A TGB READER STORY: Medical – In the Beginning and Near the End
The Most Important Vote of Our Lives

The Ping-Pong of Thoughts Toward the End of Life and The Alex and Ronni Show

It has been three weeks since the doctors told me there is no treatment for my cancer and that video above is a pretty close representation of what my mind, since then, has been doing.

It's all over the place skipping from one feeling, thought, idea or notion to another without finishing the previous one. I can go from considering death as the last great adventure to paralyzing fear in a second or two.

Or from pondering the mystery of cancer cells gone awry in a way that is certain to kill themselves by killing me, their host, to wondering how I should now choose the books I read.

From wondering why I can't yet make myself order my cremation (it's not hard to do, for god's sake) to clicking over to YouTube to watch cute kitty videos while worrying that I'm wasting what time I have.

And so on. Random. Purposeless. Unproductive.

There is no instruction book for end of life especially in a culture, the United States, that hides death and dying from everyday life so that we who are near checkout time are on our own with few, if any, examples to call on.

In fact, for all the hundreds of books and thousands of articles, studies and news stories I've read about ageing, death and dying, there is hardly anything written by or for the dying person. Almost all of it is for, by or about the caregiver.

Which is not to take a whit away from the kind, dedicated people who take on that burden privately and professionally. They are special in ways I am not nor could be. But their experience is different from the person doing the dying.

What I have discovered is that little cultural attention is paid to this period of time between dire diagnosis and death. It is fairly easy to find out what the final days, hours, moments of life will be like – at least from the outside. There are many sources.

But no one tells us about navigating the period of time - be it weeks, months, a year or so - when you can no longer fool yourself into believing you will live another 20 years and become one of the ancients.

So I'm making it up as I go along. What most keeps me engaged are friends online and in person. They are my comfort and ease who, depending on distance, have stepped up without being asked, keeping in touch by phone, email, inviting me to lunch and dinner and offering open-ended help now and in the future.

Even as someone who always has needed and still needs more time alone than many others, nothing else keeps my mind from ping-ponging hither and yon as much as close contact with people I love.

* * *

If you would like to see Alex's entire two-hour show with other guests following our chat, you can do that at Facebook or Gabnet on Facebook or on YouTube.



Comments

Ronni, I always enjoying listening to the repartee between you and Alex.

When you mentioned that at your very end, the thought that you won't care because you imagine just wanting "to get out of it" (my words), I thought back on some of my mother's final words , just over two months ago, when she died, over a 10 day period, at 97-1/2:

Early on, "this is peculiar". . .then she was "on the golden staircase"--and went back to sleep. When she woke, I mentioned the golden staircase and she said "what are you talking about?" After being moved into hospice and going through a restless period, she mumbled, "this dying is hard. . .wrap me in a shroud and obliterate me!" I wish now I'd written down everything but I didn't. I think her last words were "I love you too" as the last couple days she said nothing.

Deathing does seem so like a process you work at--kind of the reverse of the process of giving birth--and maybe going down the birth canal? Unless it's a traumatic death, the result of an accident.

I'm nor sure what this is really appropos of--just the thoughts your comment triggered. I grateful you're taking us on this journey with you.

My sister passed five weeks after her lung cancer diagnosis. During that time, while she was feeling "almost normal" and "unbelievably good," she took care of all the details ... arranging for the disposition of her estate and the placement of her kitties. She also said more than once during this time, "I wish I had a gun ... just shoot me. The waiting is killing me." We laughed, but I think the waiting, with the mind ping-ponging must have been unimaginably difficult.
Thank you for sharing all this with us. I will continue to learn from you and your experience.

Thank you for sharing your journey. I need to learn and you are a gifted, caring teacher.

I suppose everyone who is dying has a different experience, but it is helpful reading others experience. That is why I enjoy your blog so much. I’ve been able to relate so much with what you’ve shared. Now I wonder what would I do if I knew when I would die. I know one thing, I would be so pissed that I didn’t get to spend all the money I saved for retirement. Really pissed! Also, I would not worry about what I’m eating and I’d have dessert (and anything else I wanted) everyday! I would take care of as much business as I could so as not to leave it to someone else. And then, I think, I’d just contemplate my life. I’m ok believing there is nothing after death. I know there was a book written by a hospice nurse about dying, “One Foot In Heaven, Journey of a Hospice Nurse” by Heidi Telpner. Not sure if it would be helpful. I also appreciate your sharing your experience with us.

