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!"



Saturday, September 14, 2019

if one more person tells me...

Spinach Artichoke Ravioli Bake
The last of your leftovers….I struggled with your goofy food preferences all of our lives…you would eat little meat except for fast food hamburgers (which only proved my suspicions about was that really meat in those burgers), ham sandwiches, an occasional steak, and NO leftovers. Leftovers was not a problem when the boys were home, but when it was just the 2 of us, recipes for just 2 people were difficult to find. I would make the full recipe serve half then freeze the rest, bringing it back to life weeks (or months) later.  For some reason, “leftovers” in your mind seemed to be a “time thing” if you saw the same food within a week it was officially a leftover…and a no go!  More than a couple of weeks and you were good with it.  I always thought I was tricking you, but you had to have known. 

Last night for dinner I had the last of your sneaky leftovers. It was somewhere between a funny memory and celebration of you but it quickly degraded into tears and mourning your loss all over again, just from a different perspective.  I keep asking myself will this pain ever stop, is this weird?  

And if one more person tells me that we all grieve differently and for individual amounts of time, I think I might hurt them….I just need to know what will normal look like and will I ever get through another day without the pain and the crying again?
"We May Never Pass this Way Again"  Seals & Croft

Friday the 13th....DONE & DONE

Is this the New normal….old people hampers, wheeled trash cans, security cameras, Friday the 13th, attorneys, full moons and all without the love of my life?  The only thing I want desperately to change is the one thing I cannot.  Most of this other crap is just stuff that I have got to do and I truly hate it all…except for the full moon…Full moons have always been a source of strength for me, and perhaps that is how I ended up in the attorney's office signing wills, establishing life Deeds, and other dead and dying business, etc.…etc. of Friday the 13th.  There was an unexpected ending…. At the end of the day a young man and dear friend of Skips stopped by.  This was an unlikely alliance that developed into one of the most unique friendships that I have ever seen. It was more than just friends/workmates and more like grandfather/mentor and young strong intelligent man…a perfect compliment, sincere respect for one another and they truly just liked and enjoyed each other.  But more than that he was the young man that literally held Skip in his arms as he died. Although I was “told” what happened, never by the one that was actually there and the story was quite different and so very touching.  It was a bit of a shock to hear things I had not heard before but in the end…much better to know that Skip did not die alone. I truly believe now he waited for Kevin to get there, and he was in the arms of someone that cared deeply about him and that had the strength and intelligence to do what needed to be done. Thank you again, Kevin!
"I Try"  Ben Taylor

Friday, September 13, 2019

Friday the 13th....

Friday the 13th has never really been a big deal for me….until.  And I am still not sure.  In legal preparation for my own death that had been suggested by hospice, we had transferred all of our joint assets into Skip’s name with the intent of avoiding probate and all other legal transfers.  IT BACKFIRED!  Skip died without a will and everything in his name.  It has been a legal nightmare, but today it is finished and ready to be filed with the courts and for me to sign and execute my own will…and I am re-thinking this Friday the 13th business.
"I'm a Mess" Ed Sheeran

Thursday, September 12, 2019


Rings...Mine were not perfect and sometimes lost  ... but always without a beginning and without an end.

Over the years, besides my wedding/engagement ring there were 2 more rings that I wear that are truly significant to Skip and I but that is another story.  I had misplaced ...lost my wedding /engagement ring several years ago.  When they implanted the SCID defibrillator in my chest I could not wear metal during the surgery or for several days afterward., and then again at some of the monthly recalibration sessions in the cardiologist's office.  I always left my other rings in Nana’s antique teacups in the china cabinet, but afraid to forget or lose my engagement/wedding rings I but them away in a “special” place that I would not lose.  It was such a good special place that I forgot where it was...and that seems to happen a lot more recently.  Over the years although I worried and wondered where they were, always afraid they had accidentally been really lost, but always reassured myself they would turn up.

There has been a new and rising need to find them since Skip died.  I wanted desperately to have that feeling of a new love and the ignorant excitement about beginning a life together at 21 and 23 years old.  I cannot explain right now exactly how or why, but Skip is still in the home that we spent together for 41+ years together.   He does not talk to me with words, nor do I see him. With my eyes, but I “feel” him.  He is everywhere.  The house is full of him, in the furniture we built together, the tiles we laid, walls we painted, doors installed and on and on and on….it is as strong and as close to tangible as I have ever known.

