Influenza stormed her way out of the cold and into my house during the last week. I missed a post due to her home-invasion, and though she has worn out her welcome, I have not quite peeled myself off the sheets, nor has the ny-quil fog lifted from my aching head, to allow me to write anything very insightful.
Instead, I'd like to share an article recently published in the New York Times by Gina Kolata about two new tests that may be helpful in determining risk and diagnosis of Alzheimer's Disease.
http://www.nytimes.com/2011/01/19/health/research/19alzheimers.html?_r=2&hp
Sunday, February 6, 2011
Sunday, January 23, 2011
Waves of Inspiration
I often find myself entrenched in themes. For instance, finishing Susan Casey's The Wave rounds out the triumvirate of nautical books I've been wading through for the past couple of months. While reading about freak hundred foot waves and the blonde beefcakes who risk life and limb to surf them is exciting, I've still been waiting for a surge of inspiration to carry me into the brunt of this project. I expect that it will get easier once the research and volunteer work expand. But in the meantime, another one my accidental media themes has come to my rescue.
Live streaming of obscure documentaries has allowed me stumble onto some pretty fascinating subjects. I've now come across a number of really great documentaries questioning the legitimacy of visual art, among them, My Kid Could Paint That, and Who the Fuck is Jackson Pollack?. Joining the queue this week was a documentary called Exit Through the Gift Shop, by the mysterious and prolific British street artist Banksy. Once intended to trace the history of street art, the film transforms into a documentary about Thierry Guetta, the eccentric Frenchman who filmed thousands of hours of midnight graffiti excursions by the world's greatest street artists, and who eventually transforms himself into the questionable Mr. Brainwash.
What does any of this have to do with Alzheimer's, you ask? Well, what I learned about this man is that his story begins with an obsession over capturing memories. Having lost his mother at a young age, he lost a lifetime of memories with her and felt compelled, the moment he got his hands on a video camera, to record as many moments from his family's life as possible. One obsession led to another and he was soon addicted to the rush of adrenaline in following street artists whose careers teeter on edge of legal. It even brought him to an interrogation room in the bowels of Disneyland after he was caught filming Banksy place an inflatable Guantanamo prisoner into the landscape of Big Thunder Mountain Railroad. The results of all this filming are a little disheartening: hundreds of boxes filled with thousands of unlabeled, unorganized, and unwatched miniDV camcorder tapes. A lifetime of memories, and the entire history of an art movement marked by temporality, sitting in the dark of a Los Angeles garage.
As I've been starting to think about the concept of memory and actively trying to capture memories of my own, a lot of questions have arisen. What do we remember and what do we forget? And why? Who do we remember things for, ourselves or our progeny? Sometimes we share memories with others, and some we keep to ourselves. How much do we really learn from our memories of the past, and how do we embark on creating memories for the future? Remembering and forgetting are completely subconscious acts and we have biological and psychological reasons to do both. Is it possible to change these evolutionary behaviors in our mind? Are there ways to improve your memory? Although memory-loss is one of many changes in the brain while developing Alzheimer's Disease, it can be one of the most wrenching parts of the experience for the loved-ones of an Alzheimer's patient. I'm curious to know what you may think the answers to these questions are, as I explore them myself.
Memories are integral to who we are. They mark the chronology of our experience, the landscape of where we come from, and provide the palette with which we paint an image of how we see ourselves, the lives we've led, the lessons we've learned, and what we have have to say. Our memories may be painted over, knocked down, constructed upon, scrubbed clean, or simply faded away. But whether they sustain a cultural or familial permanence, or even if they lay packed away, untouched in storage, what is most important is that they were made.
Live streaming of obscure documentaries has allowed me stumble onto some pretty fascinating subjects. I've now come across a number of really great documentaries questioning the legitimacy of visual art, among them, My Kid Could Paint That, and Who the Fuck is Jackson Pollack?. Joining the queue this week was a documentary called Exit Through the Gift Shop, by the mysterious and prolific British street artist Banksy. Once intended to trace the history of street art, the film transforms into a documentary about Thierry Guetta, the eccentric Frenchman who filmed thousands of hours of midnight graffiti excursions by the world's greatest street artists, and who eventually transforms himself into the questionable Mr. Brainwash.
