All politics aside, there is still much to be said about,
manners, diplomacy, common decency and just plain basic respect for one
another. Clearly, by his own actions, these
are qualities our current president does not possess. I suspect when history looks back on this
time, they will shake their heads in disgust.
He should be a shining example of what our country and people stand
Life has been about a vicious cycle in the last few
years. You can see how it somewhat
follows the Elizabeth Kubler-Ross model of death and dying, but I am certain
when this was written it was not about chronic terminal disease. The frustrating part is that you do work
through the “steps” of denial, anger, bargaining, depression and finally
acceptance. But then you find that
acceptance sucks and denial feels so much better. I am going to be better to my precious life
and chase some dreams, I may not be able to break this cycle but just
recognizing that it exists and where I am in it I am hoping will make a good
change in my own day to day expectations! I want an exciting, unique and precious
life and I need chase some more amazing dreams!
It was busy busy and at times overwhelming for me, I can
only imagine how it must have been for Harper!
I was taught ages ago (I will NOT be defining the term ages)
but as a young person, I grew up in a world that the mere color of your skin
determined where you could and could not go.
I did not question, it was the world I grew up in. As a teenager I moved from a small rural
southern town to Miami. It was a
different world, and I was in shock. Desegregation
MEANT desegregation! My new school was a 50/50 mix. I met and learned I was not different or better. It was not just skin color but ethnicity, too! The Cuban crisis was still “fresh” and I was introduced to a new culture and language too! All of it was different, scary, and wonderful at the same time. 
Ok..Ok… I confess….I have not been to the gym since 2015….and
the cupcakes/no pants, last week! There
is a distinct possibility that my life is more out of balance than I originally
thought.
I have arrived at a point in my life that I could kind of
sit back and enjoy life, perhaps have a chance to retard maybe even reverse the
growth of the WTF wrinkles with the latest and greatest anti-wrinkle products.
I am not sure I have ever been so grateful for “ALT”
TV! 
For those that think I have my shit together….all I can say
is….I believe they are still accepting nominations for this years “Oscars”, I’ll
send you the form, you can write in my name!
I have heard this all my life, gave it lip service all of my
life, but did not really understand what it meant until recently. I think I have mentioned before that the work
has almost become my secret language. I
can say just about anything I want to say, regardless of how rude, opinionated,
or inappropriate it may be….I can say it.
The fact that most will not understand it does not seem to make a
difference to me….I just need to say it…and it does feel very good to say it.
It has been a week (and then some)….I had all but thrown my
hands up and said “I quit” it has been a really really hard couple of
months! Then after saying “no” I am too
sick to do Nude Nite this year….I asked myself why…..why not? It is doing what I love doing. Creating and
painting may just be how I have learned to love myself. The last few days have been particularly
brutal, failing frequently trying to
create something new and different (for me).
I am pooped, I am sore, and my brain is “mush” but I have finished, well
finished and satisfied enough to
photograph and send into the jury. 
This works….I know it does! Well, it works for everything except
for cellulite. Creatives seem to have
some of this kind of thought process automatically ingrained in us….but I suspect
we all do! I think we become afraid that
our own thoughts and/or wants will make us different and not fit in with what
others think we should be…. We cave into
the social pressures of things like church, family, community, doctors, lovers,
friends and this list can go on and on and on.
But as we get older, we have to answer the question, was this the life I
wanted to live. Think, feel, imagine…I am creating myself!
Yea….that does sound like a critical “Millennial” kind of
thing, the “it’s all about me” mentality. But at the risk of sounding like I am
bashing the “Millennials” often times their point of view has some merit. But like everything else in life, we all need
a little moderation and balance!
Week #2 and still champions! I claim “we” like I make a significant contribution. The reality is, every once in a while I do
manage to contribute something no one else knew, but it is not enough to really
make a big difference. I have to tell
you that the pressure is on! For years
the 4 of us went out on Tues Eves, only because a local pizza place had 50 cent
beer….woo-hoo! But….they have sold the restaurant and the new owners stopped it….OH
NO!!!! So, We tried Smokey Bones, for their
happy hour specials, nowhere near the deal and the food was more expensive….this
was not going to work….THEN…they announced they would be playing TRIVIA... first
place $40 gift certificate,
second place $30 and so on. We
figured if we could win our beer money back we could keep coming here on Tues! There is a serious motivation to WIN….and it’s working!
In the words of Elvis….”there’s a whole lot of shakin’ going
on”! In some ways…this speaking about what I want is a fairly new thing for me…..I think I have always "spoken" but it has been in writing....right here. Here writing, I can speak
without judgment or question…just let it rip!
I think my heart has been
speaking here …..no it has been shouting here! Shouting about my loves, my passion for creativity and
creatives for quite some time. In fact
on some level, I think creativity is why I am on this earth, it has and I suspect that
has always be my passion and purpose!
But just so you know….my voice shakes like crazy when I try to speak
/ask about me and how or what I want for this part of my own life. I have become horribly clear about what I don't want any more, now I have to figure out what I do want!
and I get it....the goofy award of the year, for yesterday’s actions,
or lack there of! Jason, Steph and the
boys stopped by on their way from their BIG Universal Christmas weekend, for
gift exchanging and opening, and then Darren, Jill & Harper came over with
gifts to share in the fun. All 5 grands
all and all 4 children (the boys and beautiful wives), and I was so busy having
a great time that I did not take my camera out.
No one did! Not one pic of one of
those rare times we are all together!
But rest assured it was the most amazing gathering of Evans! So much fun having them all here, the laughing the excitement was music for
my soul….having little people rip unceremoniously into packages, squealing with
delight, torn paper and empty boxes
everywhere! If only for a little bit….they
all came home for Christmas…for real!
How lucky am I?
Yesterday I got a call from the Vitas chaplain/spiritual advisor requesting to come for a short visit. Although I am officially a card carrying "heathen" (aka non-christian yet extremely spiritual). I thought, at this point, why not, what can it hurt, could be interesting? In an hour or so a huge man was at my front door introducing himself. I invited him in, and we chatted for a few moments, he asked about my spiritual beliefs and I briefly summarized my less than typical beliefs. He was quite understanding and open to my spiritual bend and I was thinking this could be an interesting learning experience for both of us. As conversations go, I returned his inquiry with what I felt was an equally appropriate question of my own, asking how he had come to choose his less than typical spiritual practice as a hospice chaplain.  |
| In his wrestling days! |
Oh my there has been chaos this week! It is that time of year, and another Insurance
company is leaving the state of Florida…if you have been paying attention to my
(sorry about that) grousing lately, you already know that this is the 3rd
year in a row that the company that has covered me has discontinued service in
FL and it is a total pain in the ass to find a new company. This year it is even
more complicated because none of my current docs or hospitals are on the 3
current companies I can choose from. It has made me consider different
alternatives. 
You would think after all of this time….this is a concept
that would be a part of every one of my decisions, and sadly it is not. However, every single time I make a difficult
decision, that often goes against the grain of what is “normal” or what others
feel is not the right decision, I am rewarded almost immediately with this wonderful ah-ha! When all of the angst and worry is gone, it
leaves this huge empty space in my heart and joy just rushes right in! It is the most amazing thing! Now, if I can only remember this for next
time so that awful angst and worry does not hang around so long!
Taking my power back....without permission!!! Well that is not entirely true…seemed like I needed
about 42 other people’s permission, well
that is not entirely true either…but it
sure did feel like it! There was a late
afternoon call from my regular docs office asking if I could come in as see
them the next morning….I know….I know….when is the last time that happened….NEVER! I figured if ever there was a sign from the
Universe….this was it…I mean a doctor calling me for an appointment! To make a long story short they are working
with hospice to provide palliative care for me.
My heart has been singing, there have been tears of joy and I feel like
for the first time in years, that I am being heard, that what I want matters, I finally have some control of my life….OMG it
feels so good to take back my power over this disease, this heart, my life! I am thrilled, there could be no better x-mas
gift! And I am happy dancing!! Yes!
I am not giving up, I am living! Today was the day I have been hoping for, wishing
for, begging the Universe for! Today is
the day I officially stepped off of the curative-care medical merry-go-round
and can finally, finally begin living the best life I can. No more PET scans, heart caths,
echo-cardiograms, stress tests, surgeries, defibrillators, hospitals, cardiologists
or endless insurance/doctor billing nightmares.
Today I officially begin palliative care! Not yet hospice, (got way too much to do
before I start that) although this palliative care will fold into it seamlessly
when it is time. Today (well technically
Jan.1, 2017) I begin living my amazing life from the place where I can quit emotionally,
physically and financially chasing the ridiculous naïve goal of curing heart
failure. Today is the day I get to begin
living the best life possible with the medical (medicine) help I need! NOW I stop wasting my energy, my time and my
money on the manic struggle of curing the incurable and begin spending all I
have, every single bit of it…. on living…playing…loving…and creating! Today the rest of my amazing wonderful life
begins! I am not giving up….I am
starting over with a new goal of having the most remarkable life I can possibly
have!
…and I am going to do it again! I know both sides of the
coin now! I know how the absolute worst that can happen feels and it sucks a big one! I am not making light of it, but I survived,
I am stronger, and I have learned. This
is what I know…. the smiles the giggles and the joy of laughing are worth the
risk! Nothing great in my life has ever
been “risk free” but it has always been worth it! Smiling, giggling and laughing!
