email page print pageAll Topic Reviews
"Are You There Alone?""How Come Boys Get to Keep Their Noses?""My Madness Saved Me"10% Happier365 Days49 Up56 UpA Beautiful MindA Beautiful MindA Beautiful MindA Book of ReasonsA Can of MadnessA Child's Life and Other StoriesA Dangerous LiaisonA Fight to BeA First-Rate MadnessA Good Enough DaughterA Heartbreaking Work of Staggering GeniusA Lethal InheritanceA Lethal InheritanceA Life ShakenA Life Worth LivingA Little PregnantA Message from JakieA Million Little PiecesA Numerate LifeA Pocket History of Sex in the Twentieth CenturyA Slant of SunA Special EducationA Tribe ApartAbout FaceAddicted Like MeADHD & MeAEIOUAgainst Medical AdviceAgents in My BrainAileen - Life and Death of a Serial KillerAlgernon, Charlie and IAll Out!All Seasons PassAlphavilleAlways Too Much And Never EnoughAlzheimer'sAn Anthropologist on MarsAn EducationAn Unquiet MindAngela's AshesAngelheadAnna Freud: A BiographyAnnie's GhostsAnother Bullshit Night in Suck CityAnthology of a Crazy LadyApples and OrangesApproaching NeverlandAre You There, Vodka? It's Me, ChelseaAs I Live and BreatheAs Nature Made HimAt Home in the Heart of AppalachiaAt the End of WordsAvalancheBad BoyBad GirlBeautiful BodiesBeautiful BoyBeautiful WreckBecause We Are BadBecoming AnnaBecoming MyselfBen Behind His VoicesBequest and BetrayalBereftBertrand RussellBlackoutBlanketsBloodlettingBodies in Motion and at RestBoneBorn on a Blue DayBoyBoy AloneBoyleBrain on FireBreaking ApartBreaking the SilenceBrokenBulimics on BulimiaBuzzCamus and SartreCharles DarwinChasing the HighCheeverCherryCity of OneCluesClumsyComfortComplications Compulsive ActsConfessions of a Cereal EaterConfessions of a Former ChildConfessions of a Grieving ChristianConfessions of the Other MotherConfidingConquering the Beast WithinContesting ChildhoodCrackedCrazyCry Depression, Celebrate RecoveryDamned to EternityDancing at the Shame PromDante's CureDaughter of the Queen of ShebaDavid Sedaris Live at Carnegie HallDays With My FatherDefeating the VoicesDementia Caregivers Share Their StoriesDepression and NarrativeDescartesDetourDevil in the DetailsDiagnosis: SchizophreniaDirty DetailsDirty SecretDivided MindsDivine MadnessDon't Get Too ComfortableDown Came the RainDress Your Family in Corduroy and DenimDrinkingDriving My FatherDrunkardDryEarly Embraces IIIEarly ExposuresEinsteinEinstein and OppenheimerElectroboyElegy for IrisElijah's CupElliott Smith and the Big NothingElsewhereEnough About YouEpilepticEvery Girl Tells a StoryEverything In Its PlaceExamined LivesExiting NirvanaFaces of Huntington'sFamily BoundFast GirlFearless ConfessionsFind MeFinding Iris ChangFirst Person Accounts of Mental Illness and RecoveryFirst Person PluralFixing My GazeFlanneryFolie a DeuxFor the Love of ItFortress of My YouthFrank Ramsey (1903-1930)Franz KafkaFraudFree RefillsFreudFreudFreudFriedrich NietzscheFrom Joy Division to New OrderFumblingFun HomeFuriously HappyGalileo Get Me Out of HereGetting OffGirl in Need of a TourniquetGirl Walking BackwardsGirl, InterruptedGirl, InterruptedGirls on the VergeGoing BlindGoing Through Hell Without Help From AboveGraysonGrowing Up JungGuttedHalf a Brain Is EnoughHardcore from the HeartHead CasesHeal & ForgiveHeal & Forgive IIHeavier than HeavenHeinz KohutHeinz KohutHello from Heaven!Hello to All ThatHer HusbandHer Last DeathHigh PriceHole in My LifeHolidays On IceHolidays on IceHope's BoyHouse of Happy EndingsHouse of Happy EndingsHow I Stayed Alive When My Brain Was Trying to Kill MeHow to Lose Friends & Alienate PeopleHow to Make Love Like a Porn Starhow to stop timeHumeHunger Makes Me a Modern GirlHurry Down SunshineI Am I Am I AmI Feel Bad About My NeckI Never Promised You a Rose GardenI Remain in DarknessI'd Rather Eat ChocolateI'd Rather LaughIf I Die Before I WakeImagining RobertIn Search of FatimaIn the Realms of the UnrealIn the Wake of SuicideInside TherapyInternInvisible No MoreIt Happened to NancyIt Takes a Worried ManJack Cole and Plastic ManJean-Paul SartreJohn Stuart MillJourneys with the Black DogJust CheckingKafkaKantLa SierraLab GirlLast Flight OutLearning to FallLet Me Make It GoodLife As We Know ItLife InterruptedLife ReimaginedLimboLincoln's MelancholyListening in the Silence, Seeing in the DarkLittle PeopleLive For Your Listening PleasureLive Through ThisLiving in the Shadow of the Freud FamilyLiving With SchizophreniaLiving with SchizophreniaLockeLonelyLong ShotLook Me in the EyeLooking for The StrangerLoose GirlLosing Mum and PupLosing My MindLove Is a Mix TapeLove SickLove Times ThreeLove Works Like ThisLove You, Mean ItLuckyLudwig WittgensteinLyingMad HouseMad PrideMadame ProustMadnessMagical ThinkingMalignant SadnessManicMarcel ProustMarcus AureliusMary BarnesMaverick MindMe Talk Pretty One DayMeaningMelanie KleinMemoirMemoirs of an Addicted BrainMemoirs of My Nervous IllnessMen-ipulationMisconceptionsMiss American PieMockingbird YearsMomma and the Meaning of LifeMommies Who DrinkMonkey MindMore, Now, AgainMortificationMy Age of AnxietyMy Body PoliticMy Brain Tumour AdventuresMy DepressionMy Father's HeartMy First Cousin Once RemovedMy Flesh and BloodMy Horizontal LifeMy Life Among the Serial KillersMy Sister LifeMy Stroke of InsightName All the AnimalsNeural MisfireNietzscheNietzsche: The Man and His PhilosophyNinety DaysNo Hurry to Get HomeNo Impact ManNo More ShavesNo One Cares About Crazy PeopleNolaNotebooks 1951-1959NothingOdd Girl Speaks OutOedipus WreckedOf Spirits & MadnessOn Being RapedOn the Edge of DarknessOn the MoveOne Hour in ParisOne Hundred DaysOphelia SpeaksPagan TimePassing for NormalPeople Who Eat DarknessPerfect ChaosPerfect ExamplePermanent Present TensePersepolisPlanet of the BlindPlaying with FirePlease Don't Kill the FreshmanPoisoned LovePollockPOPismPortraits of Huntington'sPoster ChildProzac DiaryPsychiatrist on the RoadPsychosis in the FamilyPuppy Chow Is Better Than ProzacQuitting the Nairobi TrioRaising BlazeReasons to Stay AliveRebuiltRecovered, Not CuredRelative StrangerRescuing JeffreyRestricted AccessRevengeRewind, Replay, RepeatRichard RortyRiding the Bus With My SisterRobert Lowell, Setting the River on FireRoom For JRosemaryRough MagicRunning After AntelopeRunning with ScissorsScattershotSchizophreniaSchopenhauerSecond OpinionsSectionedSeeing EzraSeeing the CrabSet the Boy FreeSex & Single GirlsSex ObjectShakespeareShe Bets Her LifeShe Got Up Off the CouchShut the DoorSickenedSilencing the VoicesSimone de BeauvoirSinging in the FireSkin GameSlackjawSlut!SmashedSome Assembly RequiredSome Kind of GeniusSometimes Amazing Things HappenSometimes Madness Is WisdomSongs from the Black ChairSongs of the Gorilla NationSoren KierkegaardSpeak to MeSpeaking Our Minds: Revised EditionSpecial SiblingsSpentStandbyStick FigureStill LivesStretchSunset StorySurviving OpheliaSwing LowTales from Both Sides of the BrainTales of PsychotherapyTalk to HerTell Me Everything You Don't RememberTellingTelling Tales About DementiaThe Accidental BillionairesThe AddictThe Anatomy of HopeThe Anti-Romantic ChildThe Art of MisdiagnosisThe Bastard on the Couch CDThe BeastThe Bell JarThe Best Seat in the HouseThe Big FixThe Body SilentThe Boy on the Green BicycleThe Boy Who Loved Too MuchThe Boy Who Loved WindowsThe Bright HourThe Buddha & The BorderlineThe Burn JournalsThe Camera My Mother Gave MeThe Cancer Monologue ProjectThe Center Cannot HoldThe Chelsea WhistleThe Churkendoose AnthologyThe Day the Voices StoppedThe Devil WithinThe DisappearanceThe Discomfort ZoneThe Doctor Is InThe Eden ExpressThe Family GeneThe Family SilverThe Farm Colonies: Caring for New York City's Mentally Ill In Long Island's State HospitalsThe Fasting GirlThe First Man-Made ManThe First TimeThe Geography of BlissThe Glass CastleThe Good DoctorsThe Hillside Diary and Other WritingsThe Incantations of Daniel JohnstonThe Infidel and the ProfessorThe Last AsylumThe Last Good FreudianThe Last Time I Wore a DressThe Liars' ClubThe Lives and Loves of Daisy and Violet HiltonThe Lives They Left BehindThe LobotomistThe Long GoodbyeThe Looked After Kid: Memoirs from a Children's HomeThe Loony-Bin TripThe Madness of Our LivesThe Making of a PhilosopherThe Making of Friedrich NietzscheThe Man Who Couldn't EatThe Man Who Shocked the WorldThe Man Who Tasted ShapesThe Marvelous Hairy GirlsThe Maximum Security Book ClubThe Me in the MirrorThe Memory PalaceThe Mercy PapersThe Mistress's DaughterThe Mother of Black HollywoodThe Naked Bird WatcherThe Naked Lady Who Stood on Her HeadThe Neuroscientist Who Lost Her MindThe Night of the GunThe Noonday DemonThe Notebook GirlsThe NursesThe Only Girl in the CarThe Only Girl in the WorldThe Orchid ThiefThe Other HollywoodThe OutsiderThe Philosopher's Autobiography The Philosophical Breakfast ClubThe Philosophical IThe Pits and the PendulumThe Pornographer's GriefThe Private Memoirs and Confessions of a Justified Sinner The Professor and the MadmanThe Psychopath TestThe Quiet RoomThe RecoveringThe Red DevilThe Rescue of Belle and SundanceThe Ride TogetherThe Rules of the TunnelThe Secret of LifeThe Shaking Woman or A History of My NervesThe Shared HeartThe Shiniest JewelThe Siren's DanceThe Statistical Life of MeThe Story of My FatherThe Strange Case of Hellish NellThe Summer of a DormouseThe SurrenderThe Talking CureThe Thought that CountsThe Three of UsThe Undoing ProjectThe Vagina MonologuesThe Velveteen FatherThe Winter of Our DisconnectThe Woman Who Walked into the SeaThe Years of Silence are PastThe Yellow HouseThe Yipping TigerThick As ThievesThinThis Close to HappyThomas S. SzaszTiger, TigerTits, Ass, and Real EstateTo Redeem One Person Is to Redeem the WorldTo Walk on EggshellsTransforming MadnessTrue CompassTruth & BeautyTruth Comes in BlowsTuesdays with MorrieTweakTwitch and ShoutUltimate JudgementUndercurrentsUnholy GhostUnlikelyVoices of AlcoholismVoices Of Alzheimer'sVoices of CaregivingVoices of RecoveryVoluntary MadnessWaiting for DaisyWar FareWashing My Life AwayWastedWaveWe're Going to Need More WineWe're Not MonstersWeather Reports from the Autism FrontWeekends at BellevueWhat Did I Do Last Night?What Goes UpWhat I Learned in Medical SchoolWhat's Normal?When a Crocodile Eats the SunWhen Breath Becomes AirWhen Do I Get My Shoelaces Back?.....When It Gets DarkWhen the Piano StopsWhen You Are Engulfed in FlamesWhere Did It All Go Right?Where is the Mango Princess?Where the Roots Reach for WaterWhile the City SleptWhile They SleptWho Was Jacques Derrida?Why I Left, Why I StayedWhy I'm Like ThisWildWill's ChoiceWinnicottWinnieWish I Could Be ThereWith Their EyesWomen Living with Self-InjuryWomen, Body, IllnessWrestling with the AngelYou Must Be DreamingYour Voice in My HeadZeldaZor
Portraits of Huntington's: Choosing Joy Through
Life Lessons is a followup to Carmen Leal's previous work on Huntington
Disease, Faces of Huntington's; some of its content is, as well, reprinted
from an earlier inspirational book, Pinches of Salt, Prisms of Light.
Fans of Leal's previous work will find much to appreciate here; newcomers will
have to decide whether the particular strengths of this book meet their needs.
The book is intended as a collection of
"uplifting" anecdotes and encouragement, drawn from Leal's personal
experiences married to a man with Huntington Disease. It has a distinct but not
pervasive Christian perspective; it is not an overtly religious book but the author's
religious beliefs are brought out. It is not didactic and does not advise on
the practical necessities of caring for a person with HD; in fact, though
Leal's experiences, and her stories, are specific to life with a person with
HD, most of her message is applicable to anyone.
The book is divided into sections
representing different virtues or strengths ("Knowledge,"
"Laughter," "Patience," "Compassion,"
"Faith," "Love," "Hope," "Joy"); each
contains a handful of anecdotes apparently intended to illustrate the theme of
the section. (The link is tenuous in some cases; the various sections do not
seem all that different from one another.) With no introductory or discursive
sections, the book does not draw conclusions from its stories or attempt to
synthesize them into broad principles; it is not a "self-help" book
or a guide for caregivers of those with debilitative disease. It is simply a
collection of "heartwarming stories"; the overall message, if there
is one, is that an optimistic perspective and a great deal of tolerance are
required to meet challenges.
The stories range in tone from rueful to
humorous. The anecdotes tend not to be particularly dramatic (a mouse in the
kitchen, packing the wrong things for a trip overseas). The closing messages
with which Leal ends each story are equally banal. ("[R]emember this: your
worst fears might never be realized." "[L]ook for the miracles."
"[O]ur hopes have a better chance of being realized if we are the joyful
generation.") The included poems and lyrics by her friends and relatives
("In a world often heartless and cruel / Where our children are grieving
in school / I look to the sky / And ask God 'Why oh why?'"), and the
just-slightly-awkward pencil sketches prefacing each section, drawn by another
of Leal's friends, add to the painfully sincere tone of the entire work.
For all that, Leal's love for her husband,
Dave, and the genuine conflict she feels, caught between her desire to assist
him and the real difficulties of doing so, come through in an authentic way. In
places, she manages to convey the pathos of what has been lost -- both for her
and Dave -- to his disease: her contrast of her husband's pre-symptomatic
period, as an intelligent, vigorous man with an MBA, with his childlike, almost
incommunicative personality late in the disease progression (his single
greatest joy was a day spent at Disneyworld, where he met a person dressed in a
Goofy cartoon costume), is poignant. Her sense of humor about her challenges
shapes each of the stories, and she brings it to her understanding of her
husband's condition as well (she is particularly good-natured about one of the
few distinctive personality traits that persists through his HD-related
deterioration: his fondness for good-looking women, which leads him to wander
into Sarah Michelle Gellar films at the local theater, and develop crushes on
his nursing staff). His struggles, and hers, to maintain a familial
relationship -- between themselves, and between Dave and her children -- as his
condition worsens are especially moving, and the breakthrough moments when he
blurts out "I love you," or responds when they say it to him,
transcend any amount of clunky prose.
In the end, Portraits of Huntington's
will appeal to those who seek brief, optimistic diversions as they struggle
with their own burdens; it will especially hearten family members or caregivers
of those with chronic and debilitating diseases, who will surely find Leal's
stories familiar and her positive take on them inspiring. There is something to
be learned from the book about dealing with long-term illness and caregiving,
and especially about maintaining a sense of humor while doing so. The book is
not a primer for caregivers, still less an educational tool regarding HD. (It
does not even particularly "portray" those with the disease. Most of
the stories would be equally effective if the subject had had some other
disease, making the book less about people struggling with HD per se
than it is about people facing any draining, demanding, chronic burden.) But as
light reading with an optimistic tone and a useful message, the book fills a
certain niche. Family members and caregivers of persons with HD and other
debilitating diseases, and who appreciate "uplifting" literature, may
find it reassuring and enjoyable.
© 2004 Kevin T. Keith
Link: Author website
Kevin T. Keith, M.A., City College,