I was in the bathroom following the 8 pm showing of "Star Trek" at the Kabuki last night. The line was long, and a young man came in and started talking loudly about the degree to which he needed to relieve himself. Then he did relieve himself - in the wastebasket near the front door. Can't say I've ever seen that happen before, though I can't say I blame him either.
As I continue to shoot footage which may or may not become part of my "documentary", I've gravitated more and more towards candid shots. Like today my mom was cooking some food while my father read the paper, and I decided to go grab the camera and start filming. My mom hates being filmed - she always asks me if I'm going to cut out the parts that she's in, even if the entire clip is of her. She says that she doesn't know what to say, and she doesn't look that nice at that moment. This kind of annoys me, so much so that my response today came out as "this is why I'm doing this documentary, not you." Oops. What I really meant to express was that you never know what will be meaningful, and if there was an actual correlation between meaningful and looking nice, then you WOULD know, wouldn't you? Besides, she didn't not look nice.
My dad, on the other hand, has given up looking really nice. Not that he's lost all sense of dignity, but his standards have definitely slipped. He's started doing this thing where he uses words in an imprecise manner. Like when he asked my mom if he could move his pill schedule later, except instead of "later" he said "to the left".
Sometimes I think that it's heroic that these are the biggest issues on a particular day, given all that's happened.
My dad, on the other hand, has given up looking really nice. Not that he's lost all sense of dignity, but his standards have definitely slipped. He's started doing this thing where he uses words in an imprecise manner. Like when he asked my mom if he could move his pill schedule later, except instead of "later" he said "to the left".
Sometimes I think that it's heroic that these are the biggest issues on a particular day, given all that's happened.
I'd like to "briefly" defend organized religion. I have to admit I become fairly defensive when people bash it, as they sometimes do, not because the arguments they make are invalid, but because there seems to be something lacking in the context, especially when the person is arguing that all, or even some, organized religions are simply wrong. Are religions unacceptable because many of them retain traditions that are outdated, or even repugnant by modern social standards? You don't have to be a scholar to see the inherent contradictions in most religions, and the potential human suffering they cause. But when you're deconstructing religion on a purely intellectual basis, you're kind of missing the point of the whole enterprise.
Most religions are extremely old. There are numerous really good reasons for this. Ever tried starting your own religion? I bet you had fun being called a cult leader. You'd think it would be an easier task, since your main competition wears funny hats and/or frequently engages in fear-mongering. Not to mention the lame camps and frequent hostility to art. It's easy to conclude, even without starting your own religion, that a lack of any religion of all is a superior alternative to this.
Which begs the question, why is there any religion anymore, since it's so obviously outmoded? That brings me to suggest another reason for why religions are really old - because they've survived for so long. OK, that reason is a cop-out, but what you often don't appreciate when thinking about today's major religions is just how long they took to establish themselves. When Christianity was originally founded, it was a small, desperate group of folks who assumed that the end of the world was nigh, and their religion was basically a big coordinated group hug to blunt the pain. I should disclaim that this view of early Christianity is based on what I remember from one lecture of Medieval history I took in 2002. The point being, if Christianity was starting today, it would be viewed as something on par with Heaven's Gate.
Any religion is freaky, I think, until it's around long enough that it becomes embedded into the very fabric of society. And then it's almost impossible to get rid of, no matter how many wars are fought in its name, how many people's lives are disrupted, ended, or repressed because of its influence on people's actions. The durability of religion's structure is what gives it strength. People need structure, and guidance, and a way to confront their fears about the meaning of life and death. Not everyone deals with these issues through religion. But for those who do, and I'm talking about people who really need it, not simply to fill a bourgeois void but to make their life bearable, discussing religion on it merits in the way most secular, educated people do doesn't make any sense. It's like trying to tell someone that they should ditch their car because the engine is giving off noxious fumes. You may be right, but without the car, the person might not be able to live at all. In this sense, religion is like a big exurb, infinitely contradictory and expanding, creating its own momentum and reality as it grows, to the befuddlement and dismay of others looking in from the outside.
