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6/1/1998 - The Last Year with Mom by Marc Michaelson

The LastYearwithMom June ByMarcMichaelson OnMay mymomwasdiagnosedwithlungcancer Exactlyone later onMay19th welaidher Thetwelvemonthsinbetween werethemostwrenchingandpainfulinmylife Myfamilysharedtimes ofgreat sorrowandsadness butalsomutedcelebrations chancestorememberhowlucky vebeen Whenit started Iwasontop oftheworld IhadmoveddowntoWashing D C littleAddisAbaba tolearnAmharicinpreparationformyICWA fellowship Iwaslivinginacozy littlebasementapartment bikingmyway aroundtown meetinginterestingEthiophiles generally enjoying springin nation capital Onthatwarm sunnyMonday Iwentthroughmyusualmorningroutine coffee neighborhoodjava joint practicing conjugationsbe foremeetingmyAmharicinstructorProfessorHailu Afterclass IreadthePost perusedthe internet forAbyssinianhistory materials anddarted offforanafter noonbikeridethroughRockCreekPark Thatevening Ihadawonderful first sunset Potomac bright lights Georgetown Harborareaglimmeringoffthegentlyripplingwater Romancewasinthe airand allwaswell untilIgothomejustaftermidnightandlistenedtomyanswering machinemessages HiMarc sJulie Therewasalongpause Justhearingthetoneofmy sister voice myheartsankintomystomach Momhadaseizuretodayandisinthehospital They redoingtests doesn tlookgood DadandI hospital callbacksoon giveyou details Awaveofnauseasweptoverme Myhandtrembledas Iheldthephone knowingwhoto whatto Iwasn talivewhenJ F K wasshot butIremem berMay19th 1997vividly justasmanyAmericansdoNovember22nd I knowwhatit feels likewhentheskyfallsandthegroundcrumblesbeneathyour Thatnightmyworldwasrocked mylifechanged forever Iregainedmycomposure calledtheairlinesandbookedaseatonthe first flightoutofNationalAirportthenextmorning Ispokewithmymomat2 SheknewI dbeawake worrying countingtheminutesuntilmyflight Shecalled becauseshewantedtohearmyv andbecausehermotherlyinstincts werestillworkingovertime inherdarkesthour Shewantedtocomfcn Shesoundedtiredbut otherwise perfectly sense ofhumorwas miraculously stillsharp Marc shesaid Ifyouhearthephonedrop floor I having seizure I Afamilyportrait inhappiertimes meflankedbymy fatherPaul motherMarilyn sister Julie minute Ilaughedandthenwecriedtogether Overthenextfewdaysmymomwasputthroughan arrayoftests scans needlebiopsies Eachresult presentednewshocksandhorrors Itwasmind gling The daybefore seizure myparents returned hometoConnecticutfroma10 dayvacationinSavannah Charleston Momhad dragged around squaresand oldmansions ofSavannah golden trieverpullingitsbest friendtowardacolonyofdancing squirrels One healthy energetic without symptomtospeakof Thenextdayshewasinformedthat herbodywasriddledwith cancer Thiswasnotjustone Stage IV adenocarcinoma probably originating lungwith metastases brain renalgland andpossibly liver TheDoctorsaskedifmymomwasasmoker Yes hadbeen buthadquit23yearsprior Weaskedoneofthe doctors smoking related cancer She dodgedthequestion Itwasclearthatshedidn tknow Afterallthetestsandtheircrushingfindings thedoc torscameinto discusstreatmentoptions Theywereup optimisticandfullofhope We dlike approach aggressively possible first radiation chemotherapy Of course Marilyn familywillalwaysmakethefinaldecisiononwhichtreat MM mentstopursueandwhichto forego Noonementionedthewordcure andwe allwon deredaboutthe prognosis butdreadedtheresponse So forquitesometime noone asked Asone close friendof death elephant sitting Everyone carefully tiptoes around andnoonedarestalkaboutit Everyone dealswithpersonalgriefandadversitydif ferentl andweneverknowhowwewillrespond until ithappensto We allhave differentcopingmecha nisms allhandleour stress emotions andgriefin differentways Itendtothinkthingsthrough intellectualize lookfor solutionsandresponses As asmymornwas nosed I internet vengeance searching cancer relatedweb sites Icould looking tions alternative treatments trials anything thatcouldhelpmymom Ispentuntoldhoursandsleep lessnightsinafrenziedsearchforhope Iwasobsessed possessed I something I couldn Ifwecanclonesheep Ifiguredwemustbeableto savemymorn Myfather fromwhomIinheritedthe sortofobses sivebehaviorthatkeptmegluedfornightsontheworld