How shall I number these days and nights?

From Danger UXB (one of the great anti-war mini-series)

This is the anniversary of Jim’s dying two years ago. He has lost the ability to speak back as of October 7th and on October 8th he was beginning that terrible ordeal/agon of literally dying.

I feel I’m living through these days for a third time: the first two years ago, as he lay dying; the second last year when somehow I kept the sense of it all at a distance; and now:

On October 3rd this year when Jim would have been 67 I felt how uncanny it is that he is not here, how weird is death in comparison to how we feel about someone’s existence. We have to feel deeply that the person we are attached to has deep reality, and yet they are no more than 98?% water (as I’ve read in different places). I felt haunted the way I had for a time after my father died. Then it was the irretrievably of never being able to make contact again, and I felt such a strong desire to I projected psychologically a presence hiding somewhere, invisible, silent.

It’s not like that for Jim. I have this sense of the unbelievability of existence itself. I can hardly believe I am here concretely if he’s not. I don’t know why I don’t vanish away softly in the night — like one of Lewis Carroll’s mad figures — if he could so vanish.

I’d call such feelings are one of the origins of religious belief. Tonight we would have been married 46 years, met 47 years ago.

I remember Shakespeare’s lines as Prospero: we are such things as dreams are made on, and our little life is rounded by a sleep.

And also that 90th sonnet: Do not drop in for an afterloss … in the onset come; so shall I know the very worst … which compared to loss of thee will not seem so

Jenny Diski’s latest entry as she moves into death is devastating. Her cancer is for now (what a sardonic joke in such words) in remission, for how long (ditto) the doctors can’t say (as they know nothing). Like the heroine in Wit, she is dying in immiseration because of the effect of the treatments on her, her lungs gone, she has (like Hilary Mantel) been made to look awful so that she is alienated from her body. at once feeble, unable to walk steadily and fat. Why should she care say the heartless neat doctors and nurses. She opens with talking of letters she has received; I was almost tempted to write. We learn in this one she has two grandchildren and we know the father of her daughter, once her partner-husband died a couple of years ago. So her daughter parentless.

People have asked me (well one person) what is gained by telling of Doris and me, well the same thing that is gained by her telling of these dreadful symptoms, her pain, her feebleness, how others will not help except for the Poet. Insofar as you can stop people from mouthing nonsense about triumphs, conquests, and bravery and instead tell what cancer is, you help a little in the pressure to do fundamental research. The research that is done is expensive surgery to prolong life and pills that cost huge sums — all garnering profit. What they discover fundamentally is a bye-product and not much sought. The TTP was signed yesterday: a key provision fought over was the US on behalf of the pharmaceuticals (like the fascist gov’t it is) to give them the right to charge outrageously for 5-8 years; 12 was what was wanted and the “balance” is it’s just 6-8 and uncountable thousands excluded because of the price at least until then.

I omit all the provisions which supercede workers’ rights and hand a good deal of the world over to corporations (with military backing) to exploit and immiserate everyone who is not in the elite genuinely rich and well connected.

Cancer is our great and ever spreading plague — like the engineered (in effect) famines and mass diseases of early times — India, Ireland. Settler colonialism now exterminating the Palestinians a little at a time — punctuated by the terror of lethal bombing.

Diski speaks for us all — she says don’t talk about bravery so instead I’ll say she writes what she does because she cannot help herself and thinks truth has a function in the world that helps others– if only by saying see here I am, is this the way you are? if so, we are not alone.

Diski (before cancer)

She does say it’s hard not to feel what’s happening to her is a punishment — like it’s hard not to feel the death and disappearance of someone is uncanny. But what it’s vital to remember is not to take what happens ever as a punishment. That is your psyche doubling in on itself and wanting to find some reason, some ultimate meaning for what is happening. For me not comfort, but that way madness lies.

