Vedova Parlando — What I was told in Cornwall & have been reading …

From Times Literary Supplement: Luxembourg Gardens, Paris, by Eugene Atget, c 1902  — the TLS is probably my favorite among all the periodicals I subscribe to

The anguish never ceases …

Friends,

One more about this Cornwall trip and its aftermath: I don’t let myself speak hard truth too often but once in a while I must let some full truth of feeling speak

I didn’t tell that the friend I was partly with, Stephen, confirmed my hunch about what caused esophageal cancer in Jim. After I told him much that had happened, he said, yes, when a hernia formed in Jim’s diaphragm, it became a constant irritant to that and other organs nearby. I had said how at first Kaiser gave Jim a strong prescriptive medicine that endangered his kidneys. He had been suffering terrific acid. Every three months he had to take a test to see if his kidneys were managing.

Then (they said) and over-the-counter preparations had improved enormously and why didn’t Jim try one of these. It would not threaten his kidneys so directly. As I recall at first the non-prescription pills helped, but gradually (over the years) it seemed to me Jim was eating 5 tums at a time and even several times a day. Why didn’t he go to to the doctor? For all I know Jim might have told the doctors about his suffering with acid. Until this last fatal illness, Jim would not let me come into the doctor’s office with him because he, Jim, wanted to be in charge wholly. I doubt they advised a preventative esophagectomy: he would have told me that.

Stephen implied they should have done one of these – -or something about this extraordinary condition. When I said the Kaiser people said that the hernia was not implicated, Stephen laughed and said obviously this rubbing and acid was the trigger. What is cancer but an error in replicating one’s DNA? His cells would have been constantly made sore. Stephen said the suggestions Jim’s smoking or anything else were not the culprits: alcohol insofar as it exacerbated his stomach distress — it’s a poison.

Now I know too that I didn’t contract hepitatis C 40 years ago; that is between, 1976 and 1984 when I had several hemorrhages and was given blood. That’s what the Kaiser Dr Chowla and the others all claimed. (Chowla looked at me suspiciously as if I had been taking illegal drugs. Oh no it could not be Kaiser.) So  supposedly for decades I was exacerbating my liver with alcohol while having this virus and it was still in good condition. Even she saw the improbability.

I said it was more likely three years ago when I had the semi-permanent denture on top of four implants put in my lower jaw. They said, could’t be since they have these impeccable methods. I was also on this trip rooming with a retired nurse. She snorted when I told her what Kaiser said, and replied “sloppy techniques.” Hospitals are places where people contract illness because of sloppy techniques. Of course you contracted it more recently, said she.

Kaiser doctors are ever protecting themselves against suit. Careful to protect their place in the organization.

I remember after Jim contracted this cancer my neighbor told me his father-in-law had had a preventative esophagectomy (it has some medical name) and he advised others ever after not to. He had been made miserable by it: he couldn’t eat much, and only the blandest food. Now I think to myself, he was still alive years later. Then I still (foolishly) was led to hope that perhaps the operation done then, chemotherapy and radiation would save Jim.

Now I’m thinking how long ago was that? I didn’t know the man’s age. Maybe when Jim was in his mid-40s when this hernia occurred, there was not the skill or ability to do this drastic surgery. Can anyone be sure Jim would contract cancer? they might think this measure could cause other fatal events? They might have recommended some other harsh medicine. At the time Jim was contracting diverticulitis and at each episode he’d take this super-strong stuff and suffer. It would work after a while. A surgeon did offer to remove part of Jim’s lower intestine but Jim declined “for now.” Said the medicine was working better than it had. Who knows what kinds of mistakes could happen in such surgeries?

I’m telling this now because I have been very hurt by people’s comments when I tell this. Stephen right away said, he should have gone to the doctor, and implied I was in the wrong not doing anything. He is a tactless man, his politics utterly heartless, and we hardly knew one another for real — he comprehended little of my feelings.

Others since have been more aggressive and said to me, it was Jim’s fault — or mine. A few years ago on a listserv a woman having read something I said about what had happened, pointed out that Hilary Mantel was still alive because she had been so smart about her medical conditions and aggressive and thus saved herself. I asked this woman, do you mean to say he’s dead because we were so stupid, to which she replied, if you can’t face up to the truth, that’s your look-out. She wanted to believe that if you are smart you can beat terminal illness; maybe there is none?

I did tell from early on how Jim would not go for a second opinion to a super-expensive doctor in Boston, would not take the time and put off the operation to see another who would have advised massive amounts of chemotherapy — said to be successful nowadays for some. Others it can be a disaster, but it is more and more successful, better than brutal surgery which does not stop metastasis. Then when 5 weeks after that horrendous operation was healing, and the cancer had spread, he would not try for Sloane-Kettering — a friend had offered to try for an appointment. No guarantee of course. He was by that time so weak and sick. He couldn’t face even the idea of removing his liver or parts of it after the operation he had had. I couldn’t see how I could get him to NY short of a chartered cab or plane and cab.  But this is the first time this implication his death was his or my fault was said so explicitly — by three people now. People can’t accept death as natural and to be sure Jim died hard, his body fought death tooth and nail as he was not 90 but 65, and strong before the cancer began to devour him.

I have to live with Jim’s death every day of my life, every night I go to bed. I push it from my mind by keeping so absorbed in my studies, reading, writing, movie-watching, teaching, going out to plays or whatever can absorb my mind. I distract and tire myself as best I can. Now I have this to live with.

Wyre Meadow — “Ruskin” Land — I was at the National Gallery yesterday where there was an exhibit of Ruskin’s art — I didn’t get to see it, but this image is appropriate for him (click to enlarge)

A well-meaning friend gave me an anthology of widow’s reflections called Widow’s Words, and edited by Nan Bauer-Maglin. I’ve now read many memoirs of grief, fiction, poetry, and for the most part they have helped me — I’ve felt much less alone; I’ve found that my experiences are common; some of the thoughts others have written down have helped me cope. Best thus far are Julian Barnes’s third essay in Levels of Life, Sherwin Nuland, How We Die, Jacqueline Lapidus and Lise Menu’s anthology of poetry, Widow’s Handbook. But this one makes me feel terrible. Almost all the women are upper middle class and very successful people in life; they have no troubles about money (this is very unusual for widows); they are surrounded by family and just tons of friends. When they have a gathering to commemorate the spouse, 300 people show up.

Along the way we learn how successful the husband was, often this famous scholar; one left a large archive of his papers which seems to have constituted his widow’s worst problem. She was determined to get out of the apartment but she didn’t want to throw away his life’s work in papers, document, editions, books, essays of all sorts. Finally the college she was chairman of a department at took the archive. Then we usually (not all I grant) hear how well they are doing now, how useful their existences, how busy, and most have a new partner.

Good thing I didn’t not come across this earlier: among Jim’s last coherent words to me were “I don’t want to die.”  I probably would not have killed myself reading this earlier (though it can make me feel so bad) because I learned in that first six months after Jim died that I didn’t want to die either.

I have found I am too old and ugly to attract a man; it may be that I give off signals “noli me tangere.” Do none of these women find submitting to a man sexually once again too much to ask?  Submitting by a woman is central to the experience. I don’t enjoy performing fellatio to be frank, nor anal sex. And there’s how about living your own life according to your own patterns and not having to be sure to please him or fit into his preconceptions or life patterns? They are just all buoyancy with strength enough to remain an individual …

Of course I’d have known this is not a representative book at all. Why then have I read about 3/4s of this material? Well because they are so confident, filled with a sense of their admirableness, they tell more truths in other ways: this is the first anthology I’ve read where the woman really tells the horrors of pain and suffering that the victims of some of these hugely painful fatal deteriorating diseases goes through in the US — especially when it’s cancer. They also tell of the abuse they put up with — from the hospice, from the medical establishment, not usually from the insurers (though here and there ominous comments about egregious bills are alluded to); but, what is most astonishing, from their spouse or partner. Most widows or widowers hide what they went through and do not admit to enduring as a typical experience vexation, corrosive cruel comments, denigration. In the Widow’s Handbook there are cases where the husband lied and left her broke, or without a pension or any health care but this area of emotional life is omitted. For once the “battle” is not presented as heroic and self-sustaining.