Of course, discussing religion in the way that most fervently religious people do with secular, educated people doesn't do that much either. If religion isn't your bag, then great, fine. But if you find yourself frustrated by its presence, not sure why its still around, then at least know that it survives for good reason. In fact, believers will outlast non-believers, because when time gets tough, reason generally breaks down and religion holds most of the cards. There's a reason the Age of Enlightenment roughly coincided with the Industrial Revolution. Secularism and the dominance of ideas is a luxury borne of leisure time and material comfort.
As someone who is affiliated with a religion, I can say that it's nice knowing that there are people around me whose lives are woven from the same fabric as mine. And as someone on the inside (kind of), I can tell you that religion, while subject of massive amount of inertia, can change. Everyone has their opinions of which religions are good, or bad, but what makes them good or bad is rarely the religion itself. All religions have good and bad points, and because they are powerful are subject to abuse. But I can also tell you that inside every religion are people whose desire for the things religion provides transcend religion itself. It's the person who changes religion while seeking hope and meaning in their life. Religion as a whole surrounds that, provides structure, and sometimes blocks out the fumes.
Most religions are extremely old. There are numerous really good reasons for this. Ever tried starting your own religion? I bet you had fun being called a cult leader. You'd think it would be an easier task, since your main competition wears funny hats and/or frequently engages in fear-mongering. Not to mention the lame camps and frequent hostility to art. It's easy to conclude, even without starting your own religion, that a lack of any religion of all is a superior alternative to this.
Which begs the question, why is there any religion anymore, since it's so obviously outmoded? That brings me to suggest another reason for why religions are really old - because they've survived for so long. OK, that reason is a cop-out, but what you often don't appreciate when thinking about today's major religions is just how long they took to establish themselves. When Christianity was originally founded, it was a small, desperate group of folks who assumed that the end of the world was nigh, and their religion was basically a big coordinated group hug to blunt the pain. I should disclaim that this view of early Christianity is based on what I remember from one lecture of Medieval history I took in 2002. The point being, if Christianity was starting today, it would be viewed as something on par with Heaven's Gate.
Any religion is freaky, I think, until it's around long enough that it becomes embedded into the very fabric of society. And then it's almost impossible to get rid of, no matter how many wars are fought in its name, how many people's lives are disrupted, ended, or repressed because of its influence on people's actions. The durability of religion's structure is what gives it strength. People need structure, and guidance, and a way to confront their fears about the meaning of life and death. Not everyone deals with these issues through religion. But for those who do, and I'm talking about people who really need it, not simply to fill a bourgeois void but to make their life bearable, discussing religion on it merits in the way most secular, educated people do doesn't make any sense. It's like trying to tell someone that they should ditch their car because the engine is giving off noxious fumes. You may be right, but without the car, the person might not be able to live at all. In this sense, religion is like a big exurb, infinitely contradictory and expanding, creating its own momentum and reality as it grows, to the befuddlement and dismay of others looking in from the outside.
Of course, discussing religion in the way that most fervently religious people do with secular, educated people doesn't do that much either. If religion isn't your bag, then great, fine. But if you find yourself frustrated by its presence, not sure why its still around, then at least know that it survives for good reason. In fact, believers will outlast non-believers, because when time gets tough, reason generally breaks down and religion holds most of the cards. There's a reason the Age of Enlightenment roughly coincided with the Industrial Revolution. Secularism and the dominance of ideas is a luxury borne of leisure time and material comfort.
As someone who is affiliated with a religion, I can say that it's nice knowing that there are people around me whose lives are woven from the same fabric as mine. And as someone on the inside (kind of), I can tell you that religion, while subject of massive amount of inertia, can change. Everyone has their opinions of which religions are good, or bad, but what makes them good or bad is rarely the religion itself. All religions have good and bad points, and because they are powerful are subject to abuse. But I can also tell you that inside every religion are people whose desire for the things religion provides transcend religion itself. It's the person who changes religion while seeking hope and meaning in their life. Religion as a whole surrounds that, provides structure, and sometimes blocks out the fumes.
