There have been many books and stories written about the brain, some by doctors who specialize in injuries to the brain, or by therapists who work first hand with patients and recount examples of incidents by their patients. Very few are written by a person who suffers some brain damage and can tell a coherent story. This is my story of living with a damaged brain and trying with difficulty to react to the World around me.
I was in a car crash late one night while driving home. I obviously thought I wasn't tired enough to spend the night like my brother suggested, so I got on the freeway headed home to Newport. I can drive, I thought! No problem, until this light pole moved right in front of me! What's it like to be in a coma? Well, I don't remember...AND it continues; I have a bad memory of things that happen everyday. Some days, I don't remember IF and WHAT I ate for a meal. I'm constantly forgetting appointments, events, people, plans I've made, and how certain processes are supposed to be done - so I make it up!
I tried to make lemonade once - OOH, was that ever SOUR! It takes far more sugar. I've killed many a plant by not watering it, then overcompensating with a flood. I've been doing small tune-ups on my car for 10 years, and I still have to read the directions. I relearned how to snow ski...and it's hell trying to remember what to pack to take with me: I'm afraid I'll forget something important, so I over-pack with 2 or 3 of everything... usually. I've forgotten boots once, a sweater another time.
Now there are many people who will read that and think of a time they've done the same thing, that it seems normal. Sure, everybody forgets things once in a while, and I now realize that. But in the beginning of my recovery I thought it was just me, and that would create severe stress because my whole life was affected. While still in the hospital, I was shown a picture of a house and asked who lives there. I didn't know and was told that I lived there!
How can that be?...my friends were telling me what my World was, and I couldn't remember...that what I thought about basic things in my life had all been changed, and this is my new life.
To make an analogy, it would be as if I entered the witness protection program and I was TOLD where to live, what my past was, who I would remember, and that I would have to learn a new language. All that, and I would be deprived of sleep for the next 10 years so I couldn't think straight!
I feel my brain is like a computer that crashed: the info is there, but I can't get to it. I'll forget names of people, as well as objects, and words that describe an event or process. Try telling someone a recipe by not using any word that begins with...with a letter! Yeah, drop the first letter of every word and see how good you can communicate. It would be slower of course, and maybe simple thoughts could make it, but good luck.
Can you think of a sci-fi movie where people knew a character's name and tried to remind him of something involving him, but he didn't remember any of it? That's me! It's not as bad nowadays compared with the first year or two after my accident, but it still happens: A while ago, a woman said hi to me in a crowded place, told me her name, asked how I was, but I was blank. We were bumped away and I didn't have a chance to ask her for more info to help me remember. After 15 minutes, I suddenly remembered! ... but she was gone. No wonder people think I'm on drugs, with that blank stare!
To help remind me, I've used a pocket calendar to write appointments and deadlines when things are due. Sometimes I forget to look, but that won't always help anyway. For example, I've decided to eat something, gone to the kitchen to cook it, sat down to wait for it, then walked out the front door to go get something to eat because I'm hungry! Luckily, I smelled something cooking and caught myself. I've taken off in the car headed somewhere, then asked...WHERE? What am I doing? Where am I going? Why? I have to constantly ask myself these questions.
Do you know how to write a story? I had to go back to school to relearn everything, and an English class assignment was to write a story. Where do I start? A story of what? What am I going to tell? OH, I was a nervous wreck! I couldn't think of the different steps in writing a story, I would only think of the final project which was due on that particular date. And the more I thought, the more overwhelmed and nervous I got of what was expected. It snowballed, and I was a wreck.
But I eventually made it through school, and you're reading my story. I think I'm doing pretty good, but that may be my damaged brain thinking. I might perceive myself as normal, and the more I think about it, that begins to sound like what ANYBODY should think.
Many times, I have to think if I'm really ... I forget the word ... hold on ... what I'm trying to say is, ...do I see reality, or am I INTERPRETING what I see or hear as something different? A magician will APPEAR to do something, but that's not reality. Most people are intrigued by being fooled because it violates their sense of how the World behaves. But it can be disturbing, and I WAS VERY ,,,(what's the word)? ... shaken, rattled, nervous, upset, troubled by it.
Just think if your whole life was an act you couldn't stop and start when you wanted. You thought about getting up and walking over there, but your body wouldn't do it. For me, I would look down at my legs and wonder why they weren't part of MY WORLD. My entire right side was paralyzed while I was in the coma, but started to recover when I came out of it. I USED to be right-handed. Never fully recovered, my right side took months and months to become "functional." I can walk, not run, and my arm somewhat recovered. I can write with my right hand only if there is something to rest my arm on. If I need to write or draw on a chalkboard or easel, I'll use my stronger left hand that's more agile, and it does what I tell it.
I've been writing for...I THINK only 20 minutes, ...but it could be over 2 hours-I lose track of time. I'm trying to remember if I ate today....

