October 28, 2007

"I like everything about you. Your illness is part of you. It's like part of your character."

Nicoletta Mantovani quotes her husband, the late Luciano Pavarotti. This is what she says he said on learning that she had multiple sclerosis. (It sounds ungenerous to say "she says," but she is involved in a dispute over Pavarotti's will.)

What do you think about this notion of illness as part of one's character? Normally, we see illness as an alien invader to be fought off or, if that is not possible, endured. Before reading Mantovani's quote this morning, I'd been thinking of the idea of illness or disability as an integrated part of the afflicted person because I've been reading the new Oliver Sacks book "Musicophilia," which contains frequent observations of this kind, as do his earlier books "The Man Who Mistook His Wife For A Hat" and "An Anthropologist On Mars."

Sacks writes so beautifully and tells such interesting stories that it's hard to resist his point of view. He is thoroughly excited and fascinated by the brain abnormalities of the individuals he studies, and he expresses this emotion through the romanticization of disease and the perception of the disease as part of the integrated whole of the person. As I reader, I catch his excitement, but I worry sometimes that it's wrong to look at other people this way.

If you had a disease — or if you have a disease — would you want people to see the disease as part of your character, something that deepens you and makes you more fascinating?


oldirishpig said...

I was married to a woman diagnosed as bipolar. Leaving aside my questions of the accuracy of that diagnosis, the idea that 'she' was somehow seperate from her illness is silly and her attempts to deny it ultimately led to her death. Being mentally ill, in my view, is akin to being something as mundane as left-handed. It is you. Left-handers have to cope with the thousand (small) inconveniences of a right-handed world. The mentally ill are struggling even harder to deal with a reality that doesn't conform to what (from their point of view)it should be. The big problem lies in the fact that a lefty's difficulties have a much smaller impact on the lives of those around them. (Don't let anyone tell you menatl illness is non-communicable; the stress level is unbelievable.) As for physical infirmities, how can they not have an affect on the person? A friend of mine recently survived breast cancer; it completely changed her views on life. To live every single day with a problem/disease would have to have an equally profound (though possibly less abrupt) impact on the self.

George said...

One day there will be a revolution and all rights will be lefted.

Modern Otter said...

If I recall, Woody Guthrie biographer Joe Klein (same guy who wrote Primary Colors) suggested, although noncommittally, that the wordplay that characterized a lot of Guthrie's later songwriting was a byproduct of the Huntington's Disease that eventually led to his disability and death.

ricpic said...

Does suffering teach, instruct, inform?
Or is it merely a burden borne?
I'd say of the two, the latterly.
What's learned? When it's gone...you're free!

Pogo said...

Undeniably, a disease becomes part of one's integrated whole. Some people are born with the deficit, like deafness, and they must be one who is deaf. They are known in part by this, hence some deaf activists who reject those getting cochlear implants.

Others have a normal life, then lose a limb, or get cancer and face an early death. It changes you forever; there's a you before and a you after. Chronic diseases like arthritis and diabetes materially affect the personality, if only because of chronic pain.

Life has always been known as full of suffering, or even that, according to some, life is suffering. How one manages life's slings and arrows both reflects and modifies who you are.

Amba of course writes beautifully about her highs and lows living with someone who is losing parts of himself every day, though faint glimmers remain.

So your true personality can decay over time, or it may never develop free of infirmity (instead always being informed by it), or it can solidify into some kind of caricature, or it can grudgingly accept disease like an unwanted guest, or it can succumb to pain and center solely on its relief, or it can transcend suffering, offering grace to those around them.

Tim said...

"What do you think about this notion of illness as part of one's character? Normally, we see illness as an alien invader to be fought off or, if that is not possible, endured."

My mother had and eventually died, thirteen years after diagnosis, of multiple sclerosis. While it certainly wasn't part of her character initially, before long it was. More to the point, her battle against MS defined her character, and by the time she died, the disease defined her as much as anything else in her life did.

Maybe the better question is the distinction between curable v. incurable diseases and their effect upon character. Maybe the best question of all is why do healthy people have a seemingly natural ability to blissfully ignore/overlook the ravages of chronic diseases as if it cannot, will not happen to them? Is it an innate optimism to keep the species breeding despite all odds? Are we all just whistling past the graveyard...?

Ralph said...

My stepmother has enjoyed ill health for decades. Now that she really is physically, in addition to mentally, sick (largely due to prescription drug abuse, I believe) I'm having a hard time generating sympathy, even for my father, who's put up with her crap so long, when her own children won't.

Bissage said...
This comment has been removed by the author.
Bissage said...

I like everything about you. Your illness is part of you. It's like part of your character."

You know, I’ve never understood what was being said anytime I ever heard someone say “we love others for their faults.” Similarly, I never get it whenever I hear someone say “death is a part of life.”

But I’m pretty sure I understand what Pavarotti was saying when confronted by the news that his wife has multiple sclerosis.

He was saying “I love you.”

Joan said...

Pogo, that was beautiful.

As someone who has chronic illnesses, I can attest to the fact that they are part of the totality of me, not just my character. At this point my cancer isn't intruding on my daily life, other than daily medications and the minor complications which remain from my surgeries; my rhuematoid arthritis has been so mild these past few years I'm not even on medication for it. But even though these are "minor" and "mild" chronic conditions, I'm still dealing with pain significant enough to register, every single day. The closest I can come to explaining it to someone who has never experienced it is to say it's like having a fever, when everything hurts and your skin doesn't fit. Imagine feeling like that every single day.

So every day you have to make a choice about how you're going to live your life. Those choices, I think, are what make up your character, but of course character is informed by abilities and attitudes.