wideweb wasinshock Hewantedtomake suremy momhadthebest doctorsandcare available Ouroncolo Hartford Hospital seemed extremely competent andknowledgeable surelythegooddoctorsatSloan KetteringinNewYorkandDana FarberinBostonwould havethemostcutting edgetreatmentprotocols available Everthesalesman myfathermanagedto finagleourway second opinionconsultationswiththeheadsoftho racic oncology ofthese eminent institutions Butthesomberrealitywouldn tchange Neitherofthese doctorshadanymiraclestocureourfamily snightmare Once Irealizedtherewasn tanymiraclecure Itook refuge intheworksofDr BernieSiegelwhoencourages cancer patients focus healing their lives their bodies sometimes follow His anecdotes ofspontaneous remissions connections holistic treat ments gaveme As workof former Institute Fellow Dr Andrew Well considers invasive conventional treatments radiation motherapy archaic ineffective bleedings performed century Hebelieves immunotherapyandothertreatments stimulate naturalhealingresponseshold greatesthope forthe future Ilearned great tomuchconsequence Ibecamefrustratedandangrnotsomuchatthedisease mymom srespons etoit Placingallofherfaithinherprimary oncologist immediatelybegan series radiation andchemotreatments Herdoctorswerecom passionate competent their treatments stage IV cancers haven tprovenvery successful Themedian expectancy patients condition months survival percent Curinglungcancerwiththe currentmethodsofche motherapy isliketryingto fixaBMWenginewitha sledgehammer I despised chemotherapy wrote ragingpoemtoventsomeofthatanger Iwantedmom pursue alternative treatments special diets medita Sheneverboughtintoit shewantedher oncologist Shewas passive participant hertreatment Sheneverresearchedher disease looked anything listened oncological deity andawaiteddeliverance Ibecameextremelyfrustrated Ihadboutsofdepression theworst ofwhichimmo bilizedme lyinginbedfor36 hours exhaustedandun ableto function Forthe firsttimeinmylife Isought counsel ingwithapsychotherapist Wedidn itoff realwelland Iendedup gettingmostofmysupport frommysisterandmyclose friends someofwhomhad recently parents similar diseases Ultimately angerfadedintoresignation itwasmymom sdisease however could And I cametoacceptmyrole tosupportherandloveher unconditionallythroughherfinalmonthsjustasshehad duringmyfirstmonths IwasduetoleaveforAddis AbabainAugust butdecidedto delaymyICWAfellow close tohome Mysister firstrespondedwithshockandoutburstsof spontaneousemotion We allhadsuchmoments theywouldsneakuponus atrandomtimes Astime passed andthe realityofmom smortality settled Juliecameintoherown Shehadalwaysbeenthebabyof family thisnewreality catapulted level maturity Julie often withmom reading daily cards holding herhand comforting Julie sowncaregiving personality ofwhich wasnurturedbymymother truly shined Juliehasalwaysbeenacaringp erson butitwaswon derfultowatchhermatureandgrowsoimmenselydur She inner strength personal compass pulled throughsomeoftheroughermomentsofmymom ingprocess Mymomhadittheworst Afterall itwasherdisease andtheharshrealitiesofmortalitypresseduponhermost urgently She immediatelybegan mourn grieve sinking initial depression monthstoovercome Everydayshereceivedalarge stack ofcardsfromfriends familyandcolleagues encourag ingherto fight begginghertowinherbattlewithcancer Momhad worked senior citizen programs years people touched responded Somuch ofthe caring andcompassionmymornhadshoweredonallofuswas being sentbackto Friends meals flowers chocolate Mymornwas hopeless chocoholic I prescribed daily Ghirardelli intakes accompanythe plethoraofmedications Friendscameto visit theycalled onthephone theypra yedforherrecoveryinlocalsyna goguesanddistantmidwestchurches Forallofheradult lifemymornhadbeena caregiver mother teacher senior citizenworker andcommu The Wall Cards Julie taped ofmom cards livingroom serve reminder ofall loveandgood wishes coming Institute CurrentWorld Affairs activist Herenergyandlovewasalwaysdirected outward Shegavegavegave Now herbodyhad belled Itwastimetoreceive forthelastyearofherlife allofuswouldcare The family lived cancerwas roughestofourlives itwasn twithout giftsand silver linings