The hidden meaning of suffering as revealed during the experience of a total eclipse

Mortality. After a certain stage in life (for me it was retirement and turning 70), my focus seemed to turn like a laser beam to all the health matters that I was suddenly aware of, but had hardly thought about in previous decades: hypertension, cholesterol, prostrate issues, increased need for colonoscopies, aches and pains, losing my balance, and fear of falls. Wham!!

I also had been focused for years on caring for my mother who had diabetes and dementia. She was in a very slow decline for a long time, and I was painfully aware then of “her” mortality, not mine. When she passed away in 2020, everything seemed to change. While caregiving, I seemed to have unlimited energy and vitality, and now, not nearly so much. My energies, my love and total attention were focused away from myself and on another person. That was a powerful and transformative time, unlike any I had known before.

Caregiving for a loved one, year after year, was the most meaningful and vital thing I’ve ever done, but it came at great cost to whatever autonomy I had prior to that. However, it was a price I didn’t, or couldn’t, hesitate paying, not for one second.

Now I live with the memories of that time, preserved in great detail in passages from my Dementia Journal, which was pretty much the only thing I wrote from the years 2013-2020. About once a month a lengthy and detailed entry spilled out, pent-up and suppressed emotions and thoughts came forth from that seemingly endless series of dark nights when Mom’s dementia was reaching the worst stages.

I hardly ever look at those journal entries because it seems like another life, almost another person doing the writing. There is now a renewed preoccupation with self, not only because I live alone, but because I feel my life’s work — job, career and caregiving — are over. Something has to take its place, or does it? I fight off feeling guilty that my life is not as worthwhile after the intense devotion to the needs of another required by caregiving.

Maybe it’s time to really live in the present, day by day, and see what comes as I do my best to be kind and compassionate, giving and unselfish, while trying to keep my equilibrium, if not sanity itself, in this world that is changing so quickly, and with so much foreboding, before my very eyes. I never thought the possibility of end times would be here so quickly. And by “end times” I mean the fact that we are closer than ever to species extinction through nuclear war and/or human-caused climate change.

When I was focused almost entirely on the well-being and comfort of my mother as her dementia worsened in the years just before the pandemic and other unthinkable possibilities for the human race became very thinkable, my inner world was in tenuous harmony with the external circumstances of dealing with the existential nightmare that is dementia.

What was that time actually like? To answer that question in part, I am re-posting this Dementia Journal entry from August 23, 2017. It is titled “Of Eclipses and Dementia” and is representative of my thought processes and state of mind at the time.

Of Eclipses and Dementia

It’s been almost three months since I retired, and my working years now seem like some distant past life. Even though I go back to visit my friends where I worked for the last 21 years, it’s like I’m entering a place I’d merely visit, as opposed to a place where I worked for so long, and whose surroundings had became more familiar to me than anything I had ever know before. Now they seem familiar but a bit alien as well. It’s difficult to explain.

I’m sitting here on the porch in my favorite rocking chair, the fan sending a pleasant breeze my way, thinking about all I want to write here, listening to the sounds of people out and about on the street and sidewalk. We’re near downtown so there’s always people walking by, and of course, all the area residents with their dogs. The total eclipse here was about three hours ago. It’s been a strange day. There was no caregiver until 4:30 so I couldn’t go anywhere, not that I really wanted to. Mom was sleeping much of the time, but when the day slowly and dramatically turned to night in the middle of the afternoon, she noticed. Dementia or not, her awareness of something strange and unusual happening was keen. “I’ve never seen anything like this before,” she said. I sure hadn’t either.
We didn’t have any solar glasses. I just took in all the sensations and emotions I was feeling. I’d seen and read a lot about the totality. YouTube has an indescribable quantity of videos, everything from personal experiences to science to conspiracy and signs. I’m sure it was an extraordinary experience to view it completely, and although I was curious to witness it, I didn’t need to. I think a lot of people actually felt they HAD to. I couldn’t go out of the house anyway, at least not for any period of time. An awe-inspiring cosmological event is not going to change my life, as some on YouTube promised. I don’t care for crowds, period, including crowds and spectacles. So it’s all over and done with now after a week of hype. Down here it took our minds off the mind-boggling events in Washington and an active hurricane season.

Back to all that now. I have my own definition and examples of awe. A glorious sunset lighting up the early evening sky or a monarch butterfly on a brilliant red zinnia, for example. Life is full of awe every day, if you look for it. That’s why I’m always ready with my camera wherever I go.
Being retired has meant I have much more time to ponder all the events going on in the present, to think about life, and to reflect on where I’ve been up until now. I never felt this sense of past and present coalescing so dramatically before.

The past has become much more poignant, vivid and alive to me. It’s like I must go back, to the past when I was young, which represented a better time, as in my 20s. Those years right after college were indeed golden and unforgettable. But then the decade of my 30s came along with its unending rootlessness, times of unemployment and never being able to settle down. How did I cope then with all that? Every year I took long road trips across the country.

Going through file boxes of memorabilia and photos is a way for me to cope with the present, despite the anguish of seeing my mother slowly fade away. Every time I see a picture of her from years ago or read one of her letters, I don’t even recognize the person I see now. In some ways she seems like a totally different person. But I also wonder how well I ever really knew my mother. I was always in perpetual conflict with my father up until his final illness. When you never felt welcome in your own home, even as an adult, that drives a wedge between the other parental relationship, as well. So the person I am taking care of now is someone who was as much mediator and protector as mother. I didn’t actually see her that often when I left New Orleans after college and started life on my own in Columbia, South Carolina back in 1973. Even though I didn’t see her much, I loved her dearly, but at a distance. Parent-child relationships are often that way, I feel.

