Creative Giving 101

This is a class made for me! I think about this topic all the time, because I believe giving is important to any successful life, yet so often it feels impossible. 

In the past it was medical debt that made things impossible. 

Then it was the intensity of being a full-time student, and trying to get enough exercise in that I would be as healthy physically as I was becoming mentally. 

Then THAT plan fell apart (for the time being) when a driver high on marijuana decided the BEST way to cross an intersection where he had a stop sign and I had the right-of-way, was to floor the gas so he could be through the intersection before I got there. I still have mixed feelings about that kid. I'm alive because he chose to stay with me and call for an ambulance, and he paid dearly for making that choice: he was caught driving while intoxicated, and spent six months in jail because of it. When the prosecutor asked what I wanted. I said, "use your best judgement. He disabled me, because he broke the law, and I will be affected for life by what he did; but you caught him, because he was responsible enough to stick around until I got help, and I'm probably alive because he made that sacrifice. I won't press for any more punishment than you think is appropriate." (I actually felt six months was harsh, but knowing my own judgment was compromised by what he did to me, I did not consider myself to be in a position to say what I thought.)

Now, as I continue to fight to get disability compensation, and at the same time, fight to find ways not to need it, I honestly don't know how I can give right now.

I don't have any money that I can truly call my own. Whatever I would give, was given to me. I have no income, and no possibility of earning an income any time soon.

On the other hand, my ability to earn an income is limited only by the unpredictable nature of my current state. I have many moments when I am more capable than many people, but those moments are followed by mental exhaustion that is so extreme that I am a danger to myself if I don't get rest immediately, and while those naps can happen in less than a half hour sometimes, they often monopolize the rest of the day. In addition, I make mistakes I did not used to make. So even when I exhaust myself mentally, I still have to double-check everything, or the effort will have been meaningless. I have ALMOST no event memory. I cannot be sure of remembering anything unless I write it down, and follow through with making sure that what I have written down has been indexed in such a way that I will be able to find it again. Then I have to write a little bit about every moment of every day, or by the next day, I will have no clue what I did the previous day. Worse, I fail to keep those notes consistently. I'd say at best I create half the notes I should (due to mental fatigue), and then try to recreate the other half after the fact, based on receipts and Facebook notes I have written. That is how I construct my memories that enable me to function in a somewhat "normal" way from day to day.

So, given all that I am experiencing, how can I help others? How can I give?

Right now, I just hope that posts like this one are helpful and inspirational to others. I have big plans for the future, based on the assumption that I will eventually learn ways to compensate better for my deficiencies. I intend to contribute to a network of online resources for other survivors of brain injury. I have drawn so many mind-maps describing how to keep a well-documented library of quality research material, with citations in a database for easy retrieval. I also want to catalog the common false conceptions that cause people to waste time so I can help them avoid those dead ends, some of which ensnared me. I want to present that material in a way that a variety of people in a variety of circumstances can use it. I want to cater to brain-injured people who need pictures and videos. I want to cater to their families and caretakers. I want to summarize important studies in plain language that any adult can understand. I want to summarize the summaries at a kindergarten level. Then I want to take away all the words and just show pictures that illustrate the ideas, and I want to do it over and over with each article. I want to give other brain-injured people the opportunity to contribute to this effort also, because we all need to give as much as we need to receive. Otherwise, it would be like inhaling without ever exhaling. It is just as deadly to receive without giving (disabled or not).

Pray about these thoughts, as I pray about signing up for this class.

It is difficult for me to make commitments right now, because I know with each commitment I make, that I will break more of them than I keep. I'll feel bad about it when it happens, but it's a fact of life for me right now. How do I do this?

A Shot of Confidence Or A Freudian Swype?

(This post was originally on Facebook. I copied and pasted the post, and removed links to protect the privacy of others. I also fixed a typo. I'm posting it here mostly for entertainment, but it also illustrates some of what I do to accommodate my disability from day to day.)

I thought this was funny. I looked up this note specifically because I

could not remember the name of the drug that was injected into my right knee at the doctor's office. When I was at the doctor's office, I used Google Keep to write notes as things were going on. My Android Notepad uses a program called "swype" in place of a keyboard to enter text. With swype, you trace squiggly lines on an image of a keyboard, and the machine figures out what you meant, usually very accurately, but with enough mistakes that I get in trouble if I just post what I swype without proof-reading. This particular selection is a portion of the notes I swyped on my notepad while I was at the doctor's office a couple of weeks ago:

4:30 I was sent to get my knees x-rayed. I am to return to Dr Y's office when the x-rays are done. Be sure to mention Dr K's recommendation to have "goo" injected. 

