All those times we looked up at the
sky
Looking out so far, we felt like we could fly
And now I'm all alone in the dark of night
The moon is shining, but I can't see the light
~ "Stars" by Grace Potter and the Nocturnals
* * * * *
I pray for the strength to accept
that lives most often end in tragedy,
that quests don’t always work,
that understanding is a long and lonely hunt,
that I can't reason my way to love,
eat gold,
or live forever,
And that none of this matters.
I pray to understand that I am here to find my way back to
God, whatever that takes, and all the rest save love and duty is
an illusion.
~ John Taylor Gatto, educator and
author, New York
From the book, Prayers For A Thousand Years
Let me say right off the bat that this
still-newish year of 2025 has been, so far, very rough for me. It has
not been the fresh beginning that most of us are indoctrinated to
believe, or at least to hope, nascent years should be. To the
contrary, 2025 has been a continuation of the utter suckfest that was 2024. For me it has been a double whammy not of fresh
beginnings but of sad endings.
First there has been my ongoing experience, shared
by millions of others, of being witness to the accelerating
demise of American democracy, which contrary to the Washington
Post slogan is not dying in darkness, but is being hacked to death bit by bit in broad daylight. And on a much more personal level, I am dealing with
the death of my soul mate, my best friend, and the love of my
life, Ron Kaye.
Ron, also known as Reverend Ron, Rev Ron, or simply The Rev (on his own
blog and on this one in its earlier
days), passed peacefully on Monday night, February 24, 2025, a
little before 11:00 PM. He and I had been together for going on 32 years.
I am, to put it mildly, devastated.
Ron had been struggling with Lewy body dementia, which while perhaps not quite as well known as
Alzheimer's, is far from rare. The late actor and comedian Robin Williams was also a sufferer of LBD.
The disease was a total nightmare for both Ron and
me because he suffered from hallucinations, delusions, and
paranoia in addition to the cognitive and functional issues more
commonly associated with dementia, such as memory loss and a
significant decline in skills. The hallucinations and delusions
and paranoia increasingly caused erratic behavior that at first was merely disruptive in dozens of different ways, but later
became frightening, violent, and dangerous. It came to the point
where it was no longer safe for him to live at home with me.
Accordingly, for the last few months of his life, Ron was in the
locked memory care unit at a nursing home, through arrangements made by the VA, under whose care he had been. Despite his
deteriorating cognition, he remained surprisingly healthy
physically, and he was constantly trying to find ways to escape
his confinement.
But in more recent weeks he developed serious medical problems
that he'd not had before, and he was in and out of hospitals.
Some of the problems he faced towards the end were a sudden and
very puzzling loss of his ability to walk, serious heart rhythm
issues, and life-threatening respiratory problems brought on by a
combination of blood clots in his lungs and pneumonia.
It became more and more apparent that he was not coming back from
this, so during his last hospitalization I signed him up for
hospice care. That was on Saturday, February 22, and that evening
he was discharged back to the nursing home, where he died two
nights later.
My world will never be the same. Right now if feels as if I will
never be happy again.
* * * * *
Ron was a kind and gentle and brilliant person,
until the brutal disease snatched almost all of that away from
him. Even towards the end, however, up until the point that he
would no longer open his eyes, I could look into their depths
and see that he was still in there, somewhere. But it
was also painfully clear that he knew, at some deep level, how
trapped he was in his dysfunctional brain and increasingly malfunctioning body.
I was in despair, knowing that he knew, and knowing also that
despite his problems he could possibly linger on for years,
with his brain continuing to deteriorate. What kind of existence
could that possibly be? Just thinking about it was horrifying. So
it was not lost on me, nor on the other people who love him the
most, that the numerous medical crises that hurried his passing
were in their own way a blessing.
It seems forever ago that I wrote this blog post about Ron back in 2009, in observance of
Veterans Day. It barely scratched the
surface of the kind and gentle and considerate and brave man he
was. In due time, I will have more, much more to write about him
and about this sorrowful road we stumbled down together until we
reached the inevitable pass that he had to go through alone. I
have plans to start a separate blog or a Substack, not only with
the narrative of our own journey, but also with information and
links that I hope can help others who are facing the same ordeal.