Last Sunday Erin was talking about this blog, www.stuffwhitepeoplelike.com. It talks about things that white people like, with fairly accurate precision (for example, to the post about Michel Gondry, a screenshot of the DVD of his collected works was added, to which I exclaimed "hey, I HAVE that DVD!"). Later that day, at a different gathering, someone was talking about the band everyone's talking about right now, Vampire Weekend. He observed that it sounded very similar to Graceland. I then decided that I had a subject that would be perfect for the blog. So I wrote it an email:
Dear Stuffwhitepeoplelike,
All white people like the album Graceland. It's by an extremely white
musician, but it also has Ladysmith Black Mombassa, another group
white people like. And a lot of the album is about Africa, and sounds
very worldly. Just a thought.
Keep up the good work!
Gabriel
To which he replied:
Hey,
The new band "Vampire Weekend" sounds like Graceland....I think they are going to be huge.
Thanks for writing in and thanks for reading
I then purchased the album, Vampire Weekend, because I am white. Turns out everyone is correct.
Dear Stuffwhitepeoplelike,
All white people like the album Graceland. It's by an extremely white
musician, but it also has Ladysmith Black Mombassa, another group
white people like. And a lot of the album is about Africa, and sounds
very worldly. Just a thought.
Keep up the good work!
Gabriel
To which he replied:
Hey,
The new band "Vampire Weekend" sounds like Graceland....I think they are going to be huge.
Thanks for writing in and thanks for reading
I then purchased the album, Vampire Weekend, because I am white. Turns out everyone is correct.
6:38 - Wake up, feel tired, reflect on the vicissitudes of jet lag. Fall back asleep.
8:08 - Woken up by phone. It's my mom. I was born at 8:00 AM (C-section, hence the round number). I sound bleary, she explains that she figured I was on East Coast time. I was, but I'm still tired. Wrap up conversation, fall back asleep.
8:47 - Wake up, remember I have to call Tuition Management Systems and inquire about the "last notice" letter I found the night before informing me that I had not re-enrolled for the payment plan this spring. Which I had. Figure it's too early, fall back asleep.
9:03 - Decide it's no use trying to sleep any more, turn on laptop. Still can't log onto the internet. Reflect on the possibility that I might actually buy a new laptop to solve this particular problem, and how stupid that is. Wonder to myself how much power I need to edit video on a computer, decide the new MacBook Air won't cut it. Start surfing the net on my phone, but really just want to make some scrabulous moves, which my phone won't do.
9:42 - Look at thermometer. 51 degrees in my room. Flip on space heater. Drag myself into shower. Reflect, as I have every shower since moving to the basement, on how I must look like Bill Murray in that scene from Lost in Translation when I have to lean over in order to get my head under the shower-head, which sits at eye-level.
10:07 - Dressed, I decide that birthdays mean not having to do errands. Am starving, but find a bag of rice cracker medley under some clothes. Happy birthday, me. Sit and devour.
10:09 - Take my laptop upstairs, hoping that somehow being closer to the router will solve my internet woes. It does not. Eat three fig newtowns, let Max from Food Not Bombs in to cook some food, as he does every wednesday with an assortment of volunteers. Go back downstairs.
10:24 - Finish watching Superbad. I think these movies are funnier when you're not watching by yourself. I laugh out loud at times nevertheless. Pube salad, heh.
11:25 - Take laptop to local cafe. Kelly is working the counter again. She's about 40, looks haggard, is playing 80's music as usual. She must have peaked in high school or something, I judge.
11:32 - Laptop picks up signal at cafe. Yes! Find stream of facebook comments and some myspace comments as well. People still use that site?
12:14 - Am chatting with Jenny, the girl I'm dating at the moment. Her ex-boyfriend manages the coffee shop I'm currently in, so I inquire about Kelly. Jenny conjectures that Kelly is probably on acid at this moment. I feel less judgemental.
1:12 - Kelly's shift ends, but the 80's music does not. Dance mix of Styx's "Come Sail Away" plays. So much for that theory.
1:37 - Software update for iPhone fails. So much for getting the new map application. I was looking forward to that.
2:10 - Phone rings. "Dr. Rabinovich?" the voice asks. Realize it's Jessie trying to call my dad's doctor. "I think you picked the wrong name on the list", I tell her. She puts me on the phone with my dad. Conversation is nice. Happy birthday, me, again.