This is your process, not anyone else's, so it is completely unique to you...including your sharing here, and reading our comments from our own processes. I guess what I'm saying is that you can't walk in anyone else's footprints on this path. I even saw a quote (I think Joseph Campbell) who said something like "You are not walking on your path, because it's being created with each of your steps." Another quote that I love is from Richard Alpert (Ram Das) "We are all just walking each other home." Whatever happens, it's just right.

Good morning Ronni and all. There actually is a book you might find worthwhile. “Die Wise: A Manifesto for Sanity and Soul” by Stephen Jenkinson. I am reading it now and finding it alternately lyrical and beautiful, and jaw-droppingly original.

Jenkinson spoke in Portland a few weeks ago, two friends of mine from the Coast heard him and were much inspired.

But whether you read it or not, Ronni, you will find your way.

Ronnie, The American Buddhist teacher Stephen Levine wrote several books for the dying. Healing into Life and Death, and A Year to Live are two. I read much of the first aloud to a dear friend who was given a (mistaken) diagnosis of having only a year to live.

Loving every day you are writing. I hope a good friend maintains this blog as an archive so your wisdom, and that of the community here, remains available for the masses who are entering old age now.

Love.

When my friend Jude's father was actively dying, she asked him if it was hard. He said, "Darlin', it's the easiest thing in the world." (He had, I will add, good palliative care.)

At this time, I hope none of us encumber ourselves with 'shoulds'.

A number of persons have written about their dying, from bloggers known only to a few to well-known writers like Christopher Hitchens. Valuable work, but also kind of like childbirth, every person's experience is different. Your reflections will be extremely valuable but please don't feel obliged. You have already given us so much.

Look up Deathtalkproject.com and PDX Death Cafe (also on Facebook) for a group of people who gather online and/ or in person. Non-religious, no agenda, volunteer facilitators.

Much love.

Oh Ronni, thank you for this gift. As Lola says, there are good books about dying but when someone in your position is willing to chronicle the moment-by-moment thoughts and feelings whether large or small, predictable or unexpected, that come with it, that truly is a gift. These details are so meaningful precisely because they are the sorts of things one doesn't necessarily find in the guidebooks.

Over all these years, as you have talked about the day-to-day process of watching oneself grow old and we have all added our comments and experiences regarding 'what it's really like...', I have often thought what a rich and valuable process this is for us all. And since I know that many of us are statistically likely to face what you are currently facing, I just want to say that the experience just got even richer.

Given the prevalence of cancer, a bunch of us are going to be walking the particular path you are now beating through this patch of undergrowth. Some already are. But now if we find our minds playing ping-pong, we'll all be able to say "Ah...there's that thing ."

I bought myself a funeral a couple of years ago. The funeral director assured me that, if I didn't use it, I could get my money back. You have no idea how comforting that is.

Ronnie -
Thanks to you and Alex for giving this gift of you. Agree with Alex - you are / have been so interesting to listen to and read. And always an inspiration.

A fan from the original BlogHer Days,
Toby

I would like to offer one brief personal experience, Ronni, that completely changed my own view of this event that awaits us all. When we knew my husband's time was short, he wanted to be at home, in his own bed and house. Long story/short version...we got it done in 24 hours with the help of the Hospice RN.

He settled in like a child happy to be home. With a hospital bed and his O2, things seemed doable even though I was alone. Later that evening I heard his voice and went to see about it. I ask what he needed, water? a blanket? the usual? He put up his hand like a policeman at an intersection calmly saying "Shhhh! I'm getting instructions !" A short time later, drifted into sleep.

I have never forgotten the power of that moment for me. It seems like his last, best gift to me. He was a pragmatic, intelligent, engineer with no religious beliefs or interest and fully cognitive until the very last.