Life isalways short agradualter minalillnessisadouble edged swordwake upcall The endgameisunavoidable death willcome Butknowing thatinadvancegaveusthetimeto sharesomefinalgood qualitytimestogether tieupsomelooseends andsay whatneededtobe Anditgaveusthechanceto somemeaninginour sadness The prospect losing anchor ofour household broughtther estofourfamilytogether Itshowedme sidesofmysisterandfather Ineverknewexisted The depth ofmyfather andhis determination formymother remarkable Being retired devoted allofhistimeandenergytomom Julieand I encouraged house focus other activitieseverynowandthen buthejustwasn interested Hewanted spend everymomentwithmy savoringandholdingontotheloveofhis lifefor aslong possible Recently I vecometo realizehowwell Iknewmy momandhowlittle Iknewmydad Growingup wasalwaysathome whiledadwasworkinghard build inghisbusinesstoprovide forthe family Momwasalso social outgoing expressive their Asanadult whenI calledhomeorvisited thevast majorityofmycommunicationwaswithmorn Herpass forced Julie andmeto strengthen ourown relationships I mlearningaboutmyfather sbegun toopenupandsharemoreofhimselfwithme I mtrying todothesame Mysister JulieandIhave alsogrowncloser sharing ourpainandfru strations Noone elsecouldunderstand exactlywhatwewere going through Wetalked often andbonded innewways Some emanated ournewroles caregivers Badnews doctors understandablythrewourparentsintoanemotionaltail Julieand Ioftenhadtoremainstrong listentothe doctors andguidemedicaldecisions Wetriedtobeposi totrytoliftthemoutoftheseemotionalruts Ifelta great ofpressureonme likebarbells restingonmy Mybodyoftenachedwithstressandtension often still JulieandIsometimeswentoutforadrink tovent toeachother talkaboutwhat sbeenhappening anden joytherelaxingqualitiesofthealcohol Itwasimportant tobothofusthatwe bethere withandformyparents itwasalsoextremelytoughtobethere Livingfull timewith evenwhenshestillhadallofhercapacities wasphysi callyandemotionallyexhausting Itwaslike living outside MM under stars fully exposed elements I never knewiftomorrowwouldbesunnyoriflightningwould strike Everydaywewokeupwithuncertainty I twasan extremelyunsettling vulnerable feeling Mymomwasthe greatest Soundslikea clich6 Iknow Imighthavelastwritten suchsimple praise starry eyed3rdgrader Parentalgreatnessisnowlargelydevoid ofmeaning triteandcommercializedonMother sDaycards coffeecupsandt shirts It seasytobuyamass produced cutesie little plaque China course Or green someFather Day golfballsengravedforthe Greatest DadintheWorld So simple So meaningless Thequalitiesofgreatparentingaretreasures sought rarely found Today economic reali great parenting difficult asboth parents often forced towork provide perceived necessities middle class Children bounced around those stable littleredsuperballsweusedtoplaywith bounce launches child different direction daycare after schoolprogram grandma house orhome alone latchkey W parents often haustedto helpwiththehomeworkor sitandtalkabout thedayat school Somanyparentsarechainedtothiseco nomic treadmill constantly struggling They their children dearly amount ofenergy spend their painfully small What other factors preclude parental greatness There scores ofparents outtherewiththeirownper sonalproblems andthese ofteninterferewiththeirown parenting There parents themselves abused mistreated children emotional scarsandneedsoftheirown Thereareparentsfrombro kenhomes despitethebest intentions haven capacities exceptional childcare Manyparents themselvestrappedinbadmarriages oftenremainingin lousyrelationships forthe ofthe Andthenthereistheall Americanscourgeofdivorce Approximately allmarriages countryend divorce Fractured families become about American baseball roubled national pastime Commuter children spend weekdays withmomand weekendswith The place forkids toplayandfeedpigeonshasbecomeaneutralgroundfor handingthemofffromone parent another There areparentswhocontroltheirchildrenforava riety ofreasons Theymayhave failed accomplish certain stature position vicariously through their children Or maybe filled loveand personal pride their children They steer manipulate their prestigious coated affixes proper