Can­cer isn’t the best thing that ever hap­pened to me

First the lump, then the fight, then the happy end­ing, and a bet­ter per­son emerges. Well, lis­ten: That’s not al­ways the way it is

Vancouver Sun - - ISSUES & IDEAS - JUDY SE­GAL Judy Se­gal is a pro­fes­sor of English at the Uni­ver­sity of Bri­tish Columbia.

At the beginning of this can­cer-aware­ness month, I want to en­cour­age a par­tic­u­lar kind of can­cer aware­ness: aware­ness of the way we talk about the dis­ease — es­pe­cially breast can­cer, which has ac­quired a spe­cial sta­tus in the world of ill­ness. The things we say about breast can­cer have be­come so generic and so pre­dictable that there are, in­creas­ingly, lim­its to what’s sayable about breast can­cer at all, es­pe­cially by the peo­ple who have it.

Last week, I read in a na­tional news­pa­per the lat­est of count­less per­sonal sto­ries of self-im­prove­ment by breast can­cer. “ Can­cer has changed who I am,” says the au­thor. “ I now place a higher value on my re­la­tion­ships with fam­ily and friends . . . . I have be­come more ad­ven­tur­ous . . . . I’ve re­fo­cused my ca­reer as­pi­ra­tions . . . .”

I find the story prob­lem­atic. Not be­cause the ac­count is false — no doubt it’s heart­felt — but be­cause it’s re­dun­dant ( how many can­cer sto­ries have you read that say ex­actly the same thing?) and un­wa­ver­ingly self-righ­teous. In its in­sis­tence on the ne­ces­sity of a pos­i­tive at­ti­tude (“ When you stay pos­i­tive, you stay pow­er­ful”), it’s also co­er­cive. If, as a per­son with can­cer, you vi­o­late the code of op­ti­mism, or if can­cer some­how failed to im­prove you, you’d bet­ter be quiet. So I thought I’d speak up. Peo­ple with a se­ri­ous ill­ness have sto­ries they tell their friends and fam­ily, sto­ries they tell in pub­lic and sto­ries they tell their doc­tors. Rita Charon, di­rec­tor of the nar­ra­tive medicine pro­gram at Columbia Uni­ver­sity in New York, teaches physi­cians to lis­ten care­fully to pa­tients’ sto­ries, to in­ter­pret them and, she says, to “ hon­our” them. The trou­ble is that, over­all, it seems, some sto­ries are more hon­oured than oth­ers.

As an English pro­fes­sor who works on cul­tural stud­ies of health and medicine, I be­gan, about three years ago, to study pub­licly told ill­ness nar­ra­tives. I dis­cov­ered an of­ten-re­peated breast-can­cer story that was, in ef­fect, a stan­dard story. Its com­po­nents and its at­ti­tude were al­most pre­scribed ( see above): I found a lump; I was scared; I stayed pos­i­tive and I fought; I re­cov­ered; now I am a bet­ter per­son; in some ways, can­cer is the best thing that ever hap­pened to me.

“ What,” I asked, “ do such sto­ries do for us, and what do they do to us? How do they help us an­swer the dif­fi­cult ques­tion, ‘ How shall I be ill?’” Cer­tainly, the stan­dard story pro­motes cer­tain ill­ness val­ues: one should be strong in the face of ill­ness and fight; one should be pos­i­tive and op­ti­mistic; one should, in the end, learn things, es­pe­cially about one­self. In 2008, I wrote an es­say on the pub­lic func­tion of breast-can­cer nar­ra­tives, and it was pub­lished in a schol­arly jour­nal of lan­guage stud­ies.

The es­say was well-re­ceived, ex­cept by two women who wrote to me to say, “ If you haven’t had breast can­cer, you can’t know what it’s like.” The ob­jec­tion was one I took se­ri­ously.

