A TGB READER STORY: Life Lessons at the Lunch Counter
When Bad Days Turn Good – Part 2

When Bad Days Turn Good – Part 1

What I learned the hard way last week (why are so many lessons hard ones?) is that as my cancer and COPD advance, it is crucial – actually, mandatory if I want to function in even the smallest ways - that I get at least six hours of sleep, a couple more is better.

Without that, I am weak as a kitten in mind and body. Carrying a coffee cup from the kitchen to my desk when I'm that sleep-deprived, is a slow trek of only eight or 10 steps but it makes my legs shake, although I get stronger as the day progresses.

On two nights last week, separated by one night of a good, deep sleep, I lay awake the entire night. Whichever sleeping potion I had taken had failed entirely, a second dose didn't help and my thoughts got darker as the hours piled up.

I was ache-y, exhausted, restless and generally miserable. Even trying to use the time to sort through some ideas I had been recently toying with didn't work. My brain was fried, the blanket was snarled, the pillows were hot, my left foot hurt like hell and I just wanted it all to stop. By any means.

At that point, dying seemed reasonable and welcome. Right there and then. Just let go.

As I lay there, it began to feel like it could be just that easy to do. Why all the fuss we humans make about it, I thought. I could end all my discomfort by dying. Turn out the light so to speak. Tell my heart to stop. Be done with it all.

As I considered my impossible idea, it wasn't the same to me as committing suicide. Taking action to end one's life involves mostly violent intervention – a gun, a knife, a rope, a high roof and even those death with dignity pills I have tucked away involve mixing a series of drinks and taking them in the correct order at timed intervals.

If nothing else prevented me from doing one of those things, my exhaustion did. At that point in the night, just getting out of bed was beyond the realm of the possible.

As my sleepless stupor continued, I became indignant that I couldn't end my life by just thinking it. It's my life so why not.

Of course, it doesn't work that way but I began to believe it ought to and the idea had stuck with me even after I finally got some good rest a night later and lost my desire to end it all.

And that was that. With many years of poor sleep behind me, I have a lot of experience with dark thoughts on sleepless nights. I know it is best not to dwell on them.

But sometimes the universe has other ideas. A couple of days later while the idea of simply blinking out still popped up in brief moments, a long-time blog and New York City friend, Annie Gottlieb, sent me this quotation from the celebrated poet and novelist, Rainer Maria Rilke. He wrote it, she told me, when he was ill with leukemia:

“We were such wonderfully good friends, my body and I, I don’t know at all how it happened that we separated and became foreign to each other.”

Oh my yes. Me too. It is close to perfection in encapsulating that late-night death fantasy from a few nights earlier.

Until my cancer diagnosis three years ago, my body and I were great good friends and now we are not. I'm a bit less neutral about what has happened between us than Rilke sounds; more than feeling separated and foreign, I feel my body has betrayed me.

But isn't it wonderful to be given a well-conceived metaphor to further one's understanding.

Part 2 of When Bad Days Turn Good on Friday.

* * *

The organization that provides my hospice care is Care Partners, a non-profit that supplies hospice and palliative care to five counties in northwest Oregon. I have a wonderful nurse who is also my case manager along with a social worker and a non-denominational spiritual adviser with others to call on as needed.

They are all excellent and one other thing that gives me comfort: there is always a live person on the other end of the telephone line, a nurse, so that I can have real human help at my fingertips at any hour of the day or night.

This week, I'm blushing a bit that Care Partners published a story about this blog and linked to the first story I posted about entering hospice. Their home page is here.

[Part 2 is here.]

Comments

Thanks for the links, Ronni. I shall soon go check them out; but, I've something else to address just now. You wrote, "...I couldn't end my life by just thinking it. " Undoubtedly, should the human race survive long enough, a means shall be developed to allow us to do just that - perhaps because someone who reads your blog (scientist or no) passes along the idea to someone who is within six degrees-of-freedom from those who are now working on sorting through the electrical signals in our brains.

I feel for your not being able to sleep. Better luck for following nights.

While I was reading your post, I was thinking about how dark and often hopeless, but definitely upsetting, our thoughts often are when we wake in the middle of the night or cannot go to sleep at all. I've often wondered if this is a survival strategy from our earliest days as humans, but I don't see how all this worry could have helped then either. I'm so glad you have had some better sleep since those two horrible nights. Thank you for talking about this nighttime challenge. As always, your story helps all of us as we struggle with similar problems.

I followed the link to your CARE site, and further in to the Respiratory Care link (as I too have COPD). I was astounded to see a great big picture of an older man in a blue sweater, sitting calmly in a chair, and .....SMOKING!!!!!

Your sleepless nights are similar to my own. I am awake at least 2 hours every night. I often listen to podcasts or audiobooks. But I long for the days of uninterrupted sleep.
I live in Texas where there is no Medical Aid in Dying so I don’t even have the option of ending my life when the time comes.
Thank you for sharing your journey with us.