What does any of this have to do with Alzheimer's, you ask? Well, what I learned about this man is that his story begins with an obsession over capturing memories. Having lost his mother at a young age, he lost a lifetime of memories with her and felt compelled, the moment he got his hands on a video camera, to record as many moments from his family's life as possible. One obsession led to another and he was soon addicted to the rush of adrenaline in following street artists whose careers teeter on edge of legal. It even brought him to an interrogation room in the bowels of Disneyland after he was caught filming Banksy place an inflatable Guantanamo prisoner into the landscape of Big Thunder Mountain Railroad. The results of all this filming are a little disheartening: hundreds of boxes filled with thousands of unlabeled, unorganized, and unwatched miniDV camcorder tapes. A lifetime of memories, and the entire history of an art movement marked by temporality, sitting in the dark of a Los Angeles garage.
As I've been starting to think about the concept of memory and actively trying to capture memories of my own, a lot of questions have arisen. What do we remember and what do we forget? And why? Who do we remember things for, ourselves or our progeny? Sometimes we share memories with others, and some we keep to ourselves. How much do we really learn from our memories of the past, and how do we embark on creating memories for the future? Remembering and forgetting are completely subconscious acts and we have biological and psychological reasons to do both. Is it possible to change these evolutionary behaviors in our mind? Are there ways to improve your memory? Although memory-loss is one of many changes in the brain while developing Alzheimer's Disease, it can be one of the most wrenching parts of the experience for the loved-ones of an Alzheimer's patient. I'm curious to know what you may think the answers to these questions are, as I explore them myself.
Memories are integral to who we are. They mark the chronology of our experience, the landscape of where we come from, and provide the palette with which we paint an image of how we see ourselves, the lives we've led, the lessons we've learned, and what we have have to say. Our memories may be painted over, knocked down, constructed upon, scrubbed clean, or simply faded away. But whether they sustain a cultural or familial permanence, or even if they lay packed away, untouched in storage, what is most important is that they were made.
Sunday, January 16, 2011
It's a Slow Start
The last two weeks have marked a period of transition. I've joined the real world again after sinking into the social abyss during the pajama-clad holiday break. Getting back to work, back to dishes, laundry, and meal-planning nearly backed me over the cliff of forgetting to do anything regarding this project. Happily, I found time to start my coming out into the local community of support around Alzheimer's and setting myself up to start getting involved. And I've already got a number of things on my plate!
Things on my calendar:
In two weeks I'll be going to a volunteer orientation meeting for the Massachusetts/New Hampshire Chapter of the Alzheimer's Association.
I've registered to participate in the Walk To End Alzheimer's Event in Cambridge, MA in September. I set an initial donation goal of $500.00 and will start plugging that donation opportunity within the next couple of weeks. I'd love to find some other people to walk with me (Mom & Aunt Cindy - want to come to Boston in September and walk 6 miles with me?) http://alzwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=456588&supid=319550266
In February, I'll be attending the Alzheimer's Action Day Event at the Massachusetts State House, and hope to find many other ways to get involved.
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Hopefully these events will start giving me more experiences to write about and feed the creative process of starting to develop the project. The fact that I'm remembering to take the first baby steps towards making things happen is a good sign.
Things on my calendar:
In two weeks I'll be going to a volunteer orientation meeting for the Massachusetts/New Hampshire Chapter of the Alzheimer's Association.
I've registered to participate in the Walk To End Alzheimer's Event in Cambridge, MA in September. I set an initial donation goal of $500.00 and will start plugging that donation opportunity within the next couple of weeks. I'd love to find some other people to walk with me (Mom & Aunt Cindy - want to come to Boston in September and walk 6 miles with me?) http://alzwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=456588&supid=319550266
In February, I'll be attending the Alzheimer's Action Day Event at the Massachusetts State House, and hope to find many other ways to get involved.
-----------
Hopefully these events will start giving me more experiences to write about and feed the creative process of starting to develop the project. The fact that I'm remembering to take the first baby steps towards making things happen is a good sign.
Tuesday, January 4, 2011
Getting a Move On...
I have met the Great and Terrible Blog Spirit of Regret in what I'm sure will be the first of many moments of doubt. After the initial sense of pride I felt over setting this up, I spent a quality 24-hours cursing myself for not only starting this project in the first place, but for trapping myself within the boundaries of public humiliation if I fail. I'll just have to find ways to remind myself that the whole idea is for me learn about myself, my family, and the challenges and questions that arise from the subject, as well as engaging in the project itself. As long as I learn something, it can't be a failure.