He died in his sleep 10 hours later and yes, after 56 years married, Donald Hall's words you shared last week speak to me also. " His presence is.... his absence." It comes and goes, and then I pull back into my current reality again. You know the one...wondering what is next? Will we get instructions? Oh Lordy, I hope so.

Knowing in advance that what you have left is very short, very limited time to live is either the best or the worst way to face death. Perhaps both at the same time.

I ordered and pre-paid for my cremation 10 years ago. Also gave very clear directions to my older son where and how to plant my ashes along with a tree that they will nourish, and left him enough money to carry out my wishes which he accepted and agreed with immediately.
I reconfirmed the arrangement last night on the phone with my son. Have not had to carry that burden for a long time now.

Since my mind pingpongs now, without such a diagnosis, I can imagine my thoughts and actions will be pingponging then as well. About 5 years ago I donated my body to Emory for something or other. Once that activity is over (manipulating my dead body somehow) I'll be incinerated with a bunch of other people.

I'm a Unitarian Universalist and can write down my wishes for a memorial service. I'm not ready to do that yet, mostly because I expect to change my list of music over time.

"When Breath Becomes Air" and "The Last Lecture" are what came immediately to mind as books written by people while they are dying. I know that in Death Cafes you can talk about any aspect of dying that you want to. There are also death doulas to help people with any aspect of their dying, and I'm sure that would include processing their feelings and thoughts with them.

Of course your mind is still in turmoil, my dear. This is all very new to you and is the last great transition for you to master. It must feel very lonely. There is a poem I love by Gerard Manly Hopkins - To a Young Girl. A beautiful and profound comment on death. I recommend it to you.

Please keep talking to us. Most of us will be where you are, sometime fairly soon, and we care about you.

Buddhists put a lot of time and effort into the death process. They seem to have a pretty good handle on it and what comes after. Might be worth checking into this.

I just watched the "Alex and Ronni" show for the second time today. The first time was a surprise because I had just watched a Trevor Noah show and the next video on the clip was yours.

Of course, I watched it and there is so much to say that I will only comment on the segment of when you discussed the horrible anti-Semitic tragedy in Pennsylvania and how our "dear leader" (sarcasm) was so totally insensitive and callous. He is a Sociopath incapable of love, compassion, empathy or any other good emotion that makes us human.

Dump (not a typo) is incapable of any feeling other than what it means to himself and must inject his person into every event - good or bad - as he cannot stand to have anyone or anything be talked about instead of himself. He is one sick SOB,


There is at least one Republican on Ronnie's ship. I can see it now: Man Overboard!

I wish you well Ronni as you begin a series of chemotherapy, hopefully with few or no side affects. It's always a personal decision to do treatments; when I had breast cancer 25 yrs ago, I said throw "throw the kitchen sink" at it. A bit of a crap shoot and gratefully it gave me tomorrows. May your treatment give you many tomorrows. Keep in mind you're only a statistic in the medical world, many have blown that out of the water and continued to beat the odds. Huggzz

When I went for grief counseling after Dad died (I also joined a grief support group), I was told I saw what was behind the curtain. When I later shared this with friends, I was asked what this meant? I thought the meaning was obvious? I guess people don't understand until they go thru it. We don't talk about aging and we don't talk about dying. We talk amongst ourselves but people either have a fairy tale view of it or are in denial. I was given a booklet by the hospice. I just didn't know what to expect. It helped. I hope I was able to make Dad's last days comfortable. He died at home.

I talked alot about death after my fiance died . I had to stop because I could tell it made people uncomfortable.

I look forward to your sharing, Ronni. Your blog is so important.

Ronnie I enjoyed and have appreciated your blog these many years & months. Thanks for posting the Chicken violin video.

If your time ends before mine, I want you to know you were a good influence on me. And likely many others.

A conversation once relayed to me:

Person asks Zen master: "What happens when we die?"
Zen master: "Don't know."
Person: "Why not?"
Zen master: "Not dead yet."

BTW, I love hearing New Yorkers talk about DT. Because DT is from NYC and New Yorkers have known him a long time.

I want to die wisely.
I only get to do this once.
My death is the most important one in the world (to me).
I want the story of my life to have a satisfying end.

I liked what Alex said about how death can be a blessing if you do it right. I had a younger friend, decades ago, whose father died that way. He brought the family together, they talked openly, and Ruth said that she and her brother became much closer during that time.

Everything is connected to everything else. We rarely know how. My friend's father had no idea that the way he spent his last days would have ripple effects to me, and then maybe to you.

On the other hand, the psychiatric nurse who was part of the lung transplant assessment told me that transplant patients need to have a certain amount of "healthy narcissism." I don't know... that sounds like an oxymoron to me, like jumbo shrimp, but hey, I've never done this before.

It,s 7.30am here in south west Turkey and I am drinking coffee on the terrace having found your news via a Twitter alert in my email inbox. I am fine, going to four yoga classes each week and contemplating winter now the tourist season here officially ended yesterday. And you are not so fine. It was a shock getting your news but you will handle it. I can now control my ping pong mind to a certain extent by using breathing/meditation techniques learned in yoga. The saddest thing for me is that we now shall never meet. For years I have had a fantasy of you coming to visit and me showing you the beautiful place I am so lucky to live in. But not to worry as I'm sure not having visited Turkey is low on your list of things you regret, if it features at all. I shall try to be better at following your blog from now on and you may, note the indefinite usage, get emails with pics from my travels. I shall definitely pop up in your comments again. And you will be fine.

I had a thought this morning that may resonate with anyone who likes to write. When you cross that line and you know for sure that you are dying but you still have some time before it really hits... that is an opportunity. To some extent... not perfectly, but to some degree... this is a time for making meaning. You have a chance to choose the ending of your story.

I echo the recommendation of the book Die Wise. Someone mentioned it in the comments here when you first broke the news. I have it now, and have been reading and re-reading it.

Ronni:

I don't believe I've ever commented here before, but I've been checking in on Time Goes By regularly since I first ran across it in my 40s. I loved that you were writing about a topic that is so often ignored.

Now, I am the age that you were when you first looked around that newsroom and realized you were the oldest person in the room. I want you to know that your writing has had a positive impact on my life, and on how I am approaching aging. I like to think that -- because of TGB -- I am trying to approach aging mindfully and with purpose.

Thank you for all that you've shared over the years.

You have such a comfortable repartee with your ex, Ronni.

I like that.

Just got home from my volunteer busing tables job at the ILR.

Every week something new.

This week "new guy J" did not come down for lunch.

J moved in a few months ago. Divorced, two sons who live on the other side of Canada.

He looks a bit like senior Clint Eastwood, even has the "make my day" voice.

J had his own business, went bankrupt, lost his car, no wonder he looked sad.

He'd arrive early in the diningroom, have a coffee and stare into space like he was trying to untangle some complicated plot.

We brought him coffee and friendship.

But today his chair was empty.

I asked about him.

Apparently J managed to take three busses to visit his friends up north this weekend, suffered a stroke when he arrived and is now in the hospital.

What the H.

Ronnie, I was thinking about you this evening, and I think you could say "Timor mortis conturbat me". Getting really close to death, feeling its breath on your neck, is destabilizing. It's chilling. Everything else is little. It's what Emily Dickinson called "zero at the bone". All the crap we use to get through our lives flies past us like - yes - ping pong balls. No one cares if my ceiling fan is clean, in other words. No one ever did.

It helps me, sometimes, to try to imagine being a cat. I eat, I sleep , I stretch, I wash and nothing else crosses my mind. I can't possibly actually achieve that state of mind, being consumed with anxiety as we humans are, but imagining it can give me temporary peace. I think that is a big part of why most of us like being around animals and especially cats, who are not programmed to please anyone but themselves. So utterly honest, in the moment, going to do what they need to do. So you are going to do what you need to do. Break it down into small physical steps?

Oh well, I'm wittering on. Just know that right now I see your face in my mind's eye.

My mother found the then-pioneering work of Elizabeth Kubler Ross very helpful as she faced her death in 1987. You might give her a spin. I love your posts and am so grateful to you for sharing your journey. Blessings on your way.

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