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.

Cur­rent Mood: 🙁drained
Cur­rent Music: Rock­apel­la — Blah Blah Blah
Cyn is Rick's wife, Katie's Mom, and Esther & Oliver's Mémé. She's also a professional geek, avid reader, fledgling coder, enthusiastic gamer (TTRPGs), occasional singer, and devoted stitcher.
Posts created 4255

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Related Posts

Begin typing your search term above and press enter to search. Press ESC to cancel.

Back To Top