Themes of Suffering in Later Life | The Journals of Gerontology

SUFFERING is a ubiquitous human experience but is not specifically the same as depression, grief, illness, pain, or similar events that occur in later life. SkiptoMainContent Advertisement SearchMenu AccountMenu Menu SignIn Register NavbarSearchFilter ThisissueAllTheJournalsofGerontology:SeriesB AllGSAJournalsAllJournals MobileMicrositeSearchTerm Search SignIn Register Issues TheJournalsofGerontology,SeriesB(1995-present) JournalofGerontology(1946-1994) MoreContent AdvanceArticles Editor'sChoice VirtualCollection Blogs Submit CallsforPapers AuthorGuidelines PsychologicalSciencesSubmissionSite SocialSciencesSubmissionSite Purchase Advertise AdvertisingandCorporateServices Advertising Mediakit ReprintsandePrints SponsoredSupplements JournalsCareerNetwork About AboutTheJournalsofGerontology,SeriesB AboutTheGerontologicalSocietyofAmerica EditorialBoard-PsychologicalSciences EditorialBoard-SocialSciences Alerts Self-ArchivingPolicy DispatchDates ContactUs GSAJournals Issues TheJournalsofGerontology,SeriesB(1995-present) JournalofGerontology(1946-1994) MoreContent AdvanceArticles Editor'sChoice VirtualCollection Blogs Submit CallsforPapers AuthorGuidelines PsychologicalSciencesSubmissionSite SocialSciencesSubmissionSite Purchase Advertise AdvertisingandCorporateServices Advertising Mediakit ReprintsandePrints SponsoredSupplements JournalsCareerNetwork About AboutTheJournalsofGerontology,SeriesB AboutTheGerontologicalSocietyofAmerica EditorialBoard-PsychologicalSciences EditorialBoard-SocialSciences Alerts Self-ArchivingPolicy DispatchDates ContactUs GSAJournals Close searchfilter Thisissue AllTheJournalsofGerontology:SeriesB AllGSAJournals AllJournals searchinput Search AdvancedSearch SearchMenu ArticleNavigation Closemobilesearchnavigation ArticleNavigation Volume59 Issue1 January2004 ArticleContents Abstract Methods THEMESOFSuffering Discussion Appendix References ArticleNavigation ArticleNavigation ThemesofSufferinginLaterLife HelenK.Black, HelenK.Black AddresscorrespondencetoHelenK.Black,ThomasJeffersonUniversity,CommunityHomeHealthcareResearch,130S.9thStreet,Suite515,Philadelphia,PA19107.E-mail:[email protected] Searchforotherworksbythisauthoron: OxfordAcademic PubMed GoogleScholar RobertL.Rubinstein RobertL.Rubinstein Searchforotherworksbythisauthoron: OxfordAcademic PubMed GoogleScholar TheJournalsofGerontology:SeriesB,Volume59,Issue1,January2004,PagesS17–S24,https://doi.org/10.1093/geronb/59.1.S17 Published: 01January2004 Articlehistory Received: 13November2002 Accepted: 25August2003 Published: 01January2004 PDF SplitView Views Articlecontents Figures&tables Video Audio SupplementaryData Cite Cite HelenK.Black,RobertL.Rubinstein,ThemesofSufferinginLaterLife,TheJournalsofGerontology:SeriesB,Volume59,Issue1,January2004,PagesS17–S24,https://doi.org/10.1093/geronb/59.1.S17 SelectFormat Selectformat .ris(Mendeley,Papers,Zotero) .enw(EndNote) .bibtex(BibTex) .txt(Medlars,RefWorks) Downloadcitation Close PermissionsIcon Permissions Share Email Twitter Facebook More NavbarSearchFilter ThisissueAllTheJournalsofGerontology:SeriesB AllGSAJournalsAllJournals MobileMicrositeSearchTerm Search SignIn Register Close searchfilter Thisissue AllTheJournalsofGerontology:SeriesB AllGSAJournals AllJournals searchinput Search AdvancedSearch SearchMenu Abstract Objectives.Thisqualitativeresearchstudyexploredthepersonalmeaningofsufferingtoagroupof40community-dwellingelders,stratifiedbygenderandrace.Methods.Werecruited40informantswhowere70yearsoldorolderfromthePhiladelphia,PA,areaforextendedqualitativeinterviews,whichelicitedtheirlifestoryandexperiencesandphilosophiesaboutsuffering.Cellscontained10AfricanAmericanmenandwomenand10EuropeanAmericanmenandwomeneach(N=40).Throughanalysisofdata,weplacedelders'experiencesofsufferingunderthreegeneralthemes:sufferingaslackofcontrol,sufferingasloss,andthevalueofsuffering.Results.Informantsdevelopedauniquedefinition,attribution,theory,andtheodicyaboutsufferingbasedontheparticularityoftheexperienceaswellashowthey“fit”sufferingintotheirlivesasawhole.Briefcasestudiesillustratehowthemesemergedinelders'storiesofsuffering.Discussion.Onthebasisofthisresearch,itappearsthat,althoughtheyhavesomesimilarities,elders'experiencesofsufferingareuniqueandincomparable.Similaritiesconcerninformants'connectionofsufferingwithfinitude.Theincomparabilityofsufferingexperiencesrelatetoinformants'uniquepersonalhistories,perceptions,and“cause”ofsuffering.Throughtheprocessoftheinterview,eldersconnectthesufferingexperiencetotheentiretyofthelifelivedandthestoryofsufferingtothelifestory. SUFFERINGisaubiquitoushumanexperiencebutisnotspecificallythesameasdepression,grief,illness,pain,orsimilareventsthatoccurinlaterlife.Someeldersexplainthatnegativeevents,suchasdepressionorsuffering,differfromeachotherintheircauses,outcomes,andquality.Althoughsufferingcanbedefinedfromaneticperspective(aswedointheparagraphsthatfollow),thisarticlefocusesonhowasampleofcommunity-dwellingeldersnarratedtheirownsufferingandwhateventsprecipitatedit.Wedescribehowindividualexperiencesofsufferinginlaterlifecanbeorganizedthematically.Factorsthatdifferentiatesufferingfromsomeoftheeventsjustnamedarethatsufferingaffectstheindividualonmanyfronts,mayreachthecoreoftheself,andmayconsumetheself.Atriggermaybeaneventsuchasgrieforillness,orastateofbeingsuchaspoverty.Eldersnotethattheenduringnatureofsufferingmightoverwhelmtheiragingmindsandbodies;theyworrythattheywilldiebeforesufferingends.Ourgoalinthisarticleistodescribeasignificantaspectoftheagingexperiencethatisinfrequentlydiscussed.Onthebasisofourresearch,mostindividualshaveexperiencedsuffering.Oneofourinformantsnotedthat“sufferingisanormalpartoflife.”Wealsotakeupthethemeofthedeviancyofsuffering,thatis,thatsufferingisstrangeand“wrong”totheonewhosuffers.Thefactthatsufferingisbothfamiliarandalientouchesonacomponentofsufferingthatwaxedsignificantinourstudy—theparadoxofsuffering.Forpurposesofdiscussion,wedefinethetermsthatareintegraltoandrelatedinthisarticle,suchasculture,self,andsuffering.Cultureisournativestartingpoint;itisthesharedblueprintofboththelocalandlargerworldintowhichwearebornandtakepartinshaping.Culturecannotbeabstractedfromasociety'shistoricalreality;interactionamongmembersiscentraltoinheritingandbequeathingaculture(Hall,1959;Turner,1996).Theselfmaybedefinedastwocomplementaryfaculties:aprocessthatisunfoldingandanobjectthatisobserved(Charmaz,1995).Inthisdefinitiontheselfincludesanabidingidentitythatisbothactorandactedupon,watcherandwatched,andsubjectandobjectoflifeexperiences.Sufferinghasbeendefinedinmedical,psychological,andreligiousidiomsas“thestateofseveredistressassociatedwitheventsthatthreatentheintactnessoftheperson”(Cassell,1982,p.640);“athreattoourcomposure,ourintegrity,andthefulfillmentofourintentions”(Reich,1987,p.117);and“asinvolvingthreatsthatconstituteanalienationofourbeing”(vanHooft,1998,p.14).Weofferthesedefinitionsbecausetheyspeaktotheall-encompassingnatureofsufferingasathreattoanintegratedexistence,whichresonateswithourinformants'accountsofsuffering.Thedefinitionofsufferingisconnectedtothecultureinwhichitisdefined,totheethosofthesociety,andtothewayanindividualcommunicatessufferingwithinthatsociety(Scheper-Hughes&Lock,1987).Inotherwords,sufferingisauniqueformofsocialcommunication.Asalivedexperience,sufferingisladenwithsocialconnotationsandmarkedbysymbolsthatarerecognizedandsharedthroughouttheculture(Martin,1987).Collectiveinterpretationsofsufferingcreateitsvalueaswellasarejectionofitsvalue(Graneheim,Lindah,&Kihlgren,1997).Sufferingmaybenamedacceptable,unacceptable,aculturalexemplar,orevenan“outrage”inagivensociety(McGoldrick,1996;Rosen&Weltman,1996;Townes,1997;Zborowski,1969).Criticaltotheexperienceofsufferingistheperceptionthatcommonsensenotionsoflifeandlivingdisappear.Thisissometimesrepresentedininformants'inabilitytonarratetheirsufferingexperiencewithinthecontextoftheirlifestory;theflowofnarrativemaybeinterruptedatthepointofsuffering.Background Priorresearchonandaroundsufferinghasexaminedtheexperiencefromavarietyofperspectives.Thereareseveralexcellentstudiesthathaveexploredtheexperientialproblemsofoldage,suchasdecline,fear,illness,loneliness,andgrief,and,throughtheseexperiences,suffering(Kaufman,1980;Myerhoff,1979,1984).Therearefewstudies,however,thatspecificallyexaminesufferingintheaged-basedwaywediscusshere.Asnoted,researchsuggeststhattheexperienceofsuffering,althoughinsomewayuniversal,hasalocalmeaningandvariesfromculturetoculture(Kleinman,1997).InAmerica,sufferingmaybeseenasaspecialpropertyoftheagedbecauseofculturalmythsaboutoldage.Theheightenedincidenceofchronicandacutedisease,physicalpain,depression,declineinmobility,morefrequentloss,andnearnesstodeathorfinitude,althoughnormative,maycontributetoanoverallsensethatelderssuffer.Apsychologicalscenarioof“timerunningout,”being“passedby,”or“pastone'sprime”isculturallyconnectedtooldage.ThetemporalandspatialcharacteristicsofsufferingspeaktoculturalnotionsoftheselfthroughtimeandtheculturalizedbodywhosevalueresidesinnotionsofproductionandreproductioninAmericansociety(Cotton,1999;Harrison,1985;Martin,1987;Ross&Wright,1998;Scheper-Hughes&Lock,1987;Sennett&Cobb,1974).Newrolesoridentitiesmayseemclosedoffbecauseeldersperceivethatthereistoolittletimelefttopursuethem(Charmaz,1995).Althoughmanyinformantsfelt,inmanyways,ageless,internalizingtheculturalviewofoldageasunproductivecausedsuffering.Inthesocialsciences,thenotionof“socialsuffering”hasbeenintroducedtoexamine“thedevastatinginjuriesthatsocialforcescaninflictonhumanexperience”(Kleinman,1997,p.ix).Recentworkinanthropologyhasattendedtotheeffectsofbroadcultural,economic,andpoliticalforces,oftenviolent,thatindifferentwaysaffectindividuals'andgroups'subjectivitiesandcreatesuffering(Adelson,2000;Bourdieu,1993;Das,1997,2000;Das&Kleinman,2001;DeMeis,1999;Desjarlais&Kleinman,1997;Estroff,1984;Green,1999;Kleinman,Das,&Lock,1997;Morgan&Wilkinson,2001;Scarry,1985;Uehara,Morelli,&Abe-Kim,2001).Theemphasishereisonlarge-scalesocialandpublicstructuresthatproducesufferinginindividuals.Someofthesecategories,suchaspovertyandracism,influencedthelivesoftheelderswestudied.Their“intimate”or“private”sufferingoccursinasocialmilieuandisjudgedassufferingwithintheethosofthelargerpublicworld(Lipton&Marbach,1984;Zborowski,1969).Unfortunately,theliteraturehererarelyisgerontological,althoughmanyofitsissues,includingtherelationofsocialstructuresandsocialsufferingtoindividualsubjectivity,areimportantgerontologically.Whensufferingisviewedfromahealthcareperspective,somehavesuggestedthatthefocusofclinicalpracticeshouldbethetreatmentofhumansufferinginageneralsense(Cassell,1991;Cherny,1996;Heath,1989;Kleinman,1988;Maeve,1998;vanHooft,1998),incontrasttotreatmentofspecificpartsofthebody,diseasesymptoms,ororgansystems.Here,theconcernisforthefragmentationanddecontextualizationofthepersonthroughstandardhealthcarepractices,whichineffectseparatepersonfrommeaningfulcontext.Thevaluesexpoundedinthisperspectiveareevidencedingerontologyitself,whichincreasinglycallsforamoreholistictreatmentoftheaged(Regnier,1993).Asimilarsensibilityisfoundinworkthatfocusesonthewholeselfinend-of-lifecare,andontheefficacioustreatmentofemotionalandphysicalpaininclinicalandhospicesettings(Kaufman,2000;Kleinman,1997;Lawton,2000).Generally,aspectsofsufferinghavebeentreatedinaneventordisease-specificmanner.Aclassicdistinctioninmedicalanthropologyhasbeenmadebetweendisease,abiologicalconstruct,andillness,orthevictim'sexperienceofthediseaseepisode.Thisdistinctioncertainlyappliestosufferinginwhichthe“cause”mayrangefromamajorpublictraumatoaprivateandsubtleexperience;bothmaybesubjectivelyexperiencedassuffering.Medicalanthropologyhaspursueddescriptionandanalysisofillnesses,focusingontheillnessexperienceandonconstructssuchas“distress,”“misfortune,”“affliction,”andsimilarterms(Godoy,Jacobson,&Wilkie,1998;Kleinman,1980,1988;Lewin,1979;Morse&Johnson,1991,chap.16,pp.31–39).Workonnative“explanatorymodels”and“exploratorymaps”ofillnessexperienceshasbeensignificant(Williams&Healy,2001).Althoughthisworkisdifferentfromourconcernwithelders'sufferingoutsideofpatienthood,itissimilartoourapproachtotheexperienceofsufferingascommon,unique,bothobservableandhidden,andcomplex.Otherworkobtainshereaswell.Researchondepression,illness,loss,poverty,racism,stressandtrauma,andposttraumaticstressdisordersuggestsacontinuingroleoftheseeventsinshapingalife(Banyard,Williams,&Siegel,2001;Bar-Tur&Levy-Shiff,2000;Breslau,Davis,Peterson,&Schultz,2000;Dasberg,2001;Hyer&Sohnle,2001;Ngo,Tranh,Gibbons,&Oliver,2001;Simeon,Guralnik,Schmeidler,Sirof,&Knutelska,2001;Weintraub&Ruskin,1999).Whatissignificantinthesestudiesisthattheyfocusonhowindividualsdefine,understand,andcopewiththestressorstheyexperienceaspartofbothapersonalandsharedsystemofmeaning(Becker,1997).Webelieveindividualspecificityinmeaningisimportant.Forexample,wesuggestthatjustasthereareelderswhoarenotillandyetsuffer,therearealsoelderswhoareillanddonotperceivethemselvesassuffering(Charmaz,1995).Anygeneralizationaboutsufferinginlaterlifefailstoaccountforindividualperceptioninsuffering,elders'senseofaccumulatedsufferings,andtheuniquevantageinolderageofthepurposeorvalueofsufferingtothelifelived.Generalizationsalsofailtopenetrateproblematicemotions,suchasguilt,regret,shame,orafailuretoforgiveorperceiveoneselfasforgiventhatcausesufferinginlaterlife,especiallyifeldersbelievethattheyhavenosecondchancesto“rightwrongs”doneearlyinlife.Thesesubtletiesofsufferingindicatethatitisanexperiencetoocomplexforreductiontoasimpleexplanation;toodiffusetobeanalyzedsolelyasapsychologicalorsocialeventorculturalphenomenon;andtoopersonallypowerfultobeabsorbedbyanystandardparadigmorextanttheodicy.Methods Theoverallgoalofourresearchwastoinvestigatesomeofthewaysasampleofelderlypersonsdefined,experienced,anddiscussedsuffering.Tothatend,werecruited40researchinformantsfromthePhiladelphia,PA,areaforextendedqualitativeinterviews.Informantsaged70andolderwereincluded;theaverageagewas78.Thesamplewasstratifiedbyethnicity(AfricanAmericanandEuropeanAmerican)andbygender.Consequently,cellscontained10AfricanAmericanmenandwomenand10EuropeanAmericanmenandwomeneach(N=40).InformantswererecruitedthroughpastresearchrostersofthePolisherResearchInstitute,aswellasthroughrequeststoinformantsinongoingresearchprojectsattheinstitutetosuggestneighbors,friends,andfellowchurchgoersorsynagogue-goersforinclusion.Inaddition,tofocusthisstudymoresharply,werecruitedforpositiveresponderstothisquestion:“Areyousufferingnoworhaveyoueversuffered?”Forthisstudyonlyself-nominatedsuffererswereincluded.Afinalgoalinrecruitingrespondentswasdiversityofexperience(inregardtogender,ethnicity,education,religiousaffiliation,goodorpoorhealthassubjectivelydefined,andsocioeconomicstatus)inrelationtosuffering.Thisvariationregardingtheaforementioneddomainswaseasilyaccessedatascreeningcontact.Thus,theoverallrecruitmentaimwastocastaswideanetaspossible,toworkwithinformantstodeveloptheirowndefinitionsofsuffering,andtoengagethebreadthofolderindividuals'meaningsofsuffering.SomeofthecorequestionsweaskedintheinterviewareprovidedintheAppendix.Eligibleandinterestedinformantswereinterviewedeitherattheinformant'shomeor,iftherespondentpreferred,attheofficeofH.Black.Privateinterviewslastedfrom1to3hrinonesession.Sessionsweretape-recordedwiththepermissionoftherespondent.TheyweretranscribedintoaPCtext-baseforanalysis.DataAnalysis