initials behind preferably J D M D M B A pursues status career corresponding hefty mention luxury sedan house Such parents their leaving nothing chance cided everything their power their Noonehastouchedme influ encedme inspiredme supported andlovedmeaswhollyasmy Atthetimeofmybirth bright young elementary schoolteacherandsheputher reeronthebackburnertobethere loveandcaring shemadeeachofus special MomgaveJulieandmemany gifts shetaughtus compassionandsheraiseduswithastrongsenseofright andwrong Sheanddadhadanexcellentmarriage thatgrew deepened through years And shewasawonderfulfriendtomeasanadult I wayslookeduptoherandviewedherlifeasanexample But greatest giftmymom unfet tered strings attached When I joined Peace Corps headed Africa manyofourfriendsandrelatives quick question criti But thatwasnothowmy mornreacted Shewasmorethan littlenervousaboutherbaby going Africa portedmeanyway Shehad fidenceinme sheletmemake decisions percent comfort She myown person encouragement She packed Julie I school there waiting Morngives April Shewasproudofme whatI wasdoing nomatter uswhenwecamehome Mother ingwasafull timejobwithnosal My unconditional invaluable support enabled benefits Shetookpridein raising mature pursue spent passions She energy nurturing young minds bodies We studyat college orpur career anything mother could always madesacrifices because wanted She loved I never She That greatest lovedusandgave selflesslessly mother child Andfor I eternally grateful Myintentionhere aggerate oridealize mymotheror childhood There tainly tough times family conflicts worst which The wrenching I think uually In March condition rectlyinvolvedme Myfatherwas ruthlessly competitivewithmeas Me Julie poolside Florida theworse Shecomplainedofter rible andbackpain relationship severelystrainedformanyyears AndIwastheperpetra torinahurtfulrelationshipwithmysister inwhichI mentedherterriblyasa child Allwas certainlynot perfectinourhousehold andweare stillworkingonre buildingandhealingsomeofthe fractured However throughit mymotherwasthegluethat heldus alltogether Herrelationshipswitheachofus gaveusfeelings ofself worth Shetried oftenunsuccess fully healthesehousehold rifts Butthroughherown tests showed cancer spinalcolumn IhadbegunmyfellowshipinEthiopiain January andhadbeen talking tomyfolks onthephone atleastonceaweek Theprognosiswas stilluncertain oncologist began about hospice It tocomehome WhenI rived Iwaspositively surprised Mymorn thrilled looked great seemedto havemoreenergyand greater determination fully possible possible The Institute CurrentWorld Affairs Mornand dancingduringa drummingceremony Kandonku village myPeace Corps The Gambia December triage medicationshad greatly helped knocked They however goingtoNewYorkfortheBigEastbasketballtournament herbelovedUCONNHuskies Nor herfrom lunchingwith friends orgoing themoviesandclassicalconcerts Duringthe lasttwomonths wehadsomeverygood quality together Wehad chance reminisce aboutfunandfunnytimesandto talkaboutseriousfam ilyissues Wediscussedourfeelingsandfearsandsome timeswejust sattogether silently holdinghands We enjoyed sushi together ElizabethPark favor itelocaloutdoorspot andintermittentlydozedandridi culed local produc ofPorgy Bess Morn gettingweaker especiallyherlegs butherzestfor mainedstrong Butthoselasttwomonthswerealsovery difficult Ibeganto feelmoredistant andhadtroubletalking withmornattimes Thismayhavebeen protec tionmechanism Iwasseparatingandpreparingfor passing Workingwith hospice socialworker wetriedtobroachsome difficultfamilyissues mixed success We allhadthechance toexpressour thoughts emotions feelings alongtheway Oneofthegreatestlosses Ifeelisthatmyfuture spouseandchildren shouldIhavethem andIhopeI never knowmymother WhenIlookintothe future andlifewithoutmorn theabsenceofmyunconceived children sgrandmaisthe mostpainful Julieand Iaskedmorn ifwecoulddoa video interview future mates could small She agreed wasveryhardforher Wewere ableonlytoget throughthe firstthreequestions often despiteher gilityandreluctanc hrwarmthandsense ofhumorstill shinedthrough At beginning May bottom MM health crashed Shebegan occasion gazingglassy eyedintothedistance