Ilness is NOT a Personal Failure

A link to an excerpt from The Alche­my of Ill­ness by Kat Duff was post­ed to one of the com­mu­ni­ties I read here on LJ (prob­a­bly fibromyal­gia but I’m not sure now). I was so impressed that I had to post it here.

One of the most dif­fi­cult things that sick and dis­abled peo­ple encounter is the dis­com­fort that many well and able-bod­ied peo­ple feel in the face of infir­mi­ty. I have felt that uncom­fort­a­bil­i­ty when faced with peo­ple who are dis­fig­ured or dis­abled in ways that I am not. I get ner­vous and wor­ry about say­ing or doing the wrong thing. But beneath the super­fi­cial ner­vous­ness is a more vis­cer­al anx­i­ety that makes me sweat: a deep resis­tance to those who are so obvi­ous­ly marked and lim­it­ed by their fates. I have caught myself cat­a­logu­ing the dif­fer­ences between us in my mind, as if the sim­ple acknowl­edg­ment of our com­mon­al­i­ty would enable their dis­as­ters some­how to infect me and spoil that slim ves­tige of health and hope I cling to in my own cor­ner of misery.

Like­wise, I have come to real­ize that many peo­ple are deeply dis­turbed by my con­tin­u­ing ill­ness; they want to help but also need to reas­sure them­selves that dis­as­ters like dis­ease can be avoid­ed and, if nec­es­sary, eas­i­ly reme­died. It’s hard to swal­low the fact that we have lit­tle or no say over the extent and tim­ing of our illnesses.

Before the advent of mod­ern med­i­cine, peo­ple gave thanks for good health, count­ing it as an unex­pect­ed bless­ing. Now we’ve come to assume well-being and regard ill­ness as a tem­po­rary break­down of nor­mal “per­fect” health.

Myths, fairy tales and great works of lit­er­a­ture, which abound with crip­ples and hunch­backs, one-eyed mon­sters and big-nosed lovers, sug­gest that these abnor­mal­i­ties are not only nor­mal but some­how nec­es­sary in the plot of life, they shape our char­ac­ters and des­tinies, forge our great­ness­es and small­ness­es, while enter­tain­ing and instruct­ing oth­ers. How­ev­er, that sen­si­bil­i­ty has been lost in recent years. Peo­ple go jog­ging three months after a coro­nary, under­go surgery to cor­rect upturned noses, starve them­selves to lose weight, risk­ing health and wealth to attain some myth­i­cal ide­al of the norm.

Sick­ness, by these def­i­n­i­tions, is not only a break­down of nor­mal health, but a per­son­al fail­ure, which explains why so many peo­ple feel so guilty and ashamed—or angry at any­one who inti­mates they have done some­thing wrong. When symp­toms per­sist and ill­ness becomes chron­ic, we often find fault with the vic­tim, we call it a lack of will pow­er, a desire for atten­tion, an unwill­ing­ness to work or change, rather than ques­tion the hid­den assump­tion that it is with­in our pow­er as human beings to over­come sick­ness and, in fact, it is our job to do so.

In a per­ver­sion of recent dis­cov­er­ies of body-mind uni­ty, self-help books encour­age sick peo­ple to cul­ti­vate pos­i­tive attitudes—faith, hope, laugh­ter, self-love, and a fight­ing spirit—to over­come their dis­eases. As a result, many sick peo­ple are shamed by friends, fam­i­ly, or even their heal­ers into think­ing they are sick because they lack these “healthy” atti­tudes, even though ill­ness­es often accom­pa­ny crit­i­cal turn­ing points in our lives, when it is nec­es­sary to with­draw, reflect, sor­row, and sur­ren­der, in order to make nec­es­sary changes.

“In health,” wrote Vir­ginia Woolf, “the gen­er­al pre­tense must be kept up and the effort renewed—to com­mu­ni­cate, to civ­i­lize, to share, to cul­ti­vate the desert, edu­cate the native, to work togeth­er by day and by night…In ill­ness this make-believe ceases…We cease to be sol­diers in the army of the upright, we become desert­ers. They march to bat­tle. We float with the sticks on the stream, hel­ter-skel­ter with the dead leaves on the lawn, irre­spon­si­ble and dis­in­ter­est­ed and able, per­haps for the first time in years, to look round, to look up—to look, for exam­ple, at the sky.”

When I’m well, I tend to fill my days with a mul­ti­tude of mean­ing­ful activities—my coun­sel­ing prac­tice, my writ­ing, a lover, friends and god­chil­dren, polit­i­cal involve­ments and spir­i­tu­al prac­tices, but when I get sick, even with minor ail­ments, I lose my moti­va­tion. After six months of chron­ic fatigue syn­drome, I could not remem­ber why I had ever want­ed to hike those trails, teach those class­es, or attend those meet­ings. Noth­ing seemed worth doing—and that aware­ness shim­mered with power.

I remem­ber the exact time and place I first real­ized its enor­mi­ty; I was sit­ting on the liv­ing-room couch after a long, tir­ing morn­ing of work, hold­ing a small bowl of rice in my hands. The phone rang, and—quite out of character—I just sat there and let it ring, as I turned the bowl in my hands and admired its per­fect shape. I felt privy to one of the world’s great secrets: that what is is enough, that each moment con­tains, like the cir­cle of that bowl, the whole of cre­ation in the space it offers, and we need not go any­where or do any­thing to find it. Since then there have been times when I have cried bit­ter­ly over the loss­es wrought by my ill­ness, but more often than not I have cher­ished the seren­i­ty of being still and feel­ing full with the moment at hand, of not want­i­ng any­thing more than I already have.

Even at my sick­est, when I was spend­ing the major­i­ty of the day­light hours in bed aching, I knew my ill­ness was show­ing me facets of truth that I had missed—we had all missed, it seemed—recovery; I want­ed to find a way to car­ry my sickbed rev­e­la­tions back with me into health, to bal­ance the lop­sided opti­mism, con­fi­dence, and activ­i­ty of my ear­li­er life.

The tra­di­tions of white West­ern civ­i­liza­tion have taught us to ignore and deny the sen­sa­tions, instincts, dreams, and rev­e­la­tions our bod­ies con­tin­u­al­ly gen­er­ate to main­tain a life-sus­tain­ing equi­lib­ri­um. Now that I am sick, I am appalled to think that I used to respond to tired­ness by push­ing through it like a bull­doz­er to get my work done.

There is noth­ing like a seri­ous ill­ness to blow down our frag­ile hous­es of sticks and straw. Stand­ing amid the rub­ble of their lives and thoughts, peo­ple with seri­ous ill­ness­es under­take the task of build­ing a new house, a new way of liv­ing, one that holds clos­er to the ground of being, the feed­back and teach­ings of their bod­ies and souls.

Dr. Arnold Beiss­er, who was par­a­lyzed with polio in young adult­hood, wrote of hav­ing to drop the strug­gle to “make some­thing of myself and find a place in the world” through “acts of will and effort” and learn to “sur­ren­der and accept what I had become” instead. We learn, as Beiss­er did, to stop com­par­ing our­selves with oth­ers, with what we used to be able to do in the past or hope to be able to do in the future, and to sim­ply accept our­selves the way we are. Beiss­er wrote that this sim­ple self-accep­tance made him feel whole for the first time ever, even though he was still bound to his wheelchair.

Yes, I real­ly want a copy of the book so that I can read the rest.