Weusednarrativeanalysis,aspecializedformofqualitativeanalysis,asthemethodofanalyzingourdata(Mischler,1986;Polkinghorne,1988;Reissman,1997;Sarbin,1986),asitfollowsBruner's(1990)meaningofhowprotagonistsinterpretlivedexperiences,andPolkinghorne's(1988)assertionthat,innarrative,thepastisreconstructedinlightofthenarrator'spresentworldview,whichinturnisshapedbypastexperiencessuchassuffering.Narrativeanalysiswasappropriateforourstudybecauseitconcernshumanagencyandimaginationandissuitedtostudiesofsubjectivityandtheself.Thismethodrecognizesthat“culturespeaksitselfthroughaparticularactorwithaparticularstory.”Thatis,thenarrator'scurrentcomplexityandcontextcannotbeseparatedfromthestorybeingtold(Gergen&Gergen,1989;Reissman,1997).Narrativeanalysisacknowledgesthatdefinitions,descriptions,andinterpretationsofsufferingarepersonally,culturally,historically,andsociallycontingent.Alivedexperience,suchassuffering,ispreciselysuchbecauseanindividualinterpretedanegativeeventinaparticularwayatasingularpointinplaceandtime(Polkinghorne,1988;Rosenwald&Ochberg,1992).Narrativeanalysishasbeenwidelyusedingerontology(Becker,1997;Gubrium,1993;Kaufman,1986;Myerhoff,1979,1984).Excellentfociforthismethodarethese:topicsthathavebeenscarcelyresearched,subjectsaboutwhichlittleisknown,andexploringthemeaningoflivedexperiences,suchassufferinginageandoutsideofpatienthood.Narrativeanalysisacknowledgesthatnarrativeisbothaculturalandapersonalrepresentationorproductionthatcanbeanalyzedforbothasurfacestructure—whatthenarrativesaysordoesnotsay—andasacontext-dependentstructure,inwhichunderlyingthemesorpatternsemerge.Therearemanyapproachestonarrativeanalysis;theoptionchosenhereisastep-by-stepanalysisofasegmentedparagraphbyonespeakerwithadditionalnarrativeandresponsestopromptsandfollow-upquestionsposedbytheinterviewer.Thisapproachretainstheflow,flavor,andsurfacemeaningsofthestory.Italsopermitsanimmediateparagraph-levelanalysistoorientreaderstoissues(e.g.,thevalueofsuffering)beforethestorymoveson.Theaudiotapesofprivateinterviewsessionsweretranscribedandcheckedforaccuracy.Thenweexaminedthetextsoftheinterviewsinordertolocatematerialsaboutsuffering.Contentconcerningsufferingconsistedoftwocategories:responsestodirectquestionsaboutsufferingandmaterialsaboutsufferingthatoccurredelsewhereintheinterview,notinresponsetodirectquestions.Whensuchmaterialswerelocated,theywerecodedandannotatedastotheircontent(thenatureortypeofsufferingfound).Eachaccountofsufferingwasgivenanidentifier,usuallyakeylinefromthetext.Thenwesortedthematerialsintogeneralthemesofsuffering.Beginningwiththeinitialinterview,wediscussedeachtextastoitsnatureandwhereitmightbelongamongthemes.Thisprocesswentthroughseveraliterationsbeforethefinalthemesofsufferingwerenamed.Inmostcases,thecontext,experience,andmeaningofsufferingwereclearlydescribedbyinformants.Insomecases,forexample,duringanalysisofdataandcreationofthemes,interpretationbytheauthorswasinorder.Theintentionininterpretationistodescribe,explain,andelaboratephenomenaasrelatedbytheinformantandbasedontheentiretranscript(Stake,1995).Itisimportanttonotethatweneverdefinedthetermsufferingforinformants.Wefeltthattoinitiallydefinesufferingmightartificiallyshapeinformantdiscourse.Certainly,thetermhaspersonalandcommunalconnotationsforinformantsandelicitsimagesthatarebothuniqueandculturallyandreligiouslyshared.Ourgoalwastoelicit“folkmodels”or“explanatorymodels”ofsuffering.Inordertoacknowledgetheuniquenessofeachelder'sdefinitionofsuffering,theconceptualframeworkofourresearchwasbasedonamodelofthepersonderivedfromworkinculturalanthropologyandgerontology(Rubinstein,1989,1992).Thismodelseestheolderpersonastheactiveconstructor,interpreter,andcreatorofmeaningofhisorhersmallerworldandfocusesonthepersonalmeaningsystemsofolderpeopleaspartofthelargersystemofculturalandsocialmeaning.THEMESOFSuffering Withinrespondents'narratives,weidentifiedthreeoverarchingthemesofsuffering:(a)sufferingaslackofcontrol;(b)sufferingasloss;and(3)thepersonalvalueofsuffering.Wedescribeeachthemeintheparagraphsthatfollowandciteexamplesthatillustrateitscontent.SufferingasLackofControl Anoverarchingthemeinelders'narrativeswastheirexperienceofsufferingasalackofcontrolovertheself,one'sbody,orthecircumstancesoflife.Thistheme'spervasivenessinelders'narrativesremindsusthatelders'sufferingisexperiencedandexpressedintheculturalcontextofAmericanviewsabouttheself,specificallyagency,activity,andproductivity.Theill,dependent,frail,orgrief-strickenelderoffendstheAmericanconceptionofthepersonasstrong,independent,andcapable—orincontrol.Anadult'sabilitytodirecthisorhercomingsandgoingsandtosatisfyhisorherneedsremainsabenchmarkofmaturity.Sufferingchallengesthemanagementoftheself.Mosteldersconcludethatameasureofhelplessnessanddependencyprecedesdeath,althoughallhopethat,forthem,itwillnot.An85-year-oldAfricanAmericanmandescribedsufferingasthehelplessnesshenowfeelsasaresultoffailinghealth:“Yougoonandonedayyourrealizehowlittlecontrolyouhaveoverlife.Andwhatthatdoes,yousaytoyourself,beforeIgoaway,I'mgoingtogetmybackyardcleanedup.Youknow,besureI'montherighttrackwitheverybodyandeverything.”Becauseherecognizedhow“littlecontrol”hehasoverthemajorissuesoflife,suchasillnessanddeath,hisever-diminishingareaofcontrolnowcircleshis“ownbackyard.”A75-year-oldEuropeanAmericanwomanishomeboundasaresultofseveraldebilitatingillnesses,includingarthritis,diabetes,heartdisease,andulcerativecolitis.Herdoctorsrecentlylabeledherconditionas“terminal.”Despitethislabel,shefeelsthatsheisnolongersuffering.Althoughshecannotchangeherprognosis,shecontrolswhatisleftofherlifebychangingheridentityfromasickpersontoadyingone.Shehastoldherfamilywhatshewantstowearforher“layingout,”andhowhergravestoneshouldbemarked.Shefeelsjoycontemplatinganafterlifeinwhich“everyonewillbeyoungandhealthy.”Unlikethegentlemanjustmentioned,thisrespondentwidenedherareaofcontroltoincludethe“heaven”thatshebelieveswillfollowthislife.A74-year-oldEuropeanAmericanmanadmittedthathissufferingbeganafterhisparentsdied.Thedecisionsheneededtomakeconcerninghislife,suchaschoosingfriends,lookingforajob,andwhetherornottomarryorownahome,overwhelmedhim.Hebelieveshewillsufferuntilhefinds“someonewhowilltell[him]thewaytogo.”Hisinabilitytohandlelife'sdailyproblemsplaceshiminanexistentialliminalspace.Heisbothwaitingforhislifetobeginand,becauseofhisageandfrailhealth,waitingfordeath.Hissufferingincludesthesensethatheislessthana“fullperson”becauseofhisindecision.Hebelieveshehasfallenfarshortoftheculturalmyththatindividuals,especiallymenofhiscohort,whoaredominantanddecisivearemostworthwhile.Laterlifeprovidesavantagepointforelderstocomparethelackofcontroltheyfeeloverthepresentcircumstancesoftheirliveswithagepeersorwithearliertimesinlife.A91-year-oldEuropeanAmericanwidowwhosuffersfromcripplingarthritisbelievesthat“oldageissuffering.”Asaformerhighschoolprincipal,sheenjoyedthesocialandintellectualstimulationofpeersandbelievedthatmeaninginlifewasbasedonachievementandgrowth.Inthelatterstageofherlifeshefeelsbereft;sheisleftwithaselfthatshamesher.Sheadmitsthatshenow“settles”forfriendswhohave“littleeducation”orarenonconversantaboutcurrentevents.Shehas“lost”heryounger,vitalselftoanolderdisabledself.Inhermind,shefallssadlyshortofthequalitiesthatmakeupaworthwhileperson—someonewhocanentertain,teach,travel—andcontrolherowndestiny.A72-year-oldfrailAfricanAmericanwoman,whenaskedwhatapictureofsufferingwouldshow,drewonanimageofsciencefiction.“It'sarobotwithemptyeyes.Andnobodycaresnothingaboutme.It'swanderingaround—arobotwithnoplacetogo.”Indescribingherpicture,shemixespronouns,callingtherobotboth“it”and“me.”Thiswanderingrobotsymbolizesemptiness,loneliness,andthelackofcontrolthatshefeelsatthisstageoflife.Perhapsmostpoignantly,therobotthatisbothherandnotherisawareofitselfasnotreal,inauthentic,andincapableofencounteringselforengagingothers.A70-year-oldEuropeanAmericanmandescribedsufferingastheterrorhefeltwhenhewas13.Theyearbefore,hewassenttolivewithandwatchoverhiselderlygrandparents.Afterhisgrandfatherdied,hisgrandmother“losthermind,”aswellasasenseoftimeandplace.Herecalledthattheelderlywoman“wouldwakemeupat2inthemorningtoeatdinner.”Hisfearlaybothinhisgrandmother's“craziness”andthefactthatgrandmotherandgrandsonbecamestrangerstoeachother.Hiscurrentsituationresonatestothispowerfulmemoryofchaos.Helivesina“changing”communitywhereformerfriendsandbusinesseshaveleftthecity,yethehimselflackstheresources,suchasmoneyandphysicalstrength,tomoveaway.Hisnewnon-English-speakingneighborshave“strange”customsandreligiousbeliefs.Hebelieveshisneighborsdonotlikehim;hecannotregainhisplaceinthe“foreign”countryofhisneighborhood.SufferingasLoss Mostrespondentssaidthattoendurethedeathofacloserelation,especiallyone'schild,isthecapstoneofsuffering.An82-year-oldEuropeanAmericanmanimaginedthat“forparentstostandoverthecoffinoftheirchildbecauseoftheirownnegligence,Ithinkthatwouldberealsuffering(crying).”Becausehereportedhehadneverlostachild,wecanonlywonderwhatrecollectionthispicturerepresentsforhim,orwhatpartofhispsycheitdrawson.Whateverthecase,beingresponsibleforthedeathofadependentotherevoked,formanyelders,aninimitableanguish.A76-year-oldEuropeanAmericanwomansufferedwhenshefinallyacceptedthefactthatherson,bornwithanincurablecongenitaldisease,“wouldnevergetbetter.”Atthatmomentshe“stoppedprayingandgaveuphope.”Althoughshesaidthatshesufferedbecausehersonwasunabletorealizehis“wonderfulpotential,”sherevealedthatsufferingalsoresultedfromherlossoffaith.Shenowlinksherreluctantacceptanceofadisabledsonwithmourningthosespiritualcapacities—faithandhope—thatmighthavehelpedhercopewithhisdisabilities.Tosufferthroughlossisnotonlytoloselovedonesbutalsotolosetherolesthatoneheldinrelationtothem.An81-year-oldAfricanAmericanwidowclaimedthatherprimaryroleinlifewasacaretaker.Astheoldestchildofseven,shetookcareoftheyoungerchildrenwhilehermotherworked.Laterinlife,shenursedhermotherandsiblingsthroughtheirillnessesanddeaths.Whenthe“lastwasgone”shefeltbereftofheridentityaswellasherfamily.Herquestiontoherselfbecame,“WhoamIwithoutotherstocarefor?”Whenaskedwhatapictureofsufferingwouldshow,shenodded,asthoughfamiliarwiththepicture.“Somebodyinpainandsomebodywatching.”Whenaskedwhointhepicturewassuffering,sheanswereddefinitively.