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 am here to celebrate my life, to uncover my fears, to hold on to love, to grieve my losses, to laugh long and hard, and to learn how to live a full magnificent life with heart failure. I am honoring my creativity, and exploring all of my emotions out loud ...before anyone can say....."Don't talk like that!"



Friday, August 31, 2018

where is the line?

This is the place I allow me to let it all hang out.  Typically I reveal my emotional state, lessons I have learned or just my peculiar left-field observations in a raw stream of thought writing…rambling…no rules, no subject out of bounds and no emotions off limits.  But this week I have come across something that caught me off guard, although it shouldn’t have. That has been the double-edged surprise! It caught me off guard! How the hell did that happen?  Is this the real beginning of emotional vs rational intellectual.  I have been unable to share this week’s event, quite frankly because I have not processed it yet...Damn...I hate that word “process”!  It is the perfect socially overused excuse I find myself using to avoid exposing my own vulnerability.  The past few years have been one hell of a journey and for the most part, I can emotionally flip my crappy experiences around with some sound intellect and a little humor into life-affirming lessons to myself.   But this one has me stumped and I worry ….have I been oversharing?  Have I just found that line? or does it even matter….
"Don't Let the Sun Catch You Crying"  Jerry and the Pace Makers

Thursday, August 30, 2018

…and then there are the days that life will just march up and smack you up side of the head!

…and then there are the days that life will just march up and smack you up side of the head!                    I somehow manage to elude most of them, but one of them snuck up on me yesterday and took me out.  It was not a disastrous incident, in fact, quite the opposite.  It had been discussed and a reasonable intellectual decision had been pretty much made months ago.  But the outrageous (and not so pretty) emotional meltdown began when it was deemed medically time to implement that decision.  I am telling you…none of this is for sissies, and I have the best medical and family support EVER…I cannot imagine doing it any other way!
"Tubthumping" (I Get Knocked Down)  Chumbawamba

Wednesday, August 29, 2018

Are you drunk?

Wish I could claim authorship on this one…but it is really funny… “Are you drunk?” Sometimes the best stuff is simple and rather understated!

…RED FLAG…here comes the bitching….I have decided that I need to devise my own little questionnaire to post on a daily basis. I really like this one just need to tweak a few questions.   This is going to sound horrible because I am so truly grateful to have so many friends and family that love and care about me, but (you knew the “BUT” was coming)  each and every day I must be asked at the top of every conversation…”How are you feeling?” or  “Did you see the nurse today, what did he say?” and  ”How is your BP, heart rate, energy, tummy, swelling, breathing etc….etc?” (pick one)   You get the picture… Rarely does a conversation begin with “What color are the PJs you wore last night?”  “Want to go to_______?” (not sure I could go but it’s nice to be asked) “What are you working on in the studio or at the sewing machine?”  Or EvEn…. ask me  “Are you drunk?”  When an illness becomes part of your life every day, every once in a while, I just want to forget about it, pretend it does not exist.  Perhaps my questionnaire’s first question should be, “Do I want to talk about it?” or perhaps  “Am I childish?” may work,  I am teased and accused of that fairly often anyway!  Every once in a while let me drift off into my own goofy fantasy… I get a belly full of reality every day and it seems to be there whether I participate or not…there are times I would rather NOT, but I do not want to hurt your feelings either…and I do appreciate that you care.  xoxoxo
"Bitch" Meridith Brooks (acoustic)

Tuesday, August 28, 2018

...then it is ok.....

Maybe it is the full moon…maybe it is Burning Man week…maybe it is the new book I am reading….but I am feeling empowered!  I used to read things like this statement and think how selfish.  I was taught early to that making others happy was my most important job as a woman.  Husbands, children, the family were all to come before my needs and wants.  And eventually, after years that translated in my heart to I am not important. Then all of the sudden I realized that I am important…I am worth being important to me and if it turns out that I am the only one that feels that way…then it is ok.

"Waiting for my Real Life to Begin"
Colin Hay

Monday, August 27, 2018

Sure wish I had done it sooner!

For the longest time…I kept my personal feelings off of FB.  Actually, I was (and still do to a certain extent) using FB as my primary marketing tool.  I would have risked losing potential customers by posting personal or political opinions. 

Things have changed, and the further I go down this road, the more I realize that my voice and opinions are still unaffected by this disease and I plan on using the “hooey” out of them!  What has been wonderfully remarkable is that all kinds of interesting, eclectic, thought-provoking and fascinating people and posts have appeared and I am asking why did I have to get to this point to really speak my mind?  (because I was afraid they would not like me….now…it doesn’t matter if you like me or not!)  It is the most exciting breathtaking freeing feeling!  Sure wish I had done it sooner!
"Light on"  Mark Ballas

Sunday, August 26, 2018


This time of year, every year I swoon and I wish I were in Black Rock City at Burning Man. It may be one of my biggest regrets....I never went.  First, it was just sheer logistics and money and now my body could not, or would not tolerate the harsh environment.

