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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Friday, June 30, 2017

horizontal life pauses....

People that hang out with me have heard me refer to this as a “nap attack” a fairly new phenomenon in my life.  I have never been a great sleeper.  NAP...I had no idea what that was!  I was up on all of the hottest late-night programs John Stewart, Steven Colbert, and David Letterman (that one kind of dates me...well hell all of them do, now that I think about it) were my heroes and embarrassingly my primary source of what was happening in the world. Up until midnight + and up at 5:30 was the norm. I have always had oodles of energy and I loved it!  So this annoying demand of my body to just stop and drop is frustrating at best and downright maddening at others.  I know some of it is age but I know the biggest part of it is muscles and organs just not getting enough blood to function well and a combination of meds meant to relieve stress on my heart muscle and keep the BP low.  Naps have become absolutely uncontrollable and it sucks. I am totally ashamed of my lack of ability to keep up with just normal life. There are times I feel like a complete useless lazy slug. I beat myself up for not accomplishing all that I want to do and then promise myself “I can do better” only to find I don’t or can’t.  This vicious cycle only leads to more frustration and more emotional self-flagellation. I recognize it, I understand why it is happening and still, I have no control over it and I hate it!  Maybe If nothing else eases this insanity perhaps just calling it a horizontal life pause will help….if nothing else it does sound much more adult and sophisticated!
"Heal the Pain"  George Micheal

Wednesday, June 28, 2017

Cha-Cha...got any idea how to do that?

Most might figure this is nothing more than a "new age",  “woo-woo”, "feel good" way of being ok with, not going anywhere, standing still and static. 

I think maybe this is one of those things that make more sense when looked at from the “big picture” point of view.  How many times was I successful vs. how many times I bit the dust, fell flat on my face, screwed up, and in general just plain “missed the bus”?  I figured overall if I “break even” I am ahead of the game…but I am re-thinking that.  Perhaps the more I try and fail and try again means I am chocked full of more life experience and learning.   If I can learn how to metabolize those failures into a positive fun life learning experiences, it really will be like a wonderful life long Cha-Cha! Got any idea how to do that?


"Bang Bang"  David Sanborn

Tuesday, June 27, 2017

”You are as smart as ….whom”?

Embarrassingly….it is the result of another of those ridiculous Facebook quizzes….”You are as smart as ….whom”? I will admit to taking more than a few, and then deleting the results I do not like.  Plus....I am always looking for fodder to write about on this page and sometimes a goofy quiz is just enough to kickstart something.  I was particularly fond of this one, just because I admire this man so and I suspect the older I get the more I begin to look like him.  I have always been in awe of his ability to think in ways that were…are so wildly out of the mainstream.  He was also a huge proponent of imagination, constantly holding that part of the thought process as the most important.  Perhaps the arts and sciences are truly related!
"Think"  Aretha Franklin

Sunday, June 25, 2017

"be willing to split open"

Memories and feelings that I hold particularly close will often show up on this page but there are secrets in my heart that are mine and mine alone.  The pictures, poems, and quotes here are always the catalyst that provokes internal exploring and exposing. The advantage of turning over the stuff that scares the shit out of me, creates the tears of revelation and other times bring about eureka moments that make me laugh, is that all of it..... is my way of learning, out loud how I feel. Every single one of them regardless of the topic brings me closer to knowing who, what and why I am.  Maybe I should have been doing this all along in my life, or maybe everyone else knows how to do it without all of this writing, but I didn’t.   Maybe most of us have no idea how to understand who and why we are, and so we never do.  It would be so much less work and infinitely easier to allow parents, friends, family, society, religion, politics, doctors and the worst offender...pain...define who I am and how I should feel.  I suspect the latter is much easier. I have done both…. So, I will continue to write because it is the tool that forces me to think and learn, it is how I figure out how to be me. But there are some memories in my heart that will silently keep and live in their own most cherished way. All of them continue to make me think and learn how to be me.
"The Secret of Life"  James Taylor

Saturday, June 24, 2017

One I Admire...