“Both,inadifferentway.Oneissufferingpainandtheotherissufferingbecausesomeoneyouloveissuffering.”Becauseoftheheightenedincidenceofchronicandacuteillnessinlaterlife,physicalpainisoftenpartofanelder'sdailylife.Formosteldersinterviewed,however,paininitselfdidnotcausesuffering;theyadmittedthattheycould“take”pain.Rather,theexperienceofpaindarklycoloredtheirselfandworldview.Forthem,thecontingencyofthepainedbodyextendedtolifeitself.Painevokedfearofmortality—thelossofthislifeasweknowit.Eldersalsosufferedthroughtheanticipationofmoreorgreaterpain,throughnotknowingitscause,orthroughtheworrythattheywouldsufferfornoreasonortowardnogoal.Illnessandpainusuallydiminishanelder'ssociallife;personalrelationshipsshrinkandinterpersonalroleslosebalance.Thepersoncannolongerdependonthe“self”asitwas,aselderseloquentlystateintheirinterviews.An88-year-oldEuropeanAmericanwomanwhotraveledextensivelythroughoutherlifedescribesherselfaspresentlysufferingbecause“Ican'tevenwalktothecornerwithoutpain.”Herpainfromheartdiseasereducedherworldanddiminishedherviewofherself.Shebelievedherstatusasaproductivememberofsocietyceasedwiththebodilychangesofoldage.A72-year-oldEuropeanAmericanmandefinedsufferingas“physicalagony.Ihadthisaneurysmandtheystapledmeup.AndtheysentmehometooearlyandIstartedspurtingfromtheguts.”Hisnarrativerevealedthatimportantgenderroles,suchashusband,father,andworker,wereaffectedbyhispain,andsoshapedhisdefinitionofsufferingasaninabilitytobeproductiveonboththeworkandhomefronts.A78-year-oldAfricanAmericanwomanwhorecentlysurvivedagruelingdoublemastectomydefinedsufferingthisway:“Ihadterriblepainsandburnsfromtheradiation.Wheremybreastswerejustraw.”Forher,sufferingwasthephysicalpainthatresultedfromthe“cure”oflosingherbreastsandfromradiationtreatments.Whenshefirstlearnedshehadcancer,sheurgedherfamilyto“keepitquiet”becauseoftheshamesheattachedtoit.Herembarrassmentaboutcancerandthemastectomy,andignoranceaboutitsprevalence,becameadimensionofthediseasethataddedtohersuffering.Theimpendinglossofselfthroughdyinganddeathproducedaparticulartypeofsufferingforelders.Mostrespondentsgaveshortresponsestoquestionsconcerningsufferingbeforedeath.Manyelderssaidthattheyseldomthoughtaboutthissubject.Mostaddedthattheyhoped“togoquickly.”A78-year-oldEuropeanAmericanmanexpressedhimselfsuccinctly.“Dyingissufferingbecauseyou'resickandyou'rehelpless,butdeathisjustdeath.It'sthefinish.”Thiselderbelievesthattheillnessanddependencythatprecededyingareaformofsuffering.Inotherwords,twothemes—lackofcontrolandloss—arecombinedinhisthoughtsaboutsufferingbeforedeath.An82-year-oldEuropeanAmericanwomaninterpretedsufferingbeforedeathasasummonstotakefinalcontroloverherlife.“Iguessyoushouldhavethatfeelingthatyou'regoingtodiesoyoucansaywhatyoucananddowhatyoucan,likepaybillsandtellthefamilywhereeverythingisbeforeyougo.”Forher,sufferingbeforedeathisnecessary;itmotivateshertoactivelyandconcretelyprepareforleavingthisworld.Conversely,an84-year-oldAfricanAmericanwomandescribedtheanxietyattackssheexperiencesassufferingbecauseshefeltthattheyprecipitateddeath.“Whenthey[anxietyattacks]comeon,youthinkyou'redying.Yourheartisbeatingrealfast;yougetsweaty.Youfeellikeyou'releavinghere.”Herfearofdeathdidnotmotivatehertopreparefordeath.Rather,thesensethatdeathwasimminentparalyzedher.Metaphorsweresometimesusedtodescribefeelingsaboutoneselfinthefaceofdeath.Thesemetaphors,whichwereuniquetoeachelder'scircumstances,seemedtoactasabridgeintheirnarratives.Metaphorsallowedaflowofthoughtstogobackandforthbetweendiscussionoflifeanddeath.An82-year-oldEuropeanAmericanwomanconfidedthat“IfeellikeI'memptyinside,likeI'malreadydead.IfeellikeI'mjustashellofaperson.”Onafollow-upcall,thisrespondentfeltmuchbetter.Shehadbeentakentothehospitalafterafaintingspell.There,shelearnedthatshewasbleedinginternallyasaresultofastomachlesionandwasgivenseveralbloodtransfusions.Thewisdomofherbodyprovidedametaphor—thatshewas“likeashell”—thatbothheraldeddeathandcausedhertostaunchthelossofherlife'sblood.ThePersonalValueofSuffering Definingandinterpretingtheexperienceofsufferingisbasedon,amongotherthings,individualsensibilities,amodelofhowtheworldworks,whatsufferingmeans,ifanything,andhoweldersevaluateit.Whenaskedifshehadeversuffered,an80-year-oldEuropeanAmericanwomanansweredinthisway:“ThemostI'msufferingisrightnowbecauseIgetallthismedicine,butIdon'tgetanyhelp.Ifeellikeeverythingthat'sgoingoninhere[pointstohead]iswoozy.Butwhatisit?Oneofthedoctorssaid,‘Whatdoyouexpect?You’re80.’”Theunknownrootofhersufferingcombinedwithherdoctor'spaternalisticindifferencemakeherfeellikeafoolishhypochondriac.Becauseshedoesnotknowthecauseorcourseofherphantomillness,sheisunabletoattachmeaning,purpose,orvaluetoit.Thefactthatsomeelderscouldnotevaluatetheirgrief,pain,anguish,orfearofdeathitselfbecametheexperienceofsuffering.Theserespondents,however,werenotthe“norm”inoursmallsample.Mosteldersstruggledtocreateordiscovermeaningforsufferingandthusdetermineitsvalueintheirlives.Forsome,religioustraditionsprovidedaguidelinetoevaluatesuffering.Formanybelievingelders,sufferingasareligiousmysteryistwopronged:Itprovidesamodelthatsayssufferingisinherentlyvaluable,anditprovokesdoubtsaboutthereligioustruthsofsuffering.An80-year-oldEuropeanAmericanmanlosthisonlysonmorethan10yearsearlierinacaraccident.Althoughhelivesin“constantpain”fromseveraldebilitatingillnesses,losinghissonwasandremainsthe“greatestsuffering.”Whenaskedwhatapictureofsufferingwouldshow,heansweredwithouthesitation,“Christonthecross.Thatsaysitall.”BecauseheperceivedacrucifiedChristasamodelofsufferingaswellasthebenefactorofeternallife,sufferingoffersinestimablevalueandaninherentpromiseofitsend.Conversely,a73-year-oldEuropeanAmericanmandoubtedthereligioustruthshisparentstaughthim.