Wow, Ronni, it is very cool that the Hospice group has done an article about you and the blog. I always think there is a wider audience, and have, over time, introduced you and the blog to many of my friends. So good going.

I'm sorry about the sleeplessness, I know that one all too well, and the "4am meanies" that infuse that time with palpitation-making anxieties. May you rest comfortably with the remedies working, and may you wake as refreshed as you need to be.

In gratitude for all you do,
Lola

Keep on trucking, as long as you can...as much as feels good for you. And when it might again feel like that sleepless night...I do hope you are able to either have pain relief, or make your final decision with attention as you have wished to do.

Care Partners is also here in our area of Western North Carolina, and they do a wonderful job (it is more than a job for most of them) in giving our final days, and months a sense of joyful purpose. I am so sorry that some friends have chosen not to use their expertise, and had to suffer more than I think necessary. But it was their choice.

I'm about to start Pulmonary rehab...so hope to learn something new to add to my own bag of tricks. Mainly doing monitored exercise, which I've been doing in the Cardiac Rehab for the last 9 weeks. I really liked the wholistic approach that I've been given.

What a poignant and important piece. Do nothing at your own expense.

Luci

Oh, those thoughts that arise in the middle of the night when one breaks through the still waters of sleep, one's head surfacing with barely a ripple, and then being unable to get back to sleep! For me, it's never that I am severely anxious about any one thing in particular, never a heart-pounding nightmare or fear of a nameless event yet to happen, but rather just that dull feeling of hopelessness for the state of the world or of humankind. I lie there, powerless to turn off my brain. I try to think of sleep as something I can catch - I put out an imaginary "hook" to see if I can reel it in somehow. Almost always after an hour or more, I do slip back into unconsciousness, and upon arising, I always ask myself why, oh why, do I never remember in the middle of the night that things are never as bad in the light of morning. I hope your mornings bring you peace, Ronni.

Care Partners wrote such a beautiful piece about TGB. I am trying to get more friends to subscribe. There is no other platform that captures so completely and so well the various personal truths of our life’s journey.

My first year as a subscriber has added so much to my life, meeting Ronni, meeting many of you, essays, stories, advice, revelations, music, video chit-chat, the vibrant community that Ronni has brought and kept together.

Ronni, I wish you sweet dreams tonight . . . .

It seems to me, even at only 72 and in generally good health, that aging in general is a process where my body continues to betray me. A relatively constant stream of smaller and not so smaller indignities my body and mind inflict to remind that I'm not as young as I think I am. Or that I want to think I am.

Constantly reminded that even as I look out on the world with "40 year old eyes" I have not been 40 for a long time.

Like Bob, have thought that the aging process “gifts” us all with many of the issues that come w separating from our bodies. Serious illness as you and so many have suffered comes w a whole raft of problems and challenges.

For us that are not seriously ill, we are separating at a slower and less dramatic pace. I finally realized this is what aging is... a gradual separation of mind/spirit from the body. That culminates in death - total separation. I no longer see it as betrayal and for me, that takes some of the fight out of it...

Just read recently, possibly in Next Avenue or Compassion and Choices, that for those who live in states w no death w dignity provisions, that simply stopping food and water intake can bring on death in a fairly short period of time. Am sure there’s more to it but the guidance seems to be out there. And of course our children would have to be on board...

Thank you Ronni. Am trying to save these posts now because they are full of realistic wisdom we all need so badly... I wish they were being turned into a book that I could give to friends... ✨

What a terrific piece that Care Partners wrote about your site Ronni, I’m glad to see it’s getting the attention it deserves. (BTW, my sister is silent on here but often remarks to me how much she enjoys your personal essays.) I wish I had some advice on the sleep issues, I’ve been having trouble with that for a couple weeks now. At the same time... I only seem to sleep well when I’m very depressed, so it can be a real catch-22.

Thank you once again for sharing your thoughts and process with such honesty. I feel dignity in being the recipient of such honest communication.
I am blessed, for the most part, with lots of restful sleep, and offer my process for your consideration. I feel nervy offering suggestions to a dying woman, but here goes. 1. Have a big, floppy "corn bag" ( soft fabric pillow loosely filled with corn), heated in the microwave, to snuggle your feet into. 2. Sleep in a cool room but have enough wool blankets to keep you warm. 3. After evening ablutions, settle into bed with an enjoyable but not challenging or stimulating book. Travel books are nice. 4. Have enough pillows to surround yourself with. Prop two fat pillows behind your back, and lay a heating pad on them to warm your back as you sit, reading. A pillow can bring reading material closer to eyesight. Snuggle your feet into the heated corn bag. 5. Read until you're sleepy, then disassemble the pillow arrangement and snuggle into your blankets. 6. Think of "highlights of the day." This could include little triumphs, thoughts, interactions with others, anything. Offer thanks for the gift of another day of life for loved ones, including oneself. 7. During the day, if you feel slightly sleepy, lie down and take a nap. Don't wait until exhaustion.