"The Mask of Madness"  (oil on canvas 1943) Frida Kahlo
I love Frida!  I am not always enamored with her actual work, but I deeply admire how she metabolized her pain, her healing, her grief and her loss through creating.  It is not her images that move me but the story behind them. Her images are raw and often without much artistic merit, in my opinion.  But she did them anyway.  The purpose never was to awe us with pretty pictures or artistic skill. It is the way she took those emotions, gathered them up and then allowed them to pour out of her on to the paper and canvas. When I see her work, I can feel it.  Somewhere in my heart I know that this is the precise reason she lived so long, loved so well, with purpose and through so much pain.  Her heart, her head and her soul absorbed the aches and pains, as we all do, but then she was able to expel them through her work not giving them the opportunity to compromise her need for the life she wanted.  Frida’s life is truly the one I admire and would like to emulate.
"Hold on My Heart" Phil Collins

Wednesday, June 21, 2017

invincible.....

Maybe too honest….
maybe not honest enough.  

When I talk about this pain to others both physical and emotional, I know they are uncomfortable…hell…. I am uncomfortable telling them….I know they are…. regardless of what they say…I can see it in their eyes.  I do not want this!  I suspect that is why I am here….why I write....trying desperately to be invincible!

"Her Diamonds" Rob Thomas

Tuesday, June 20, 2017

Ups & Downs...but at the same time!!!

Ups & Downs…at the same time????   This week I am learning that I have a new kind of up & down…that involves ups & downs happening at the same time…and it is really weird…and incredibly difficult to explain!

Ed…the hospice nurse, in his delightful accent, has said several times over the past weeks…. “You are doing really good in the context of this disease”.  I do not really know what the context of this disease is, it is the first time I have had this, all I know is when I feel good, and when I do not.  In the context of this disease or any disease for that matter means…"can I keep doing what I want to do and/or is there any pain?” And there is truly very little pain… and nitroglycerin can relieve it in literally seconds… So as far as I am concerned, other than getting tired very quickly,  I am always doing good!

This week, it got different.  In the midst of some delightful personal “ups” (a huge wonderful class of Artist’s Way, sushi with friends, shoes I ordered through the mail that actually fit, bagel breakfast with my son and his family) I have run into raunchy debilitating downs with my digestive system acting up from top to bottom.  It is what is expected according to Ed, the nurse.  My organs are going to begin reacting to the disease and medications and making my physical body absolutely miserable.
But he promises me .....there are more meds ordered and on the way to help me manage this new set of challenges….

Emotionally UP and physically DOWN…at the same time… is a very weird and difficult emotional territory…
"Golden Slumbers-Carry the Weight"  The Beatles
And in the end,
the love you take,
is equal to the love you make,

Sunday, June 18, 2017

Happy Father’s Day to all of the Fathers in my life...Thank you guys!

Every time I reflect on one of my life’s accomplishments, I can’t help but realize that I achieved it because of something you taught me... Happy Father’s Day to all of the Fathers in my life!  And my life is full of them, my own father, my husband and both of my sons.  My life is surrounded by fathers, now in every stage of life.  Some have been in my life since I took my first breath, others will be here for my last.  It is an interesting vantage point.  I have loved and learned from each of them the lessons in life that have made me the daughter, the wife, the mother and the woman I am now…even the bad times have made me stronger.  Thank you guys, I am a better woman for having you in my life.
"You'll be in My Heart"  Phil Collins

Friday, June 16, 2017

but.... maybe it is not too late to be who I might have been.

I had pretty much given up on my art “career” when I came off of the art festival circuit.  I guess I had convinced myself that I had to make XX amount of dollars to be considered a successful artist.  Somewhere in the back of my mind, I thought it would be better to be a “retired” artist AKA I have chosen to not be a successful artist, rather than admit I can’t physically do it anymore. The tumbling economy and recession were excellent cover!  I had attached success to money. I did what I teach in my classes.  I decided ahead of time how much money I “needed” and the specific amount of money that would make me” feel successful”. I was so very very excited when I reached that goal and the amazing feeling of accomplishment that comes with it, but I never ever considered what would happen to me when I could not do that anymore.  And in real life that is going to happen to everyone at some point.  So now on the back side of this, I have mustered up the courage to submit work to a new gallery, I do not expect anything…but holy crap just the act of submitting work again to a gallery is so frightening.  In some ways, I feel like I am backing up…returning to where I began but left to pursue a more lucrative path.  That path has ended, but the art and the work are still tugging at my life.  Perhaps it is time to create and submit the work, see this as a new path.  I am certain I will never be what I used to be, but... maybe it is not too late to be who I might have been...or maybe this is all part of my journey and it has a beginning a middle and an end.
"Same Mistake" James Blunt

Thursday, June 15, 2017

and I find it secretly magnificent!