Burning Man is an annual week-long experiment of radical self-expression. They create a temporary community in the middle of a Nevada dessert dedicated to anti-consumerism and creativity.  The Burning Man art festival, which attracted more than 70,000 last year, always culminates with the burning of a large wooden sculpture of a man.  I am now and suspect I always will be a pseudo burner, there in my heart and imagination watching the festival on its’ live feed and admiring the mind-blowing art installations from other’s photographs.   

Friday, August 24, 2018

I am still here....

On a daily basis…I ask myself….”What Next?” I mean it may sound silly, until you are in this lousy boat.  Like do you start any long-term projects or relationships? Well Hell…do you start anything at all?  Will I get to finish them? I have asked myself that a thousand times …ummm,  that may be a bit of an exaggeration, but I have thought about it many times, at least…the emotional part of this is worse than the physical part.  There are all kinds of explanations for the causes and how to deal with the physical stuff…but the emotional part…there is nothing.  Well, that may be an exaggeration, too.  There has been some support from hospice, like getting the final legal stuff and funeral crap in order, and that is a good thing, it does bring me some peace. The “real” this is how I feel or I want to feel is sorely ignored.  Hospice has a program to help my friends and family members deal with this…But I am in the corner screaming….What about me?  It is like the world is shouting, just shut up, it is uncomfortable for everyone, no one wants to hear about this.  But I would give a million dollars to know that someone else feels the same way about their own end of life that I do.  Grieving the life I will not have, while I am still here…It is crazy isn’t it?
"Have a Little Faith"  Michael Franti

Thursday, August 23, 2018

I Felt like trying anyway!

Everything comes with a price tag…after a spectacular week at the beach with all of my boys and then a masterful art opening with friends and family the bill came due.  And I am finding my body has less of a “bank”.  I will confess I would much rather “do it” or at the very least, try and pay for it later.  I am always afraid that if I wait, I will not get the chance again and there is already so much in my life that I regret not having done!  Today I turned a  corner and was just beginning to claim my energy back when a small Ray of sunshine poured into my life and I felt like I could do anything again…well, I felt like trying anyway!  My life is just full of those wonderful unexpected gifts!  Thank you!

"Try"  Mandy Harvey

Wednesday, August 22, 2018

It's enough...It's plenty!

Sometimes I come across something that just says everything  I wish I had the words for…
this is one of those times….
"Give Me Peace"  George Harrison

Monday, August 20, 2018

Another Soapbox Moment...

Here comes another soapbox moment!  I think we (collectively) do not understand the difference between “curing” and “healing”, and there is a HUGE difference!  Our medical industry has become so proficient at “fixing” just about every human malady that we have confused those 2 words, and virtually eliminated the concept of healing!  What used to be life-threatening pneumonia…is now “cured” with 4 days of antibiotics.  Healing has been lumped in with curing and lost its amazing meaning and concept! 

8-18-18...18 Artist's Way Alumni celebrating 18 years of the Artist's Way at the
Casselberry At House, and donating the new door to creativity!
and yes...we are wearing tiaras!
In my world, I have found that curing is what happens to our physical bodies.  Medications, surgeries, treatments, diets and all other alternative therapies will either eradicate or relieve the symptoms.  But healing is what happens to your mind, soul and/or spirit!  Curing presupposes that your life and your body will return back to normal or the way it was.  The reality is sometimes that does not happen.  It is simply the way of things.  But in a world of rampant litigation that assumes that anything less than perfect is cause for legal action.  I am not saying that there are not situations that litigation may be the way to address irresponsible medical doctors and facilities, but there is a big big difference between negligence and a human condition that cannot be cured.
Healing, on the other hand, is available to every person and physical situation.  It is a process of accepting our physical problems will always exist and life goes on. How we choose to move through it IS a matter of choice! Healing is the process of understanding the cards that have been dealt and still playing.  We have all seen a poker player “bluff” his way through a terrible hand and win anyway! Healing is a choice! Doing things and participating in activities you do not think you can do and then not only getting through them but enjoying them is healing.  I have accepted that I do not need to do things as well as I used to and that can be horribly frustrating and depressing, but doing them anyway has become the most “healing thing” I could possibly do!

