Day thirteen.
Susannah has been in mental limbo for about a week now. The current medical narrative is that her delerium is mostly due to her serum sodium levels (as Anaïs says “Just salt? We're all that close to the other world?”). Another theory is that her liver and kidney issues have created a bottleneck of drugs that have psychoactive effects. And still another theory is that she is reacting badly to particular steroids. In any event, her cognitive state definitely seems to be linked to liver and kidney trouble, which, in turn, seems to be improving in the last 24 hours. The nephrologists have been talking abut dialysis for the last several days, but now they seemed to have decided it's not needed.
It's been morbidly fascinating to watch.
Initially, she went in and out of a very self-coherent otherworld, which she could describe in precise detail. Her contingency reality was also a hospital, but of a different kind: it worked on the soul as well as the body, and there was no clear distinction between patient and physician. It also seemed stocked with the culinary, aesthetic, and erotic possibilities that Brigham and Women's frankly is not. For about two days, she was capable of going back and forth to that place more or less consciously, and would become a little cross if the nurses worried about it. (At one point, she was discussing strawberries, and one of the nurses asked if she was feeling confused. “No,” she retorted, “I'm talking about my delusion of strawberries. I know there aren't any real strawberries.”) I am a lucid dreamer, mostly, and I have the impression from her descriptions that this phase of her delerium was a lot like lucid dreaming.
Subsequently, she was in Haiti, trying to help the children there. She drifted into Spanish for awhile, which I could follow, and then into French, which I was pleased to find I could still follow, though my French is very rusty. And since many of the staff speak either Spanish or French, this was all workable. But then she went into Russian, and we were all shut out.
For the last three or four days, though, there is no outward evidence that her delirium is in the form of some internally consistent, oneiric narrative. Instead, it seems to be just a flux of words and grammar and numbers. There is an underlying logic--she often makes her "don't patronize me" face if someone, well, patronizes her. But she changes case constantly, speaking of herself in the third person, or—more strangely—the second person. She talks about other people in the first person; she transposes past, present, and future.
Most of you probably are not aware of this, but I have spent a long time lately working on grammar-parsing algorithms. I cannot help but marvel at seeing the heuristic “subroutines” of this woman—whose mind I know so well, and who is so horrifically intelligent. It feels exploitative and inappropriate, but there it is.
My own heuristic subroutines, and those I see around me, are strangely familiar. Some years ago, Woody Dorsey hired me to work on a book about behavioral finance. In effect, we were interested in the empirical psychological research on why stock traders behave the way they behave, (as opposed to the neoliberal economic model of the same.) As I mentioned earlier, some of those studies are literally based on psychological reactions to medical events...colonoscopies and leg amputations, I think.
Like stock traders, the families of cancer patients are presented with a series of numbers whose meaning they often are not really qualified to interpret. And so we assign normative values: we believe in the virtue of a lower creatinine count, and a higher poly- count, even though we have only the vaguest idea of what these things really are: I'm not even sure what “poly-” is short for, in this instance. More to the point, we have no idea whether an 0.1 drop in creatinine over 12 hours is insignificant or earth-shattering or just normal fluctuation. We don't even know what units “0.1” is expressed in, and yet we have strong emotional reactions to this information. Based on the variety of our temperments and levels of exhaustion, we tend to read all these numbers as optimistic or pessimistic symbols, which, of course, they are not. And for every pair of numbers, we believe we have found a pattern, a trend line.
There is a strong parallel with stock traders talking about, say, gamma, vega, or charm. Or, again, with someone tuning in a station on a shortwave radio dial, who has no idea what all these meters and kiloHertzes are about. But it's so wonderful to hear a signal coming back through out of the static...
I am glad that Susannah is good enough to let you report about her situation with some calm and humor and draw some interesting results from her experience, instead of patronizing her -- which she would detest. Hope her situation improves and the worries about her kidney is also resolves. Much love, M
ReplyDeleteFor years I've had a habit of semi-lucid dreams (usually at 5:30 a.m. when the alarm clock goes off) in which I get out of bed, make coffee and breakfast, take a shower, and have even made it as far as out the door and into the car before realizing that, well, I'm still firmly in bed. Mostly I think it's just my brain trying to prepare itself for leaving the bed and getting on with life. The amazing thing is how much easier all of it is in my dream, and usually includes a great breakfast. I've been known to state, "No, leave me alone, I was just about to shower."