Miss Drake

“What is there of good to be expected?” (Mr Bennet, Pride and Prejudice)

Clary Pussycat — taken by Caroline — just behind my computer, now a favorite spot for this cat in my room

The surgical team was now ‘fairly confident’ that Quintana would ‘leave the table,’ although they could not predict in what condition.
   I remember realizing that this was meant as an improved assessment: the previous report from the operating room had been the team was ‘not at all sure she would leave the table.’
   I remember trying and failing to understand the phrase ‘leave the table.’ Did they mean alive? … Whatever happens, I remember thinking, she will without question ‘leave the table.’ — Didion, A Year of Magical Thinking

Dear friends and readers,

Today an intervention radiologist (the term for this skill) placed what is called a port (mediport) into the Admiral’s upper chest. It’s a device which is attached to a catheter which runs into a large vein; placed underneath his skin, it allows medical personnel to inject chemotherapy, medicine, blood, nutrients, other liquid substances directly into his veins (body). It spares the poor patient these painful IV which the chemotherapy can burn. The procedure required anesthesia, and there are some dangers involved. Last week (August 23rd) the people refused to do the procedure because (due to their mistakes) his blood had become too thin. We have discontinued (forever we said) all blood-thinners so his blood was in a normal range today. The hope of course is the chemotherapy he is to have on Friday (a first of what I take will be two sessions close together) will shrink the cancer.

Dr Pereira described our reason for doing it as “taking a shot.” From all I’ve read of chemotherapy it’s very much a double-edged sword. It really helps some people but it seems these are often people in better shape, whose cancer has not progressed and weakened them so swiftly. OTOH, some people have a serious reaction against it. Others it’s a wash, some help but not enough as it kills regular as well as cancer cells. And it sickens people; they suffer from nausea from it and I don’t know he can stand any more of hat.

I wish I felt more hope over what this could bring: more time to live, better quality of life as the miseries of the cancer recede if it grows smaller, but as he continues unable to eat and takes in so little and grows weaker each day, I fear the immediate effect will be worse than the good it may do. We have had several struggles over the past few days and after our new nurse (we have a better one at last, Hill is his name but he comes only once a week) told the Admiral what will happen over the next week or two if he continues non-eating, he did begin to ingest (swallow or drink) glasses of milk, or say 3/4s of a glass of the supplements (Boost, Encore Plus, a dark chocolate, a strawberry), gatorade, every couple of hours. But this did not last beyond one day. He would rather eat real food, but when he tries, he takes one mouthful and can do no more he says. He got very upset over the demand he eat tonight. He just can’t. He says he feels better when he doesn’t eat and Hill told me whatever he ingests 90% of it goes to feed the cancer.

Nonetheless, he has had two relatively better days where he sat up for a while and we actually went out using the folding wheelchair the Hospice people gave us. The weather has been beautiful (until today when it grew hot again) and I pushed the chair round the block, and we were both cheered by this. However, both times he was exhausted by it, and after the first he needed to use of oxygen tank for the first time in a while. Most days he is in bed and will sleep or doze as much as 20 hours a day. He can’t read my blogs anymore. He is now in his right mind and reads brief email occasionally, can listen to good music, discuss what is to come and remembers many details of things I do need to know about finances, websites, the house. Once in a while he will make a joke; it’s usually soft and no one but me hears or gets his irony. He was so cheered by this and since the chair given us by the Hospice is small, with small wheels, really meant for traveling in a car, he looked at sites with better chairs and asked me to buy a stronger bigger one he could be more comfortable in, with a large wheel he could turn, and I just didn’t have the heart not to spend the money. That day was one of his better ones and I thought of the beautiful fall and maybe a month’s worth of such strolls. Now I think we won’t get them and how shall I get this fine wheelchair up into the attic?

Need I say I am finding the strain of watching this, of accepting it, too much at times, especially in the medical facilities where I am expected to behave as if all is apparently well, if not to smile, as least keep a decorum of calm acceptance. I can’t. I lose my grip on my patience. I grew wild with worry today when I was told the nurse was able to call me in because the procedure was over and a full half-hour went by. I broke through the code of behavior and just went back there to see what was what. Someone tried to stop me by telling me there was no room for me; I said I would take up hardly any space. When I’m obviously upset, the medical people will ask if, as if surprised that I should be unhappy, “Why what’s wrong?” I really am in scenes from Wit.

I’ve talked to yet more people who have been caregivers and dealt intimately stage-by-stage with someone who has cancer, and it does seem that the decision to do surgery first and then chemotherapy can work out better or as well as vice versa. Someone said her husband wanted the surgery first lest the chemotherapy have such bad side effects, it would put off the operation for too long and then the primary tumor not come out. Others tell of just surgery and then the cancer not spreading, no chemotherapy or radiation (this seems to be rare). It was pointed out to me the surgery was not irrelevant as even if it had nothing to do with preventing, stopping or curing the cancer, it did remove the big first tumor and fast and its biopsy certainly produced an accurate staging at last.