I called my mom after my first post and asked her to look at it. I had mentioned to her a couple of years ago, that I had thought about doing some kind of theatre project about Alzheimer's, but we hadn't talked about it since, and I hadn't told her I was going to start now. When she called after she read it, her voice sounded wary, and she overused vague descriptors like 'ambitious' and 'interesting'. I didn't feel reassured, a very strange feeling for me, having never received a note of disapproval or lack of enthusiasm from my parents about what I'm working on.
We had a difficult conversation. In my rush of enthusiasm after outlining the project, starting it up, and announcing it to the world, I had not for one moment considered how anyone in my family would feel when they found out about it. More accurately, and worse, I probably had thought about it briefly, but then ignored my better judgements. This was a mistake.
It's been just over a year since my grandmother passed away, and it's hard to remember that we all grieve and negotiate with the concept of death in our own way. In the beginning of the conversation with my mom, I felt that she found the project disrespectful to my grandmother in some way, and that, in turn, hurt her. That was what felt the worst to me, that I had hurt my mom. And believing for a moment that even though I knew I would continue with the project no matter what, that she would want nothing to do with it, or that she wouldn't want to talk to me about what I anticipate will be a huge part of my life for the next year, was difficult.
We talked about the raw emotions that still run rampant after a year, and acknowledged that these conversations will open up new and challenging avenues of our own relationship. My mom corrected my doubts that she believed in the value of the project, and my intentions in doing it, and I'm excited to have her full support in continuing.
I called my mom after my first post and asked her to look at it. I had mentioned to her a couple of years ago, that I had thought about doing some kind of theatre project about Alzheimer's, but we hadn't talked about it since, and I hadn't told her I was going to start now. When she called after she read it, her voice sounded wary, and she overused vague descriptors like 'ambitious' and 'interesting'. I didn't feel reassured, a very strange feeling for me, having never received a note of disapproval or lack of enthusiasm from my parents about what I'm working on.
We had a difficult conversation. In my rush of enthusiasm after outlining the project, starting it up, and announcing it to the world, I had not for one moment considered how anyone in my family would feel when they found out about it. More accurately, and worse, I probably had thought about it briefly, but then ignored my better judgements. This was a mistake.
It's been just over a year since my grandmother passed away, and it's hard to remember that we all grieve and negotiate with the concept of death in our own way. In the beginning of the conversation with my mom, I felt that she found the project disrespectful to my grandmother in some way, and that, in turn, hurt her. That was what felt the worst to me, that I had hurt my mom. And believing for a moment that even though I knew I would continue with the project no matter what, that she would want nothing to do with it, or that she wouldn't want to talk to me about what I anticipate will be a huge part of my life for the next year, was difficult.
We talked about the raw emotions that still run rampant after a year, and acknowledged that these conversations will open up new and challenging avenues of our own relationship. My mom corrected my doubts that she believed in the value of the project, and my intentions in doing it, and I'm excited to have her full support in continuing.
Saturday, January 1, 2011
A Resolution
Today we welcome in a new year ripe with possibility. Three Hundred and Sixty Five days stand at attention, beds made, clothes pressed, and wait for our orders. I am sending my fleet of time on a mission of advocacy, creative development, and personal passion in a long-awaited project.
I FORGET PROJECT
The Goal:
To develop a theatre performance-piece around the subject of Alzheimer's Disease based on the experiences of my Grandmother Eileen and her mother Ruth who both suffered from Alzheimer's Disease, and mine and my Mom's shared fear of one day succumbing to its grasp, in order to answer questions about why we value memory.
The Tasks:
I FORGET PROJECT
The Goal:
To develop a theatre performance-piece around the subject of Alzheimer's Disease based on the experiences of my Grandmother Eileen and her mother Ruth who both suffered from Alzheimer's Disease, and mine and my Mom's shared fear of one day succumbing to its grasp, in order to answer questions about why we value memory.
The Tasks:
- Volunteer weekly with Alzheimer's Disease Care and Support Organizations
- Increase my understanding of the disease through research and interviews
- Create a Memory Journal, as an experiment to see how many personal memories of my life I can record in one year
- Begin writing and workshopping a theatre performance
- Maintain a weekly blog to share my discoveries and questions, and meet other people who are trying to understand this disease
I'm thrilled to embark on this project and hope that it will last beyond the usual six to eight week life expectancy of most New Year's Resolutions. If nothing else, I want to remember my exploration of memory and Alzheimer's Disease, and I will start by writing it down.
Happy New Year!
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