or...maybe it is just me.

 Yes, I know…I have been silent recently, just happened, no particular plan.  There have been “things” going on with my heart that have required attention and sometimes that just takes over my life.  In the activities to normalize my heart function it was necessary to have someone with me all of the time and I am indeed grateful for my sisters and friends that are more than willing to do that for me, but I have also realized that even in the company of loved ones I am lonely….and lonely is not something that has ever really bothered me, in fact alone in the studio is wonderful.  It has been a strange week as I try to figure out why.  The Jung quote has kind of given me a start, not the part of holding certain inadmissible views, as an artist that is kind of part of the job.  I think it is communicating things that seem to be important.  As this disease becomes more a part of my life, it is difficult to talk about, even the professionals that are spectacular at providing physical care do not seem to have the time or ability to talk about the emotional side of dying.  For some reason, it feels like most feel like we should just lay down quietly, that at some point the diagnosis is an accepted fact.  The FACT is that it is a gross violent emotional swing between…. I cannot let this happen to me and I am tired and I just want it to stop. Somewhere in-between those 2 opposing feelings,

I need to comfort those that do come close to me.  It is crazy confusing and no one seems to recognize the frustration, or….maybe it is just me.

"Me" Paula Cole

Yes, I had the time...

 
And there comes a time when I realized how much of my life, I spent doing this.  It was not how I saw it at the time, I saw it as sharing my gift, not begging for your attention, admiration, and love.  I rolled up all of my inadequacies in a bubble of good helpful intentions, which should be a good thing.  But in covering up my shortfalls, I ignored my own authenticity. And the bill is now coming due....Not to mention Blogger is updating and changing the rules....AUGGHH!

You had time...

Annie DeFranco

Cannot explain it better!

I could not explain this better, so I will not even try!  

“When sudden death erupts into your life, your whole way of understanding the world is rocked. Previous interests – even things you loved – can seem futile.

For many people, year two is worse than the first: your systems begin to come back online, your gaze is just slightly lifted from your feet. You’re aware enough to know you aren’t where you want to be, and still broken-hearted enough to not be able to do anything about it.

That you want something different for yourself, even as you have no energy to find it – that is the beautiful place. That’s the place to lean on.

If there is any glimmer of interest, any spark of light or fascination, lean into it. Want that for yourself. Take notice of what draws you, right now, and follow it. One tiny little glimmer at a time.

And sometimes, there are no sparks. The world is empty and full of things that make you cry. You want it to be different. It isn’t different.

You can’t fake interest. At the same time, you don’t want to be this way. Being angry at your own broken-heart is such a tricky thing. It turns into this giant, escalating storm: tears. Then angry at tears. Then angry at yourself for being angry. And on and on it goes.

What this is is a broken heart inside a deeply changed human, still alive in a world that doesn’t make any sense.

The path here is to honor that, somehow. To allow it, to let it be okay that everything sucks and there is no point.

It isn’t easy. None of this is easy.

And you are here, still, now.

You deserve a life that is honest and true, even – or especially – when what is true is pain. When what is true is the blank space: the places that haven’t filled in.

The road here, the ‘what do to’ here, is to want love for yourself, even when you have no idea what that looks like.

I don’t know if it’s possible or if it will help.

But heave yourself in that direction. Turn yourself back toward love. Moment by brokenhearted, weepy, disinterested moment. As often as you can. Let love carry you.

How about you - How has your interest in life changed? Are there any glimmers of interest anywhere? If so, how do you follow them?” ~ Megan Devine

"Coming Around Again" Carly Simon

Carry on....

Many have heard me say so many positive things about hospice care, but it occurred to me that I have never really written about it.  I think I figured the longer most people did not know the details, the better off I would be….will not be the first time I have made a ridiculous assumption and fair warning…I am sure it will not be the last. But here is one of my new most favorite “ah-ha” discoveries.  As people you can divide us by gender, race, religion, hair color and this list can go on forever, but the reality is there are only 2 kinds of people…Alive ones and dead ones, and for the record, I am in the alive category and quite like it! The choice is not if we carry on, but how we chose to carry on.