ReplyDeleteThey say that if you dream in a foreign language you truly "know" it.. I wonder how that applies to being delirious in it?
My guess is that when she comes out of it she'll want to know all of your observations and interpretations of her experience.
Thank you as always, Ethan, for keeping us posted when you must be emotionally, mentally, and physically exhausted yourself.
Love to you both,
-Margaret.
Hello Ethan,
ReplyDeleteExpressing these thoughts, I'm sure, must bring a torrent of such recommendations, but I was one of the people who didn't know you'd been working on sentence algorithms, and especially given your observations of Susannah's delirium narratives, you might be rather interested in parts of Alice Flaherty's /The Midnight Disease/ -- the strawberry anecdote sounds SO much like an anecdote she describes, in which she's trying to tell a doctor that her hand appears to her to be a claw, and she's trying to explain that it's not as if she thinks it IS a claw, but rather that the metaphor is incredibly captivating -- but he just notes down, patronizingly, that she appears psychotic.
In any case, I suspect you would find her observations interesting, and someday I look forward to a long conversation about sentences.
Valentine
Hi Ethan & Susannah!
ReplyDeleteThinking about you here in Vermont...I'll be "joining" Susannah in Haiti soon. Only wish my French was not so rusty!
Thank you for keepiing us updated, give Susannah a hug for me!
Best,
Karen
Ethan & Susannah - Just a quick response to let you know I (among many) await every word. I am so grateful to you for keeping us posted. Well..more than posted. As always, I am learning from you.
ReplyDeletelove,
Peggy
Ethan--
ReplyDeleteThis is Susannah's Uncle John (of the Watson persuasion). In addition to the news on Susannah's progress, I really appreciate the insightful things you have to say about illness and culture, etc.
I am one of those whose (unspoken and unrealized) notions on cancer and illness are those of 1960s--only 50 years back. My mother, Elizabeth, had heart disease, and my father, George, had prostate cancer. I assumed that because I took better care of myself (especially in the area of exercise) ate responsibly and the like, that I would be immune from these diseases. When both turned up in my life during the past 10 years, I was shocked (and inwardly ashamed). Something inside me was suggesting that it was my fault. Even though rationally, I know the the primary indicator for both of these conditions is family history. And my reaction was to keep the knowledge private--only family.
Which brings me to test numbers. I was lucky that both diseases were diagnosed early, before I was sick, from tests. And so the treatments have largely been ones that preserved my quality of life, because not much damage had happened yet. But for the life of me, I haven't been able to get a straight answer about the reliability of test numbers. Just what IS the error bar on a PSA test result, or a LDL test result? What is the variability on a test score if the same blood draw is split and analyzed twice? What is the variability of scores for an individual on a day-to-day basis? Is there any consistent difference with results from different lab, Quest vs. Labcorp, for example. No one can tell me, especially those who use those numbers to advise/prescribe on my health issues. And these questions don't address the question of how reliable these test scores are for diagnosis!
Ethan
ReplyDeleteThough this is a terrible situation, you are a fine and gentle narrator and I appreciate hearing about the strange world you guys are inhabiting through your eyes. Big love, big love, and oceans of hope for a salt balance that brings S. back to English, or at least any of the other languages you've got a handle on. It all comes back to Salt, there's a great book by Mark Kurlansky all about it.
Queridos EyS:
ReplyDeleteHaven't check on the etymology of OK. But since you say there's not one on record then OK most be the obverse of KO.
I don't really like the way that James Watson seems to get too cozy with Monsanto, and other outfits he thinks are better off doing science unimpeeded by much. But I am in the middle of his DNA book from c.2003. The book has been my constant trigger to pray for you both in somewhat specific biochemical detail. I also remember you both while translating with Susan F. In terms of foreign policy -- Cynthia G and Susan put the Cubans to pray for your guys. I haven't checked, but I imagine the Costa Ricans most be doing something.
Karen and I are going to Canada from Wednesday through Sunday -- Will I get laundry tomorrow?
Let me know at 413 687-5049