Disability-MyExperiencewithALSIamquiteoftenasked:HowdoyoufeelabouthavingALS.Theansweris,notalot.Itrytoleadasnormalalifeaspossible,andnotthinkaboutmycondition,orregretthethingsitpreventsmefromdoing,whicharenotthatmany.ItwasagreatshocktometodiscoverthatIhadmotorneuronedisease.Ihadneverbeenverywellco-ordinatedphysicallyasachild.Iwasnotgoodatballgames,andmyhandwritingwasthedespairofmyteachers.Maybeforthisreason,Ididn'tcaremuchforsportorphysicalactivities.ButthingsseemedtochangewhenIwenttoOxford,attheageof17.Itookupcoxingandrowing.IwasnotBoatRacestandard,butIgotbyatthelevelofinter-Collegecompetition.InmythirdyearatOxford,however,InoticedthatIseemedtobegettingmoreclumsy,andIfelloveronceortwicefornoapparentreason.ButitwasnotuntilIwasatCambridge,inthefollowingyear,thatmyfathernoticed,andtookmetothefamilydoctor.Hereferredmetoaspecialist,andshortlyaftermy21stbirthday,Iwentintohospitalfortests.Iwasinfortwoweeks,duringwhichIhadawidevarietyoftests.Theytookamusclesamplefrommyarm,stuckelectrodesintome,andinjectedsomeradioopaquefluidintomyspine,andwatcheditgoingupanddownwithx-rays,astheytiltedthebed.Afterallthat,theydidn'ttellmewhatIhad,exceptthatitwasnotmultiplesclerosis,andthatIwasana-typicalcase.Igatheredhowever,thattheyexpectedittocontinuetogetworse,andthattherewasnothingtheycoulddo,exceptgivemevitamins.Icouldseethattheydidn'texpectthemtohavemucheffect.Ididn'tfeellikeaskingformoredetails,becausetheywereobviouslybad.TherealisationthatIhadanincurabledisease,thatwaslikelytokillmeinafewyears,wasabitofashock.Howcouldsomethinglikethathappentome.WhyshouldIbecutofflikethis.However,whileIhadbeeninhospital,IhadseenaboyIvaguelyknewdieofleukaemia,inthebedoppositeme.Ithadnotbeenaprettysight.Clearlytherewerepeoplewhowereworseoffthanme.Atleast用心爱心专心myconditiondidn'tmakemefeelsick.WheneverIfeelinclinedtobesorryformyselfIrememberthatboy.Notknowingwhatwasgoingtohappentome,orhowrapidlythediseasewouldprogress,Iwasatalooseend.ThedoctorstoldmetogobacktoCambridgeandcarryonwiththeresearchIhadjuststartedingeneralrelativityandcosmology.ButIwasnotmakingmuchprogress,becauseIdidn'thavemuchmathematicalbackground.And,anyway,ImightnotlivelongenoughtofinishmyPhD.Ifeltsomewhatofatragiccharacter.ItooktolisteningtoWagner,butreportsinmagazinearticlesthatIdrankheavilyareanexaggeration.Thetrouble,isonceonearticlesaidit,otherarticlescopiedit,becauseitmadeagoodstory.Anythingthathasappearedinprintsomanytimes,mustbetrue.Mydreamsatthattimewereratherdisturbed.Beforemyconditionhadbeendiagnosed,Ihadbeenveryboredwithlife.Therehadnotseemedtobeanythingworthdoing.ButshortlyafterIcameoutofhospital,IdreamtthatIwasgoingtobeexecuted.IsuddenlyrealizedthattherewerealotofworthwhilethingsIcoulddoifIwerereprieved.AnotherdreamthatIhadseveraltimes,wasthatIwouldsacrificemylifetosaveothers.Afterall,ifIweregoingtodieanyway,itmightaswelldosomegood.ButIdidn'tdie.Infact,althoughtherewasacloudhangingovermyfuture,Ifoundtomysurprise,thatIwasenjoyinglifeinthepresentmorethanbefore.Ibegantomakeprogresswithmyresearch,andIgotengagedtoagirlcalledJaneWilde,whoIhadmetjustaboutthetimemyconditionwasdiagnosed.Thatengagementchangedmylife.Itgavemesomethingtolivefor.ButitalsomeantthatIhadtogetajobifweweretogetmarried.IthereforeappliedforaresearchfellowshipatGonvilleandCaius(pronouncedKeys)College,Cambridge.Tomygreatsurprise,Igotafellowship,andwegotmarriedafew...
