On Being a CrippleFarmington Public Schools.docx
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On Being a CrippleFarmington Public Schools.docx
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OnBeingaCrippleFarmingtonPublicSchools
OnBeingaCripple-FarmingtonPublicSchools
OnBeingaCripple
byNancyMairs
Toescapeisnothing.Nottoescapeisnothing.
--LouiseBogan
TheotherdayIwasthinkingofwritinganessayonbeingacripple.Iwasthinkinghardinoneofthestallsofthewomen'sroominmyofficebuilding,asIwasshovingmyshirtintomyjeansandtuggingupmyzipper.Preoccupied,Iflushed,pickedupmybookbag,tookmycanedownfromthehook,andunlatchedthedoor.Somanymovementsunbalancedme,andasIpulledthedooropenIfelloverbackward,landingfullyclothedonthetoiletseatwithmylegssplayedinfrontofme:
theoldbeetle-on-its-backroutine.Saturdayafternoon,thebuildingdeserted,IwasfreetolaughaloudasIwriggledbacktomyfeet,myvoicebouncingofftheyellowishtilesfromalldirections.Hadanyonebeentherewithme,I'dhavebeenstillandfaintandhotwithchagrin.Idecidedthatitwashightimetowritetheessay
First,thematterofsemantics.Iamacripple.Ichoosethiswordtonameme.Ichoosefromamongseveralpossibilities,themostcommonofwhichare"handicapped"and"disabled."Imadethechoiceanumberofyearsago,withoutthinking,unawareofmymotivesfordoingso.Evennow,I'mnotsurewhatthosemotivesare,butIrecognizethattheyarecomplexandnotentirelyflattering.People--crippledornot--winceattheword"cripple,"astheydonotat"handicapped"or"disabled."PerhapsIwantthemtowince.Iwantthemtoseemeasatoughcustomer,onetowhomthefates/gods/viruseshavenotbeenkind,butwhocanfacethebrutaltruthofherexistencesquarely.Asacripple,Iswagger.
But,tobefairtomyself,acertainamountofhonestyunderliesmychoice."Cripple"seemstomeacleanword,straightforwardandprecise.Ithasanhonorablehistory,havingmadeitsfirstappearanceintheLindisfarneGospelinthetenthcentury.Asaloverofwords,Iliketheaccuracywithwhichitdescribesmycondition:
Ihavelostthefulluseofmylimbs."Disabled,"bycontrast,suggestsanyincapacity,physicalormental.AndIcertainlydon'tlike"handicapped,"whichimpliesthatIhavedeliberatelybeenputatadisadvantage,bywhomIcan'timagine(myGodisnotaHandicapperGeneral),inordertoequalizechancesinthegreatraceoflife.Thesewordsseemtometobemovingawayfrommycondition,tobewideningthegapbetweenwordandreality.Mostremoteistherecentlycoinedeuphemism"differentlyabled,"whichpartakesofthesamesemantichopefulnessthattransformedcountriesfrom"undeveloped"to"underdeveloped,"thento"lessdeveloped,"andfinallyto"developing"nations.Peoplehavecontinuedtostarveinthosecountriesduringtheshift.Somerealitiesdonotobeythedictatesoflanguage.
Mineisoneofthem.Whateveryoucallme,Iremaincrippled.ButIdon'tcarewhatyoucallme,solongasitisn't"differentlyabled,"whichstrikesmeaspureverbalgarbagedesigned,byitsabilitytodescribeanyone,todescribenoone.IsubscribetoGeorgeOrwell'sthesisthat"theslovenlinessofourlanguagemakesiteasierforustohavefoolishthoughts."AndIrefusetoparticipateinthedegenerationofthelanguagetotheextentthatIdenythatIhavelostanythinginthecourseofthiscalamitousdisease;Irefusetopretendthattheonlydifferencesbetweenyouandmearethevariousordinaryonesthatdistinguishanyonepersonfromanother.Butcallme"disabled"or"handicapped"ifyoulike.Ihavelongsincegrownaccustomedtothem;andiftheyarevague,atleasttheyhintatthetruth.Moreover,Iusethemmyself.Societyisnoreadiertoacceptcripplednessthantoacceptdeath,war,sex,sweat,orwrinkles.Iwouldneverrefertoanotherpersonasacripple.ItisthewordIusetonameonlymyself.
Ihaven'talwaysbeencrippled,afactforwhichIamsoundlygrateful.Tobewholeoflimbis,Iknowfromexperience,infinitelymorepleasantandusefulthantobecrippled;andifthatknowledgeleavesmeopentobitternessatMYloss,thephysicalsoundnessIonceenjoyed(thoughIdidnotenjoyithalfenough)iswellworththeoccasionalstabofregret.Thoughneveranygoodatsports,Iwasanormallyactivechildandyoungadult.Iclimbedtrees,playedhopscotch,jumpedrope,skated,swam,rodemybicycle,sailed.Idespisedteamsports,spendingsomeofthewretchedestafternoonsofmylife,sweatyandhumiliated,behindafield-hockeystickandunderabasketballhoop.ItrampedaloneformilesalongthebridlepathsthatwebbedthewoodsbehindthehouseIgrewupin.Iswayedthroughcountlessdimhoursinthearmsofonemanoranotherunderthescatteredshotoflightfrommirroredballs,andgyratedthroughcountlessmoreasTabHunterandJohnnyMathisgavewaytotheRolling
Stones,CredenceClearwaterRevival,Cream.Iwalkeddowntheaisle.Ipushedbabycarriages,changedtiresintherain,marchedforpeace.