I will have to admit, through all of the chaos, craziness and unbelievable things that are happening on a daily basis in our government I find it difficult to find the bright side…or anything positive.  However, this quote may be it.  Although I feel like I have always been politically active, I can admit that I have written more letters and emails to my Senators and Representatives, local reps and even the President in the past 6 months than I have all of my life combined.  There is a constant thread of political conversations happening online on the latest scandals and conspiracies. I see more people involved in politics than I have seen since the 60’s.  And as divisive as it feels right now, people involved, paying attention, participating is how this amazing government works.  It has been our indifference and the complicated aspects of politics that have turned most of us off and allowed the system to run amuck.  In some roundabout way, it way means we are paying attention and hopefully the government will soon be returned into the hands of people that truly represent their constituents…..and I find it secretly magnificent!
"King of Anything"  Sarah Bareilles

Wednesday, June 14, 2017

MORE of what excites and scares me!

This is the ongoing struggle for me…it seems like most choices on a minute by minute basis boil down to just this.  Behave, be dignified, elegant, honorable, gracious and respectable.  All of those things are considered good things, which in my mind meant that everything else must be bad.  After 23 years of facilitating the Artist’s Way, I still find little jewels embedded in the chapters and this week, the term “either/or thinking” hit me like a brick upside of the head. Because I have never considered myself as having any of those distinguished attributes, I subconsciously assumed I had just the opposite. In short…I was bad…I can “pull off” the good, I know how to do it, but I have to confess, it has not always felt authentic for me!  Seems all of those and more distinguished character qualities were embedded in me by parents, teachers, and religion for the single purpose of acquiring the percieved rewards of having others recognize them and see me as a “good” person.  No one ever asked if that is who or what I wanted to be?   I am not degrading any of those wonderful good characteristics.  I have just decided that I do not have to be either a good person or a bad person.  I am both…some good and some bad and that makes me just a real person.  My intentions are never to hurt anyone and that includes me. Good and bad, I plan to do a lot more of what excites and scares me!
"Ants Marching"  Dave Matthews Band

Tuesday, June 13, 2017

This is a BIG deal!

I think….that this may be one of the biggest deals EVER and I forget to do it, on a regular basis. It may be the one thing we all need to do more of…a lot more of.

In my entire life and all of the southern manners that were drilled into me…no one taught me how to tell someone they are good for me, they light me up, they make me a better person, or how important it was!  I was taught to say please and thank you, respect my elders, be honest, do good work, company goes first,  don’t cuss, say pardon me when I burp, cover my mouth when I sneeze, do not chew with my mouth open and the big one….”Do unto others…..” But no one…and I do mean…no one told me to tell another person how great it is to be around them.  That just being in their presence makes me a better person!  Not my parents, grandparents, not my mothers (yes that is a plural) or aunts or teachers.  Not even the Sunday school teachers! I think the closest thing I ever actually saw that was something like this was inside a Hallmark card and it was this sappy “Thank you for being You” and I never really knew what that meant.

Every great moment in my life has been involved with connecting with people!  It is great, it is a huge big deal, it lights me up from bottom to top….and I am a much better person because of it!  This is a BIG deal!
"Shower the People We Love with Love"  James Taylor

Monday, June 12, 2017

I believe in angels!

I believe in angels but not the biblical, sent from heaven (or hell) variety. These angels’ wings are physically made by local Orlando creatives and worn by those whose only mission is to love and protect the family and survivors of Pulse.  Our Orlando angels arrived last year at the Pulse victims funerals to protect the families and mourners from the ugly angry signs of some Christians that came to protest.  I do not know who these angels are…but they touch my heart.  They are a living physical reminder to all of what true love really is.

