The Good Things

He’s angry that I’m a BRCA carrier – all doctors are – it burdens them with more work and more responsibility. They feel like they’re forced to find ‘a needle in a haystack.’ One breast surgeon actually told me that – it’s like finding a needle in a haystack – while examining me. Another doctor told me I’d have to be watched like a hawk.

They have no idea that language, and especially images, stick to you, and become part of your illness.

This Israeli doctor is angry that I live in upstate NY, because he is worried I’m not keeping good track of these breasts. He doesn’t like the thought of cancer care in Ithaca, NY, a place he’s never heard of, and I’ve confused him by going back and forth and allowing my breasts to get touched by all kinds of doctors. He says that at the very least I need to get a big folder and keep track of everything my breasts go through. That’s what I need, to carry around a big, giant, folder.

The Ithaca breast surgeon hates me for not wanting to do self-breast exams. She wants me to lie down at home in a weird way, touch myself, and carefully chart what I feel on my breasts on these sad outlines of a woman’s breasts. Then track that over time.

She wants me to do this once a week, forever.

“I do not love to cure one disease by another; I hate remedies that are more troublesome than the disease itself”… the disease torments us on the one side, and the remedy on the other.”[1]

The Israeli doctor yells at me trough the vessel of a cancerous throat, and its hoarseness echoes his warnings in me:

-“I can’t find anything! I guess it’s fine. For now.”

-“You’re too nervous. You have to learn to live with it!”

****

It has been over a year since my breasts have had an MRI, so I’m getting really nervous. What might be going on under my skin.

 “If he sees his body, it makes him worry”… “What have I here underneath? He says, as he stares at his skin.”[2]

My dad is in the hospital with his cancer, and the lives of his children, just barely beginning to learn to hold on and even look ahead, get thrown off board as if by a harmless nudge.

You start to see the light of day and already it’s nightfall.

Co-morbidity.

Psychology has ‘discovered’ that any one disorder can bring upon another, until all the disorders just all pile up and burry you. If you are severely depressed, or have what looks like a personality disorder, you might just actually have severe OCD, originally, which is producing these other conditions.

“As it is with a man imprisoned for debt, if once in the gaol, every creditor will bring his action against him, and there likely hold him. If any discontent seize upon a patient, in an instant all other perturbations will set upon him, and then like a lame dog or broken-winged goose he droops and pines away, and is brought at last to that ill habit or malady of melancholy itself.” [3]

The Oncology ER at Tel-Hashomer hospital is packed – it’s always this way, they say – and they do not have a bed for my dad, who needs to be ‘transported’ (that’s the word they use) into the general ER, where people are experiencing an actual emergency: a bad night, a bad turn of events, an accident of some sort, yes sometimes fatal, but still, an accident. A lady is moaning in agony to her husband.

Several hours later, through which all we’ve done is wait to be transported again while the circus goes by us, I hear a nurse telling her: ‘let’s not see you here again, huh?’ and ‘what a night,’ the lady says with the exhausted smile of someone who’s nightmare is coming to an end. She’s discharged.

No. Right. No one knows when a nightmare ends for anyone. No one can see into other’s lives, or their futures. We are taught that the mighty might fall at any point. Do not envy. Do not judge.

“Now as we keep our watch and wait the final day, count no man happy till he dies, free of pain at last.” [4]

But now we know. The determinism of ‘family history’ can now be found in one genetic testing. So for us, we stay in the hospital, we stay with these fears; we live this illness even if it hasn’t yet erupted in us. We witness it erupting in others that are related to us. We are Carriers. Medicine has always loved these charged metaphors to give it the thickness it lacks. Family History. You think: perhaps stories of loss, but also stories of your dad getting drunk at a bar with his grandmother at the age of three. Taking wine out of a wooden wine barrel with a ladle in their house. Imagining your little dad dancing around, drunk, at the age of three. You want the illusion of that story back. Instead, you have forms, collecting this data, assessing your life for you:

  • Do you drink more than two alcoholic beverages a week?
  • Do you smoke?
  • Are you sexually active?

Slowly eating away at your memories, making you forget what you used to consider ‘your life.’ Making life expectancy and screening and early detection and being ‘on the safe side’ the only thing that matters.

If memories make one nostalgic for the times they represent, I am nostalgic for the memories themselves. Sharing them around a dinner table, afterwards clearing the table and cleaning the dishes so the room slowly goes back to how it was. Something coming to an end.

It is not healthy to live in preparation…

“I wish for death to find me planting my cabbages.” [5]

My oldest sister and I, carriers, cannot bear to watch family videos. We haven’t looked back since we’ve known. When we see our grandmother in images and film, enjoying ‘not knowing,’ we know too much and cannot bear it. As far as I go back I just want to insert that knowledge: this is what you are, this is how you’ll die. For my grandmother, she suddenly had breast cancer and a mastectomy at 55, and suddenly had ovarian cancer at 70, so all in all she had a good healthy life that ended very sadly, but not sad enough to be counted as such. With what we know, the statistics on BRCA carriers, we also know she was extremely lucky.

Luckier than us?

The BRCA gene made my grandmother completely disappear somehow. The narrative I have been carrying, is that I had a grandmother who I was very close to, she was dominant, funny and interesting, and somewhere in my early 20s she just disappeared, almost never to be mentioned. The medical heritage slowly repressed and replaced all my memories of her and her heritage. Cucumbers getting pickled in jars full of garlic and dill on her sunlit porch, and all of that. Cabinets stocked with food. Tiny flowers on skirts. A particular shade of blue. An asthmatic breath from always being out and about in the world.

-“What did you bring me?”