Desperate for some hope I emailed a friend who had originally recommended a doctor in Boston who was said never to do this awful operation and just do huge amounts of chemotherapy to destroy esophageal cancer cells; he recommended calling Sloane-Kettering, and his friend showed me where on the Sloane-Kettering site there are three new procedures not mentioned by anyone in Kaiser or the doctor outside Kaiser here in Virginia to whom we went to for a second opinion. These directly attack the cancer cells in the liver and can be used for patients where both sides of the liver are compromised: image-guided therapies targeted directly to the liver while sparing healthy liver tissue; thematic ablation (heat or cold used to destroy liver metastases); and liver resections (major surgery).

I did phone a general number but didn’t get much information or got misinformation like people outside the NY metropolitan area cannot use this hospital or its doctors. I am aware it must be crowded with people who want to come to a place said to be the best in the US (maybe the world) who save people not saved elsewhere. Another friend then gave me the name and number of a specific doctor specializing in esophageal cancer; she meant me to call his phone directly but I used the number called “new appointments” and got a nurse who said that the doctor my friend recommended does take out-of-town patients, but only if he’s not under someone else’s care — they won’t interrupt someone else’s protocol as that’s dangerous. So say after a first round of chemo if we are unhappy with what’s not planned for next or is, we could call then. And then we’d send the records through our Kaiser HMO (that can be done) and get a first appt. If Jim was still alive by then, I’d ask for the most aggressive treatments to prolong life and maybe after that improve quality — the ones I can’t find at Kaiser. Of course (as this nurse said) it might be he’s not a good candidate for them. Another friend suggested how I could try to get a referral from Kaiser or the price would be astronomical without insurance (genuinely prohibitive; we’d run through all our savings and yet not be able to pay it all). At any rate the woman on the phone spent time explaining what I had read and procedures and that was something of an outlet and comfort.

The admiral had been against this calling, and was at first adamant he would not and could not (too weak) go such a distance (including staying at hotels, walking through corridors, streets) for consultations. But Caroline was here and urged me to call anyway and when I had the information he did listen and even read the descriptions of these procedures not on offer as far as we could tell from Kaiser. Most of the time when he gets really stiff and refuses to do something if I go ahead and try to do it, he just refuses to cooperate, really gets angry and the whole effort is useless (I’ve seen others persuade him, but I lack the knack it seems), but perhaps because he’s sick when I did tell him, he listened calmly. Maybe because it is all so iffy — he seemed to accept the idea of a possibility. I agree with him that going there at this point might be beyond him. Of course were the chemo to help, were he to begin to eat ….

We also dreamed of going to the EC/ASECS meeting in Philadelphia this fall — this again during a better moment or phase of a day. I could go for a day and a half myself and still chair the panel I invented (“The Retirement poem”). He’d have to be a lot better than he was today to make it.

I am all anxiety and fears about what is to come — I never do well with the contingent. So I have been trying to anticipate what I will have to do and take over a good deal of what the Admiral used to do (bills for example). Caroline has been a terrific help here, and Yvette’s phlegmatic self keeps us going at night together. I tried to do what people call “the research” over a federal gov’t widow’s pension but ended up just making myself more not less upset. I did find the right forms, the pamphlet you are to read and the procedures but as to understanding the unwritten things one must do and enact (always part of human doings), I found the language on the site often enigmatic and worried about this or that password. The Admiral told me to remember the site is intended to cover everyone, all cases.

I could inveigh against this idea I have become accustomed to in the last few years: people will say “I did the research,” or “do the research” and all will be well or better. I really am still puzzled at what the phrase means. If what is meant is finding a good doctor, or hospitals, all of them online produce glowing reports of themselves, and it’s only by reputation (a school for example) or what types of specialties are described that I can tell which is said to be the better. Atul Gawande has a long essay on the difficulty of understanding what makes for good and effective medical treatment, much less deciding who offers it. I understand academic research: you read all you can find on a topic. So I did read a number of good articles on esophageal cancer in May. Fat lot of good this did me. There’s a difference between information and knowledge. I read about the risks of metastasis but not until I’ve experienced seeing this, did I understand. Often when I try to read about what’s required to do or participate in the human aspects of whatever it is, the whole thing just makes me more anxious and I’m better off not doing “the research.” Even buying cars (where this phrase is most used) seem to me very limited when it comes to any original or different information that you can gather quickly: is it prices people are referring to? You still have to deal with the given salesperson and the atmosphere fostered by the people running the car dealership. Research (informed writing) on these does not exist.