Itappearedthat shewasbeginninghertransition crossing forbriefperi another place She talked about deceased therasifshe djustseenhim andsaidshedidn tlivehere shehadtogohome Shewasclearlyexperiencinganother world shehad peaceful smile during thetimesshewasawakebutnot fullypresent Shegradu allystoppeddrinkingandeating except smallamounts oficecreamandginger In lessthantwoweeks shewent fully alertand functionalintoasemi Shehadsummoned allof energy final events circumcision celebration friend sbabyboyandtheweddingofa family friend Afterthat shebeganto losehercapacities rapid succession With visiting hospice nursesandaids wecaredformorn athome Whenshe could longer medications ghtherto specialunit ofthe hospital Herfinal dayswere spent atthe Palliative CareUnit Hartford Hospital lovely peaceful caring place wheretheterminallyillandtheirfamiliescanspendfinal moments together The physical dying process scary deeply unsettling thewonderful nursesonthis unithelpedus allthroughit Theytreatedmymornwith dignity deserved cared survi vorswith equalcompassion Wesatbymom heldherhand andspoketoher At first shewouldturntouswhenwetalkedtoher hecould hearus butitwasn tdearifshecouldunderstandwhatwe weresaying Towardtheend shewasgenerallyunresponsive andyetIknowshesensedourpresence During final three turns sleepingon couch Mynightwas Tues andIhardly slept awink Mornslept peacefully MornholdingBrad thesonofaclosefriend thedayof circumcision April breathingsoft ButwhenIlooked andherfundamentalgoodness overather Ididn tseemymom allreturned Ismil edandthen deathhaddisfiguredherbody criedlikeababy Allofthebless shelooked100yearsold Her ingsofhavingatrulygreatmorn bodywasshuttingdown andthepainofherlosshitme believehersoulhadalready likeatidalwave movedon The night depressed Some tried console disturbed sight tragedy shadow person sloss hadbeen I hospital rummaged through shelf packed Mymom ended early butthis storyis notragedy Trag photo albums I wastransported opportunity missed backto Israel whereweclimbed unlived Tragedy doesn andwadedin Ein Geditogether mymom never missed years andto Sri Lankain anopportunity She spreadmore And between accomplished holidays trips telephone community touched conversations people years experiences anddeep friendship people could years She weshared hadfun lived fully I walked around Mymomwasagreatwoman housewe dlived She extremely caring years remembering special timesin different rooms dinner conversations kitchen I Morn andJulie wading under thefalls Ein Gedi Israel focused energy talent outwards showering onall ofuswhowereblessedto table partiesonthepatiointheback readingthecomics knowher Ihadonly30yearswithmymom inmomanddad sbedonaSundaymorning wouldn ttradethatfor60yearswithanother AsIlookedatmymominthesepicturesandthese Mom Iloveyou Iwillmissyouterribly butyouwill memories hersmilingface herwarmth hercompassion bewithmealways Withourtourguidein teacounty nearNuwara Eliya SriLanka December1996 Institute CurrentWorldAffairs Institute CurrentWorld Affairs FOURWESTWHEELOCKSTREET HANOVER NEWHAMPSHIRE 03755 ADDRESSCORRECTION REQUESTED Chosen basis character previ experience promise Institute Fellows young professionalsfunded tospendaminimum oftwoyearscarry designed programs study writing outside United States The Fellows required report their findings experiences field onceamonth Theycan writeonanysub formally informally The result unique porting analysis periodic assess international events issues Author Michaelson Marc Title ICWALetters subSaharan Africa ISSN Imprint Institute Current World Affairs Hanover NH Material Type Serial Language English Frequency Monthly Other Regions MideastJNorth Africa South Asia TheAmericas Europe Russia EastAsia Institute Fellows their Activities AdamSmithAlbion Aformerresearchassociateatthe Insti EastWest Studies Prague Czech Republic Adam studying writing about republics Central Asia their importance actors within ithout formerSovietbloc AHarvardgraduate History Adam completed first M Litt Degree Russian East European history languages Oxford Uni versity EUROPE RUSSIA ChristopherP Ball Aneconomist Chris Ball holdsa B A University ofAlabama