2:45 - Getting hungry, order the mediterranean hummus plate. It costs $6.95, gulp. Usually I run out of pita before eating all the hummus and babaganoush. This time the reverse happens.
3:40 - I think this new iTunes update will allow my phone to synch all my music without freezing, though it will take a few hours because my USB port is an old model. On balance, though, happy birthday, me, again.
8:08 - Woken up by phone. It's my mom. I was born at 8:00 AM (C-section, hence the round number). I sound bleary, she explains that she figured I was on East Coast time. I was, but I'm still tired. Wrap up conversation, fall back asleep.
8:47 - Wake up, remember I have to call Tuition Management Systems and inquire about the "last notice" letter I found the night before informing me that I had not re-enrolled for the payment plan this spring. Which I had. Figure it's too early, fall back asleep.
9:03 - Decide it's no use trying to sleep any more, turn on laptop. Still can't log onto the internet. Reflect on the possibility that I might actually buy a new laptop to solve this particular problem, and how stupid that is. Wonder to myself how much power I need to edit video on a computer, decide the new MacBook Air won't cut it. Start surfing the net on my phone, but really just want to make some scrabulous moves, which my phone won't do.
9:42 - Look at thermometer. 51 degrees in my room. Flip on space heater. Drag myself into shower. Reflect, as I have every shower since moving to the basement, on how I must look like Bill Murray in that scene from Lost in Translation when I have to lean over in order to get my head under the shower-head, which sits at eye-level.
10:07 - Dressed, I decide that birthdays mean not having to do errands. Am starving, but find a bag of rice cracker medley under some clothes. Happy birthday, me. Sit and devour.
10:09 - Take my laptop upstairs, hoping that somehow being closer to the router will solve my internet woes. It does not. Eat three fig newtowns, let Max from Food Not Bombs in to cook some food, as he does every wednesday with an assortment of volunteers. Go back downstairs.
10:24 - Finish watching Superbad. I think these movies are funnier when you're not watching by yourself. I laugh out loud at times nevertheless. Pube salad, heh.
11:25 - Take laptop to local cafe. Kelly is working the counter again. She's about 40, looks haggard, is playing 80's music as usual. She must have peaked in high school or something, I judge.
11:32 - Laptop picks up signal at cafe. Yes! Find stream of facebook comments and some myspace comments as well. People still use that site?
12:14 - Am chatting with Jenny, the girl I'm dating at the moment. Her ex-boyfriend manages the coffee shop I'm currently in, so I inquire about Kelly. Jenny conjectures that Kelly is probably on acid at this moment. I feel less judgemental.
1:12 - Kelly's shift ends, but the 80's music does not. Dance mix of Styx's "Come Sail Away" plays. So much for that theory.
1:37 - Software update for iPhone fails. So much for getting the new map application. I was looking forward to that.
2:10 - Phone rings. "Dr. Rabinovich?" the voice asks. Realize it's Jessie trying to call my dad's doctor. "I think you picked the wrong name on the list", I tell her. She puts me on the phone with my dad. Conversation is nice. Happy birthday, me, again.
2:45 - Getting hungry, order the mediterranean hummus plate. It costs $6.95, gulp. Usually I run out of pita before eating all the hummus and babaganoush. This time the reverse happens.
3:40 - I think this new iTunes update will allow my phone to synch all my music without freezing, though it will take a few hours because my USB port is an old model. On balance, though, happy birthday, me, again.
I walked through the tenderloin at 12:30 last night with such ferocity, after missing the last BART train, that I rubbed off some of the skin on the ball of my left foot. Ouch. Suzanne from high school and I were racing to reach Chris from high school (we had tried to catch BART together), still at the bar on California and Leavenworth, who offered to drive us home to the east bay, even though he was heading to Marin. By the time we got (or limped, in my case) back, certain members of our drinking party had gone from mildly buzzed to fairly soused. You know who you are, beardy.
Speaking of which, my beard is coming in to the best of its abilities. It doesn't "connect", but my brother pointed out that it looked like I did that on purpose. Sweet. I hung out with my grandparents for two hours on Wednesday (in addition to my dad), and nary a word was said about the state of my face. That is, until my aunt Nancy got in (she's staying with my grandfolks - she teaches in Orange County, and is on vacation). The first words out of her mouth upon seeing me were "what, did you lose your razor?". I'll also add that about three years ago, my grandmother once told me my hair looked cool after my mom gave me shit about it when the three of us were sitting on a footbridge in Tahoe.