The longer I have to deal with Mom’s dementia, and the worse her memory and health become, the more depressed I get. One can certainly see why it’s so hard to shake off. It really takes a monumental act of faith sometimes to just feel normal, let alone happy or content. It’s an effort getting up in the morning after I’ve been been up so much during the night. I’m going to try some counseling this week after putting it off. I really don’t want to. But it’s getting too difficult to cope now. In my next entry, as part of my ongoing Dementia Journal, I am going to post some text messages I sent this summer to my brother and sister and a good friend. Sometimes in the midst of the worst episodes with my mother, I text. It’s another way of coping and keeping my sanity.

Going back a moment to the eclipse, depression makes it very hard to look forward to, or even appreciate, things that in a more “normal” state of mind might have been thrilling and transformative. I had to imagine the totality, what the sun looked like during those awe-inspiring moments of wonder, but just seeing the darkness descend in the middle of the day was a visceral experience and astounding experience by itself.

However, when not too much earlier in the day I was cleaning up and changing disposable undergarments, dealing with incontinence, and trying to get my 93-year-old mother back to the sofa without a fall, it’s very difficult to see the sun behind the clouds, eclipse or no. When I do get her settled again, the questions start: “Who are you?” “Are you my son?” “Where are we?” “Is this my home?” And sometimes it just doesn’t stop until she dozes off or goes to bed.

There’s a dull ache in my brain this afternoon, but just as the sun began to emerge from the moon’s shadow after that very brief, surreal time of total eclipse, so, too, do I realize that the pain and suffering both my mother and I are experiencing will end some day, and there will be a new dawn, no matter when that finally occurs for both of us. Suffering will have served its purpose.

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January 21, 2023

This entry really resonated with me because I have lately been feeling like I’ve done what I was here to do…so, now what?  I know there’s still a lot of good in life, but most days I just find myself bored and wondering what to do with my time.

I think it is so great what you did for your mother.  She was so very blessed and lucky to have you.  It must have been so very hard watching her slip into dementia and not know for sure who you were.

I love what you said about how well did you really know your mother before the sickness.  I wonder the same thing about my daddy.  I know and love him, but how well really do I know him.  I don’t see him that often really.  I also have wondered at times how well my own kids really know me, especially the ones that no longer live here.

Great entry.

January 22, 2023

@happyathome Thank you for this interesting note and the kind thoughts!

If you know there’s still a lot of good in life, there is that good to discover and enjoy.  You will find ways to do that.  Maybe you can choose some area of knowledge or wisdom you want to know more about.  Your curiosity will grow until you become absorbed in that new quest.  At least, that’s how it usually works for me.  The problem is, I want to know too much about almost everything.  That’s  a major reason I became a journalist earlier in my adult life.

So, life is never boring for me, thankfully, because of the range of interests I have.  My mind is constantly traveling places to explore and learn about.  So, while I have little contact with others except online, I have plenty to do.

I’ve been this way especially since the advent of the Internet.  That changed everything for me.

As for wondering how much you really knew your father, or how much you know your grown kids, or they you, that’s something I think we all struggle with.  Sometimes I think it’s because we’re so busy knowing ourselves and concerned with our own issues and/or problems, that we don’t have, or make the time necessary, to really know others, including members of our families.

January 22, 2023

My focus too has devolved into my focus  all the health matters I’ve and others I suddenly am becoming aware of: diabetes, cholesterol, thyroid issues, increased need for colonoscopies, aches and pains, losing my balance, fear of falls, back pain, retinopathy, cancer & my recovery from it, my breathing problems, etc.  They seem to draw a big circle around me and life as I used to know it and I mourn that loss, mourn the fact that I’m virtually isolated from friends and activities by lack of transportation.  I’m still interested in so many things but can no longer participate in them mostly from lack of the physical stamina to do so.  I’m trying to reorient myself to the life I have (& it’s so much better than what so many have) and learn to enjoy the simple things & comforts that are available to me.  It’s not easy, is it?

January 29, 2023

@ghostdancer You got it exactly right.  As we slow down for many reasons, physically with aging, for instance, we come to realize that it’s that season of life where the little things we may have taken for granted mean so much more because they are all around us:  in Nature, keepsake letters and cards, memorabilia they takes us back to specific moments in our past, our comforting routines, a sunny and pleasant day,  and just being grateful to be  alive another day.

All my retired friends, and my sister and brother-in-law as well,  have to always be thinking about some trip to another country, a cruise, etc.   They wonder why I don’t get out and travel.  It’s very simple:  I simply don’t care to, Covid is still around and dangerous, and I am perfectly content at home.  I have four special places where I can revel in the glories of the natural world, all easily accessible, and I know where to find solitude in every one of them.  What more could I want?  Well, having only one friend here that I seldom see can sorta get me down, but I have so many things to do and so many creative and intellectual pursuits, that I can manage and thrive in this solitary life.  It’s not like at 72 I am going to change that that much.

I make do with the wisdom I’ve accumulated over a lifetime, realizing I still have a lot to learn, and that old bad habits are hard to quit, but each day is a gift and each day sustains me.  I have a feeling you feel similarly.

January 29, 2023

@oswego Yes, I do.  Kindred souls!