Here is yesterday's exhausting day set of distress upon distress. Today walking to and from an HD-opera I felt my heart beating super-quickly and when I went to cross the street someone almost ran me over. People in cars in Virginia don't believe there are creatures called pedestrians and when these creatures get in the way the drivers get indignant. I hope if someone reads this blog after I have died of this you will tell someone with power to make some splash that the DMV was responsible for my death.
So what else do I have to tell of my year thus far: I am going to start volunteer teaching of Jane Austen to older retired people. I'm feeling the important voices I've lost forever. My father's. What would he have said about this license loss? I suspect he would have raged on my behalf. I remember how he raged at the way I was treated at Metropolitan Hospital up in Spanish Harlem after a car accident (I was not a driver but a pedestrian). Jim would be started. Utterly unexpected after 34 years of driving with hardly a ticket.
It's now been 25 years since I've talked with my father and had the comfort and intelligence of his conversation. We would phone once a week in the 1980s.
Sometimes I can imagine what Jim would say about something that just happened. About the cell phone he'd have told me again and again I'm a fool to have bought one. He never wanted one. We had old flip phones as phones. But many things I cannot guess and it hurts not to know because so often his jokes made things unimportant; he gave me good advice: he might have known my license was still suspended and I must not buy car for $17,000 for which I must pay insurance. He would have enjoyed Prince Igor with us today.
These things make a big difference in our lives.
I don't see how I can survive if this goes on and on and on this way. I am powerless but before I had the shelter of his presence, his understanding, his strength, his help. I am naked to the winds. I am a person one wall of whose house has blown away.
'“Middlemarch” suggests that it is always too late to be what you might have been—but it also shows that, virtually without exception, the unrealized life is worth living.'
This reminded me of the axiom or saying I put at the top of this blog: I must not reproach myself for my unlived life. It's not my fault he's dead. I did all I could to keep him alive. Had the cancer epidemic not reached the Admiral I would have carried on going to conferences, giving papers, traveling, making acquaintances and friends. None or (to use the term as Mary Crawford says she uses "never") very little, hardly anything at all of that will happen now. I will spend the next 20 years alone.
Will my unrealized life be worth living? well I don't want to go into cold obstruction (mud, earth) and rot. If I can manage to cope with the new PC I'm having installed I can pretend to be writing a book, maybe write one and even send it to someone -- with the full expectation it will be rejected as I have learned the way to get an essay published in a collection is to know someone putting it together in the first place. There are no blind submissions.
So why carry on? for the sake of remaining sane while alive?
He did say I should not try but live quietly and not pay attention to what others thought at all. That was among his last words to me.
I have been paying attention and not living quietly but going out a lot.
From Mary Wortley Montagu's poems:
What Lesson is it must restore my Rest?
The firmness of my Soul gives way,
Some pitying Power behold what I endure ...
The admiral really thought I'd be okay. It seems to me now here at least he was wrong.
I'm not okay without him.
Bu whatever happens, life as I knew it is over for me forever; I cannot maintain that way of life. Instead I rush about trying to please and be with people, flailing crazily. The bad judgement was this trying, especially trying to deliver that black American girl doll. I'll never ever go again to that place or to any place where I don't know where it is and no one appreciates my efforts. How could I have been knocking my head against a brick wall that way.
Izzy half-sleeps in her room and does not want me to help her stay up. Across the street in the darkness I see a house lit. I know that woman (a widow like me who lost a husband in his mid-60s to a terrible cancer and who has let me know she does not want more than a passing acquaintance -- why should she?) has her trees outside lit, in the house a son, a daughter and boyfriend. I saw a car drop someone off. I'll never know this sort of thing ever. Now he's gone never be with others in that way. I could be with him that way and once in a while Yvette would join in.
It is so hard to die, to lie in the ground and rot, lose consciousness. The admiral thought I should try to be happy based on my books writing reading movies and that he left me enough money to do it. But computers break down and what I am to do to fix it? Today I had a harrowing incident where I could have locked myself out of my MacBook Pro by trying to buy music on itunes in my iphone. I have got to put all gadgets far from me..
I am alone with my cat tonight in the silence. I watch Love Actually -- this warm comforting film with its hopeful children. Bill Nighy keeps saying it's all crap and yet we see him kind to a male friend. Like Downton Abbey everyone kind to one another.
