a week in intensive cardiac care left me with significant left ventricle heart damage. Alive... it was an ugly life wake up call.
The first year I spent in denial, chasing cures, stem cell trials, and surgical options. I was willing to take any chances to fix my broken
heart and get my life back. I finally
gave up when the high risk thoracic surgeon at Shands said that the surgery could be life threatening. My arteries would most likely not hold the grafts, restarting my damaged heart after by-pass could be difficult leaving LVAD as my only option for heart function. The best possible outcome, was not worth the risk.
The second year I was alone, unfixable, angry and still in shock. I was not prepared for any of this and I refused to accept it. I was mad, felt sorry for myself, whined and cried a lot! (and as it turns out, I am really really good at bitching, whining and crying!) Seven magnificent creative "VoG" women stood with me and held me up when I did not have the emotional or physical strength to do it on my own.
The third year I realized I was still here, still alive. I began creating and writing again. I realized I was wasting my precious time and aggressively began the war to take
my life back. My creative heart led the charge.
And this, the fourth most glorious year, I am learning how to embrace compromise and work around the physical difficulties. I can still love, laugh, create and celebrate my life.
I cannot wait for my fifth year to begin. I have so much more to do, to experience, to create, to
live, to love and to learn.
Happy Anniversary to my most amazing heart, that against the
odds continues to support me and the life I love every day....every day!