Yesterday, after working all day, cleaning the clothes out of his closet and chest of drawers for the charity truck to pick up, my fingers swelled (per normal) and I moved my rings to smaller fingers before they got stuck.  As soon as my empty ring finger was “naked” he showed me where our wedding/engagement rings were. ...and that is exactly where they were. This part of us is back on my hand….and although there was a definite beginning and lots of stutters and screw-ups, we will have no end.  And that sparkle that catches my eye reminds me of your smile.

"Ghost" Indigo Girls

Wednesday, September 11, 2019

My Heart Just Knows..

You might think I am nuts, and there may be 42 other explanations, but my heart knows what this is.

This silly mobile hangs over my bed. The mechanics of the mobile is a Guggenheim Museum souvenir gift shop goodie my Mother bought when we were in NY 10+ years ago.  She added some of her homemade artsy chachkies and gave it to me as a gift.  Later, I added the whimsical irreverent angels that she would tie to my Christmas gifts. It hangs over my bed and it felt my mother watches over me as I sleep.  

All of this hang from the ceiling fan pull (the fan part turns on at the wall, but if I want the light on, I have to pull the short-chain). I could no longer reach over the bed to pull that chain.

I found this old bell partially buried in the yard.  It had been a part of an old wind chime that had broken in a storm years ago. I just knew if I cleaned it up it would make a great "light pull" chain extender. It was a rusty mess after being outside in the ground and even after I cleaned it up  I could not break loose the rust inside enough to loosen the ringer. I finally gave up and felt that it really was not important, I just needed something that I could grasp to pull and turn on the light…ringing was not necessary.  So the whimsical mobile and the silent bell have hung there for several years, protecting me as I slept and making it a bit easier to turn the overhead fan ceiling light on and off. 

Two days after Skip died, that rusted bell just began to ring.  Sometimes it barely tinkles other days it rings loud and hard.  But Skip talks to me, on and off, all day, every day. I do not understand the language, but I know the intent just by the intensity or softness of the ringing.  He is still here with me, in a way I do not truly understand, but it does not matter, I know it is him and it is the most loving, cherished, comforting feeling.  I wish I could explain it better.  My heart just knows.
"One Less Bell to Answer"  5th Dimension
Yesterday was a quiet day alone, in his room going through his drawers and closet, sorting and having my own quiet tears and memories of when he wore it last, what he/we were doing, bittersweet remembrances.  I could hear his bell in the next room, not certain if he was sad I was having to do this or telling me it was ok and wondering if and when this pain will ever end.  

Friday, September 6, 2019

Not in his shoes…On his shoes

The most amazing things about Skip were not the things he did in public for others to see but all of the little moments. Yesterday, as I begin again, to sift through his things to give away, or donate, or keep, or…I just do not know...I ran across his old top-siders.  They were worn out; the stitching was coming loose and the soles were reduced to cardboard!  He got new ones some time ago, and I thought this pair had been pitched. But there they were in the bottom of this closet behind tons of “stuff” and I do not think he ever intended anyone to find them! There were the shoes that he and Harper (the first and only granddaughter, after 4 grandsons)  drew on Thanksgiving 2017. While the 2 of them were chalk drawing on the porch waiting for turkey dinner to be done, Harper reached over and began drawing on this shoe.  Rather than telling her “no, we do not draw on our shoes” He took his chalk and drew on his other shoe. These are the gifts and the memories, he continues to give me. I do not ever want to forget and I want everyone to know, he was so much more than most people ever really knew.

"Daughters" John Mayer

Monday, September 2, 2019

...with time

This storm is adding to the challenges of being alone for the first time in 46 years.  I feel like I am being “tested” and it sucks! The fact that the storm is just dragging and we are in a state of limbo just ads insult to injury.  Although I take some solace in the fact that the storm track is better than it was, however being 40 miles away from the coast (as the crow flies) any little change in track can make a big difference…I just want it to be over!  I did get a thumbs up to “stay in place” and not have to spend the storm at a Hospice House, they have much sicker people than me.  I have a safe room, a wonderful new big generator and a portable AC, and my big window is boarded up. I will get through this, but I need Skip here with me…I know this is going to take time, but it just does not seem to get any better. I keep trying to believe that with time…

"All Alone With Something to Say"  Bonnie Rait

Saturday, August 31, 2019

I do not know how to do this….