They came again last night to provide another wall of love…..  Love is love. There are no restrictions, no boundaries, no color, no sex, no amount of money that can regulate or control it.  There is no religion, no God, no man, no woman that gets to claim control or exclusivity on love.  Love belongs to anyone that claims it.
"What the World Needs Now"  Jackie DeShannon

Sunday, June 11, 2017

What to say or when....

and so it goes…I have been incensed at least 42 times since #45 and I bet if you lined up all of my infuriated responses from end to end there might well be enough for a book. Then I realize I will change no one’s mind and I will only provoke more hate and most likely it will be directed at me….so I erase the post I have thoughtfully composed and move on.  There is no such thing as a spirited exchange of ideas, it is all about “I win” peppered with crude language and unsubstantiated accusations. Then I begin to wonder if my silence is seen as some kind of agreement, or that I do not agree with it but am not strong enough voice my opinion….I am never really sure what to say or when….
"Say"  John Mayer

Saturday, June 10, 2017

“to GRRRRR or Not to GRRRR, that is the question”?

 I believe....but not in #45.....  Yesterday, after watching the political goings on I prepared a rip-roaring rant and then….I realized that I had just allowed #45 to get me worked up, angry, and frustrated which I suspect was precisely his intent. On some level, it felt like he won.  He had made me pay attention to him and talk about him…..GRRRR….So I decided NO!  I will celebrate yesterday’s happy stuff instead.  Dr. Nandra came out to check on the fluid in my lungs, and it is much better!  No infection and he could not hear anything of note in bottom left lung….Woo-hoo!  Much more fun doing the happy dance than being riled up over coot #45.  I am still learning I cannot control what others do, but I can control how I feel about it!  It is all about “to GRRRRR or Not to GRRRR, that is the question”? I chose to feel good....I chose to believe in love!
"Shaking the Tree"  Peter Gabriel

Thursday, June 8, 2017

Despicable square holes


I am not sure if I am officially a “crazy one”.  It just seems to be all about who I am standing next to.  When I am with incredibly straight, follow other people's rules, non-creative people I do feel like the crazy one.  But then maybe it is just their “brand” of crazy is different from mine and there are a lot more of them.   I wish they all understood….there are parts of all of us round pegs that wished we fit into those despicable square holes.  But then I think, the real frustration does not come from NOT fitting in...it is so much MORE difficult to fit in.  I do not understand why anyone wants to fit in.  I don't think we set out to change anything, we are just trying to make it work for "us"....and sometimes, if we are really lucky we accidentally change something for the ones we are standing next to.
"Saving Myself"  Ed Sheeran

Wednesday, June 7, 2017

damn it...

…and again… damn it…fluid in my lungs!  Double up on the nebulizer…up the Lasix for a few days…..get the fluid out before it gets ugly! And orders to not over-do…what the hell is “over-do”…Let’s see I had a wild weekend of depravity …. teaching one Artist Way class,  last night I made a batch of yogurt and just regular house chore stuff….REALLY….I mean REALLY…which of these strenuous activities should I omit? Of course, if I get to choose…..yep you know it….the house chores!!!
I do not think it has anything to do with my over-doing…I think it just happens every now and again for the hell of it….just to aggravate me!
"F#@k it"

from my kitchen...and cows...holy crap!

I have a couple of “super cook” friends….aughhhh!  And I do not mean regular super cook I mean UBER super cooks…Not just out of the cookbook dinner recipes these freaks of nature “CAN” things…like they pick stuff from the garden then go through all of the picklings and "put them up" in mason jars that do not even have to go into the refrigerator! Last summer there was a full on pickle canning project, followed by assorted jellies and jams.  All I can do when they are in these cooking frenzies is sip wine and stay out of their way. I may make fun of them but they are a well-oiled machine in the kitchen.  So….when they began talking about homemade Greek yogurt, I automatically went for the wine bottle.  But then they told me it was easy and under my breath, I sarcastically asked: “Easy for who?”  I was given a sample of the yogurt dribbled with syrup and topped with fresh blueberries and she had my attention!  YUM…. THEN she told me it was 2 ingredients!  Well within my 3 ingredient rule…milk and a couple of tablespoons of yogurt (or starter culture)…Unfortunately, there is this God forsaken process that requires a thermometer and a strainer… but the yogurt was so good.  Amazon is really going to get me into trouble, but I ordered the thermometer and strainer and as soon as they were delivered I began the process.  You heat the milk, take its temperature, stir yogurt culture, wrap it up in a towel to incubate overnight!  I have never made anything edible that takes that long.  But I did it! And this morning I  made my own happy bacteria or yogurt on purpose….in the kitchen!  I know…I know…who would have ever thought…yogurt really does come from my kitchen...and cows...holy crap!
"32 Flavors" Anni DiFranko

Monday, June 5, 2017

I am RED!