Speaking of my grandparents, I saw them yet again yesterday at their new residence, the Rhoda Goldman Plaza in the Western Addition. The dinner we had with them was bland, soft, and served in a dining room whose thermostat was cranked up to 78. Ah, old people.
Speaking of old, the Nomad Cafe has been blasting 80's hits all afternoon (the location I currently find myself in, probably reflecting the age of the woman working the counter. What does it say about me that I see someone like that and wonder, what happens when she hits middle age and starts developing health problem. Will she still be serving coffee? I blame astrology. It is Capricorn season, after all, which is what I am. We're practical. What? If that's problematic, just wait a month until Aquarius seasons starts. Who am I even arguing with, anyway? Astrology is dumb. And interesting, in the way patterns are interesting.
Speaking of which, my beard is coming in to the best of its abilities. It doesn't "connect", but my brother pointed out that it looked like I did that on purpose. Sweet. I hung out with my grandparents for two hours on Wednesday (in addition to my dad), and nary a word was said about the state of my face. That is, until my aunt Nancy got in (she's staying with my grandfolks - she teaches in Orange County, and is on vacation). The first words out of her mouth upon seeing me were "what, did you lose your razor?". I'll also add that about three years ago, my grandmother once told me my hair looked cool after my mom gave me shit about it when the three of us were sitting on a footbridge in Tahoe.
Speaking of my grandparents, I saw them yet again yesterday at their new residence, the Rhoda Goldman Plaza in the Western Addition. The dinner we had with them was bland, soft, and served in a dining room whose thermostat was cranked up to 78. Ah, old people.
Speaking of old, the Nomad Cafe has been blasting 80's hits all afternoon (the location I currently find myself in, probably reflecting the age of the woman working the counter. What does it say about me that I see someone like that and wonder, what happens when she hits middle age and starts developing health problem. Will she still be serving coffee? I blame astrology. It is Capricorn season, after all, which is what I am. We're practical. What? If that's problematic, just wait a month until Aquarius seasons starts. Who am I even arguing with, anyway? Astrology is dumb. And interesting, in the way patterns are interesting.
The other day I went over to my parent's condo in the city, and asked my dad if he'd like to talk to the video camera. When I came through the door of their condo, I was met by an alarm. Jessie, the woman my mom hired to look after my dad during the day met me with an expression of horror that quickly turned to relief. "Oh," she said, "it's you. Hi Gabe." She had just turned on the door alarm system in case my dad decided to "escape" again, like he did on Monday (he went to visit his friend's office downtown, which wasn't open). Jessie informed me that my dad was in a confused state, and could be found in the back of the condo. He was in the office it turned out, and when he saw me he addressed me as "Gabi", as in the Israeli man my parents met in the 70's, after whom I'm named. He's never done that before, and it was kind of funny. He was looking at pictures of me accepting a medal in high school (I got an arts scholarship once, which allowed me to go to this state-sponsored art camp down at Cal Arts in Valencia).
"What are you doing?" I asked.
"I'm looking at these pictures, trying to inject a sense of reality into them", he replied.
"What do you mean?"
"Well, look at all these kids, up to no good."
"What do you mean?"
"All those cigarettes in their hands, what are they doing?"
"But dad, no one in this picture is smoking."
"How do you figure that?"
"Well dad," I pointed to myself in the picture, "I was there. You were there too."
"Oh."
Though remaining somewhat incredulous, I think he accepted my logic, because he put the picture down and started fumbling with this little metal bracket and walking over to the sliding glass door that separates the office from the back deck.
"What are you doing, Dad?"
"I'm trying to lock this door."
"But it already has a lock." I demonstrated by locking the door, which had been open.
"That might not be enough."
