Irregular patterns of sleep, word has it, is part of aging. In my effort to fit in and follow rules (LOL), accordingly I awakened at 04:30 this morning, having fallen asleep around 21:30 last night; not an awful night’s sleep, but I prefer to sleep until 06:30 - 07:00. Anyway, I knew sleep was finished, so I did my get-out-of-bed ritual (it takes 10 minutes, but I’ll spare you except to say it is a challenge to put on my pajama bottoms and socks in the dark). I try very hard to not awaken my wife, who always sleeps later than me.
After I had my coffee #1 (of 2) and cognition achieved ignition, I started to reflect on things, as usual. For some (or maybe no) reason, it came to mind that in their ordinariness, my days have little variation since 1. Retirement in 2019 and 2. My wife’s malignancy beginning 01/2024. For most of 2024, we only left the house for chemo, doctor’s appointments, and grocery shopping (me only). Had someone told me 20 years ago that this would one day be my horizon, I would have winced.
In a significant demonstration of the need for humility when it comes to forecasting the future, my ‘might-be’ prognostications proved entirely wrong. This period of almost 16 months has been one of the most, if not the most, meaningful (dare I say ‘happy’?) of my entire life. To make a long story short, I have been given the gift of gratitude for my capacity to be of some help to my wife, Gigi. Not once in witnessing and aiding in any way I could, have I felt burdened. Had this been predicted to an earlier rendition of me, I would have balked.
Anyway, this morning I was thinking about the future. I will turn 81 in July; Gigi 73 in August. My lineage has good longevity, with all my forbearers having lived to 90 or more. Gigi’s mom died when she was 9 (this had an enormous effect on her), her dad at age 79. Be that as it may, I realized this morning that my normalcy bias is at work in my imaginings of tomorrow. I fully expect it to be the same as today, with my age-related limitations remaining unchanged. It brought to mind the urology questionnaire I’ve been filling out annually since my prostate gland asserted itself.
After surveying the list of symptoms of LUTS (lower urinary tract symptoms), comes the coup-de-grace: Would it be acceptable if this were to be your status permanently? When I was first asked this question, maybe 30 years ago, the answer was ‘No’. I think it changed about 15 years ago as I learned to live with slower, less forceful stream and nocturnal excavating from one to three. For many years now, I have kept a urinal at the bedside, because it is much less disruptive of sleep to pee sitting on the edge of the bed. This is emblematic of the adaptations one makes in coping with infirmities of old age.
Though I don’t dwell on it, I do wonder as to our and my future. Mainly, I try to remain capable of helping Gigi. It is very likely that her cancer - primary peritoneal adenocarcinoma - is rare and not considered curable. Her chemo finished last August and her response was quite good, though there were numerous complications with considerable suffering for her (and powerlessness for me). She has been very courageous through it all - inspiringly so. About 3/4 of the way through chemo, she underwent an open laparotomy for removal of the omentum (where tumor tends to hide).
At that time, there was no visible tumor, a most favorable result, considering that three months earlier at a diagnostic laparoscopy, almost the entire inside of the abdomen was covered with a layer of tumor. As expected, there were still some tumor cells present in one place (and probably others). Now having completed chemo and ‘coasted’ and regained some strength and some sense of normality, though there are no symptoms. CT and blood Ca 125 are both normal. The plan is CT scan every 6 months and blood test for Ca125 antigen, alternating, so one of the tests or the other will occur every three months.
The odds are about 90% symptoms will return within 2 years of completing chemo. Accordingly we live one day at a time. Though we would like to travel somewhere ‘easy’ to get to, we’re loathe to do it (in part because in the wake of severe C-diff - one of the complications mentioned - there are still bouts of sudden diarrhea, maybe once a week). Obviously, the recurrence of symptoms could happen at any time and cancellation of a reserved beach house big enough for our extended family of 12 people, would be costly and uninsurable.