Did I tell you about returning to school? I forgot simple things like how to add fractions, how to write, what things were called,.... After 10 years of continuous schooling, I finally graduated from Long Beach University, and I HAD some credits ALREADY from before the accident. Please don't think it's anything like Engineering, Mathematical, or Scientific, it's something I love to do: Art. But I still had to take the basic classes, including Math and Science.
I'm proud of myself for setting a goal and completing it, even after finding out I was so far behind and couldn't take English 100, the beginning class, unless I took English 99 first to catch up. Same with Math, but I felt school was needed, so I kept going. I didn't have fun in school like others, it was HARD! I was at the library so much I considered having my mail delivered to me there!
Over the years while recovering, I could see in myself the improvements of my mind. I am having an easier time communicating and organizing my life. When I can't think of the word to use, like above, I have the ability to describe it's use to get my point across. My mind was very unorganized then, but now I can relax and not get stressed, though I still think of myself as scatterbrained. I don't have the compulsion any longer to organize and simplify my life by throwing out stuff, including important papers! I can now think that someday this may be needed and should be put somewhere...somewhere where I can easily remember and get it.
I have too much stuff now! But at least it's somewhat organized. I've gotten in the habit of thinking "when I put this thing away, in the future when trying to find it, it would have made sense to look for it...HERE! " If I think that way, I can usually find stuff, but not always: every so often, I'll FIND something I've put away and never found:"so that's were it went."
I tend to get easily sidetracked and fail to show up where expected. One day, my Mom's car was in the shop and she asked me to pick her up after work at a stop for the work van. Well, I was at a library getting lost in books until I felt it was time to go, drove towards my Mom's house with the top down on a HOT summer day, when this terrible feeling hit me. It was 10 or 15 minutes after the drop-off time, so I went a few blocks farther to the van stop, but she wasn't there. I drove toward her home following the path in hopes of finding her within a block to pick her up. Nope. 4 blocks in the HOT summer sun walking home because I wasn't there. Oh, I hate that. I felt so bad.
Men don't often pull over to ask directions when driving, and I'm no exception. But the odd thing is, I'm a visual person (Artist) that can sense where I'm at in relation to where I want to go; usually. I've headed off somewhere in the car without knowing what I'm doing or what roads to take, and still got there. When I first started driving after the accident, I would get nervous when a traffic jam occurred, so I would get off the freeway onto side streets...ANY sidestreet, I didn't care. I could sense where the freeway was and the exit I needed and where it went, so I could end up relatively close.
On one trip with some friends, we were coming back from a trip to the mountains when we hit a HUGE traffic jam, so I got off the freeway. But I had no idea where the streets went, I just knew we had to go in THAT direction to pick up another freeway. There was new construction that ripped up the streets and turned us in another direction and really confused me. My friends asked where we were and I admitted not knowing, while one friend said I was kidding and DID know. We came to an intersection of a road and SURPRISE; it would take us exactly where we wanted. I was SAVED, by pure LUCK (and my friend thought I knew it all along). (March 2000, I heard of a study done that found men were better at knowing directions and their whereabouts. That explains it!)
So I learned this: many times, when I don't know what I'm doing, I don't let anyone else know because it might turn out all right in the end.

Have you ever known a very uncoordinated person, one who "can't walk and chew gum at the same time "? Well, I couldn't walk and TALK at the same time! When I first left the hospital after 6 months, I was in a wheelchair with no doctors' expectation that I would ever walk. I struggled for 3 or 4 months, everyday at home in Newport on the Boardwalk, trying to coordinate my legs to walk by looking down at them and WILLING hard for them to move. They didn't listen, and neither did I when people talked to me. I was so very concentrated on my legs that I would have to STOP WALKING and hold on to the wall nearby to steady myself in order to think of what I was going to say. After the person left, it was back to the legs with a slow and unsteady, shaky walk. More then once, I was accused of being drunk.
I went back and forth to the hospital for a few days here and there, until one time that lasted 3 months ... in a BODY CAST! This was about a year or longer after I was not only walking, but DRIVING! I had called my doctor to explain another problem that showed up, and he told me to drive to the hospital now and he would meet me there. When I got there, he said "check in, surgery in the morning."
Wow, it must have been something bad that turned up. But no big deal, I had been through enough bad things already that this was just another day, another surgery. The next day, he said test would show if he removed all of the infected area surrounding a rod put in to strengthen my leg bone that broke. The rod was all removed, but not the infection, so another surgery the next day and another test the following day. Still some infected bone, so ANOTHER. When I woke up after surgery, I was in a body cast, up to the belly button and down both legs with a bar connected between them. WHAT?!
There was so much infected bone removed that the sliver left could have easily broken when I rolled over in my sleep, but nobody warned me this was a possibility. I could easily get infected AGAIN while recovering since I wasn't sewn up on the side of the leg where the rod was removed. Yeah, my leg was still cut open. But I wouldn't see it until someone came with a SAW to cut out a window in the cast to access the carnage. Meanwhile, I was quarantined in my own room.
A doctor (or mechanic) came in with a saw to cut the cast RIGHT WHERE THE LEG WAS CUT! Oh, that was weird! He then removed the cast and wrapping to expose the flesh. I could see my own muscles and tissue INSIDE my body! That was a sight, but I was amazed there was no bleeding! I felt like a see-through doll that a kid would play Doctor with to learn how things fit. Then, nurses would have to remove the bandages everyday to clean out the leg and repack it with clean, sterile bandages. New nurses would ask ME how it was done and I helped them. Eventually I was cleaning the wound myself until the leg would heal itself and close up. The body is AMAZING.
I could see and touch my leg bone for months! I could watch my muscle flex INSIDE MY BODY! And no blood (applying heat to the blood vessel ends would CAUTERIZE or seal off the end). Putting in and taking out the sterile bandages on my leg is the oddest sensation. I have nothing to compare it to. It felt like I was pulling OUT the inside of my leg. I could feel the air IN my leg, and feel pressure I put when rubbing cleaning solution onto muscle. I used long-handled cotton swabs, like Q-tips, to brush a sterile solution inside my leg, and I poked at my leg bone. Not very many people can say that.
I'll write more here, check back. Chuck Stone