See last year's http://misssylviadrake.livejournal.com/1
My Sylvia II blogs are far too upbeat. I don't dare say quite what my reality is. Maybe all meaning for life was simply an invention, an illusion, before but with his affection, companionship, shared outlook I could fool myself.The best I can say and it is true is I prefer not to kill myself. Annihilation is worse as long as I have enough money to live -- here and there I enjoy this or that. I've again been snubbed by the woman across the way; what is so unacceptable about me I've never known but it's so -- and he was no more acceptable. She now is unwilling to answer brief questions: like is hers a good cleaning service, would she recommend them, what is their name? No she is ever expecting guests and must run away. If I don't get that volunteer job I fear I face isolation.
In a way it would be better if I could die naturally and easily -- but life is too tough for that. I don't want to kill myself because most methods are awful and I don't want to desert or be hated. It really is hopeless for me, a 20 year life sentence. It wasn't his fault -- he didn't want cancer nor to die but he felt maybe rightly he was not going to get any better treatment no matter what we paid or where we ran or to whom. He was dispensable. White males' widows are not burnt in suttees but pensioned maybe as a final payment to the male and his family of their life given up to the present rotten order.
Then left to be alone.
What fools we were. We did not know he was a dead man once he was deemed to have esophageal cancer. I remember us walking to try to regain his strength.
I'm losing him and he's losing his life. The cancer metastasized into his liver and Kaiser gave up on him. I didn't know what to do or where to turn until it was too late, and then how to get a referral to Sloane-Kettering? how to pay for it? in time? (The people who go there live in NYC or are highly paid professional types.)
Would that he looked today the way he did this past Sunday:
He does not. He was eating that day; he has stopped again and trembles violently when he goes for a walk down the hall.
He fell last night trying to come to the front of the house to be with Caroline, me and Yvette; he trembled as he lay there, and it was horrifying.
This may be the last photo I will take to remember him by.
Such smart people to be so stupid. He should not have had that drastic operation. Did he think to himself that we were nobody and nothing and our luck had run out and grabbed at that operation as a last chance, hoping for no metastasis? I didn't think that way. I only dreaded the operation and preferred him to do the chemotherapy first. We should have tried to see the Boston doctor a friend told us about and paid whatever thousands were required. Then he feared the delay more than the sums of money required.
Or gone on holiday to England (Cornwall, the Lake District we dreamed of going to in a couple of summers or fall) to enjoy what time he had left. Oh how I regret we didn't. Instead we let them grow richer on his sufferings.
Upon being told it had metastasized I should have done something. I did not understand what this fully meant at first. I did not foresee how he would not, could not eat. It seems each time I was ignorant or didn't realize what I needed to realize (I couldn't -- it was too dreadful) and didn't know where to turn and was repeatedly confronted with his refusals to cooperate. Perhaps I should also remind myself that at every stage he did choose: recently he choose not to continue the chemotherapy pills; it's been he who was so loathe to do the blood work before chemotherapy that I cancelled the appointments. Our nurse said not taking the chemo pills would allow the cancer to grow without a counter-offensive but the Admiral said they made him nauseous. And now his whole central cavity is in the grip of this disease, and he is too weak to get to the bathroom by himself. I know that chemotherapy would just have prolonged this process, made it happen much slower
I wish someone had talked frankly to me. Reading on-line didn't help. Information never became knowledge until it was too late.
I did everything I could for him. I left no stone unturned as soon as I understood what he was facing at this or that juncture. Then I was thwarted. Either by him -- who would not get on the phone, not drive 300 miles and spend whatever in some hope of help. He felt no hope. And the second opinion I got cost me $433 and just justified what had been done. Of course she would. Or the medical establishment who regarded him as expendable. They were interested as long as they could justify procedures for which they would be paid.
See my The Politics of Cancer, Revisited.
To Whoever may read this: Don't belong to an HMO if you want to survive a serious life-threatening disease. If you are like me and all your life have had a hard time getting a doctor (since I knew few people), much less one you could be sure was good, then the HMO provides an array; it is true that they have no stake in doing unnecessary operations so you will be not be subjected to medical procedures and medicines you don't need; but this lack of personal profit works in reverse if you are seriously ill. Then no one there has a personal interest in making you well; it does not matter to anyone individually if you die; what matters is not costing too much.