Healing does not come from the doctor, the hospital or a bottle of pills…it comes from the heart and soul….you just have to choose it….and I choose art and creating and being around those that celebrate creation!
"Heart of a Hero"  Cathy Heller
This is one of my most favorite 
dance while no one is looking songs, 
yep... I am dancing right now!

Thursday, August 16, 2018

It seems to be as much a part of who I am as my own right elbow!

Last summer I officially declared that it was the last Artist’s Way Group at the Casselberry Art House, I had done the same the year before at the Leesburg Center for the Arts.  I figured it was time for me to begin directing my time and energy towards my own passions. 

So, to find myself curating another Artist’s Way “Celebration of Creativity”…was unexpected…but here we go!  I do so enjoy being around other creatives, and did not really realize just how much until this came around…

It has been so very fun putting this together, of course having the artists step forward with amazing works and to hang was such a great help.  They are all awesome!  I am so very very lucky to have such an amazing tribe.  Is this the last time I do this? Maybe not…I thought last summer was the last!  I think from here on out I will participate in every opportunity the Universe puts in my path and revel in the health and strength to do them!  It seems to be as much a part of who I am as my own right elbow!
                                                                                     "Do it Again"  Steely Dan

Tuesday, August 14, 2018

Just the Right Amount of "Sameness"

or….everything changes.

There is something very safe and comforting about “sameness”.  I am not saying that it is something that I aspire to; just there is a place in my life that I do like some repetition.  Until this past week,
I would have railed on and on about how I hated it.  But I am thinking that some “sameness” becomes the anchor that holds me in place and gives me a safe location to come back to.  I suspect what creative success I have had and my courage to travel the outdoor art festival circuit, maybe as simple as living in the same place for over 40 years.  Changes in my life and heart failure do not seem quite so scary when I have such a wonderful “anchor” to come back to.  So life goes on, but it goes on with a bit more color, enthusiasm, excitement, anticipation, and pleasure because I have just the right amount of sameness!

"Groovin"  War

Monday, August 13, 2018

...and would do it all over again in a heartbeat!

The beach week is over, unpacking and laundry are underway but I just had to stop one more time to enjoy some of the pictures and memories!  The boys were so much fun and so well behaved! What a joy to get to spend time with each of them!  And oh my… they grow so fast! The whole week was a magnificent day after day of smiles and laughs laced with great food, sun, and water, but there was also wonderful after dark “grownup” time with a few drinks and the best conversations!  It just could not have been any better. Thank you Skip, Jason, Steph, Oliver Owen, Steven, Cooper, Cathye, Jacob, Adrianne, and Larry, you all made it perfect!  Leaving this year was so so hard! Each time a yearly event or holiday comes there is a horrible voice in the back of my head that screams this may be the last time I get to do this.  That voice was really loud this year and that may be what made this year so extra special and at the same time incited the tears as we left, but I would not have missed one minute of it! (and would do it all over again in a heartbeat!)
"The Time of  My Life"  from Dirty Dancing

Friday, August 3, 2018

Without regret!

I really really wish I had figured this one out 50 or so years ago!  I have wasted so much of my life caring about what I did or how it looked like to others. Being a part of a group that just did not fit me,  churches, art groups, women’s clubs, political parties.   I admit I have always worked outside most of the boundaries, but if you only know how much courage it took if you only knew how I grieved about would they like me or my ideas.  How much time was wasted worrying about “them”?

Things have changed, and so have I!  I mean…what is the worst that can happen? I die?…and that is going to happen anyway….so why not! It is time now to do what I should have done 50 years ago, let go, enjoy, party. love, live…without regret!
"They" Jem

Wednesday, August 1, 2018

I do have my own crown and a crystal tiara!

and….I do have my own crown and a crystal tiara!

I will coordinate and hang what will probably be my last Artist’s Way Creativity of Celebration; however, I have to confess I thought I had done this last year, too.  It truly came as a last minute surprise, more like somebody at the city did not take our group off the yearly exhibition calendar…it does not really matter I am tickled to have the opportunity to do this again.  It has been a bit weird doing it without having the classes that go along with the planning sessions, so there is a bit of angst that comes along with this. In addition to the normal pre-installation worry,  I find my head and my heart reaching back and remembering all of the fun we have had over the years, the times I tried what I thought were really stupid things, umbrellas, kites, stools, clocks, boxes  etc… sure that others would make fun of me, but I  did it anyway.

 So I am not going to worry about what this body will or will not let me do….like it used to.  I am just going to go in there and do it…I am surrounded by people that will help me and not think I am weak or failing…. I am going to enjoy this!... I will not let this fear steal this magic experience from me! (until maybe next year….lol…)
"Reflections"  Marmelade