I would like to say the idea is invented to make the people who say they “do the research” feel empowered and is used to blame those whose results are tragic or miserable because they didn’t do these arcane fact-findings. In the case of cancer, it seems those who win (or beat it) have cancers susceptible of treatment everywhere; those who lose have pernicious forms of the disease. Yet I too am seduced by a longing to believe that some conduct of mine or someone else’s can bring about not just a better outcome but one I’d genuinely like — in his case a cure, remission, or just a longer span of life and better quality: which he is not getting at all; he is only more or less free from pain and not nauseous as long as he doesn’t eat. What happens is phrases resonate in my mind out of hindsight: the doctor recommended who it’s said never does the drastic operation, only direct and heavy chemotherapy: were the Admiral’s stomach not so small and so high, he might be able to tolerate food.

Since August 4th, the day after we were told the Admiral’s pain and the reverse of his recovery came from “liver mets,” our lives have been compounded of vexation, desolation, for him at first anger, hostility, despair, now it’s all those still (maybe for him minus the anger and he seems to tired to be hostile), for me anxiety, sometimes a feeling of terror at being alone without him in the world with me to turn to — except maybe quieter. I have not had a happy moment since the afternoon we were told. Nor do I think he has. I think for myself of when he’s gone of part-time jobs — maybe at long last one where I will not be stigmatized as I was for over 30 years. Volunteering to get out of the house. I look at my books and say I’ll return to those most beloved and go through a course of reading them to find what I can hold to to enable myself not just to stay alive but find some contentment again. Dorothy Parker’s famous poem, “Resume,” shows most forms of suicide are painful and difficult — and I’m not the violent type. I want to stay for my daughters, hope still in future years to enjoy sharing their lives. I can’t make myself be what I’m not: I’ll never be interested in cooking food, fixing a house beyond what is minimally needed for my comfort. How shall I spend my daily time?

It becomes (as I say) a continual intense strain, especially when I am near and watching him, helping him, seeing how others react to him, and I begin to crack. How I envy those going back to school, going back to teach, doing all sorts of things that look enjoyable. I feel cut off from these. On the other side of something. Sunday Caroline, Yvette and I did take a walk in Old Town, had lunch at La Madeleine … a two hour respite.

Joan Didion has fun in both her books (I’ve begun Blue Nights which is if possible stronger than The Year of Magical Thinking) through contemplating and parsing, exposing the euphemisms and absurd games with language (such as using blunt opaque abbreviations; vent instead of ventilator) medical personnel play when someone is gravely ill, near death or dying. I can be amused reading her book but not myself distance myself enough to find the way the medical personnel speak food for thought. I saw in the New York Times today where a woman who was diagnosed with Stage 2 breast cancer was worrying lest she become infertile, not be able to have children. She seemed not to realize that the cancer could kill her. And she was told, oh, not to worry, pre- and chemotherapy can enhance fertility. I wish I had found the story hilarious. It was meant seriously.

Why do I natter on about medical personnel? because the only kinds of places the Admiral and I go nowadays are medical facilities. Come to think of it Joan Didion also fills her book with sketches and scenes of the medical establishment and its types. She too surrounded by these people, in her case night and day as she spent weeks and weeks in ICU units. As to these hospice types, they use routines and euphemisms to enable them to keep away; to limit service; their brief is to send medicine, lots of it and leave you to use it. When they send someone, half the time, they are worse than useless, spending their time filling out sheets with information already in the thick file; one fool of a nurse wrote out in large letters “does not believe in God!” — she told me (learingly) that divine intervention had brought her. I told Hill to tell the people at the main office never send her again.

Much better for me is a kind of stalwart calm that the refusal of the medical people at the medical centers to acknowledge what is happening in front of them drives from me. I do better when everyone acts candidly based on what is a perceived reality. Then advice and an assessment that makes sense is music to my ears.

Lines

I want so badly for this
not to have happened
  I cannot undo what
has happened to his body
I want to retrieve
  the irretrievable

Each week he declines more, weaker,
more gaunt, hollow, death-like.

