Being Terminally Ill
INTERESTING STUFF – 27 October 2018

Answers to Reader Questions About Death and Dying

Quite a few readers took me at my word in Wednesday's post that you could ask me anything about this new and final journey in my life, and it would be churlish of me not to try to answer.

Please keep in mind that these are one person's answers at a very early point on the road. I might change my mind later or see the issue from a different point of view, and don't forget that there are no right or wrong answers. Each of us has his/her own path.

* * *

From SIMONE:
“Are you angry about having this cancer? If so, about what/or whom? And how do you handle the anger?”

RONNI: I'm not angry and that might be related to my rejection, when I was first diagnosed last year, of the idea of “fighting” or “beating” cancer but to follow the instruction and direction of medical experts who have much more experience with cancer than I do. Without dismissing such potential causes as smoking, pollution, genetics, radiation, etc., I see cancer as a random occurrence.

Early on, I read about some cancer patients who get hung up on “why me?” My response was “why not me?” Most of my family died of cancer and, 40 percent of all Americans will have some form of cancer during their lives. Knowing all that pretty much eliminates the possibility of anger or blame.

From HAROLD:
“People have told me that once others find out you're terminal that becomes your identity, so you might not want to lead with that. At what point in conversation does your health status usually come up? I know it's on your mind, but do casual acquaintances need to know and do you want them to?”

RONNI: All kinds of things (that I will discuss in a future blog post) fall away at just about the exact moment the doctor says, “there is no treatment” (which is their common expression for “you're terminal.)”

At least, that is true for me and one of those things that fell away is any concern at all about what any person thinks about me in any regard. How others identify me is not my concern.

Before I published my first blog post about this diagnosis, I told the people I love and feel closest to. I missed three or four but they later read the blog posts and we've since talked about it together.

I also announced it at the next meeting of my current affairs discussion group although three or four had already read the first blog post. These are people I see regularly at our meetings, who had kept the group going during the months I was recovering from surgery last year and are an important part of my life.

In other circumstances, it depends on the nature of the gathering, who is attending, what we're talking about and if it is appropriate to discuss at that time. My point is to not deliberately make it a secret which would inevitably become awkward.

From LINDA:
“The wish you expressed...to die 'awake, lucid, not drugged or in pain, is where I always get hung up when I come to thinking about my own dying time. Because so often, when nearing death, to be pain free (or at least pain-bearable) IS, absolutely, to be drugged, not lucid, not awake."

RONNI: Good question. Note that I said I “wish” to die wide awake. Each person's situation is different but if I can arrange to die as I described, it is my first choice. My new palliative care physician tells me that not everyone with cancer experiences pain or, not great pain so maybe I'll be lucky. And if not - well, too bad. The doctor knows my desire in this regard and will work with me.

From KATHERINE:
"Since you are a writer Ronni, how about telling people you are writing/living your final chapter."

RONNI: I think that's what I'm doing at this blog, Katherine. If you mean other people who don't read TGB, I've told them if the subject comes up.

From NANA ROYER:
"I wonder if you're aware of the existence of Death Cafes."

RONNI: Yes, and I wrote about them a few years ago. I had an infuriating experience at my first one that put me off. A woman at my table, no matter what else the rest of us were discussing, promoted her counseling business, handing out flyers and such.

During a break, I complained to one of the organizers who said he would speak with the woman but she continued to tout her business during the second half.

A year or so later, a friend talked me into attending another death cafe in a different town and by god that woman was there – just not at my table. Death cafes ought to be a good thing, getting together in safe places where we can let go of past taboos about discussing death and dying.

From IRMA:
"A quick question: Do you think we know we have died?"

RONNI: I have no idea. Does anyone else want to take a whack at that?

From NATASHAM:
"Ronni, how do you deal with your feelings about terminal illness? Do you see a counselor?"

RONNI: Hmmm. Complicated. The short answer is that so far – this is still new to me – I don't “deal” with them or do anything about them. They just are.

Fear is the big one. Three or four or five times a day, it invades my whole body. It feels like each individual cell is quivering with fear. Everything stops for me. Except the fear. More, deeper, heavier than I've ever felt.

And after a couple of minutes it goes away and I can catch my breath again. I've learned now to wait for that.

I don't see a counselor and won't seek one. Everyone deals with their demons in their own way. Mine is to make room to feel whatever I'm feeling, to try to understand it. It can be painful but I haven't died of it yet and I've learned some things about life in general and about myself.

One more: Several readers, on Wednesday, wrote that we are all terminal. That may be so philosophically but believe me, in my case anyway, it has nothing to do with being told there is no treatment and you will die of your disease. Hearing those words has focused my mind in whole new ways that bear no resemblance to “we are all terminal.”

Let me wind up this Q&A session with a note from reader Jackie:

“The best thing that old friends and what few family members are left can do for me - just spend their time with me talking about everything under the sun.”

Oh, yes. The best antidote I have found when I get a bit maudlin about my new circumstance is to spend time with a friend or friends talking, talking, talking. It always leaves me light-hearted.



Comments

Thank you, Ronni, for being so open and honest about something many of us fear.