I had this idea to make a video about my dad, to try and figure out how one copes with a disease like the one he has. Between the Parkinson's and dementia (the latter being caused by both the disease itself and the medications for the movement part), he's in an almost constant state of confusion, mild paranoia, and is sometimes immobilized (or turned to stone, as he likes to say). He was recently put on a different regimen of drugs, the effect of which has been to improve his movement at the expense of some of the limited sanity he still retains. It's gotten to a point where he might not even be aware of how far his ability to process stimuli and thought have slipped. I always said that what makes his disease arguably worse than Alzheimer's is the extent to which he is aware of what he has lost. Perhaps he's losing that awareness, which is probably a good thing, except now he has been complaining of being treated like a prisoner, unsure of why he can't go anywhere by himself.
I already suspected that interviewing him might be difficult, given his inability to stay on topic without drifting away and forget what the original point was. If you want to keep him on target when answering broad questions like, "how are you coping with everything?", it's necessary to constantly interrupt him in order to steer his train of thought, to the point where you're doing most of the talking. Otherwise, he'll go off on tangents, and then want to get up and run to his library to look something up that he mentioned, that doesn't have much to do with the question. It snowballs. My father would much prefer to race around the house, picking up objects and talking about them, which is not what I had in mind. An undercurrent of anger is cropping up as well lately, with him taking many opportunities to bad-mouth his former neurologist at UCSF (who was, admittedly, a pompous jerk), even though he seemed to be unclear as to what kind of doctor he was at times (he mentioned said doctor as being worshiped in nephrology circles, which is my dad's specialty, not the doctor's. On the other hand, he kept veering into talking about how great and smart I was, which I tried to discourage, almost out of embarrassment ("thanks, but we want to talk about you, not me.").
I wouldn't have decided to do this if I didn't think there was some silver lining, somewhere in this story. After filming him the other day, I'm less sure of where that will be. I don't think the situation is hopeless, but the camera brought into sharp relief the extent to which he's lost his mind. Not completely, but pretty far.
It's not like I had illusions about this. For many years it was possible to pretend that things were ok, even good given the circumstances. Or to put it another way, it was possible to treat him like he was normal. Just a couple years ago he could come down to where I worked, by himself, and have lunch with me. Now he can't even open the door to the condo without an alarm coming off.
Then, about a year and a half ago, he came to my housewarming party. He was holding a dirty piece of paper that he found on the street, advertising the Hardly Strictly Bluegrass show that had just happened in Golden Gate Park (I lived by the park then). I asked him why he had it, and he talked about wanting to show it to someone, I think my friend Eileen who was coming. My mom gave me this look and said "he's really confused today". He was hungry and was eyeing a persimmon, which I gave him. He was unsure of how to eat it, so I told him to just eat it like an apple. He took a couple bites, and then put it back in the fruit bowl, and walked away. That's when the cognitive shit hit the fan for me.
I've been coming to grips with this ever since then. The father I knew growing up, which I now realize I didn't know all too well, is nevertheless gone. This coping process has enabled me to stop fearing the disease, and to become comfortable with the notion that all good things in life can be taken away, from anyone. There are many reasons why I wanted to make a video, not the least of which is to embrace the role of disease in my life and learn about it. If I happen to make an award-winning documentary that propels me into the UCSF School of Medicine and gets me a sweet book deal to write about my experiences, well, that wouldn't be so bad either. The point being, there are a number of things I need to do in my life, and this ties them all together.
It goes against the grain of human instinct to know that misfortune is arbitrary. Mostly, it flies in the face of the narrative that one imposes upon life, for sanity's sake. My dad sometimes talks of being "cheated" out of the good life that he once had. I think my mistake in filming the other day was to try and impose order in the hopes of gleaning the uplifting narrative I so desperately desire, and then being disappointed that I couldn't make it happen. Next time I'll let him do whatever he wants and simply film him, for hours on end if necessary. It's pretty much all I can do at this point.
"What are you doing?" I asked.
"I'm looking at these pictures, trying to inject a sense of reality into them", he replied.
"What do you mean?"
"Well, look at all these kids, up to no good."
"What do you mean?"
"All those cigarettes in their hands, what are they doing?"
"But dad, no one in this picture is smoking."
"How do you figure that?"
"Well dad," I pointed to myself in the picture, "I was there. You were there too."
"Oh."