WhenIwastwenty-eightIstartedtotripanddropthings.Whatatfirstseemedmynaturalclumsinesssoonbecametoopronouncedtoshrugoff.Iconsultedaneurologist,whotoldmethatIhadabraintumor.Abatteryoftests,increasinglydisagreeable,revealednotumor.AboutayearandahalflaterIdevelopedablurredspotinoneeye.Ihad,atlast,theepisodes"disseminatedinspaceandtime"requisiteforadiagnosis:
multiplesclerosis.Ihaveneverbeensorryforthedoctor'sinitialmisdiagnosis,however.Foralmostaweek,untilthenegativeresultsofthetestswerein,IthoughtthatIwasgoingtodierightaway.Everydayforthepastnearlytenyears,then,hasbeenakindofgift.Iacceptallgifts.
Multiplesclerosisisachronicdegenerativediseaseofthecentralnervoussystem,inwhichthemyelinthatsheathesthenervesissomehoweatenawayandseartissueformsinitsplace,interruptingthenerves'signals.Duringitscourse,whichisunpredictableanduncontrollable,onemaylosevision,hearing,speech,theabilitytowalk,controlofbladderand/orbowels,strengthinanyorallextremities,sensitivitytotouch,vibration,and/orpain,potency,coordinationofmovements--thelistofpossibilitiesislengthyand,yes,horrifying.Onemayalsoloseone'ssenseofhumor.That'stheeasiesttoloseandthehardesttosurvivewithout.
Inthepasttenyears,Ihavesustainedsomeoftheselosses.CharacteristicofMSaresuddenattacks,calledexacerbations,followedbyremissions,andtheseIhavenothad.Instead,mydiseasehasbeenslowlyprogressive.MyleftlegisnowsoweakthatIwalkwiththeaidofabraceandacane;andfordistancesIuseanAmigo,avariationontheelectricwheelchairthatlooksratherlikeanelectrifiedkiddiecar.Inolongerhavemuchuseofmylefthand.Nowmyrightsideisweakeningaswell.Istillhavetheblurredspotinmyrighteye.Overall,though,I'vebeenluckysofar.Myworldhas,ofnecessity,beencircumscribedbymylosses,buttheterrainleftmehasbeenampleenoughformetocontinuemanyoftheactivitiesthatabsorbme:
writing,teaching,raisingchildrenandcatsandplantsandsnakes,reading,speakingpubliclyaboutMSanddepression,evenplayingbridgewithpeoplepatientandhonorableenoughtoletmescattercardseverywhichwaywithoutsneakingapeek.
LestIbegintosoundlikePollyanna,however,letmesaythatIdon'tlikehavingMS.Ihateit.Mylifeholdsrealities--harshones,someofthem--thatnoright-mindedhumanbeingoughttoacceptwithoutgrumbling.Oneofthemisfatigue.IknowofnoonewithMSwhodoesnotcomplainofbone-weariness;inadiseasethatpresentsanastonishingvarietyofsymptoms,fatigueseemstobeacommonfactor.Iwakeupinthemorningfeelingthewaymostpeopledoattheendofabadday,andItakeitfromthere.Asaresult,Ispendalotoftimeinextremisand,impatientwithlimitation,Itendtoignoremyfatigueuntilmybodybreaksdowninsomewayandforcesrest.ThenImisspicnics,dinnerparties,poetryreadings,thebriefvisitsofoldfriendsfromoutoftown.Theoffspringofapuritanicaltraditionofexceptionalvenerability,Icannotviewtheselapseswithoutshame.MylifeoftenseemsaseriesofsmallfailurestodoasIought.
Ilead,onthewhole,anordinarylife,probablyratherliketheoneIwouldhaveledhadInothadMS.Iamluckythatmypredilectionswerealreadysolitary,sedentary,andbookish--unliketheworld-famousFrenchcellistIhavereadabout,ortheyoungwomanItalkedwithonelongafternoonwhowantedonlytobeajockey.IhadjustbegungraduateschoolwhenIfoundoutsomethingwaswrongwithme,andIhaveremained,interminably,agraduatestudent.PerhapsIwouldnothaveifI'dthoughtIhadthestaminatoreturntoafull-timejobasatechnicaleditor;butI'veenjoyedmystudies.
Inadditiontostudying,Iteachwritingcourses.Ialsoteachmedicalstudentshowtogiveneurologicalexaminations.Ipickupfreelanceeditingjobshereandthere.Ihaveraisedafostersonandsenthimintotheworld,wherehehasmademetwograndbabies,andIamstillescortingmydaughterandsonthroughadolescence.IgotoMasseverySaturday.Iamasuperb,ifmessy,cook.Iamalsoanenthusiasticlaundress,capableofsortingahamperfullofclothesintofivesubtlydifferentiatedpiles,butaterriblehousekeeper.Icandoitalicwritingand,inanemergency,batheanoil-soakedcat.IplayafiendishgameofScrabble.WhenIhavethetimeandthemoney,Iliketositonmyfrontstepswithmyhusband,drinkingAmarettoandsmokingacigar,asweimagineourcounterpartsinLeningradandmakesurethatthesungetsdownoncemorebehindthesharpchildishscrawloftheTucsonMountains.
Thislivelyplentyhasitsbleakcomplement,ofcourse,
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