So rich! Your writing, the way you expressed yourself on this topic, priceless! I'm saving it, though with my made up way of filing stuff, it may never be found again. The night time boogy man seems real sometimes. I've learned that I can have the most horrendous thoughts on those wakeful nights. And try to give them a nod and send them on their way. Sometimes successful, sometimes not. Then, once in a while, there are great flashes of inspiration, new knowing, SOME-thing.
Good sleep, sweet dreams to us all.

Uncanny really, Ronni, how you can hit home for so many of us, and I'm not aware of others who are also in hospice. There are so many good points and comments in this post.

I bet there will be many more times that Care Partners will find your blog useful in their publications and even training of care givers.

You know what, Ronni,

When I started searching for that quote from Rilke, what I was sure I remembered him saying was, “My body and I, we were such good friends—how could it happen that you [my body] betrayed me?”

It was because I was so sure of the word “betrayed” that I had trouble finding the quote!

Maybe it was a different translation. Now I’m wondering about the original German. Or was it just what I heard behind the words?

Ronni -

You have been given the gift of life and with it a purpose you continue to perform ably. Care Partners, who undoubtedly has hundreds of readers, recognizes you as well .

Please continue sharing your story. Carry on.

My sleep problems started when i began using a computer, especially after my husband’s death. I spent too much time trouble-shooting, often ending up having to talk to India, occasionally upending my sleep habits to pull all-niters which proved to be detrimental to my health in these aging years. I’ve been a bit of a night owl so have compromised by trying to get to bed earlier than my inclination. I have long since made a concentrated effort to right my body’s sleep schedule but uninterrupted consecutive hours of four or more are rare. I do try to get a minimum total of six broken hours, even if its in two hour blocks, or less. I’m not sure I get into REM stage which is important for cell repair but continue working toward doing so. I don’t fret, stew, worry when awake for hours so don't know what keeps me awake and have occasionally not slept an entire night. I’ve not used any sleep aids but toy with the idea. I just don't want them to become a permanent need. I think I’ve made progress but the gains have been slow, stymied or setback with a few instances when unrelated medical issues interfered. Patience....patience....I tell myself, a word I often counseled my patients to practice — easier said than done.


My wife easily handles a lack of sleep -- which is a good thing b/c she often wakes up and can't get back to sleep. But if she goes without a meal, watch out! She gets cranky and headachy. I'm the opposite. No problem if I miss a meal. But if I don't get 7 or 8 hours, I'm cranky and headachy all day. So anyway ... you have my sympathy, and my earnest wish that you get some good restful sleep.

Ronni, thank you for posting about the darkness that surrounds sleepless nights. I struggle with that, too, and your comments were helpful. The Rilke quote is breathtakingly true. And good for Care Partners for recognizing in your blog what we, your community of readers, already see.

Diane's comment about being shocked to see the photo of the man smoking reminded me that when I was first diagnosed with asthma, in the 1990s, I attended a few informational presentations at a local hospital. Imagine my surprise to see that our meeting room was next door to (wait for it) the employee smoking lounge. I think that hospitals have gotten better at connecting the dots since then.

I sympathize with your lack of sleep, those nights where thoughts (especially scary ones) won't turn off but keep coming. I use a sleep apnea machine, take melatonin and CBD, and read before I sleep, but the only thing that really works is meditating: just watching my breath. It takes a while (sometimes even an hour) but gradually my brain settles down. I'd do anything for even six hours of straight sleep.

Wonderful.

I thought I was the only one who was mad at their body. I had rarely been ill and even when I caught cold I could "shake it off" in a day or so. So when I became deathly ill in a very short time I found myself questioning my body.

"What, I didn't feed you well?" "You didn't like the vacations we took together?" "That expensive mattress I bought for you was not to your liking?" "I even quit smoking for you. And now, just as I am about to enjoy my retirement, you quit on me?" Go f**k yourself.

It didn't help. Or maybe it did. I'm still alive.

You are so dear to me. This piece has the intimacy that is so often shared between very dear friends over tea. Thank you. My heart is immensely grateful for your continued willingness to share your journey with this caring community that has come together because of you and that is always surrounding you.

Next time, before descending into darkness, why not phone someone. Hugs.

Many thanks to Annie Gottlieb for finding the Rilke quote and to you for sharing it. It really struck home with me. At 77, with my special infirmities, I often feel that my body and "I" are not working together as we used to. I am surprised by things my body won't do easily any more, and I get exhausted trying to do them anyway. It's frustrating. Now, after reading the Rilke quote a few times, I see the problem as one of the process of getting ready to separate. All in good time. I'll try to be more cooperative, give the ol' body some help with daily pain relievers and a more regular sleep schedule. Thank you, Ronnie for your companionship. I wish you a restful sleep.

How appropriate that your blog is being recognized and linked to by the organization. I know how desperate people can be when sleep refuses to come over a long period of time, I saw my dear hubby suffer greatly from lack of sleep. I hope this week brings you some dearly needed sleep.

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