Oldirishpig: I'm left-handed, too. I think your comparison between chronically ill and being left-handed, with the difference being in degree, not in kind, makes a lot of sense.

rhhardin said...

Blanchot on Holderlin :

When madness had completely obscured Holderlin's mind, his poetry too reversed itself. All the toughness, all the concentration there had been, and the almost unbearable tension in his last hymns became repose, tranquility, and appeased power. Why? We do not know. Alleman suggests that it is as if he had been broken by the effort of resisting the impulse which dragged him away toward the boundlessness of the All - as if he had been worn out by the effort of withstanding the threat of nocturnal savagery - but as if he had also vanquished this threat, accomplished the reversal.

It is as if, between day and night, the sky and the earth, there opened henceforth, pure and naive, a region where he could see things in their transparency : the sky in its empty clarity and in this manifest void the face of God's remoteness. ``Is God,'' he says, in one of the poems of this period, ``unknown? Is he open like the sky? I rather believe so.''

Or : ``What is God? Unknown, yet rich with particularities is the view which the sky offers of him.'' And when we read these words gleaming with madness : ``Would I like to be a comet? Yes. For they have the speed of birds, they flourish in fire and are as children in purity,'' we sense how the desire to be united with the fire and with the light of day may have been realized for the poet in the purity which his exemplary rectitude assured him. And we are not surprised by this metamorphosis which, with the silent speed of a bird's flight, bears him henceforth through the sky, a flower of light, a star that burns but that unfurls innocently into a flower.

I take away the thought that character determines what your madness will be like for you, when that time comes.

I don't know that Alzheimer's is in fact like that, though. At least from the long term care ads.

It could be that your character is the first thing to go.

amba said...

Pogo, I didn't know you read my blog! I'm tickled.

A very interesting thinker, psychologist James Hillman (his best-known, though not his best, book is The Soul's Code) would, I think, second this view. He would say the illness is integral to the soul, rather than the character. Though he's been particularly occupied with psychopathology ("the logos of the pathos of the psyche") as something integral and intrinsic and somehow creative or expressive rather than alien and "wrong." It's pretty hard to reduce Hillman to a defining sentence, but here's how he describes "problems" in the book I think is the most accessible introduction to his work, InterViews: "not so much problems as they are emblems - like Renaissance emblemata showing a terrible impossible group of intertwined images that don't make sense and yet are the motto, the coat of arms, the basic family raised to the dignity of an emblem which sustains. . . . Problems sustain us - maybe that's why they don't go away." Here's a review I wrote a long time ago of a selection from his work.

Cedarford said...

Undoubtedly illness or handicap affects personality. Especially if it is a lifetime thing.

I am not so sure about diseases that strike later in life where personality has formed in a pretty permanent way.

I can believe someone born deaf had deafness as a major factor in their personality formation more than I can believe a 65 year old guy who barely survived a heart attack is now a member of the Cult Of Victimhood and is "a whole different person, now".

Or a kid with a badly scarred face.
Or a woman paralyzed in a car crash at age 17.
Someone born with a severe genetic disease that lives knowing they will be lucky to survive into their 20s.

Those hit later in life may believe it, but observing people I know who are older and have had a "life-changing experience" seems to indicate they are pretty much the same people as before. Except they also talk about how they feel they have been completely transformed by a life-changing illness or injury..

Cancer and other major life-threateners do change behavior in people's expected responses to the threat - and behavior that is unrelated to actually fighting the cancer, etc. -but driven by it - Like changes in diet, abandoning hobbies, changing friends, living by the moment - but I think not the underlying personality.

I base that on only 8-10 examples where I saw people's behavior change significantly as they were fighting major illness, then snap back to the behaviors and original personality they had before the affliction as they accepted coming death, or after they successfully recovered.

amba said...

To fix the sentence I screwed up: Though he's been particularly occupied with psychopathology ("the logos of the pathos of the psyche"), I'm pretty sure he would regard physical illness, too, as something integral and intrinsic and somehow creative or expressive rather than alien and "wrong." Not to say you bring on your own illness, new-age style; Hillman doesn't think causally but more in terms of design.

On another level, there's also an interesting popular science book called Riddled With Life that talks about how much parasitic, infectious illness and its pathology is inescapably a part of life. And then there's the article I linked here, which is completely mind-blowing.

reader_iam said...

Food for thought. Strikingly timely. (Both with regard to a close family member with a recent, rotten-as-can-be diagnosis--and prognosis.) And thank you, Althouse, for the post; "coincidence" does not take away from "meaningful." It's helpful.

Peter Palladas said...

If you had a disease — or if you have a disease — would you want people to see the disease as part of your character, something that deepens you and makes you more fascinating?

People love to see my 'shark bite' surgical scar, and even a few of them actually believe me when I tell that it was a Great White what done it.

If they're really stoned/gullible I'll wiggle my shoulderblade so that it flies out like a shark's fin and tell them that the shark ended up inside me. Surgeons tried to get it out, but it wouldn't come so they left it in situ.

That's for the people I like. But for others - you meet so many at parties - I'll tell them what it's like to die of metastatic sarcoma.

How it's like that scene in 'Alien' where the baby monster bursts out of John Hurt's chest - only in slo-mo and, of course, it doesn't then vanish into the ship's piping. (No melodrama there then.)

It's not a dance of death, but a dance with death. Sometimes a tango - which is fun - but often a foxtrot, which is tricky as I can never remember all the moves.

Tip for the day - when dancing with Death, do not step on His feet. Seriously uncool. Bit like Voltaire when asked on his deathbed to renounce Satan: "Not a good time to be making enemies."