“Myparentswouldn'tlikethethingsthatIthinknow.IreaddifferentthingslikemaybeallthosethingsintheBible,likeanafterlife,[are]afairytale.MaybeHellisrightinthislife;it'srighthere,rightnow.”Duringhisinterview,thiselderdescribedhimselfas“likethatoldsongsays:scaredoflivingandafraidofdying.”DoubtsaboutajoyfulHeaven,yetfearingtheHellhisparentspreachedabout,combinedwithincipientphysicalproblems,resultinapurposelessandworthlesssuffering.An81-year-oldAfricanAmericanmandescribessufferingasatorturouslackofself-knowledge.“Whenyouthinkthatyouaresomethingthatyouarenotandwhenyoufindoutthatyouarenotwhatyouthinkyouare,thenyoureallycrawlintothegrave!Andthat'stosufferspiritually.”Headmitsthatheexperiencedthistypeofsufferingduringarecentperiodofbeing“lost”tohimselfandtoGodthroughalcoholism.Becausehewas“soself-absorbed”hefeltunabletochartaroutebacktoself-understanding.Elderssometimesrevealedwhattheirreligiontaughtaboutsufferingandhowtheyinternalizedthoseteachings.Manyelderssawvalueinsufferinginlightofapersonallyconstructed,spiritualinterpretationofthesufferingincidentratherthanthroughtheirreligion'straditionaldoctrine.Respondentscreatedanindividualtheodicythatabsorbedpersonalsufferingandkeptthesanctityoftheirbeliefs,whatevertheywere,intact.Forexample,mostreligiousbelieversinthestudythought“Godhasnothingtodowithsuffering.”Sufferingwasa“human”creation;itwasGodwhocomfortedthem,sufferedalongwiththem,orledthemthroughoroutoftheexperiencewithspiritualgifts,suchascompassionorfortitudeaccruedthroughsuffering.DifferencesAmongSuffering,Sadness,andDepression Agroupofquestionsinourinterviewscheduleaskedrespondentstodifferentiateamongdepression,sadness,andsuffering.An83-year-oldEuropeanAmericanwomandescribeddepressionas“whenyou'redowninyourself,it'sfromsomethingthatyouhavedone;it'sallyou.”Thesamerespondentdescribedsadnessas“whenIlostmysister,”andsufferingas“somethingthatcomesonyou.Youcan'thelpit.”Herinternal–externaldistinctionbetweendepressionandsufferingwascommoninoursample.Sufferingbecameanoutsideenemythathadsomehowgainedentranceinsideanelder.A75-year-oldAfricanAmericanwomanwhorevealedthatshehadbeen“bornpoor”andremainedthatwaythroughlifedefinedsufferinginthisway:“Beinginwant—that'ssuffering.Thingsthatyoureallyneedtosurviveandyoudon'thave.”Toher,sadnesswas“losingmyjobatage60.”Shedescribeddepressionas“notabletogetupoutofyourself,youcan'tgetoutofyoursufferingoryourbeingsad.”Forhertheconstructsofdepression,sadness,andsufferingweredistinctbutinterdependent.Eachelderinoursampleuniquelydefinedsuffering,sadness,anddepressionandrootedhisorherdefinitionsinthecontextofthejoysandsorrows,triumphsandstrugglesofalifetime.A74-year-oldEuropeanAmericanmanrevealedthathecontinuesalifelongbattlewithalcoholism.Hedescribedsufferingas“theweaknessIfeelwhenIcan'tpassaliquorstorewithoutgoingin.”Hedefinedhisdepressionas“aninabilitytogetstartedortofinishthings.”Sadnesswastheemotionhefeltwhenhis“long-timecompanion,”hispetdog,died.SufferingasTransformative Manyeldersexperiencedsufferingastransformative.Eldersproposedthatsufferingwasaneventorstateofbeingthatalteredtheirself-viewandworldviewinafundamentalway.An82-year-oldEuropeanAmericanmandividedhislifeintobeforeandafterhiswife'sbrainseizure,whichleftherwithoutshort-termmemory.Becausehebelievesthathiswifelostheridentityalongwithhermemory,hefeelsthat“forallintentsandpurposes,sheisdead.”Hispresentcircumstanceseemstoparallelhiswife'sliminalstate—sheisbetwixtandbetweenlifeanddeathandheisbetwixtandbetweenknowing“where”hiswifeis.Becausehisprayeristhatshewillpredeceasehim,hissufferinghasbecomearaceagainsttime.Headmitsthathisthoughtshave“changed”sincehiswife'sseizure.Hethinksofthingsheseldomconsidered,suchas“lifeeverlasting.”Hefeelspushedintoanotherrealmofconsciousness—wherethingsunseenandunproventoexistareimportantsubjectsforwonderandstudy.An80-year-oldfrailAfricanAmericanmancannotleavehisapartmentwithoutassistance.Hedescribedsufferingasan“inabilitytobeactive,”andthenheadded,“butyouonlysuffersomuchuntilyoujustgiveup.See,youhurtyourselfbynotgivingup.”Becauseheacceptshisdependence,heviewshimselfasapersonwhocontinuestohavechoices,howeverlimited,andthereforeretainsasenseofcontroloverhissituation.Wereturntothe76-year-oldEuropeanAmericanwomanwhorealizedoneeveningthatherinfantson“wouldnevergetbetter”despiteherdesperatepleastoGod.Shedescribedherselfas“currentlysuffering”becauseshebelievesshewillsoondie.Althoughnodoctorhastoldherthatdeathisimminent,shefeelsitsnearness.Shedescribedhersufferingthisway:“Sufferingisaconstantsearchforsolutions.It'spositive.Imeaneventhoughithurtsalot,you'realwaysbusyaskingquestions.”Shehighlightedtheeventsofsufferinginherlife,suchasthebirthofhersonandherownillness,notonlyasbridgesfromonewayoflifetoanotherbutalsoasbridgesfrombeingonepersontobecominganother.Theywerewatershedevents;theworld,quiteliterally,wouldneverlookthesameasithadbeforetheyoccurred.Forourrespondents,sufferingasalackofcontrolwastransformedintoacceptanceofasmallersphereofpersonalcontrolorhumility.Sufferingaslosswastransformedintocompassionforothers'losses,oranawarenessofthefragilityoflife.Tofindvalueinsuffering,someinformantstransformedseeminglypurposelesssufferingintoanadmissionthattheremaybeaspiritualornonmaterialaspectofthemselvesthatneedsacknowledgmentornurturance.Discussion