I remember being aware
one day now retired with him
  that he ate so many tums
I had forgotten. I asked him about it.
“Yes it continues just as ever.”
  A flash of worry.

His diverticulitis, writhing with
gripping gut without that medicine.

I don’t get anywhere on my Trollope film paper
just repeating the same rounds of reading
  Hard to break out, get above,
mind is not up to it, clouded
  This part always the hardest

Sylvia

Death be not proud

© Flavio Gregori

Dear friends and readers,

I cannot thank enough all those who have written to encourage me to go on and validated the significance of what I am trying to do while expressing myself and reaching out to others.

Many will recognize the source of my header, John Donne’s famous sonnet, “Death be not proud, though some have called thee”, and maybe others know it from Margaret Edson’s play, Wit, as revised by Emma Thompson for a film in which she starred, and was directed by Mike Nichols — to the surprise of many a commercial-minded person, an award-winning play brought to New York City, a hit on HBO, and then a quiet gatherer of patrons in paid cinemas.

I bring Wit up (again!) because today’s cruel incident — sometimes it seems to me every day but has its event exacerbated into body-wearing and soul-destroying experience by the way the modern medical establishment conducts its business — today’s 2 and 1/2 hour endurance ordeal has enabled me to realize how searingly true its dramatization of the human condition facing death as seen through the prism of a system that refuses to acknowledge what all their fuss is about. I haven’t the strength to tell it, and suspect one needs to be inside the maelstrom to grasp the full indifference to the human beings in front of them which the apparently benign behavior of a medical staff subjected us to. Suffice to say I probably made things worse by growing so angry I could scarce contain myself, and the Admiral began to cry. They had hurt him again and again with their needles, their sticks; he had gone hungry to do this procedure which now we were told we could not go until Tuesday when of course we would have to return.

The origin of the problem was again this horror of a pharmacist (Dr [?] Lee) who is empowered to phone me from Prince George with orders about the Admiral’s blood. Again I was pressured into this time giving him a shot of lovenox 2 nights before this procedure. I feared it would thin his blood too much. No, says this guy, and then the threat about pulmonary embolism. So I did it. And then his blood was too thin. For weeks and weeks we have endured this absolutely dangerous set-up where a man hundreds of miles away sends orders for us to give such-and-such blood thinner and then the Admiral is to go to a lab and have his blood tested. This landed us in hospital last week, got the people threatening me with an emergency room, and now this. I asked him, Wasn’t he ashamed to be part of such an impossible to coordinate set-up. I asked him, How much do you make? The doctor at the place denied it was the lovenox; it was some ambiguous mixing of bodily fluids. Right. One thing when we got home: we decided no more lovenox.

Your ability to fight them is limited lest you offend as you need them: once again, it’s need that is ruthlessly exploited here and silence and tact that is enforced — on whose behalf? At one point one of the nurses asked me, “What you are upset about?” as if this is a total mystery. I wish I had said “I’m upset because if we don’t do this we are told inside 3 weeks he’s dead. Sorry to be in such bad taste as to bring it up.” I am getting closer to this kind of talk, but not there as yet lest I turn anyone against him. He says it’s all right as I play bad cop to his good one. I’m not sure.

I screened Wit for years, showed it again and again to class after class. I did think Donne’s sonnet in context ironic, as the behavior of the medical staff in Wit, no matter how bizarre their operations, how revolting their medications, is that of people whose techniques are all a function of avoiding death, and thus paradoxically (very Donneian this) enslaved to death as they conducted their “poison, warre, and sickness.” Now I realize the line also means plainly, death be not proud of what you have led human beings to do and to accept.

Were the medical staffs to acknowledge this, they would have to relinquish their control over everyone who comes for their services — and make less money, abuse people a little less. Why should an exhausted gravely ill patient have to come to a medical center for a test? because he needs it and it’s not made available any other way. Why is this?

I put on the teaching part of my website two student papers whose theses I now see take us to the heart of the matter in reality (beyond the parable movie): Positioned on the borders of decency; a “poignant film.” He looks like Emma Thompson in his wheelchair. This YouTube contains my favorite moment in the movie: where Susie puts her hands in front of Jason, haven’t you harmed her enough:

He is now resting and we again hope to have a better day tomorrow — apart from all these people (including the Hospice ones who are not there for any indeterminate care) I said to him before he went to sleep, Does he think that if I got him dressed, packed our stuff, got us tickets, that anyone at the gate of the US or the gate at Venice would refuse us entry? How about dying in Venice? He thought no one would stop us. But then I thought about the need for galoshes, and decided it would be too wet for us in his present state. He smiled at the picture I conjured up.