5:00 BACK IN Dr Y's office.
He gave me a shot of confidence in my right knee. Apparently they don't do both knees at once.
An appointment summary report not available, but I can request one in a few days, if I remember. (Notice the subtitle of this book is "Injecting With Confidence")

I wonder if there is such a thing as a Freudian swype?
There is now. I just invented it!

17 hours ago · Edited · Like · 4

An informal email I sent today....

(I have significantly altered this letter from its original form, so that it hardly resembles the letter I cut and pasted here originally. I purposely removed specific details that would identify the recipient. After I published this letter, I noticed a few statements that were not true, not because they were intentionally false, but because the way I stated them implied things that were not true. I think I have corrected all errors now, but if I find more, I'll correct those also.)

Please forgive me for not remembering why I know you. 

I survived a brain injury caused when a car hit me while I was bicycling for exercise. I normally get about two hours of productive work between naps. I can usually limit naps to under an hour, but not always. I have some days when I never get beyond a state of semi-consciousness in which I have no recollection of my activities later, even though I may have talked with people and made commitments during those periods. I usually have periods of time each day when I appear awake, but I cannot account for the amount of time that has passed. On two occasions that I recall, time seemed to "jump" several seconds at a time. I think that may depend on where I am and what activity is going on around me. More often, I experience it as a television show ends moments after I started it. Often I will restart the show and find parts of the show familiar, even though I don't recall watching it. The most extreme cases like this that I recall, (again I can think of only two examples) I lost a couple of days, with no memory of what happened, apparently because I was never really awake.

I had one period from January 2012 to mid-March 2012 that I cannot recall at all, yet I have records of letters I wrote, and work lists I made. Most of what I wrote during that period sounds coherent, but some of what I wrote is meaningless to me now.

With these experiences happening all the time, I cannot in good faith ask someone to hire me. What kind of job can I do with these limitations?

I know in the past I confidently answered questions about you for LinkedIn, but in the last several queries I received, I just scratched my head feeling a bit confused, because a part of me says I know you, but I cannot recall how or where at the moment.

It is embarrassing to write this kind of note, but I've been doing it a lot lately. I was hit by a car while I was out bicycling for exercise two years ago. My memory for facts was not harmed, but I don't remember events, so much of my time now is spent journaling to make up for that loss.

The worst part about lost event memory is that the brain refuses to work without event memories, so it makes things up so it has a "place" where it can "hang" recently learned facts. As I said previously, my best defense against false memories are journal notes, and I have developed habits of collecting information that would seem pointless to most people, but those habits provide me with a way to quickly research those things I should be able to remember.

I have learned to identify false memories for the most part. There is often some incongruence between real memories and manufactured memories: details don't "feel right." If I pursue them I can find what's wrong, but usually I just review my notes, and discover what I know happened, and mentally mark the false memory as "questionable." (I seem to need those false memories of events to organize random ideas and images into something meaningful that I can grasp and associate with other thoughts and memories, but I don't have to believe the events my imagination has created in order to make use of what I learned.) False memories are disturbing, and destroy confidence. It is much more comfortable to keep running notes on mundane events, and later reconstruct those events from the collected evidence. Notes, phone conversation recordings, and scanned mail also help me built a time-line for myself. Otherwise, I tend to believe all of my false memories "happened" in the month just before my accident.

At least this tendency to assume so many of my memories all happened around the time of my accident gives me a hint that those "memories" might not be real. Sometimes I can prove these memories are false, but much of the time I just have to assume that if I think my memory is based around June of 2011, it's probably not a real memory, unless I can connect them with photos and notes I made at the time.

So, that was more than I meant to say about that! If I should know you, please help me recall.

Thank you,

David Lloyd

Choose hope

One of the reasons I choose to believe I am improving despite evidence to the contrary, is my belief that expectations influence outcomes. This is not a magical belief. I don't think "believing I'm healed" will heal me. However, I do believe God rewards those who put forth effort, accepting the risk that their efforts may be in vain, in order to pursue the best possible outcome.