About the time that I think I am ready to begin moving into a “new normal” waves of grief, guilt and just plain fear overtake me and I fall apart all over again.  It takes the smallest unexpected thing to ignite the insecurity and grief.  Yesterday a wonderful thoughtful picture sent from an artist friend of Skip helping us sweep up the confetti after last years Artist’s Way Celebration of Creativity.  It was the same exhibition I was going to last night and my first real social outing. All of a sudden I was incapacitated and melted into an emotional pitiful blob.  I was determined to be strong and push through…I did go, I just could not stay…I was overwhelmed and afraid…I am just not ready.  I am not ready for a world that he is not in…I do not know how to do this…
"How Can You Mend a Broken Heart?" Al Green

Friday, August 30, 2019

Nothing in this world....

There is absolutely nothing in this world that came close to preparing me to suddenly and unexpectedly lose the love of my life, the man I spent the past 46 years with, the father of my children, my best friend.  There are no words to describe the pain and the loss and the feeling of being so alone, even though my life is filled with people that love me and loved us. The hole in my heart and my life just seems incomprehensible at times…but I know somewhere in my heart that there is no choice but to move forward, honoring him, making him proud of me by being strong. 
I love and miss you so much….
"I Will"  Ben Taylor

Wednesday, July 31, 2019

Perhaps I need to re-think this spanking thing!

It was such a weird day!....I have been wrestling with this really pesky issue of holding fluid…disgusting amounts of it! My heart just is not strong enough anymore for my kidneys to do their job.  I really do look and feel like “Sponge Bob Square Pants”.  One of the ways I handle some of the physical changes and my creative frustration is by sewing new clothes…I may look and feel like crap on the inside…but honey…I still want to look good.  I have a “stash” of fabrics…I confess that I may be a serial “saver” (a.k.a. hoarder) I have a laundry basket that is full of fabrics that I have picked up over the years with no particular plan in mind…Usually, it was a “sale” I just could not pass up. These recent sewing projects have made great use of them.  I have made quite a few simple summer dresses, but this week I  made a pair of simple elastic waist loose (comfortable) shorts.  And proudly put them on in the morning…only to have them fall off of me and I do mean fall apart and fall off of me…the damn fabric had apparently rotted while sitting for years waiting for me to decide what to do with it….This was truly a first for me! Rotten shorts!....who knew…and what’s more, how did I not realize it while I was sewing?  JEEEZE!!!

Then the nurse came… And there are more med changes…that is not necessarily a bad thing, in fact, it usually means I will be a bit more comfortable or have a little more energy, but what it does always mean is that my heart is getting weaker. AUGH!!!

And then finally…my laptop (8 months old) crapped out!  Yesterday’s error message….and a new one for me was “NO BOOTABLE DEVICE”.  Luckily, I have a computer Guru for a son!  I described to him what happened before the rude error message and he instructs me to close up the computer, turn it upside down on my lap, then smack it a couple of times on its backside….  ARE YOU FRIGGEN’ KIDDING ME!!!

And it worked…(the hard disk apparently had just gotten a bit out of “flat” and was not spinning). 
The only thing that I was able to fix, make work or feel better about is literally
the thing I spanked! 
Perhaps I need to re-think this spanking thing!

"Won't Get Fooled Again"  The Who
3 things... shorts did not fall apart in front of anyone
...if these meds work it will be sooooo much better
...the computer works.....YAY!

Monday, July 29, 2019

Making NEW ones...

This is not an “OH POOR ME”…although I will admit I am really good at that!  It seems to be turning in to a confession to myself about why all of those wonderful class “inner child” talks, suggestions, exercises never ever worked. Actually, they were horribly depressing, there was nothing in my childhood that felt loved, supported, good or freeing. Rather than admitting that to me or anyone else, I would just smile and BS my way through the discussion and then walk away from it.  This morning this unedited quote popped up on FB…and without anyone here to even see, I began the “knee-jerk” smile and walk away performance to cover my real feelings and theatrically produce the appropriate emotions.  There is absolutely nothing in my childhood that I loved, not dancing, flowers or fireworks.  There were, however, several unsuccessful suicide attempts.  Never any counseling, just parental punishment for doing such a stupid thing, then threats that if I told, everyone would know it was my selfish way of getting attention that did not work. If others found out they would think I am crazy.   I was shamed and told I would never have any friends or boyfriends if I told anyone…I never told… 

That is not what I want to “call back” to enrich my life.  I am learning that through music, more listening than playing (but doing that too) I do not have to bring up old memories and pretend they were good, they were not! I know trying to forget them still does not make them go away. BUT… I can make new ones…happy ones…loving ones…and I think that will serve me well!

"Just Like a Woman"  Eric Bibb
3 things
...Living in the past will not help the future
...accept that it happened and it made me stronger
...admit it and then let it go, when you can