Venice — he’ll never get there now

I admit I never thought the movie would relate directly to me and my beloved. I knew it directly related to many students in my classes over the years. They’d sometimes tell about it.

Sylvia

To communicate what it feels like is impossible

Wm Hurt given a wrong & humiliating treatment has discovered that medical treatment is not something to joke about (The Doctor)

Dear friends and readers,

I do think we are becoming a neighborhood institution — like the nightly dog-walkers: a group of elderly neighbors who seem to live to walk in a large group at around 8 at night each with his or her dog. Only we go twice a day, once before the heat of the day begins to bear down burningly, which means before 9 am, and again after the intensity of the day’s heat has subsided somewhat and there is almost continuous shade on what passes for sidewalks, which means after 7:30 pm. And we go slow. V-e-r-y s-l-o-w-l-y. People with dogs rein them in, get off the sidewalk altogether as we pass by. I had never noticed before how uneven these cemented paths are. I never noticed my neighbor’s gardens very much before, but now I’ve become a connoisseur of magnolia trees, blue spruces and day-lilies. The best magnolias have these large soft velvety white petals. I do not like rose hedges; they are all brambles and encroach on the sidewalk. I know which neighbors have messy lawns. Where a tricycle is becoming overgrown with ivy and wild grass. Our greenery is not so bad after all — the mowing people I pay $25 a time to do keep it neat and flat and within our property lines.

I am not exactly making friends. Though for the first time I begin to recognize which people belong to which house over a three block area, I have this irresistible urge when someone utters a social hypocrisy so blatantly unreal (absurd) to burst into a raucous laugh. So when someone says to my “We walked 2 blocks today,” “how wonderful” as if it really were, I caw. I don’t smile brightly when some of my neighbors with these very tall thick trees erected as a kind of barrier against seeing anyone or being seen scouts out rapidly in one of their huge hog SUV type cars with dark glass. I wouldn’t say I scowl but Jane Austen probably looks friendlier in her famous sketch than me as I warily eye their cars. In the morning I’m swathed with my scarf because I’ve just washed my hair, and in the evening dark sunglasses against what’s left of the glare. I generally wear summer skirts (the kind that swirl, elastic waists, just below the knee), shirt-waist kind of shirts (endlessly wash-&-wear) and flat pumps I picked up in a jumble sale, peds. The admiral is in his soft cotton gym trousers, funny shoes (with separated out toes) and T-shirts with designs & funny sayings. (The uniform for women in my neighborhood is sexless loose bermuda shorts, T-shirts with or w/o advertisement logos, socks, training shoes/heavy-made sneakers; men very similar.)

The Admiral read my blog on Pekar, Brabner and Stack’s Our Cancer Year, then looked at the graphic novel, and declared “Our Cancer Year concentrates on Joyce not Harvey’s experience because to communicate what it feels like to endure these dire treatment and their aftereffect against cancer is impossible.” In the following typical page, she seems like such an egoist: who is she to talk about his body hair as if she somehow owned it? I took the page also to show that Harvey is this inarticulate male so she talks as they write together:

But the admiral suggests no, it’s that the person feeling this thing does not look at what’s happening from the aspect of how the world sees him or her in this objective way but from what is felt inside.

I know sometimes the Admiral seems to be holding his body just in the way Stark draws Harvey holding his. He then usually says he feels miserable. I ask him where does he feel miserable? what is hurting? me, he says. Pressed, his digestive system. Of course also his left leg (sciatica and herniated disks); paradoxically while he feels worse in the morning when he gets up from his inclined bed, his bladder works best in the morning and over the course of the day as he begins to feel better, his bladder fades.

Maybe it’s not considered good manners to articulate the state of one’s body as I’m doing for him — but I do think that the lack of talk about how these dire treatments cancer patients are subjected to enable doctors to ignore them and (in effect) victimize them by inflicting too much too quickly on the patient, asking of them things that are very hard to do either practically or humanely without acknowledging there’s any problem or obstacle.