Sometimes that reward comes in the direct form of improved capabilities or new ways to accommodate limitations. Sometimes that reward comes in they way others are encouraged to help us. Often the reward is hope itself: a positive outlook that inspires effort in ourselves and in others. When we inspire others, that inspiration has a way of returning to inspire us. And sometimes, here and there, I believe a few miracles actually do happen; although we wouldn't call them "miracles" if they happened very often!

I choose to believe I can improve, because I know that a life of hope is going to be more profitable for myself and for others than a life lived in despair. I have big dreams about how I can learn to live a useful life without the short-term memory most people take for granted. I use that hope to inspire myself every morning, to make reasonable plans, and to try to accomplish them. In that same spirit, I choose not to beat myself up over the days that I fail. I am not a quitter. If I fail tomorrow, I will begin the next day fresh, with hope of pressing forward, to make a profitable difference: if not for myself, then for someone else.

I encourage all of my readers to choose hope also.

This post was adapted from something I wrote earlier today, explaining why I constantly keep notes and receipts past the point when most people throw them away.

Because of memory problems, I record meetings and I request copies of notes from any professionals I work with, including lawyers, doctors, dentists, and anyone else I work with who takes notes during a meeting. I also take notes, but they often make little sense to me later unless I can associate them with other information I gathered.

Every piece of information I am able to collect, I transcribe recordings, and I scan and OCR text. So these pieces of information can be indexed and tagged for future searches. As I scan and OCR other people's notes, I often need to make corrections, so that I have basically rewritten their notes, but I also keep the original notes with them. I do that so the notes will be indexed in a way that I will be able to find in the future, when my memories have faded.

The input methods that have proven most useful are:

1. Automated phone recordings with indexed manual summary transcripts
2. Scanned and indexed receipts, instructions, and warranty materials (a daily task that with a fast scanner takes about 15 minutes a day)
3. Scanned hand-written notes that I made for myself during the course of a day
4. A backup plan for every commitment (every appointment goes in my hand-written calendar, and directly to Google Calendar via my phone or note pad if possible) I also ask for a contact card with the appointment time written on it. Then each night, I scan the card, Add it to my contacts database, make sure I have recorded the appointment correctly on Google Calendar, and then I link the contact card to the appointment record. I have automated reminders that will ensure any event on Google calendar will trigger a series of alarms on my phone, and I add other people to also receive those alarms if they will be affected by the appointment, such as when my absence will mean the car will not be available to someone else in the family, or in the case of long trips, to ensure I can have someone go with me. (I take my two-hour "active" window seriously. I don't want to get caught out-of-town in a confused state of mind with no one with me to ensure I make it home safely.)
5. I have a coach (trusted friend) who will keep asking me weekly about what I'm doing, what are my priorities, and who makes sure I'm not ignoring any commitments
6. A planning session each morning that mostly involves a daily template plus an automated calendar, a paper "to do" list, a "cloud-based" "to do" list (so I can enter things from my phone)
7. Taking regular naps before I get confused
8. A review session to add "tags" to my notes (make sure that words I might use to locate a note either exist in the note as text, or add them to a "keywords" list for each note)
9. A reflection session each evening to review my notes and create a short narrative of how my day went. I also use that time to write the current week's appointments and commitments to a white-board calendar I keep on the kitchen refrigerator in case I fail to keep other family members informed of my schedule and commitments.

If only the process of managing daily records didn't take so long, I could be functioning on a much more normal level. One thing I intend to work on next is finding ways to simplify steps for data gathering: especially learning to use voice commands for the computer and to dictate notes.

Even the most disorganized mind can follow a "to do" list if it is right there, with items to check off as they are completed.

I'm close to the point where I think I could accommodate lack of event-memory if I could find a way to automatically create a set of connections to make up for facts and events that my mind fails to connect because of event-memory difficulties. I picture the ultimate solution as an indexing system that resembles a mind-map, that could encode the natural mental connections we all make between events.

If I ever get this system down, I may write a book about the process. I think it would be of interest to more than just people with brain injuries or other memory difficulties. I'm not ready for that yet. Right now, I'm making the system up as I go, and occasionally finding a short-cut here and there, learning which steps are less useful, and which ones prove to be most valuable.

