Tuesday, February 05, 2008

Dual citizenship.

Over at "The Seated View," Lene Andersen, responded today to a description of a book as containing stories about people dealing with chronic illnesses. She quoted from that description and responded to it:

And I quote from the Book Descriptions: "In 2003 Cohen published Blindsided, a bestselling memoir of illness. The outpouring of support revealed to him that not only does the public want to hear from people who overcome the challenges of illness, but that in the isolated world of illness, there are people who want their voices to be heard. Strong at the Broken Places was born of the desire of many to share their stories in the hope that the sick and those who love them will see that they are not alone each” (emphasis mine). And I got a little stroppy.

She goes on to explain "the stroppy":

Which brings me to the reason for the stroppy: that line about the overcoming (which isn’t written by the author, so I’m not dissing him). I looked it up and to overcome: to defeat, to prevail over, to surmount, to conquer. And that's the tricky bit, because traditionally, yes, the public only wants to hear from people who "overcome" the challenges of illness. They don't want to hear about the daily struggle unless it culminates in an achievement, unless you're the plucky kind, preferably pretty enough to qualify for poster child status, the one who can smile through the hardship, remind the great unwashed of how lucky they are to be healthy. And you know what? There is no overcoming of disability.
(Even though I have quoted a lot from her piece, you should read the whole thing.)

I am ready to confess that I have not (yet?) experienced living with a chronic condition like MS, or ALS, or arthritis, or Crohn's. But I am going to try to learn what I can from over a year of pain and a couple of spikes.

One thing I have noticed so much recently--and that Lene's piece made me think about--is how ready people are for me to be finished with my recovery. I have received any number of e-mails from friends saying, "I trust by now that your shoulder is back to normal..." or well-wishing comments from colleagues, making it clear that what they are ready for is good news. These comments are hard to hear, because, frankly, I am ready for it, too: who isn't, really. But after I smile at them and tell them how much better everything is, I feel like a big fibber, because I am also extremely aware of how far I have to go, of what is still wrong, and also of my fear (understanding?) that this recovery process will probably continue until something else goes downhill.

In The Body in Pain, Elaine Scarry writes about the inability of a person in physical pain and a person not in pain to communicate about it:
For the person whose pain it is, it is 'effortlessly' grasped (that is, even with the most heroic effort it cannot not be grasped); while for the person outside the sufferer's body, what is 'effortless' is not grasping it (it is easy to remain wholly unaware of its existence; even with effort, one may remain in doubt about its existence or may retain the astonishing freedom of denying its existence; and finally, if with the best effort of sustained attention one successfully apprehends it, the aversiveness of the 'it' one apprehends will only be a shadowy fraction of the actual 'it'). So, for the person in pain, so incontestably and unnegotiably present is it that 'having pain' may come to be thought of as the most vibrant example of what it is to 'have certainty,' while for the other person it is so elusive that 'hearing about pain' may exist as the primary model of what it is 'to have doubt.'
When the pain from my infection was coming on (I did not then know what the problem was), I called my then-orthopaedist's office for help. The nurse told me to take some Advil. I told her the pain was very severe. She said she would talk to the doctor and call back later. "Later" means two different things when you have a schedule to uphold and when (it turns out) you have a colony of organisms outgrowing and devouring your joint. Yet, I see upon reflection, this nurse probably gets many complaints of pain: it is easier and more natural (and probably even necessary) to doubt.

Looking back now on my account of that weekend of pain, I am reminded that I do not succeed in communicating the feeling of the pain. In fact, my memory of the weekend makes it hard for me to imagine that that account describes the same experience that I remember. As Virginia Woolf says, "English, which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver or the headache...." I do describe the various parts around the pain, and, I am ashamed to note, I do it all in the rhetoric of see-how-much-better-I-am-now. Well.

Susan Sontag writes:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Sometimes now I do feel like I was living abroad for a time, and even now I take occasional trans-oceanic flights, getting back just in time for some meeting or to teach a class. These days, my trips are less frequent than they once were, my stays abroad shorter. In fact, I can even think as the night-side kingdom as "abroad."

In my file of important documents in my desk I still have my c. 1997 readers' cards from the British Library and the National Library of Ireland, for whenever I need to go back. I expect that even if for a time I stash my night-side passport in that folder, it will never expire.


MartyTheFool said...


I was recently re-introduced to Susan Sontag, through a NY times book review.

Some nice quotes.

I'm sure people are ready for you to 'over' your recovery, but it takes what it takes, right? Your shoulder doesn't care whether anyone is ready or not, it just is. Those that have compassion will understand.

Keep up the great posting, there is some great, thoughtful stuff here.


rebeccapaul said...

Quite a few people I know are dealing with chronic pain or disabilities of some kind, and as someone who is lucky enough to be reasonably healthy, it can be very hard to understand. (You should be especially patient with PP, as Ami has to be patient with me when I forget...)

Isis said...

Hi Marty--was it the piece about the memoir by her son? That review really got me thinking, about the differences in her response to earlier and later cancers.....

And thanks, Rebecca. Actually, the PP has been *great* about this stuff, sometimes reminding *me* to be patient. I have been extremely lucky that way.

Pem said...

I highly recommend Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: Univ. of Chicago Press, 1997). Audre Lorde The Cancer Journals (San Francisco: Aunt Lute Books, 1992) is good too, particularly on dealing with the medical profession.