I will link to it when it's launched.
For the time being, though, I am alternately numb and deeply weary and
overcome with grief, which comes in waves. I let the waves wash
over me as I hold on to something sturdy and then continue
trudging through the hours and days, knowing that there is
a way past grief, eventually, but that, like so many things in
life, the only way past it is through it.
I would be remiss were I not to acknowledge the
people who have helped and are continuing to help me through my
grief: Ron's beautiful daughter; close friends who have been
Ron's and my family of choice; and many other friends whom we
only knew from social media. I love all of you.
Then of course there is the team of providers who recognized what
an essentially lonely journey this is and did everything they
could to make it a little easier: the kind and compassionate
doctors, physician's assistants, nurses, nurse practitioners,
technicians, sitters, aids, and social workers at the DeBakey VA
Medical Center in Houston; the staff at the nursing home; and the
hospice care providers, the latter of whom I only knew for a few
days but whose professionalism and kindness helped make Ron's
passing easier for both him and me. These people all deal with
tragic stories every day of their professional lives, and yet
they act in the knowledge that every story is different, and that the
individuals living through that story are more than just names
and numbers in a file.
There will come a time, I know, when I will be
able to walk out at night and look up at the stars again without
being overcome by the vast and terrible sadness of Ron's absence,
and without the inevitable flood of "where-are-you"
questions. Or when I can bear to simply watch one of Ron's and my
favorite movies, and there are quite a few that we viewed so many
times together over the years that we practically knew the whole
script by heart. And maybe there will even be a time when I can
get through a whole day and night without crying. But I'm not
there yet.
For now, I need rest, so much rest. There's too much to deal with
in this new life without him, from emotional issues to scary
financial ones. With lots of help, I think I'll be able to handle them.
But I miss you, Ronnie Kaye.
Related on this Whirled:
- For those who have served (November 11, 2009): I'm linking again here to my tribute to Ron, written on a long-ago Veterans Day. He was always a little embarrassed by this post, and it wasn't false modesty; he just didn't like people making a big fuss over him. From my perspective, however, I didn't make enough of a fuss over him.
- Veterans Day: Those who have served will be ill-served by Trump and Project 2025 (and/or Elon & Vivek's austerity cartel (November 11, 2024): Vivek is long gone, but E(vil)on is still out there running wild and slashing and burning, and Trump and the Trumpublicans are going right along with it. Ron no longer has to worry about this, but I fear for the millions of veterans whose care will either be seriously compromised, or cut altogether, if the wrecking crew has its way.
- Election Day musings: overall the US is actually better off than it was 4 years ago, but it will be much WORSE off if 45 becomes 47 (November 5, 2024): By the time I published this, I was pretty sure that 45 would indeed become 47, but I thought there still might be a smidgen of hope left. In this post, I recap a conversation I had with a small group of veterans on a VA shuttle bus. They were all in for Trump. I will probably never see these gentlemen again, and in any case I would never tell them, "I told you so," because I didn't actually tell them so (they'd already early-voted for Trump). But I fear for them now.
Before you leave...
While money cannot make some personal nightmares go away, it can
make them far easier to bear. With Ron's passing, I will be
facing significant income loss and am scrambling to find more
work, but in an industry increasingly being taken over by AI, it has been a challenge. Now more than ever, donations
are urgently needed and profoundly appreciated. Here are some
ways to do it:
- New: Venmo -- username @Connie-Schmidt-42. Here is a direct link to the Venmo page.
- New: PayPal -- Here is a direct link to my PayPal page.
- Old but still good: You can click on the "Donate" icon that currently appears on the right-hand side of every page of this blog on the Web version. There's also a donation link at the end of many of my older blog posts. In the case of both the icon and the links on the older posts, as well as the link in this sentence, this is also a PayPal link, but it references the email account RevRon -- which is cool, because it all ultimately goes to the same place.
NOTE: If you are donating by PayPal, please
specify that your contribution is for "friends and
family," which will waive PayPal's substantial transaction fee.
Whether you can donate or not, thank you for visiting this
Whirled.