Though my memory still seems to be slipping, my focus is definitely improving. I was recently able to stay focused long enough to create a complex interaction of Google calendar events that allowed me to accurately post whether to expect income in the current week, based on a set of cycling events that are independent of each other, but contribute to the probability of receiving money.
I STILL, in the 34th month since my accident, do not have disability income. I am supported by a combination of regular gifts from family and a constant stream of unpredictable anonymous gifts, which I supplement by taking out retirement money at an alarming rate, since there is little likelihood I will ever be able to restore what I withdrew.
I remain unable to do PROFITABLE work. There's a difference between being able to work, and being able to work at a rate that makes employing me profitable for an employer who must pay minimum wage, when I frequently am not capable of putting in more than two hours of profitable work across twenty-four hours. I have no possibility or capability of supporting a family, or even myself at this point, and having been in this position for long enough that statistics suggest I'm as good as I'm going to get is frustrating, but I'm not without hope of beating those statistics some day.
Not being able to consistently stay focused for periods of time long enough to get things accomplished is my greatest disability. I can usually appear fine to others for a short period at a time, and I always try to do my best every moment of every day. In certain situations in which I am working with someone else who IS focused, I can stay at a job and improve their productivity enough to consider that work profitable, but I don't know many jobs that provide "focus coaching" throughout the work day, and some days my focus gets so bad that it leaves me in a confused state of mind that would make it dangerous for me to be away from home in that condition.
But our Social Security Disability system was not designed to recognize and deal with my kind of situation. To them, disability is an "on or off" situation, and focus tests tend to produce false results, because the test itself acts as a coach to keep me on-track. Left to my own devices, I start the day making a work list, get two or three things accomplished, and then hit an item that forces me to endure distractions that in combination with limited of short-term memory put me in a cycle of pointless repetitive efforts, resulting in hours disappearing from the clock as I aimlessly wander from one distraction to another, feeling more and more fatigued, and eventually believing I finished something because I remember starting it.
It is amazing how many evenings I go to bed feeling satisfied with a day well spent, only to awaken the next morning with no recollection of doing anything the previous day, and no evidence that I DID do anything!
Life at this moment is frustrating!
(and since limited event memory means "now" is always the only reality I know, it feels as if life is always like this, but I am intelligent enough to know from reading my own notes that what I feel is not necessarily real)
(Graphic was adapted from an image found at http://www.craveonline.com/lifestyle/articles/590027-are-we-there-yet-never-lose-luggage-again)
A major life event happened to me in June of 2011 when a car hit my bicycle. Initially, I was not aware of the extent of the damage; however since the accident, I have continued declining. As I "recover" from old symptoms, new symptoms continue to take their place. In spite of the advice from medical professionals, I continue to hope for a full recovery.
I am developing a prototype resources website. Please review my plans and make suggestions.
Monday, January 20, 2014
Saturday, January 18, 2014
The emptiness of memories lost
Just now, I glanced at a Facebook post I made on Father's day this year in which I said, "saw 'Man of Steel'" and I thought, I'd like to see that movie some day. Then I realized as I read the post, that I HAVE seen it, with my daughter (it was her Father's day gift to me). I remember a while back that I embarrassed myself by commenting that I'd like to see that move ("Man of Steel") in front of her. At least then, I could assure her that I remembered her taking me to the movie, I just didn't recall the movie. Now I don't even remember those images that enabled me to say I remembered her taking me to the movie. I just remember the fact that she did, as if I read it in a book.
No recollection remains, and I find that intolerable not to remember special events in my own life except as footnotes I read on a calendar. It feels as if life stopped for me on the day that car hit my bicycle, and I woke the next morning in the hospital. I almost said, "with no recollection of the day before," but that's not true. I remember reading something I wrote, that at the time I remembered what had happened when I woke up. I just don't remember remembering.
It feels as if I am not experiencing my own life! I'm just reading about it in a book, yet there's a difference. When I read a story in a book, I imagine the events. No images form in my mind when I read about my own life. It's as if the hole where my memory should be, blocks me from re-imagining the memory.
Please pray that I find a way to overcome this complete loss of memory over time.
The emptiness left by lost memories feels intolerable.
It concerns me that this post appears so dark, when my actual attitude is hopeful and not at all depressed (Ok, maybe a little depressed, but not the dark lingering kind of depression, but rather a passing sense of loss). I suppose this description of my experience with memory loss is a bit depressing to read, and I chose this graphic by Marie Sivak (Sivak, In the make: Studio visits with West coast artists) to represent a life trapped in the binding of a book. But don't read depression when you read my description of emptiness. Yes, I feel loss, but I also feel hope. Maybe I'll recover some day. Maybe I'll find a way to accommodate this loss with some other way to remember. I am NOT defeated in any way.
Reference:
Sivak, M. (Photographer). (2014, January ). In the make: Studio visits with West coast artists [Print Photo]. Retrieved from http://inthemake.com/marie-sivak/
No recollection remains, and I find that intolerable not to remember special events in my own life except as footnotes I read on a calendar. It feels as if life stopped for me on the day that car hit my bicycle, and I woke the next morning in the hospital. I almost said, "with no recollection of the day before," but that's not true. I remember reading something I wrote, that at the time I remembered what had happened when I woke up. I just don't remember remembering.
It feels as if I am not experiencing my own life! I'm just reading about it in a book, yet there's a difference. When I read a story in a book, I imagine the events. No images form in my mind when I read about my own life. It's as if the hole where my memory should be, blocks me from re-imagining the memory.
Please pray that I find a way to overcome this complete loss of memory over time.
The emptiness left by lost memories feels intolerable.
It concerns me that this post appears so dark, when my actual attitude is hopeful and not at all depressed (Ok, maybe a little depressed, but not the dark lingering kind of depression, but rather a passing sense of loss). I suppose this description of my experience with memory loss is a bit depressing to read, and I chose this graphic by Marie Sivak (Sivak, In the make: Studio visits with West coast artists) to represent a life trapped in the binding of a book. But don't read depression when you read my description of emptiness. Yes, I feel loss, but I also feel hope. Maybe I'll recover some day. Maybe I'll find a way to accommodate this loss with some other way to remember. I am NOT defeated in any way.
Reference:
Sivak, M. (Photographer). (2014, January ). In the make: Studio visits with West coast artists [Print Photo]. Retrieved from http://inthemake.com/marie-sivak/
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