what seemed like a new, imperfect, but manageable
steadystate.Betweenmymother,thevarioushelpersshe
hadarranged,andhisownsteelwill,he’d beenableto
string together weeks of good days.
Eachhaditssufferingsandhumiliations,tobesure.He
needed daily enemas. He soiled the bed. The pain
medications made his head feel “fuzzy,” “foggy,”
“heavy,”hesaid,andhedislikedthatintensely.Hedid
notwanttobesedated;hewantedtobeabletoseepeople
and communicate.Pain,however, wasfar worse.If he
lightened up on the dose of his medications, he
experiencedsevereheadachesandalancingpainthatshot
upanddownhisneckandback.Whenhewasinthegrip
of it, the pain became his entire world. He tinkered
constantlywithhisdoses,tryingtofindthecombination
thatwouldlethimfeelneitherpainnorfogginess—feel
normal,likethepersonhe’dbeenbeforehisbodybegan
failinghim.Butnomatterwhatthedrugordose,normal
was out of reach.
Good enough, however, could be found. Through the
springand earlysummer,he stillhad dinnerpartiesat
whichhe’dpresidefromtheheadofthetable.Hemade
plansforanewbuildingatthecollegeinIndia.Hesent
out a dozen e-mails a day, despite the difficulty
controlling his weakened hands. He and my mother
watchedamovietogetheralmosteverynightandcheered
onNovakDjokovicthroughhistwo-weekruntovictory
at Wimbledon. My sister brought home her new
boyfriend,whomshefeltmightbe“theone”—theydidin
facteventuallymarry—andmyfatherwasbowledover
with happiness for her. Each day, he found moments