i call it my grandmother’s house (as opposed to my grandparents’ house) because she runs things around here. she’s a Wong woman after all. we all know my grandfather is the real boss – for now – but porpor is always telling everyone what to do and how to do it, so it’s her house. i’m not sure if they meant to build this house like a cave, but it’s a good thing they did. with malaysia being on the equator and the lack of central air-conditioning, i would probably be dying of heat stroke if it weren’t so dark in here.
my grandfather has ALS, that’s amyotrophic lateral sclerosis, also known as lou gehrig’s disease – after the baseball player, lou gehrig. essentially your nerves stop working, but your brain doesn’t. i guess it’s something like the opposite of alzheimer’s disease. most people with ALS eventually cannot swallow anymore, so then they get a feeding tube; then they can’t breathe on their own, so they get a ventilator; and then they go into a coma. and then you get to unplug them. i would like to say that i’m past the point of being sad about my grandfather’s slow and presumably painful death, but that would be a lie.
my grandfather, we call him kongkong, was diagnosed something like 6 years ago. i can’t even remember what year it was. when we went to visit him that christmas he was having trouble lifting his arms, so we had to put his hands on the table for him and he had to bend way over his plate in order to feed himself. last year he was in a wheelchair because walking had become too much. he could still support his own weight a tiny bit to get from the wheelchair to his armchair, or to his bed but that was all. still, he had been living with this disease for so long and he was still exactly the same person (i mean cognitively) that i often forgot that he was dying.
this october, my mother informed me that kongkong may not be alive when we went to see him at christmas time. this completely blindsided me. i don’t know why i hadn’t been expecting this at some point. i guess i was, but i anticipated it being much later. needless to say, i didn’t handle it well. i couldn’t sleep, i stopped eating normally, and i had a breakdown in my class dean’s office that lead to me dropping out of two classes. my brother couldn’t handle the idea of losing another grandparent (our dad’s mother had died in january) and so he decided not to come to malaysia this year. i promised myself that i would leave nothing unsaid, and so i video chatted with my grandfather every sunday night. the only problem was that sunday night is supposed to be homework night (as every college student knows) and after those chats, i was completely nonfunctional.
so i stopped. i had my mom tell them that i couldn’t do it anymore. but we still talked on the phone sometimes. i just couldn’t look at him on my crappy webcam, sitting in his wheelchair with his arms extended in front of him, resting on a pillow. his arms. they are literally bones with skin coverings. no muscle. no fat. just skin. at the end of october they put in a feeding tube. that was not a good day for me. but it was a good day for kongkong, because now he can eat whatever he wants, as much or as little as he can, and it won’t matter because they can give him his real nutrition through the tube.
now i am here in the cave. yesterday was christmas (we are 12hrs ahead of eastern time) and a bunch of carolers from my grandmother’s church came to sing for us. my grandmother put out popiah (like egg rolls), egg sandwiches and brownies. my mom and i put candy cane pieces on top of the brownies – something that you can’t get here in malaysia. people weren’t really sure what to do with them. it was rather comical.
when the carolers were done with their songs, the pastor said a prayer for us. she went on for quite a long time about how this was a very special christmas because my kongkong had finally accepted Jesus into his life (which is true), it is so great because now everyone in this household is one of God’s children. that might be true if you don’t count me as one of the household. i was raised presbyterian, i loved my church and the people in it. but i have to say that i have become rather skeptical about the idea of Jesus, and my faith in a God or higher power of some sort is shrinking. what kind of God gives someone a disease like this? to strengthen his faith? that is laughable to me, although it’s true that it converted my grandfather. and if a person, a genuinely good person, gets this disease, this God is not getting points from me by sitting and watching it happen.
i haven’t really talked to my grandfather about his conversion. i know he prays every night, and i know that i am in those prayers. i feel guilty that i can’t reciprocate, but if i don’t believe it then what good are empty words to a maybe-there God? i guess i have adopted the belief that C.S Lewis talked about in some book i had to read for high school theology: if there really is a God and you didn’t believe in him, you’re screwed. but if there isn’t and you did believe, oh well. so you might as well take your chances and be a good Christian or Jew or agnostic or whatever. it seems a bit disingenuous to me, but C.S. Lewis was a smart guy, and i trust him.
so for now i sit here in front of this fan, occasionally going to the market or to the tailor so my mom can have some things made. sometimes i watch tv. but mostly i sit here and talk to kongkong. or watch him sleep. i watch his stomach rising and falling, out of fear that it will stop. it’s a very good thing they have wi-fi now.
it’s a dark cave.