So…RED seems to be the color of the day!  This morning I took one of those goofy Facebook personality quizzes and according to them, I am red.  I am ok with that…kind of sounds like me…But the day got “redder” when I went in for my 3 month GP checkup…
Now just about the time I think I have a handle on this disease and I think I know what I am dealing with…I get another rock thrown at me.  Today we begin routinely drawing blood to monitor anemia.  WHAT?  That was NOT in the handbook! But, apparently it is just another no “big deal” part of this, and I had a…Kind of “You have got to be “friggin” kidding me” moment.  The stinking reality is it does make sense.  As the organs began slowing down and struggling it does kind of make sense that they are unable to process the nutrients from the food I eat or enough o2 from the air I breathe…although I am “hitting” the O2.

And I wonder if this is it for the surprises or there are more waiting for me. ….but according to Facebook  “I AM Red?” and there is no stopping me either!
"Wonderful Unknown" Ingrid Michealson

Now you see it...







Now you see it-Now you don’t…or in this case it was the other way around. 

Our bathroom towel rack is a bit different from most but is every bit as effective as the typical towel bar. 

Anyway, it is a small bath and when seated,  I am only 2-3 feet away from the row of drying towels. So I noticed….I did not believe it…but there it is!  The kitties have their own cat doors and they bring me little “gifts”.  I have had several kitty talks with them expressing my extreme appreciation, but some of their “gifts” scare the shit out of me…clearly one of them has taken my expression seriously.

"Can't Get Next to You"  Al Green

Sunday, June 4, 2017

The Best and the Worst.....

This is ALWAYS the best/worst evening you could begin to imagine.  The fact that this will be the 27th class of the Artist’s Way I have facilitated in 23 years, has absolutely no bearing what so ever!  There is one reoccurring nauseating, horrifying feeling that is ever present (well actually there are several) Am I good enough??? Will they like me???  Will they think I am fake???  and yes…there are more things that haunt me and make my stomach do flip-flops.  The smallest is having to do this with oxygen up my nose, teaching while “connected” is going to be a new experience and challenge.  And then you just have to know I am wondering “is this, my last class?”  I just had to do that in Leesburg and it was so hard…not ready to quit anything else….But for right now….I am excited about seeing all of my old creative friends….making new creative friends and the beginning of a great summer with all of them!


"Smile" Uncle Craker

Just an update....It went GREAT!

Thursday, June 1, 2017

You can dress us up (kind of)…but you can’t take us just anywhere…

Mary Clark, Kayla Herl, Terry Nickerl, Cheryl Evans
You can dress us up (kind of)…but you can’t take us just anywhere…unless… it is to the “fish camp”… in a trailer park…on Dead River…in Tavares. 

As we turned off the highway all I could think was OMG “Where are we going?” Although I had been thoroughly warned about what to expect,  there are truly no words to describe that “oh crap” feeling when we pulled off the highway passing by rusted out trailers that have seen better days,  grungy unkempt small cabins and “once upon a time-but not any more” bungalows. The only thing missing were the “Dueling Banjos” from the movie “Deliverance” playing in the background!

However, once seated on the dock in mismatched lawn chairs around a rusty metal table, under huge ancient cypress trees with giant clumps of Spanish moss hanging just above our heads the attitude was obviously relaxed easy old Florida at its best.  This place even displayed its outrageous colorful characters you could only find in cheesy movies about the South!  One indescribable fellow, that I never determined if he officially worked there or not, darted back and forth between the outdoor grill and the docks, shooing away the coots, egrets, herons and all of the other water birds that gathered looking for free handouts.  He looked to be in his 50’s and wore knee high glow in the dark yellow socks with big red polka dots, dirty high top keds, plaid shorts and a baseball cap!

AHH…. This is the Florida I remember as a kid. This was the real Florida “experience” that you could not possibly duplicate at an amusement park. This is the Florida where 3 slightly tipsy old high school friends and one delightful young lady can look out over a lazy river, sip cheap wine, swap old stories, had some of the best steak I have ever tasted and celebrated Mary’s 60 something birthday!  It was so much fun! 
"The Kind You Can't Afford"  Madeleine Peyroux