It is true that for me outside Kaiser I usually had bad experiences with doctors. I was told I was a neurotic woman when I went to one man with a headache and the price was $37.50 for five minutes of his time. This was 30 years ago. I've not forgotten it.
No; now I really must not reproach myself for an unlived life.
Be sure and keep her name in mind and spread the word about what a liar and poor doctor Poonima U. PandellaPalli is.
Basima Antabili is as bad. She is interested in one thing: her place in the organization. she does not think it necessary to phone her patients even when they are in deep pain from cancer, experiencing deep nausea. Now that he has less likelihood of living (?) -- is that why? she will not do radiation. Oh no, not necessary. She has nothing to say in explanation since she has not seen the full C-Scan. She spends her time with tests, print-outs and other Kaiser doctors. That Dr Fortes was the man who did the drastic (and awful) operation is irrelevant. Why bother? what good would that do her career? and it might encourage them. She implied I am a nervous wreck -- I've had that from male doctors many a time -- and now this female. Her English is bad. Oh she'll see my husband in four weeks, and she'll email him a regimen he must follow. Can she get off the phone now? She was busy with patients all day said she. But when Dr Wiltz (our primary care man who did see us and ordered the medication he needed) phoned her, she picked up that phone.
No explanation why one does chemotherapy and what it is supposed to do for him. No explanation of anything. Why bother? I looked it up the Net: it can cure, it can reduce the size of the cancer and thus may it less painful; it can prolong life. She does what is in her job description no more and is protected by the medical establishment. It says nowhere she needs to explain anything. I can't complain or let her know what I think of her yet as she would get back.
And I'm told before the people on the phone who make appointments can give me information they have to check with this doctor beforehand. So she's covered on all angles.
Be sure and keep her name in mind and spread the word about what a heartless bitch and poor doctor she is.
Oh she is a liar too. When she called at 5:20 pm -- just before her official day ends so she could be in a hurry as of course when her day ends she cannot be expected to talk on -- when she called she pretended at one point to have called Fortes but when I asked what Fortes had said, she changed the subject. She will never phone him. It's not in her interest at all. (Chaudury said Antabili would not read her mail -- the message Chaudury had sent on Saturday -- until Monday when Antabili came back into the office. I asked "Does she never look at it?" instead of answering that she said well the mail is on the Kaiser site and maybe she is not attached to the Kaiser site at home." Yes and the moon is made of green cheese. How probable is that? I surmize she may look but she has the excuse not to do anything or admit knowing anything until Monday after 9:00; by that time she may use the time to figure out what she will do to protect heself first, and do the least she can get away with -- as the safest course for her.)
There's really no use to see her of course. When we did and the Admiral kept saying he was miserable and described his symptoms, she looked at him and did listen to his heart but then dismissed him. He was doing "terrifically:" look here it says so on this sheet. Irony of ironies: that's Dr Fortse's note to her when he couldn't get her to come to a phone. Of course Dr Fortes wants to believe that. When we saw Wiltz in March, the Admiral was there to tell of his swollen feet and just mentioned his trouble swallowing; Wiltz immediately picked up on that and sent him for a barium swallow and caught the esophageal cancer one month later (another wait alas) because we had to wait that long for a time for both endoscopy and colonoscopy. But when he looks at you, it has some use. None with her.
May both women be fired. I note that there is no place that I can find on the Kaiser site which gives their names. I am not good at finding this sort of thing out so if anyone wants to for me, pray do and send me the URL.
Tell these stories if US medicine should come up in conversation. Name the women, be sure and name them.
I have written on politics here -- and poetry too: here is where we are the 99% in other areas of life.
Here is some advice for those who can do this sort of thing how to try to change things. Disrupt the system: Zizek
Since my last entry, the Admiral has had his operation and appears to be on the way to recovery: Sylvia II
I've opened a new listserv: Historical Fiction & Film Adaptations, 18th to 21st century, Poldark to Austen. Six people have joined and it is having a very mild success (not a total failure): something like 4 of the six people have posted. Ellen and Jim have a blog, two.
And I carry in with women's art, Austen and 18th century studies: my latest is women writing from and about imprisoment. Reveries under the Sign of Austen.
I've a new photo of myself and ClaryPussycat on facebook: