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DetailscanbefoundattheendofDANICINGWITH

ELEPHANTS

DANCINGWITHELEPHANTSMindfulnessTrainingforThoseLivingwithDementia,Chronic

IllnessoranAgingBrain

ByJaremSawatsky

CONTENTSFacingElephantsPartIReverenceforLifeEmbracingtheHardThingsReplacingFearwithLoveLearningtoSeeLettingGoCelebratingEverything

PartIITrueHappinessLivingBeautyAwakeEmbracingDustness

WalkingtheUrbanPilgrimageLovingaPuppy

PartIIITrueLoveRespondingaDiseasewithaCircleFacingDeath,LifeandLovewithIntegrityUnlockingtheKeystoDyingWellUsingSecretHealingIngredientPlayingwithChildren

PartIVLovingSpeech&DeepListeningRefusingtoBattleMyDiseaseNamingYourOwnWayMakingFriendswithDarknessRememberingForgettingisOKBreathingAnger

PartVNourishment&HealingEmbracingWeaknessFallingMindfullyValuingyourLifeEatinglikeaBuddhaFindingYourOwnMandelaGardenCarryingOutaFamilyHealthPlanMandelaGardening

FinalWords

D

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FacingElephants

earestElephantDancer,Iknownothingaboutelephantsnordancing.Andyet,thisis

atrainingmanualandloveletterforelephantdancerslikeyourself.Facingelephants issomethingweoftenavoid. Mostofushave

elephants stashed in our closets or hidden in plain sight. These

elephantsareourbigunacknowledgedfears.My elephant in the room isHuntington'sDisease – once called

thedancingdisease!It'sanincurable,genetic,fatalbraindisease.Itis kind of a combination of Parkinson's, Alzheimer's andSchizophrenia. Justpictureanelephantwiththiscombo!Thatpicturemakesmelaughnow.ButIhavenotalwaysbeenlaughing.Ihadtoquitmyjobandgoonlong-termdisability.Iwasauniversityprofessor in peace and conflict studies. Now I am literallystumblingmywayintolearningaboutloving,lettinggoandlivinginthenow.Iinviteyoutojoinmeonthisjourney.In aworld afraid of dying, not achieving and not succeeding, I

reflect on the gift of losing my mind. My friends have alwaysthoughtIhadholesinmyheadbutnowmydoctorshaveconfirmedit.IusemyexperiencewithHuntington'sDiseaseasaspringboardto raise issues thatmay be of interested to anyonewhose life hasbeentouchbydementia,chronicillness,disabilityoranagingbrain.Insomewaysthisisabookaboutbeinghuman-afragilewayofbeingforallofus.

I inviteyou to joinmeon this journey. Somanyofmyfriendslook atme and see all that I have lost. We see people as a dis-ability.ButmyfocusislessonwhatIhavelostandmoreonhowtoenjoylifenow.Toreally,honestlyenjoylife,Ihavehadtolearntoembraceanddancewiththeelephantsintheroom.Thisisalongand sometimes treacherous journey. But for me, it has also beenwildlybeautifulandgood.HereistheadviceIgivetomyselfandoffertoyou.

PartI–ReverenceforLife:LetGoofAchievingandCelebrateLife.

Embrace losing yourmind. Throw a party for yourself and inviteeveryone you know to come and help send you on thismad newjourney.Takeinspirationfromthetraditionalvillageidiotwhositson a fence. Be a fence-sitter, watch others and laugh at highachieversbecausesometimesittakesanidiottoraiseavillage.Let

goofevaluatingyourselfbasedonwhatyouhavedone.Becomealow achiever and a high celebrator of life. Stop running and startpartying.

PartII-TrueHappiness:LiveBeyondEntitlementsandbeaGood-ishNeighborWhoCultivatesConflict.

Theonlypowerothers haveover you iswhat yougive them. Sodon’t.Removeconsent.Standup–withoutfear–forlove.Bekindto everyone. If they insult you, pocket it. You don't need torespond. However, sometimes silence slides into complicitywithwrongdoing. For example, if you greet a neighbourhood grouchwithkindnessandheinsultsyou,donothing.Ifhetakesaswingatyourdogwith anumbrella, youneed to speak. Speakkindly and

givehimanopportunitytogetbackontherighttrack.Ifherefuses,say, "Be a man, apologize." Keep saying this with increasingvolumeuntilheleavesorapologizes.Thenwalkawayimaginingaworld where men will not be judged by their ability to beviolentbutbytheirwillingnesstoapologize.Learntolivelikethedust.Gohometotheearth.Touchtheearth

and embrace you dustness. Bury your head and your heart in theearth.Walkgently;goatyourownpace.Lookdownonnoone.Bekindtoyourfamily.Embracethewayofthedust.Cultivate conflict. They call it dis-ease for a reason – your

freedomcomes from the fact that youmakeothers feel ill at ease(dis-easeinthem,notus).Theyaremoreafraidofyouthanyouareofthem.Ifyouwantpeopletobackawayfromyou,rockbackandforthandtalknonsense.Youwillcreatemoredis-easeandtheywillbackoff.Learnthepracticeoflettinggoofall of yourentitlements because there is an uncommon freedom on the otherside of entitlements. If someone in authority insults you, pretendnottonotice.Instead,tellthemhowthankfulyouarethatsomeone

sowisewouldofferyousuchencouragement. Ifyouwant,ask ifyoucanbeBFFs.Cultivateconflictswhensystemsneedchanging.Bekindtoyourfamily.

PartIII-TrueLove:FindTheJoyandGentlenessofNotTakingYourselfTooSeriously

Learn to laugh at yourself, often. This can be painful at first butsoon itwillbea formofentertainment foryou. Ifchronic illnessmakes you prone to dropping things, don’t apologize. If youaccidentallypourabitofwateronyourlap,lookpeoplestraightintheeyeandthenpourtherestofthewateronyourlap.Kidsoftendon’tknowhowtorespondtopeoplewithchronicillness. Souseyour situation to make them laugh. If you have involuntary

movements,give thekidsaslightsmackandthensay,“Sorry, it’sthedisease. I can’thelp it.” Foradults, apologize inadvanceandthen smack them too, gently. Remember, don’t battle or conqueranything. If you have no self, then there is nothing you need toprotectwithviolence.Bekindtoyourfamily.Rememberyourlifeisbutdust.Embracewisdomwhereveryou find it, especially if itseemstobewayoutofthebox.Dementia is no one’s life dream. However, that doesn’t mean

thatyoucan’ttreatitlikeaformoftravelandenjoythenewterrainandthedementedlocals.

PartIV–LovingSpeechandDeepListening:BeaGoalless,Baseless,UnfocusedWanderer

If someone asks you what you did during the day, tell them, “Ildolcefarniente.”Theymightthinkyou’redrunkbutitmeans“thesweetnessofdoingnothing.”.Embracethe“now”andletgoofthe

“not yet.” A healing path only opens as you travel it. Don’t letothersnameyour journey. Renameyour“disease”something likeLottery or Sunburst. Giving up having goals may be difficult atfirst. As you wean yourself off goals, you may create sometemporarygoals. Forexample,go toyour lawyerandtellhim/herabout your dementia and ask the lawyer atwhat point you are nolongercriminallyresponsiblebecauseyouhavealistofthingsyouwouldliketodowhenyoureachthatpoint.Don’tmakedecisionsas stepping stones that lead to some other plan; enjoy eachmoment. Be kind to your family. Wander aimlessly. Just enjoyeachstep.Thereisnotimetowaitforfuturedestinations,sobedestination-

less.Becomealoverwithoutborders.

PartIV–NourishmentandHealing:EmbracetheFreedomofNotCaringWhatOthersThink

Skipeverythingthatdoesnotgiveyoujoy.Youhavebiggerfishtofry.Trainyourfriends,familyandcommunitythatyoudon’tgotomeetingsorgatherings(unlesstheygiveyoujoy).Ifcompanystaystoo long, get up – don’t saywhat you are doing – just leave theroomandgotobed.Withpractice,fearwillloosenitsgriponyou.Usethisnewcouragetosurpriseotherswithjoy. Meetroadragewith the language of love by pretending you only speak French. When neighbours yell at your wife, go knock on their doors,introduceyourselfandtellthemhowdisrespectfultheyweretoyourrelations.Myuncle,whohasaformofdementiawasbannedfromBest Buy for life after peeing in the store (not in the bathroom).Use him as a rolemodel. Howmany places can you be bannedfrom?Usethisnewfreedomwisely.ItiswithagleefulgigglethatIcansayIhavetriedeverythingin

thisbook.Ihaveusedmyselfasahumanguineapigtotesttheartofdancingwithelephants.AsfarasIknow,thesemindfulnesstrainingsaresafeforyoutotryathome.OrmaybetheyarelikeAslanthelionfromNarniaseries:notsafebutgood.

Eachofthefivepartsofthisbookexploresoneofthesequestionsinfunny,surprisingand—Ihope—wiseways.These questions have been the juice of curiousity that has shapedthisjourney:

HowdoIkeeponlivinglifetoitsfullest?HowdoIfindtruehappinesswithinmysituation?Howdo I protectmy family and those closest tomefromthedamageImaydo?What kinds of wisdom practicesmight be helpful toprepareforthecurveballs?Howdo I avoid the things that are toxic forme andcultivatehabitsthatgivenourishmentandhealing?

OneofthemostinspiringpeopleIhavemetisThichNhatHanh,aZenBuddhistMasterandauthorofmorethan100books.WhenIwasdoingmydoctoralstudies,Thich Nhat Hanh and hiscommunity,PlumVillage,wereamajorfocusofmyresearch.Thismeant I could hangout at PlumVillage and bringmy family andeachdaywewouldsoakintheteachingsofThichNhatHanh.Ido

notgointothoseteachinghere.Butthefivepartsofthisbookfollow,roughly,thefivemindfulnesstrainingsofThichNhatHanh.There isendlessadviceonhow toachievemoresuccess in life,

butverylittleonhowtoembracethedownwardpathoflosingyourmind.We have success tips for leaders, but almostno“successtips”forthebillionsofusfacingdisease,dementiaoraging.This work is inspired, in part, by the work of Nobel Laureate

MuhammadYunus. Hesaid it isveryeasy towinaNobelPeacePrize!Youjusthavetodotwothings:

1. Look atwhat the big corporations and banks do andthendotheopposite

2. Createhopenotby tellingpeoplewhat theycoulddoorshoulddo,butbygivingthemexamplesfromyourownlifeconcerninghowyouarelivingthefuturenow[Idon’tquiteunderstand“howyouare living for thefuturenow”—doesthismeanhowyouarelivingasifthefutureisnow?].

When I became a student of the ThichNhatHanh,Ilearneda

similarapproach.Focuslessonrightbeliefandmoreonrightaction.Inotherwords,focusandreflectonhowyourdailylivingcultivatesloveandcompassion.Ofcourse,thisisnothingsimpleaboutthis.Buttryboldexperimentsinlivingloveandifyouneedtousewords,reflectonwhatyourpracticesareteachingyouaboutlivinglove.Following Yunus's and Thich Nhat Hanh’s example, this book

does not offer instruction as to what you could or should do. Itsimply shares my stories and reflections on what I have done.WhereIcomeacrossasbossingyouaround,pleaseunderstandIamreallyaddressingmyself.Hereismyadvicetomyself.Ishareitwithyouinthehopethatyoumighttakeuptheartofdancingwithelephants.Iwriteasonewitha formofdementiaand Icome froma long

line of demented ancestors (Huntington’s Disease is passed onthroughthegenerations).Weknowsufferingisallaroundus.Inthelast five years, my mother-in-law with Alzheimer’s died from astroke, my father-in-law died of cancer, and my father was

diagnosedwithterminalcancer.Weallfacesomething.On long-term disability as a professor in peace and conflict

studies, I have been exploring how to embrace the path of losingyour mind. While I am still having some withdrawal symptomsfrom my days of over-achieving, every day I practice the art ofdancingwithelephantsandtrytoenjoyeachstep.Thisisnotthekindofhealingthatgetsridofthedisease.Butit

isthekindofhealingthatwillmakeyourfriendsjealousofyoursituation.Whentheyseehowmuchfunyou’rehaving,theytoowillwanttohaveadiseaseoratleastlearntheartofdancingwithelephants,sotheytoocanexperience freedom, honesty, joy, life,happiness,nourishmentandlove.

H

PartIReverenceforLife

owdowekeepliving?Thisisaquestionelephantdancersneedtopursue.Whenlifecompletelychangesforus,isitstillpossibletogoonlivinglifetothefullest?Isharethestories,

mindfulnesstrainingsandreflectionsthathavehelpmetolivelifetothefullness.

Butbewarned:thephoenixknowsthereisagreatburningawaythatmustprecedeanykindofrisingoutoftheashes.

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EmbracingtheHardThings

OnAvoidingtheHardThings

oprayerseverpissyouoff?Sometimestheypissmeoff.Inmyteens and twenties, I was a wilderness guide, leading groupcanoe trips. Sometimesparticipantson these tripswouldpray

fornorainandnohardthings.EveninmyteensIknewthismade

nosense.SometimesIwouldprodthemabouttheseprayers.“Doyouwanttotreesandanimalstodie?Theyneedrain.”“No,”theywouldsay.“Wejustdon’twantittorainonus.”“Oh, so youwant it to rain on the other groups I take out this

summer,butnotyourgroup?”“No,” theywould say. “God canmake it rain on the trees and

animalsbutnotthepeople.”Irealizedalreadyasateenthatitrequiredsubstantialmental(and

sometimestheological)gymnasticsforpeopletobeabletojustifyaview of the world in which uncomfortable or unpleasant thingsshouldn’thappen.

OntheWayWeRidetheWave

Thisfall,IreturnedtothatsamewildernessoftheCanadianShieldcountry.Itfeelslikecomingfullcircle. Crossingthepathsofmyyounger self, I am reminded of thewisdom I could only learn by

listening to the heartbeat of the wild. The temptation to try andinsulate oneself from the hard things remain both common andunderstandable,butIstilldon’twanttorunfromthestorm.Idon'twanttorunfromthehardthings.Healingisnottheabsenceofthestorm.HealingisthewayweridethewayDrivingaloneontheprairies,aftergoingtoafuneralofayoung

man, and thinking aboutmyownchronic illness and about rain, Iwrote this poem, as a way to reflect on my wish to reject thetemptationtotrytoavoidthingsthatarebothhardandgood.NobodyWantstheRain

EverybodywantsgreensceneryNobodywantstherain

EverybodywantsfoodonthetableNobodywantstherain

EverybodywantsthecolourfulrainbowNobodywantstherain

Everybodywantswaterintheirbodies

Nobodywantstherain

Iwenttotheprairie,TheExpanderofHorizonsToaskabouttherain

IstoodontheedgeoftheworldAndwatchedtheraincomingallaroundAndtheprairieproclaimedavisionEachtimethegiftofrainwasoffered

thepeopleraninfearHeart’sfearpervertsdarknessintoevilMissingthegiftoflifehiddeninthecloud

Letitraindown,letitraindownLetitraindownonme

Everybodywantsgreenscenery

NobodywantstherainEverybodywantsfoodonthetable

NobodywantstherainEverybodywantsthecolourfulrainbow

NobodywantstherainEverybodywantswaterintheirbodies

Nobodywantstherain

IwenttothemountainTheGiverofWisdomToaskabouttherainIkneltonancientrocksFiftybillionyearsawakeandtherocksspoketome

TherainshapesandmoldsusandturnsusintosandTheserain-shapedrocks

FeedtheearthastheirdustbecomessoilThemightymountainsaretransformed

Bybutatinydropofrain

Letitraindown,letitraindownLetitraindownonme

Everybodywantsgreenscenery

NobodywantstherainEverybodywantsfoodonthetable

NobodywantstherainEverybodywantsthecolourfulrainbow

NobodywantstherainEverybodywantswaterintheirbodies

Nobodywantstherain

IwenttotheoceanTheAlphaandOmegaToaskabouttherain

Isatontheocean’sedgeAsbutatinygrainofsand

Andtheoceanquestionedtome

Whereismybeginningandwhereismyend?

Ocean’sedgeishardtofindOnshore?Insky?Insidemybody?Theocean’sendisitsownbeginningLetitraindown,letitraindown

LetitraindownonmeWecannotlearntoreverelifeifwecannotwrapourhearts

aroundtheideathatsufferingexists.Theartofdancingwithelephantsisnottheeliminationofsuffering.Wedon’tkilltheelephant.Welearntodancewithit.Alllivingbeingssuffer.Toreverelife,wecannotlifeindenialbutmustunderstandthatsufferinganddeatharepartoflife.Thistruthisnottheendofthestorybutitisanecessarystartingpointonthisjourney.Oncewebecomecomfortablewiththeideathatsufferingexists,

weneedtolearntoletgooffearandreplaceitwithlove.Thisisthefocusofthenextchapter.