So these days, Gigi gets around the house, and drives herself to some of her appointments, like the dentist, but becomes exhausted from just standing at the kitchen counter and preparing food for less than 10 minutes. Like me, she spends time reading and browsing. Unlike me, she does puzzles (sudoku, word puzzles) online and various small crafts - currently making things with beads, knitting and embroidery. She says she is content with life as it is and - surprisingly to the former me, I am content as well.
Intellectually I know that, barring sudden death from one of several possible causes, the odds are I will continue to slowly deteriorate. In the alternative, barring diagnosis of some malignancy - which could well be a worst-case scenario - tomorrow will be, most fortunately - “same gratitude, different day”. The main point I want to share is my sense that I am the unlikely beneficiary of a certain grace. There was little about the younger iteration of me which would have led anyone to foresee how I would respond to our present life circumstances.
Amateur philosopher and recovering addict that I am, I’ve thought a great deal about the nature of will and will power; of power and control over self, of others, of our surroundings. Obviously, this is at the heart of addiction and recovery. I believe that the ontology of human mind is such that we do not possess the faculty to directly choose the next conscious thought or desire by will power (maybe? to a limited degree, some yogis/mystics with years of meditation practice?). When in active addiction, I was incapable of banishing thoughts/desires of using by will power. It was impossible, since once the thought occurred it became an obsession. Using was the only way out of the obsession.
Recovery from addiction begins with accepting one’s powerlessness to ban the desire to use or drink. Twelve-step recovery works by misdirection. It is a behavioral technique. It says that undertaking a series of simple behaviors, unrelated to using/drinking and which can be initiated by will power - will inevitably lead to changes in thought processes. Specifically, this means that by doing a series of uncomplicated behaviors over a period of days/weeks/months, the probability of thoughts about using will inevitably diminish. Thoughts about using become much less likely to arise in the first place; there is thus reduced frequency of the need to resist. The process (with help of other sufferers) becomes self-reinforcing over time and the desire to use simply vanishes.
In light of this life-changing experience, I knew from the beginning that I would be unable to choose my emotional response to Gigi’s terrible illness. I knew what my behavior would be - that I would do anything I was capable of doing to reduce her pain and suffering, even if the old, self-centered me resented it. But that’s not what happened; I didn’t resent it. That’s because for then-unknown reasons - from the get-go - I felt grateful for my very capacity to be of any possible help and support to Gigi. From the very beginning, I felt gratitude - grateful that we were alive and together, grateful I was well enough to simply be present with Gigi and able to do the mundane stuff which needed to be done - much of which was simple home management which she has done up until then.
I recall my thought process and it centered on something Sarah Palin said when she was the VP candidate. She spoke of doing something “with a servant’s heart”. This small expression had already had a tremendous impact on how I functioned as an anesthesiologist. Originally imbued with the typical doctor/power - patient/weak authoritarian paradigm, I was finally mature enough to recognize my proper role and that simple expression characterized it. Perceiving myself as a collaborator, unequal only at the level of medical knowledge I possess, was liberating. My responsibility was shared with the patient, no longer dictatorial. Long story short, I finally felt good about myself as a physician.
Grace granted me the gift of gratitude at the emotional level at the start of Gigi’s illness. What I would do was never in doubt. As with the behavioral program of recovery, the process was self-reinforcing. The more I did, the more grateful I became. All this occurs in the context of awareness of continuing slow decline and biased expectation of tomorrow’s projected similarity. Interestingly, surprisingly, it is a comfortable juxtaposition of fact and illusion. I’ll take it. Not only because I haven’t much choice, but also because it’s more comfortable than I experienced through most of my life until now, when my illusion was invulnerability.
APOLOGIA: [Long, I know and I’m sorry. It somehow helps to set down and share some of my rumination (another hallmark of senescence). Kindly excuse typos and inadequate editing, yet another age-concomitant. I blame the prolixity (logorrhea?) on law school, where I was moved farther to the right and learned how to say “f#@k you” in three thousand words or more].