Here's more.... Recently, I saw a program on TV about forgetfulness and Alziemers. Whenever I come across any info about the brain, I want to learn it to help me cope with my injuries and the effects I have to deal with everyday. I've learned that people with strokes and Alziemers have very similar problems. After completing school, I spent my new free time at the library searching for books about the brain to help me understand. Well, not many other people understand it either, including doctors and researchers, but I did find some good info.
One book that helped me was DESCARTES ERROR by Antonio R. Damasio, MD, Ph.D., head of Neurology dept. University of Iowa College of Medicine. Written by a doctor who works with the brain and knows, it is often too technical and hard to understand the language for us mere mortals, but there were many examples of patients problems that I could relate to. In it, I read of difficulties patients, and myself, would encounter and found REASONS for the problems. No one had pointed out and identified what the difficulties were going to be so that I could then avoid the situations that caused it. I found out WHY I forgot appointments and why I would experience STRESS when expected to present a solution.
He wrote that damage to the frontal lobe causes lack of emotions or feelings and difficulty making decisions. People with this neural damage can't be trusted with or expected to perform on schedule. They're no longer an effective social being since they can't manage their time any longer. That explained the problems I had, but when he wrote that emotions are used by everybody to make decisions, and I LACKED emotions, that scared me, as well as his statement that damage NEVER HEALS! I learned the most from this book about brain function, and what damage will affect which function. Many medical terms in the book make it hard to read, but I learned what to avoid in my life that causes trouble for me.

Now for something totally different! If you want to read a good story about people with brain damage, then get the book, Over my Head, by Claudia Osborn, who used to be a doctor before and had to quit (Could you imagine being a doctor with brain damage?). The stories she wrote were so FUNNY to me because I've done the same thing! I thought the book was so good that I wrote to the school of Medicine where she now worked as a consultant or aid or something, to hopefully reach her to say I read the book and was astonished it was written so well. I could not have written anything like that soon after my damage, but she did. I wasn't sure it would get to her at a school with thousands of people, but I tried at least. I received my SASE back in the mail from the school expecting a "sorry, can't find this person," but I was REALLY surprised at what came back! It's on one of my pages for you to read.


Here's a good story: One of the many times I was tested for memory problems happened after graduating from college. I recently read this episode in some writing of mine where I wrote of going to the office to be tested, with a planned DR.s appointment right after it. The first office took longer than expected, so I asked to use the phone to inform the second office that I'll be late. Well, I forgot to bring the number with me in case this did happen.
When I got to the second appointment, I discovered that I had forgotten my sunglasses at the first! So I had to backtrack to fetch them, which isn't too efficient. This sort of unproductive behavior happens to me all too often when I'm distracted, which is about every other day. AND, this was a person, who after testing my memory, wrote down that it wasn't all that bad! Maybe my memory isn't bad, but I obviously showed that there was a problem.
Did I learn from my mistakes? NO, but now I realize the way to AVOID the problem: by not planning or thinking of too many things at once so I can concentrate on the one important task. But that's stupid. Every day people think of many things in the back of their mind while going about everyday life. It's so simple ... for them! I can't depend on my mind to do that, though. I spend an entire day thinking about a meeting or event later on, which means I have to prevent myself from getting involved with anything else. If I do, I'll lose track of time and the plans or appointments made.