Al­though I didn’t re­ally be­lieve that you can’t know about some­thing un­less you’ve ex­pe­ri­enced it per­son­ally, I was chastened a bit. I had mo­ments of won­der­ing whether, if I were ever un­lucky enough to re­ceive a breast-can­cer di­ag­no­sis, I might go to bed one night as my­self and wake up as some­one with a sud­den taste for pink T-shirts and group ath­leti­cism. Well, I’m sad to say that I did re­ceive such a di­ag­no­sis – but I am able to re­port I am still, pretty much, my­self. Only now I have a bet­ter idea of how the whole nar­ra­tive/ val­ues thing re­ally works.

In the weeks af­ter my di­ag­no­sis, many friends and fam­ily mem­bers showed me ex­traor­di­nary kind­ness and grace: some shared per­sonal sto­ries, some de­liv­ered food and books; my older sis­ter, at 65, be­came again my big sis­ter.

But there was a strong el­e­ment of some­thing else in some of the cards and e-mails I re­ceived. Over and over again, I was praised for be­ing strong and pos­i­tive, coura­geous and com­bat­ive. “ I know you’re a fighter,” some mes­sages said. But this praise was of­fered mostly in the ab­sence of ev­i­dence that I was re­ally any of those things at all. I was, in those mes­sages, steered away from other ways of be­ing ( weak, tired, dis­cour­aged ...), for th­ese were, im­plic­itly, by con­trast, blame­wor­thy. That is, it’s not that I was told di­rectly that I had to be strong, and so on. Rather, I was con­grat­u­lated for al­ready be­ing those things. My choices for the pub­lic pre­sen­ta­tion of me were, with each of th­ese mes­sages, nar­row­ing.

An un­con­ven­tional breast-can­cer story gets harder and harder, un­der ex­ist­ing con­di­tions, to tell. Most peo­ple don’t want to hear from a breast-can­cer pa­tient who is an­gry — not at the dis­ease it­self, but at the terms of the club of which she is sud­denly a mem­ber. As a can­cer pa­tient, I am dis­turbed by the cor­po­ra­ti­za­tion of the dis­ease; I be­lieve breast can­cer does not en­no­ble peo­ple just by tak­ing up res­i­dence in them; I re­ject a sur­vival­ism that seems to blame the breast-can­cer dead for not try­ing hard enough. Like au­thor-critic Bar­bara Ehren­re­ich and jour­nal­ist Wendy Mes­ley, I can’t en­dorse a pink-rib­bon at­ti­tude fo­cused on per­sonal bat­tles and tri­umphs, while a larger, epi­demi­o­log­i­cal, prob­lem goes cor­re­spond­ingly un­der-ad­dressed: Why is there so daz­zlingly much of this dis­ease in the first place?

In fact, most peo­ple don’t want to hear about the most hor­ri­ble fears of can­cer pa­tients ei­ther. Of course, they don’t. We are their moth­ers, their daugh­ters, their sis­ters and their friends, and they mean to wish us well: lit­er­ally. No won­der, though, that some of us have in­ter­nal­ized the rules for speak­ing. And we do our cry­ing in the mid­dle of the night, alone or, if we are lucky, with part­ners who are not afraid of us be­ing afraid.

Mostly what I feel is that can­cer threw me high up in the air and tossed me around vig­or­ously. I have been swirled among mul­ti­ple mam­mo­grams, biopsy, MRI, surgery, ra­di­a­tion. And soon, I ex­pect, I will be put down on the ground again — only not ex­actly in the same place. We, each of us, when we face a di­ag­no­sis of se­ri­ous ill­ness — heart dis­ease, neu­rode­gen­er­a­tive dis­ease, any can­cer — need to get ori­ented to the new place in which we find our­selves. The sto­ries we might tell of the ex­pe­ri­ence, if we wish to tell a story at all, do need to be hon­oured, even if they are — es­pe­cially if they are — the ones no one re­ally ex­pected to hear.

Can­cer cells: ‘ Why is there so daz­zlingly much of this dis­ease in the first place?’ Judy Segal won­ders.

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