Thisvastareaofexperience—sufferinginoldage—remainslargelyunexplored.Eldersrevealedthattheyhadnotsharedtheirexperienceswithhealthprofessionalsorclergypersonsbecausetheydescribedsufferingasmorethanmental,physical,orspiritualpain,ashavinganexistentialqualitythatisrootedinbeinghuman,andbecausetheywerenotasked.Interestingly,thefearofone'slifestorynotbeingheard,especiallyattheendoflife,maybepartoftheexperienceofsuffering(Picard,1991).Inthisresearch,eldersseemedpleasedtobeaskedtodisclosetheirlifestoriesandstoriesofsufferingtotheintimatestranger—theinterviewer—inthepersonalyetprofessionalforumoftheinterview.Onthebasisofourinformants'experiencesandexpressionsofsuffering,weofferourowndefinitionofsufferingasavisceralawarenessoftheself'svulnerabilitytobebrokenordiminishedatanytimeandinmanyways.Thisdefinitiondrawsontheinclusivedefinitionsofsufferingmentionedearlierinthisarticleandalsospeakstokeyexperientialaspectsofsufferingthatrespondentsreported.First,partoftheimmeasurableandparadoxicalnatureofsufferingisthat,asanexperience,itisbothboundedandunbounded.Informantsdescribedtheexperienceofsufferingasbothspatiallyandtemporallyboundedyetcompletelyboundlessinregardtotermorinsult.Boththeenvelopingnatureoftheexperience,whichcouldanddidleadtouncertaintyaboutifandwhenitwouldend,yokedtogethertwonormallyincompatibleexperientialmeasurements,closureandopenness.Theoutcomecouldbeadizzyingsenseofunrealityandforcedaquestion:“Whenwillthisend?”Sufferinginagechallengesthecontentandintegrityofthefutureself.Second,forsomeinformantsasenseofunrealitywasprofound.Becauseofit,theyexistedinasocial,psychological,andexperientialliminalstate.Theperiodofpresent-daytimewasfocusedonintently,yetitdidnotfollowthekindof“time”passedinpresufferinglife.Inotherwords,timeflewordragged.Thissenseofunrealityalsoledtoanexistentialstateofbothlivingandwatchingoneselfgothroughthemotionsoflife,anditforcedanotherquestion:“Towhomisthishappening?”Thechangesthatsufferingbroughttobearonelders'bodies,roles,identities,andworldviewoftencarriedanacutesenseofalienation.Third,theexperienceofsufferingismorethanthesumofitsparts.Thesufferingperiod,throughitsstrangenessfromorsimilaritiestoprevioustimesinlife,relatedtootherbiographicevents.Eldersinterpretedsufferingasalieninlightofhowtheyviewedanddefinedthemselvesbeforesufferingbegan.Sufferingnotonlyheraldedaneedtoreevaluatetheselfbutalsotofindawaytoreintegratetheself.Reevaluationandreintegrationwereaccomplishedbymaintaining,somehow,therolesthatgavemeaningtoidentity,byassuminganewidentitythatisinchoateandbreathinglifeintoit,andbytellingastoryaboutitintheforumoftheinterview.Despitesuffering'sstrangenessorinterruptiontothelifelived,thesufferingstorygenerallyreflectedthelifestoryasawhole.Weconclude,becauseofelders'interpretationsoftheirownsufferingandthekeyexperientialaspectstheyreported,thatsufferinginolderageisdistinctinqualityandmeaning.Thisdistinctivenessresidesinelders'perceptionsthattheiruniquevoiceswillsoonbesilent,theirplaceinthisworldwillsoonbevacant,andtheirindividualandcohorthistoryiscomingtoanend.Aseldersperceiveadiminishmentofstrength,cognition,andusefulness,thereisconstantawarenessthattimeisrunningout;findingmeaninginsuffering,andinlife,hasaparticularurgency.Insum,issuesofsufferingareultimatelyissuesofidentity—thoseofselfandimportantothers—inthefaceoffinitude.Perhapssimilartothoseofthegravelyill,elders'hopesforthislifearecondensedintothesmalltriumphsofeveryday,suchas“wakingupeachmorning”or“walkingablockortwo.”Inotherwords,hoperestsonthediminutionandarduousnessofdailylife.Appendix PartialQuestionnaire Wouldyoutellmethestoryofyourlife?Startwhereyoulikeandtakeasmuchtimeasyouneed.Wouldyoudescribeaneventorperiodinyourlifewhenyoufeltthatyouweresuffering?Whathappened?Howwasitresolved?Howwouldyoudefinesuffering?Ifyouweregoingtodrawapictureofsuffering,whatwoulditshow?Howdoyourpastsufferingsinfluencethepresentqualityofyourlife?Doyouthinksufferingisa“normal”partoflife?A“normal”partofgrowingolder?Doyousufferwhenyouexperiencecertainfeelings,suchasregret,remorse,orguiltoverthingsthatyoudidordidnotdoinyourlife?Whatdoyouthinkisthepurposeofyoursuffering?Whatdoesyourreligionsayaboutsuffering?WhydoyouthinkGodallowsustosuffer?Doyouthinkthatbeingolderandclosertotheendoflifeisaformofsuffering?Doyouthinkolderpeoplesuffermorethanyoungerpeople?Doyoueverthinkaboutsufferinginrelationtodying?Whatdoyouthinkhappensafterwedie?Doyouthinkwestillmightsufferthen?Canyouthinkofanyone—aparticularpersonoragroup—whohassufferedforacause?Istheresuchathingasquietorsilentsuffering,orissufferingalwaysexpressedinsomewaythroughwordsorcriesorgestures?DecisionEditor:CharlesF.Longino,Jr.,PhDWegiveourheartfeltthankstothemenandwomenwhosharedtheirlifestoriesandstoriesofsuffering.Thisresearchwassupported(inpart)bytheFetzerInstitute.References 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