Indeed some of these people seem to me to behave like mad people, crazy.  Several of these essays tell of ceaseless toleration for pain with the implication practically until the person stops breathing and his heart ceases, that he may yet live. There is nothing they won’t do and to give up hope is what they refuse. Utter unrealism to the end. Well I suppose we may say their death is not their fault. They don’t seem to realize they are putting in for this horrendous experience. Maybe this is what is meant by that word “battle.”  It’s as if they have no other choice but to torture their bodies to the end. People are really kinder to their pets.

I remember Jim telling me once the operation was over and we did realize what a mistake this had been, “don’t let them hurt me” if I can’t protect myself from them. And I didn’t let them.

Bauer-Maglin herself has a couple of pieces where it’s clear her husband was violent bully: she seems to have looked upon this personality as admirable because so strong and effective. He left her once for a much younger woman and then came back. Since this anthology reflects her outlook, it’s not surprising that her pieces are characteristic of the whole volume. She chose people like herself that she knew — heavily New York City and east coast academics. So she too is doing splendidly well now. How could she think it would help others to have gathered women together to say how wonderful their existence still is and ever will be?

Well mine isn’t. I still endure the same ordeals that I have to encounter without Jim, and as ever (this is true when he was alive too) I do what I can, and what is hard for me doesn’t get easier. I am literally alone except for my cats most of the time. My life is mostly quiet and peaceful and sometimes pleasant and I know some enjoyments and have felt a few accomplishments (even if others would not recognize these as accomplishments because they don’t recognize me).

I remember that many widows, many people have much worse things to contend with than I do because Jim left me much better off than solvent and unexpectedly I inherited substantial (for me) savings from my mother and father, and an insurance policy intended to give me a lot if he died at 65 or before. I pay decently honest people to help me with my money, the garden, the cleaning of the house.

I have many internet and FB friends and acquaintances, lots of acquaintances from the two OLLIs and from the scholarly conferences I have gone to a couple of people carry on emailing me once in a while. I have my books, movies, this computer, my house (including nowadays a few small garden patches). My teaching is for now going very well: the people like the Booker Prize books I picked out and enjoy the films.  Unlike the lady with the archive, the world Jim and I created together — our house with everything in it  — gives me what meaning I feel, and what safety I have now. (Shall I tell you I know her and happened to tell her my attitude and her reaction was light scorn; well, if you want to delude yourself … ?) I watch Isobel bravely stalwartly carrying on. She is now at work on  a new song.

But I will never write the book I would like to write because I can’t travel by myself to do the needed research; I can’t figure out how to use “word” program so won’t send off essays to journals. I would like to do these and other things.  So I don’t need to be told the life I am driven to lead now without him is my fault, or it’s his fault that he was cut off from time and life and erased from all existence, leaving behind just the things he used and had gathered for himself and us.

A photo I took from the front part of my garden this weekend: the flowers won’t last, so I take a photo to remember: I like the dark yellow ones on the wide bush best …

One thing I cannot begin to convey with a photo is the intense relief I feel when on these trips I go into a large church or cathedral, which is cool and quiet. I feel this strongest in the central nave, and it’s most common in Anglican churches — some large formal beauty but not overdone — sitting by one of the columns not far from the usual row of high windows. I like the absolute quiet, away from sun and noise and movement. It is broken (sometimes ruined altogether) when a guide comes by and starts to talk and a crowd forms, or worse yet, people begin taking these endless photos. It’s at first just getting in to a sense of deep escape. I am not communing with any god. It’s solitude in these places of stone. Quasimodo: remember Charles Laughton’s cry at the end of the 1930s film.

And, so as I enter here from day to day
And leave my burden …
The tumult of the time disconsolate
To inarticulate murmurs dies away
— from Longfellow’s sonnets on translating Dante

Ellen

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