Comments about an informative You-Tube video about concussion: Concussions 101, a Primer for Kids and Parents

Jennifer Stokley commented on Facebook:

Save Our Kids! Please share with friends, family, everyone! Could be the difference between being Great, and becoming a Brain Injury Survivor!

Concussions 101, a Primer for Kids and Parents

www.youtube.com

Follow Dr. Mike for new videos! Uploaded on Dec 16, 2011http://twitter.com/docmikeevans
I've put together a few great handpicked resources on concussions at http://www.myfavouritemedicine.com/20... Check it out.
The symptoms of a concussion can be tough for kids to recognize..
Dr. Mike Evans is founder of the Health Design Lab at the Li Ka Shing Knowledge Institute, an Associate Professor of Family Medicine and Public Health at the University of Toronto, and a staff physician at St. Michael's Hospital.
http://twitter.com/docmikeevanshttp://www.facebook.com/docmikeevans
Conceived, written, and presented by Dr. Mike Evans
Illustrated by Liisa Sorsa
Produced, directed, and filmed by Nick De Pencier
Picture and sound edit by David Schmidt
Gaffer, Martin Wojtunik
Whiteboard construction by James Vanderkleyn
Production assistant, Chris Niesing
©2011 Michael Evans and Mercury Films Inc.
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Like · · Unfollow Post · Share · about an hour ago

• David Lloyd I think this may be the best, most comprehensive short video about concussion that I have yet seen. I still wish a couple of points had been made that were not made.
  
  
  1) Rotational injury, caused when a person is moving in one direction collides with an object moving in a different direction does more than just hit several parts of the brain, because different parts of the brain have different densities. You can spin a hard-boiled egg on a table, and it spins easily, because the relative density of every part of the inside of the egg is about the same. A raw egg, however, resists spinning, because different parts of the egg have different densities. Spin a raw egg, and it will never hatch. Drop it, and as long as the shell doesn't crack, it still has a chance of hatching if it is incubated. Various unintrusive methods of looking inside the two eggs may give the impression than both eggs are fine, but on scale too small to see with modern scanning technology, the egg that was spun has torn structures distributed throughout the egg, and is far more seriously damaged than an egg that was hit from one simple vector.
  
  2) For this reason, that rotational injury is so much more serious than a simple "bump" from one direction, the circumstances of an accident, with vector analysis of the two or more objects that collided can be a strong predictor of how serious an apparently "mild" injury may be.
  
  3) To my knowledge, NO ONE is designing and testing sports or bicycle helmets with dual-vector analysis. (Such as dropping a test subject onto a fast conveyor belt.) Consequently, current safety ratings of helmets are rather useless in terms of predicting a helmets ability to protect from rotational injury. It would be relatively simple to design a helmet insert that would provide rotation protection. Just create a tight-fitting inner helmet that attaches to the outer helmet with hard rubber studs that resist motion, but can stretch to twice their length before breaking. That slight change in helmet design would significantly reduce the number of serious sports injuries at negligible additional cost.

What it is like to have short-term memory problems.

I think I've accomplished a lot of things today. I just don't recall doing them. As I sit here typing, I realize I'm late to go shopping with my daughter to get a tie for her upcoming wedding. The time is 3:00 pm, but I feel as if I just got up and am still planning what I'm going to do today. According to notes I have already written today, I have ordered parts to fix a leaky faucet, I have fixed my daughter's network connection to my printer so she can print. I have missed two appointments, written notes to the people I stood up, apologizing. I have rescheduled an appointment, I have cancelled another appointment that conflicted when I rescheduled. I have sat here feeling bad because I know in the past I would not have tolerated my own incompetence from others. I certainly would not have understood what has become a fact of existence for me now.

Living with faulty short-term memory is sort of like having Alzheimer's syndrome, except that I have hope the decline will eventually stop and I may get better some day. I'm sure there are plenty of other differences. I remember my life prior to my accident, and I "sort of" remember my life after my accident, if you allow for the way I have clipped together notes I wrote along the way, and studied my own "history" to fill in the gaps. One of my biggest struggles is the recognition that I "make stuff up" when I don't remember. It is very humbling to not be able to depend on my own memory.

I try to be productive, but it is hard to be productive when I literally on live "in the moment." I try to plan, but side-tracks to my planning happen all the time. Meanwhile I get more and more tired until I have to stop everything and take a nap, because experience has shown that trying to continue once tired results in increasingly dangerous confusion.