Most of the time a friend or acquaintance will hear the word hospice, gasp, and assume I have one foot in the grave and death.  That’s a fair assumption.  In the beginning, is was what hospice was.  Allowing people to die and home with dignity, no tubes, no drama.  And they do still do that.

However, “palliative” care has been overlooked and the state of Florida discourages doctors from practicing palliative care except under the umbrella of hospice. Actually, I suspect this is more about the doctor’s liability and lawsuits for the insurance companies.  Palliative care does not try to cure what we all know is uncurable but helps us manage the symptoms and our other resources.

Palliative care is awesome.  The regular cardiologists were going to kill me and my savings account even with insurance with all of their chronic and quite frankly horribly invasive testing! Hospice care sends a nurse to me once a week (no more camping out in doctor’s waiting rooms and exam rooms for hours, my meds are mailed to me) they manage my symptoms ensuring that I have the best, most productive, painless life possible for me. 

There is no doubt in my mind that I would be unable to do one half of what I can do today without their help, guidance, and the constant changing and addition of symptom controlling meds.  But if I can leave one bit of wisdom with you, it would be… do not wait for the typical rule, which is waiting  for your doc to tell you there is only months or weeks to live before.  Hospice and palliative care can give you so so much more and I was so incredibly fortunate to meet with this man and spend a couple of hours with him before making any of my big decisions, I have never regretted it!

"Carry on" Croby, Stills, Nash, and Young

Who is in charge here?

This pretty much sums it up… ”The who is in charge here” dilemma is officially solved!  I woke up this morning with paws in my lower back and squished into one-quarter of the available width of a queen-sized bed and flipped back the covers.  “Not My Cat” has officially staked out his section of the bed.  We have had this “discussion” on several different occasions as I politely move him to the end or the other side of the bed.  He typically grouses but curls up and falls back to sleep.  This seems to be a new tactic.  Wait until I am good and asleep and then claim the territory unnoticeably inch by inch throughout the night. Cleary I am losing the battle.

                    "I'm a Loser"  The Beatles

Spoiler Alert....

This is going to be a long one, so sit back and get comfortable.  My dearest friend, Terry and I were talking, and although I was aware of the fact that I had just gotten another boost in the pain killers, I seemed to be a bit freer and gigglier than normal about talking about what my body was and was not doing as my organs begin to shut down.  The biggest and most hilarious part of the conversation had to deal with my intestinal track not operating correctly and the effect of egg salad has on that process, I will let you figure out the rest.  But the point I was making was this was not part of the fucking (excuse me) Heart failure comic book hand out (really, they are written like a comic book) they gave me one every single time I checked out of the hospital and I have many copies of the damn thing, believe me I know it by heart (no pun intended).  It has been a while since I have written in my blog, and Terry asked, “Why don’t you write about this?”  My answer was, I don’t know….who wants to read about egg salad farts?

Ya just got know you are headed for shit
when a black crow lands on your head.

It occurred to me that the one thing I have craved for the past few years was a tribe.  Not an artist or friend’s tribe although I loved them dearly because we share so many intimate and personal things, I need an "I am dying" tribe.  People that know the life, the love, and the fear of dying.  Now let me make myself clear, I am not looking for a “support” group, been to a few and they were full of whiners, whose main topic of conversation always centered around who had the biggest scar, the longest medicine list, the worst and the best cardiologist.  It was like a heart failure pecker contest!  Oh, there were a few knights in shining armor that were convinced they would fight this with diet, exercise, herbs, meditation etc. but they were only interested in showing all of us how much time and effort they were putting into not dying. Where are the people who accept what is happening to them?  The ones who are trying to live their best lives NOW, because that is what we have.  I want to be a part of the tribe that is not afraid to share the good, the bad, the philosophical, and the funny things that are happening to me on this journey.  In the beginning, I spent so much time and energy trying to convince everyone how “well” I was, regardless of how much energy it took.  When I could not do that anymore, I was ashamed. Certain that I brought this on myself and did not deserve any help or sympathy to combat the “monster” of my own creation I began stepping away from my own life.  Now it seems like it is time to tell the truth, the good the bad and the ugly, including the hysterically funny.  And please believe me there are some really funny things!  This will not be easy for me to write or you to read, but maybe, just maybe somewhere in my words, you might find a morsel of truth or comfort.  But then when this is all done and over with I promise you I will only be able to tell you the 2 things I know for sure...and I already know what they are now.