On his busy way elsewhere, the doctor breaks the news

Some doctors have shown they were literally shutting out the actual patient in front of them by writing memoirs after they have become patients and themselves experienced from other doctors what they inflicted. Spacks has a book in this vein (pun intended): A Leg to Stand On, and an effective film, The Doctor (featuring William Hurt and Christine Latkee, directed by Raina Haines) was made from Ed Rosenbaum’s intelligent A Taste of My Own Medicine (New York; Random House, 1988).

Elizabeth Perkins plays a cancer patient Wm Hurt meets in the waiting room who was misdiagnosed

A serious attempt is made to show the indifference with which a cancer patient undergoing chemotherapy is treated in Mike Nichols and Emma Thompson’s Wit, and the isolation, lack of choice and support, psychological anguish she experiences as a result. A touching delicate scene:

I discussed a while back, Michelle Fine and Adrienne Asche’s Women with Disabilities: they’ve an essay in it on cancer and sex roles whose conclusions I wish were better known. In “Sex Roles and Culture: Social and Personal Reactions to Breast Cancer” Beth Meyerozitz, Shelly Chakien and Laura Clark, begin by writing of cancer as such, in all its varieties (you still can) and say — rightly — in a real functional way when a woman or man has cancer and they undergo some striking changes (such as the Admiral’s organs re-configured, his stomach shrunk), some of which are visible, they are disabled people. With breast cancer may show more, but despite anecdotes and news-stories to the contrary, statistics and wide research (asking people) show repeatedly that women who have mastectomies would not get so upset about this(any more than any other operation that might deform, and less than many since it does not incapacitate daily, but that the people around them either become upset and treat them differently or expect them to be upset and get upset themselves at the thought of this breastless woman. The emphasize the emphasis on breast cancer above all others is skewed, and the way it is treated and experienced the result of intense sexism identifying a woman’s functioning with her breasts.

Far more money is put into research about breast cancer, into cosmetic surgery afterwards, into support groups (which of course increase the intensity of the experience by reinforcement) when the incidence of breast cancer is 9% of all women and 73% still alive after 5 years; put in perspective when heart disease and all cancers are added together in the mortality figures they account for 70% of all deaths. As measured by research the period of peak distress for women with breast cancer occurs several months later than patients with other kinds of cancer. There is tremendous pressure on women to war protheses all the time. Several studies have shown that breast loss is not the most important concern of the patient; her future health is.

I’ve assumed that people try to enforce normalcy, repress the talk about illness in others out of a primitive fear of contagion. Tellingly Meyerowitz, Chaiken and Clark suggest from interviews and reading that people shun those who do not hide their disability not because it’s a reminder they could become disabled or could be burdened by the needy person, but rather they want to maintain a belief in a just world. Stories — so familiar to us all — in which the disabled person is psychologically sick enable such people to blame the disabled person; once it’s their fault, then there is no complete injustice. Stories about how patients overcome their cancer or condition altogether — like the famous one of Elizabeth Barrett Browning walking across that room to Robert Browning’s urging and within weeks of marriage just being super-normal — reinforce the American mythology of self-reliance. The famous play, The Barretts of Wimpole Street presents us with a miraculous cure through the agency of romantic love.

They also report that suicide rates for male cancer patients are significantly higher than suicide rates for females. I have asked the admiral if he ever has self-destructive thoughts. He says no and I believe him. I would not — like Joyce Brabner — react with indignation or irritation if he had. I know in Our Cancer Year Harvey loses his old job in the hospital he worked at and is given no help in adjusting to a new one, and find myself wondering if cancer patients are regarded as “tarnished” people (using the phrase in Erving Goffman’s sense) and have a hard time getting a job unless they hide their past. Disabled people are unemployed at a frighteningly high rate.

I seem to have traveled far from our shared experience — his as patient, me as his wife and helper. (Care-giver seems a pompous stilted kind of term, next I & Caroline & Yvette and maybe the cats too be called his support system.) I think not. I do know of one text where through neurotic comedy something of the experience of fatal illness is communicated, viz.,

being convinced no examination that much of the evil lay in her gum, I persuaded her to attack the disorder there. She has accordingly had three teeth drawn, and is decidedly better; but her nerves are a good deal deranged. She can only speak in a whisper — and fainted away twice this morning on poor Arthur’s trying to suppress a cough (Sanditon, JAusten, written while under the pressure of Hodgkins’ disease)

From Frederick Wiseman’s Near Death; a fourth must-see film, his Hospital.

Sylvia