Huntsville attended InternationalSummerSchool attheLondon School ofEconom Hestudied Hungarianfortwoyears Budapestwhile Project Directorforthe HungarianAtlantic Council Asan InstituteFellow isstudyingandwritingaboutHungarianmi norities former Soviet nations East Central Europe EUROPE RUSSIA ShellyRenaeBrowning Asurgeonspecializing inearsand hearing Dr Browning isstudyingtheapproachesoftraditional healersamong theAborigines ofAustralia indigenous peoples ofVanuatu hearing lossand earproblems Shewon B S Chemistry University South studied physician patient relationships ChinaandAustraliaon Watson Fell owship andwon D atEmory Univer inAtlanta Before herICWAfellowship shewasa Fellow Skull Base Surgery Montreal atMcGill University Depart mentofOiolaryngology SOUTHASIA ChenoaEgawa AnenrolledmemberoftheLummi Indian Na ChenoaisspendingtwoyearslivingamongmesoAmerican In dians studying successful successful cooperative organizationsdesigned Indians markettheirmanu factures agricultural products crafts without relying middlemen Aformertrade specialistfortheAmerican Indian Trade Development Council Pacific Northwest Chenoa B A International Business Spanish theUniversityofWashingtoninSeattle THEAMERICAS Paige Evans Aplaywrightand former LiteraryManagerofthe ManhattanTheatreClub inNewYork City Paige iSlookingat Cubathrough ofits performing With History Lit erature B A Harvard served counseloratthe Buckhorn Children sCenterin Buckhorn Kentucky asArtsEditoroftheInterna tionalCourierinRome Italy adjunct professorteachinga course Contem poraryAmerican Playwrights atNewYor University Shejoined theManhattanTheatreClub THEAMERICAS WhitneyMason Afreelance printand televisionjournalist WhitbeganhiscareerbyfoundinganewspapercalledThe Si berianReviewinNovosibirsk thenworkedasan torofthe V adivostokNewsandwroteforAsiaweekmagazine inHongKong In1995heswitchedtoradio andvideo journal working inBosniaandKoreaforCBS AsanICWAFellow studying writing about Turkey nexus tweenEastandWest andbetweentraditionalandsecular Is Marc Michaelson Aprogram managerforSave Children The Gambia Marc moved across Africa Horn there assess nation building Eritrea Ethiopia conditions permitting availing unavailing humanitarian effortsinnorthernSomaliaandsouthernSudan WithaB A political science Tufts ofnon degree study London School Economics M aster International PeaceStudiesfromNotreDame hedescribes hispostgradu ateyearsas sevenyears experience ininternationaldevelop programming peace research SAHARA JeanBenoitNadeau AFrench Canadianjournalistand wright Jean Benoit studied drama National Theater School Montreal received B A McGill University Political Scienceand History The holderofseveral Canadian magazineand investigative journalism awards spending ICWA fellowship years France studying resistance oftheFrenchtothetrend ofeconomicand cultural globaliza Susan Sterner AstaffphotographerfortheAssociated Press inLosAngeles SusanreceivedherB A inInternationalStud Cultural Anthropology Emory University Master LatinAmericanStudiesatVanderbilt APgaveher ranging assignments Haiti Mexico alongtheU S Mexicanborder in1998shewasaco nominee Pulitzer Prize series child labor Her fellowship topic livesand status Brazilianwomen TyroneTurner Aphotojournalist Black Star whoseworkhas appeared U S newspapers magazines Tyrone holds Master degree Government Latin American politicsfromGeorgetownUniversityandhasproduced interna tional photo essayson topicsasRwandan genocideand mining inIndonesia thelatternominatedfora Pulitzer Asan ICWAFellow writing photographing Brazilian youth their lives rural urban settings DanielB Wright AsinologistwithaMaster sDegree Inter national Relations Nitze School ofAdvanced Interna tional StudiesoftheJohns Hopkins University Dan sfellowship immerses southwest China Guizhou Province where journalist Shou Guowei their children MargaretandJon willbasethemselvesfortwoyears inthe cityofDuyun PreviouslyaspecialistonAsianand Chineseaf fairs fortheWashington consulting firmofAndreae Vick As sociates Dan studied Chinese literature Beijing University holds Master Divinity degree Fuller TheologicalSeminaryofPasadena California EASTASIA