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.