Though remaining somewhat incredulous, I think he accepted my logic, because he put the picture down and started fumbling with this little metal bracket and walking over to the sliding glass door that separates the office from the back deck.
"What are you doing, Dad?"
"I'm trying to lock this door."
"But it already has a lock." I demonstrated by locking the door, which had been open.
"That might not be enough."
I had this idea to make a video about my dad, to try and figure out how one copes with a disease like the one he has. Between the Parkinson's and dementia (the latter being caused by both the disease itself and the medications for the movement part), he's in an almost constant state of confusion, mild paranoia, and is sometimes immobilized (or turned to stone, as he likes to say). He was recently put on a different regimen of drugs, the effect of which has been to improve his movement at the expense of some of the limited sanity he still retains. It's gotten to a point where he might not even be aware of how far his ability to process stimuli and thought have slipped. I always said that what makes his disease arguably worse than Alzheimer's is the extent to which he is aware of what he has lost. Perhaps he's losing that awareness, which is probably a good thing, except now he has been complaining of being treated like a prisoner, unsure of why he can't go anywhere by himself.
I already suspected that interviewing him might be difficult, given his inability to stay on topic without drifting away and forget what the original point was. If you want to keep him on target when answering broad questions like, "how are you coping with everything?", it's necessary to constantly interrupt him in order to steer his train of thought, to the point where you're doing most of the talking. Otherwise, he'll go off on tangents, and then want to get up and run to his library to look something up that he mentioned, that doesn't have much to do with the question. It snowballs. My father would much prefer to race around the house, picking up objects and talking about them, which is not what I had in mind. An undercurrent of anger is cropping up as well lately, with him taking many opportunities to bad-mouth his former neurologist at UCSF (who was, admittedly, a pompous jerk), even though he seemed to be unclear as to what kind of doctor he was at times (he mentioned said doctor as being worshiped in nephrology circles, which is my dad's specialty, not the doctor's. On the other hand, he kept veering into talking about how great and smart I was, which I tried to discourage, almost out of embarrassment ("thanks, but we want to talk about you, not me.").
I wouldn't have decided to do this if I didn't think there was some silver lining, somewhere in this story. After filming him the other day, I'm less sure of where that will be. I don't think the situation is hopeless, but the camera brought into sharp relief the extent to which he's lost his mind. Not completely, but pretty far.
It's not like I had illusions about this. For many years it was possible to pretend that things were ok, even good given the circumstances. Or to put it another way, it was possible to treat him like he was normal. Just a couple years ago he could come down to where I worked, by himself, and have lunch with me. Now he can't even open the door to the condo without an alarm coming off.
Then, about a year and a half ago, he came to my housewarming party. He was holding a dirty piece of paper that he found on the street, advertising the Hardly Strictly Bluegrass show that had just happened in Golden Gate Park (I lived by the park then). I asked him why he had it, and he talked about wanting to show it to someone, I think my friend Eileen who was coming. My mom gave me this look and said "he's really confused today". He was hungry and was eyeing a persimmon, which I gave him. He was unsure of how to eat it, so I told him to just eat it like an apple. He took a couple bites, and then put it back in the fruit bowl, and walked away. That's when the cognitive shit hit the fan for me.
I've been coming to grips with this ever since then. The father I knew growing up, which I now realize I didn't know all too well, is nevertheless gone. This coping process has enabled me to stop fearing the disease, and to become comfortable with the notion that all good things in life can be taken away, from anyone. There are many reasons why I wanted to make a video, not the least of which is to embrace the role of disease in my life and learn about it. If I happen to make an award-winning documentary that propels me into the UCSF School of Medicine and gets me a sweet book deal to write about my experiences, well, that wouldn't be so bad either. The point being, there are a number of things I need to do in my life, and this ties them all together.
It goes against the grain of human instinct to know that misfortune is arbitrary. Mostly, it flies in the face of the narrative that one imposes upon life, for sanity's sake. My dad sometimes talks of being "cheated" out of the good life that he once had. I think my mistake in filming the other day was to try and impose order in the hopes of gleaning the uplifting narrative I so desperately desire, and then being disappointed that I couldn't make it happen. Next time I'll let him do whatever he wants and simply film him, for hours on end if necessary. It's pretty much all I can do at this point.