 

SPOILER ALERT:  #1 Nothing stays the same, EVERYTHING changes and 

#2 Everything dies.

"Iris"  The Goo Goo Dolls

Woodstock

I know it has been a while.....been a really rough couple of weeks, but I still needed to pay homage to my generation
and then marvel how much things change...they do still stay the same.

Then I was reminded by FB friend  

"We are stardust
We are golden
And we've got to get ourselves
Back to the garden"

"Woodstock"  Crosby Stills Nash and Young 

His death anniversary came and went......

His death anniversary came and went.  It was hard, but made a little easier with some medications.  It was a day of overwhelming grief and a day of equal and opposite memories and joy.  Most of the day spent alone in our space and part of the day spent with family.  It seemed only right and part of closing the circle the other people that were thrown into that horrible day (Darren & Jill) had a chance to spend some of that day together again.  The most profound thing that happened was the young man at work that Skip had developed more than a coworker relationship but a true mutual admiration, the young man that was with Skip as he died.  I have always been so grateful that Skip was not alone but with someone he knew and cared deeply about. This young man called yesterday to check on me, which was so sweet and kind, he confessed that he had a difficult time of dealing with the fact that he thought he should have been able to do something.  I had totally forgotten what a trauma that must have been for him, too.  I am so glad he could share that grief and healing that I had no idea had such an impact on him with me.  I did help continue the healing. And then….this beautiful bouquet of flowers arrived from my sisters.  It is a new day and a new year.

Auld Lang Syne.....

Brave enough to do the things I never thought I would have to...Damn it!

I had to increase my O2 through the night and it became intolerable to sleep with the noise and heat put out by “R2D2” …my name for the large O2 concentrator. I found on Amazon an O2 hose long enough that I could push that damn noisy O2 concentrator into Skip’s room with only the tubing in my room.  My mission was accomplished! Blissful, quiet, cool, sleep.  But on the second night of cool quiet sleep, I was rudely awoken in the middle of the night and quite frankly frightened by having the cannula jerked off of my face by an “unseen” force!  I have got to quit watching those ghost hunting shows!... It was not a ghost but Not My Cat in the hallway, wrestling with the O2 tubing on the floor like he had just discovered the best ever cat toy. A few Command Strip hooks later and some not so pretty but very effective engineering and I think the problem is solved!

Next week we will do handrails in the hall, a bit more bathroom modifications, and some adjustments in Skips room to accommodate a full-time care giver…if and when that becomes necessary.   The things that I have avoided for so long is now arriving…and although I hate it, it is not as bad as I thought it would be.

"Brave" Sarah Bareilles

Little by Little

It will soon be 1 year since I have been alone, and I still want to have all of these new changes feel right and normal, but many do not!  I am still “carving out a new life amid this weirdly devastated landscape” of widowhood, covid 19 and still working through advancing heart failure.  I am making so many mistakes!  New life still brings some of the crap of the old life. However, the overwhelming fear of the changes and reorganization of my hospice care has passed. I learned that I get to keep my primary nurse ED, who I adore and is a true advocate for me as a person rather than a set of diagnoses and symptoms and a new Doc that I met yesterday too, and I really like her…I am feeling very lucky about this!  So, if I could add anything to Megan’s quote it would be that “little by little pain and love and fear will find ways to coexist”.

"Nothing Stays the Same" Luke Singh