– “The good things,” my grandmother would answer, translating directly from Romanian, probably, meaning ‘goodies’…

****

No matter what happens to you and how bad it is: keep doing things. But instead of getting things done, I have been distracting myself with love.

“I was once afflicted by an overpowering grief”… “Needing some violent diversion to distract myself from it, by art and by study, I made myself fall in love” [6]

“By art and by study, I made myself fall in love.” That’s as bad as it sounds. All kinds of love, that were mostly hurtful, only half or quarter good, or less, obsessive, attached. Perhaps intense grief preceded Montaigne’s love for La Boétie and already manifests in his love and attachment to him:

“But in the friendship I speak of, they [our souls] mix and work themselves into one piece, with so universal a mixture, that there is no more sign of the seam by which they were first conjoined.” [7]

Montaigne knew death all too well, and it stands out in everything he writes, especially under the guise of being beyond death, accepting death as a natural and even light matter.

“To lament that we shall not be alive a hundred years hence, is the same folly as to be sorry we were not alive a hundred years ago.” [8]

As if it is ridiculous to care about when you will die. Claiming that he does not care how long he lives, because caring about that is paradoxical, you will not be alive to lament it. It ends when it ends. Living one day is equal to living eighty years. Hiding his fear of death behind the critique of mourning culture and mourning rituals.

Aristotle tells us that there are certain little beasts upon the banks of the river Hypanis, that never live above a day: they which die at eight of the clock in the morning, die in their youth, and those that die at five in the evening, in their decrepitude: which of us would not laugh to see this moment of continuance put into the consideration of weal or woe? The most and the least, of ours, in comparison with eternity, or yet with the duration of mountains, rivers, stars, trees, and even of some animals, is no less ridiculous. [9]

That wisdom is knowledge of death, that life is learned through contending with death and accepting it, is not a universal and shared experience, but particular to the person who lives life through the experience of death and dying.

Beyond the death of his children and father, Montaigne was experiencing the fatal illness of the kidney stone, which produced excruciating pain and near-death experiences. He knew death as part of his body, inside him. Living while feelings the stones traveling through his body. Explosive like a gene. He knew also that this condition was inscribed in him genetically, that he had a “stony quality” (qualité pierreuse), a tendency to the stone, but also a tendency passed down from his father, Pierre, (stone).

If I have assumed a narrative of pathology for myself, it is because I have assumed that my loss is insurmountable, and like a classic melancholic, I stand by that fact.

Loss is sometimes, but not always, like a hill or a bump on the road that you get over. Loss perhaps does not lead to death or paralysis, but like an infection touches everything. It is not just always there, it makes your life too, even if that life wants to look like an ‘overcoming’ to you and to others. “You are strong, though,” is all people can come up with.

What is that ‘though’ doing there? Sometimes it seems that just by merely ‘carrying on’ and not being dead, you have overcome something. Perhaps it is because loss suggests an event in which an obstacle appeared out of nowhere, and not as an entire way of experiencing life.

I’ve not made things. I’ve learned only if something caught on, I’ve not done a thing with an eye towards the future. “You feel like your horizons are closing in on you,” is what another carrier told me, as she made the gesture with her hands of something approaching her eyes.

I have lived a life of drunken and blurry days and nights and strangers and hazy feelings, without explicitly engaging in what the medical sciences would call ‘destructive behavior.’ It seems as though the ‘destructive behavior’ was just the very act of ‘dragging along’ as a means to avoid my life –

“Disappearing in front of overflowing eyes” [10]

I don’t think this is a kind of depression that has been accounted for. It is neither an endogenous illness nor a healthy reaction to painful circumstances. It is a line of flight. I’m not quite sure what that means but it feels right.

I’ve been told that I’m self-absorbed, that I’m always going back to myself, and my feelings. That I spin in circles when I talk. I can’t usually hold a conversation for very long. Especially if it is one without being held and holding. Without a promise. More disappearing. It’s the line I always end up following, disappearing from the visible outside and going inside, externally carrying on, dragging along, when direct living would seem to be even more painful than that depression.

It’s been hard to watch people reach for things. Loving only sometimes, because they don’t really need it. But working together, side by side, talking, about the same things, and each other, splitting off in the evening, perfectly individuated and yet ‘in touch.’ Walking their dogs. Training their dogs. Reading books on dog psychology. So much training of dogs and then rewarding them. A different kind of diversion than mine.

I jump at a phone call. I hit the wall. My cheeks are burning hot.

The world has raised its whip, where will it descend? [11]       

Now I think Montaigne quoted others so often in order to ease his pain, and to ease the pain of writing about his pain. Going elsewhere, using something from the ‘outside,’ but not really, because citing is part of his pause, coming out for air, and then diving back in. The fold.

You should take his word for it when he says –

“I am myself the matter of my book”[12]

“A book consubstantial to its author”[13]

Montaigne’s critics like to really dig into that declaration and deconstruct it of course, because, you know, they can’t imagine someone actually just talking about themselves.

It must be because they have no experience, that they cannot imagine how that alone can be meaningful.

–Yael Wender: it’s not clear yet, but she’ll surprise herself.

 

[1] Montaigne, Michel. Of Experience.

[2] Ponge, Francis. Le Parti Pris des Choses.

[3] Burton, Robert. The Anatomy of Melancholy.

[4] Sophocles. Oedipus the King.

[5] Montaigne, Michel. To philosophize is to learn how to die

[6] Montaigne. On Diversion.

[7] Montaigne. On Friendship.

[8] Montaigne, To philosophize is to learn how to die.

[9] Ibid.

[10] Kierkegaard,Søren. The Sickness onto Death.

[11] Woolf, Virginia. Mrs. Dalloway.

[12] Montaigne, Michel. To the Reader.

[13] Ibid, On Giving the Lie.