You are giving us such a gift. Hope in a small way we are giving to you too.
Thank you for your amazing insights.
Susan

Have a sweet day Ronnie.

I have often been afraid in my life, and it is crippling. I am not what you might call a "praying" person, but when my husband was diagnosed with terminal lung cancer eight years ago, I prayed for two things: that he would not be afraid and that whatever I was called on to do to support him, I would be able to do. I hope you find all the love and support you need, Ronni. Thank you for opening your heart to a world of strangers.

Thank you for sharing this journey and all its touchstones with us, your readers.

I, too, have contemplated death, knowing it will come to me eventually. When I was younger and a mother of young children, I made "deals" in my head with death: Just let me stay alive until my children don't need me anymore - then I'll go willingly. Well, either my children (and now with grandchildren!) will never stop "needing" me - hah, that's all in my head, I know ... or I am reneging on that deal. I'm not ready to go - don't know when, if ever, I will be okay with it.

I am going to continue to follow your blog, but not without trepidation. It's quite a challenge to look this in the eye, isn't it?

I don't often comment. I'm not sure why but probably some deep seated insecurity about saying the wrong thing or being judged. However, I have to tell you what a joy finding your blog was a couple of years ago. What a refreshing place to be able to spend time with people who understand both the gifts and the challenges of aging. I thank you for creating this forum. This latest turn in your life has added a new dimension but you continue to be real, to inspire, and to provide space for honest reflection on the big questions and experience we all share. Thank you, Ronni.

Any regrets?
Lots of people who lived on the "wild side" in the late 60s, early 70s are going to that big turntable in the sky these days. Many of my radio friends are gone. Several didn't want to be around to have a long life.

Especially if they couldn't practice their art form. One of my dearest friends died 3 years ago of Hep C in Florida. He couldn't adapt to not being on the radio.

You have Ronnie by embracing the internet thru your blog which many of us enjoy.

Fred from Cleveland

I agree with your strategy. Just feel the fear and embrace it and then move on. Fear is hard wired in the brain of all animals and humans. It is how we survived. Animals shake a lo after a fright t and then move on. I think humans have to find a way to "shake it off" as well. Not ignore it, just indulge, cry or whatever and move on. We will all die some day. I figure if you are spiritual you might consider your karma and what you are leaving behind. And clean up any messes you made before you go. Love your spirit and your writing. Thank you.


Your description of how you are facing your 'terminal' status and eventual death is how I hope to face my own. Good stuff here.

I have my own answer for Irma. In one word NO. We do know we are dying, but once it is over how can we possibly know we are dead? We no longer exist so how can we know anything? I know others do not share my philosophy and that's okay. I am so often wrong these days that I could be wrong about that. I would like to be surprised.

I was expected to die after a bad fall left me in such pain that even my doctor told my son that I was probably going to die. I am not sure why, but I also thought that the bell was about to toll for me. I was not frightened, but kept trying to think of things that my children would have to do after I died. My only thought was "I will be no more." and that was the most disturbing thing to me. When death did not readily come, I asked my daughter why it was taking so long. I just wanted it to be over so the pain would go away.

Obviously I did not die, but I look at it as a dress rehearsal and am more prepared. I have been blessed with many more years than expected so know that when death comes I have still been very lucky and am ready to relinquish my spot on Earth.

Perhaps as you have always done, take what joy you can from each new day.

You're in our thoughts!

This morning I read an announcement that Fr. Thomas Keating died. I like this sentence: "Fr. Thomas offered his final letting go of the body .." Especially, "letting go of the body." At least one of my siblings and I were present when each of my parents consciously "let go of their bodies."

I wish you that peace Ronnie. Until then I'm hanging in with you!


Fear:
Fear is a "big one" for me also, Ronni. While my situation is not as difficult or imminent as your own, I clearly recognized the feeling you described so accurately...cold, quick and unrehearsed. I am alone so much of the time it can feel very unsettling with rapid pulse etc. My own coping method came to me as pure serendipity or plain old luck.

When I was still actively involved with teens and troubled young couples 20 years ago, I came upon this in the endless reading I was doing at the time...I regret not remembering the source. Now, while sorting and clearing old files a couple of months ago, I came across it again in a letter I had written to a frightened young man. What's that? Reaping what we sow? Karma, if Buddhist thought appeals? Just lucky, works for me. It may seem overly simplistic to some, but I never argue with success.

Now when that 'fear' feeling comes running at me, this literal 'mental trick' helps. I remember to look at the word FEAR as one of the many acronyms taking over our language today. Fantasized Expectations Appearing Real. Different for each of us, of course, but in truth, that is what fear actually is in the brain (...that aging body part supposedly running the show). It is known as an inculcated emotion. Perhaps it just alerts me to look again at the reality of the moment at hand clearly... and move forward with "whatever" I was about 5 minutes earlier. I am grateful to have re-discovered it.

Ronni,
I love you.

Thank you a million times.

Good, honest stuff, helpful to all. I like Darlene's term "dress rehearsal" or maybe "death rehearsal." We all get them in some form or other. What we do with that varies.

Hmmmm...apropos 'Do you think we know we have died?'. Like Darlene, my assumption is that yes, we can know that we are dying, but that once the body, including the brain, has stopped functioning, I don’t think we will ‘know’ anything. My concept of a ‘soul’ and ‘consciousness’ are that they are a function of brain function. A close relative had a ‘near death experience’, in that his heart stopped; but he was in the hospital, with medical personnel near, and a physician got his heart going again by doing chest compressions. The patient’s experience of that period was just of being ‘gone’…no awareness…like when we faint. I worry about ‘dying’…going through the process, potentially unpleasant…but not about ‘being dead’ except what it may mean for those left behind.

I recall reading in a college textbook about the five stages, denial, anger, bargaining, depression, and acceptance make up our learning to live with loss and rejection. Perhaps if we all define and identify each of these stages as Ronni makes this journey we can then understand what our own feelings are as they develop.

Thank you Ronni for inviting us all in. "We are all terminal" doesn't cut it for me either Ronni.

In my 30's, a single mom with 2 pre-school kids, I nearly died of a servere asthma attack. After I lost consciousness I did see a white light, it started as a pin point and expanded to fill my in-my-head vision. Saw nothing else. It had been quite painful and I was terrified; then I wasn't. I was just peaceful and grateful for the relief. My experience that changed my view of death and it's still vivid after all these years. I now have lung problems that make me high risk for anything involving anesthesia but that experience allows me to be peaceful and pragmatic as I go under not that I don't still twitch the night before. I still don't wish to suffer.

Thank you for this wonderful blog & for being you, Ronni. We all love you.

Ronni will leave a lasting and great legacy which is a tremendous human accomplishment. One regret I have is that I will just depart when the time comes, with nothing of significance left behind, but it is what it is.

As far as "the conditions of dying", I've learned over the past year or two that I don't much like pain, so if my end condition is anticipated to involve a lot of that, bring on the good stuff! I'd rather go out unconscious than in serious pain.

I was at my brother's bedside when he breathed his last. One second he was there, the next he wasn't. It was like someone clicked the remote and turned the TV off. I think I could handle that.

I too have looked directly at sudden and certain death ... looking down the barrel of my own loaded handgun in the shaking hands of a drunk and deranged husband. I knew then what facing sure death felt like, and it was completely out of my hands to stop it. Fortunately, somewhere out of my frozen brain I said something to him, and I still don't know where it came from, but it brought him to a full stop. I told him very calmly that I wasn't afraid to die, which I realized at that moment that I truly wasn't, but that he should remember that he would have to face our children in the morning and explain to them why he killed their mother.

There’s a difference between fear and dread. I would fear pain and perhaps fear an afterlife depending, but this would be because they are both unknown...the amount of pain and what happens at death or after, if any.

For me personally, I dread the ceasing of existence for all time. I know that’s coming with no exceptions. It’s not fear but dread because it’s for real and no turning back.

I call it the dreaded fear of non existence. Of course, I know I won’t know it and if I do, well then is not non existence is it?

Let's give ourselves a good long phone conversation when I get off this excruciating but necessary political campaign. Thinking of you.

My wishes for you are that you will have no unbearable pain and that you die aware of your talents and a knowledge of what a blessing you are ( and have been) for so many.

Thank you, Ronni, for sharing with us all.

I can only say I wish I knew everyone in this community of yours personally, Ronni. I wish we could all get together, perhaps a few at a time, and talk and talk, and talk, and then hug. We're doing the next best thing at a distance.

When my time comes, no longer having to put up with the constant hum of tinnitus would be a positive. It's the little things.

I have interstitial pulmonary fibrosis. The usual drugs aren't working. I just underwent a week of tests to see if I'd be a suitable candidate to go on the waiting list for a lung transplant. If not, there is no other treatment. And if they say I am eligible, I will have to decide if I want to be on the list.

I'm not at all afraid of being dead. What matters to me is how I die. I only get to do this once.

Another very helpful read, thanks to the very generous post and the very good comments. Today, I’d like to thank Kenju and Jean in particular for their eloquent wishes, which I wish for, too.

I echo Laura's comment, ronni, and thank all who commented contributing to our group and the love we share for you.


My own exit strategy was very similar to yours Ronni, but after reading Michael Pollan's great book 'How to Change Your Mind' I find myself partial to micro-dosing using LSD during the lead-up. In your case - long may it last. It may well eliminate your fears. Would I risk swapping the company of loving friends for a comforting sense of enlightenment? No way. But both? Maybe...
I was slightly annoyed by the brevity of one of the previous comments: 'I love you'.
I then realised it was spot on. Just because I am unable to sum up the feelings of deep affection and gratitude I have for the privilege of experiencing your fine character, honesty, insight, hard work and generosity in three words it is no reason to deny those who are able. Yours is by far the most entertaining and helpful blog dealing with age. Furthermore, there are simply not enough truth-seeking people like you on the planet. One day you will leave. But my love and gratitude will stay.

I'm just seeing this now. Thank you for answering my question. Sorry I didn't acknowledge it sooner. I hope your palliative care people will be able to insure these your comfort all along the way.

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