NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
5 September 2000
All my life I've had problems with simple things like catching a ball, especially if it was thrown from the side. As a teen and young adult, I had a couple of experiences with sudden, unexplainable brief lapses of consciousness, or something like that. My family, and a doctor, suggested it was all emotional, so I learned to pretend that nothing was wrong.
But I always knew there was something wrong in my brain. Through the years, I would experience periods of "mental fuzziness", for lack of a better term. Also, I never could get a doctor to give me a prescription for my glasses that really seemed to work. Some days it seemed I just couldn't see as well as others. I was always told it was my imagination, or that I was being lazy, and was just trying to get out of work or school. I also had trouble understanding sounds I heard at times. I always felt there was more to it than the moderate hearing loss I had in one ear. But I learned to ignore those feelings.
In short, in March of 2000, I came home from church one day with a distinct feeling that something was wrong. My vision had definitely deteriorated. When a blood vessel burst in the white of my left eye, I called the hospital's Ask-A-Nurse. I knew the broken blood vessel was not serious, but I just couldn't see "right", and it seemed that the color temperature of anything I was looking at was different from eye to eye. I had a little bit of a headache, but I had learned to ignore headaches years ago. I wasn't supposed to be a wimp, and complain about headaches. I had been diagnosed a year before with atypical migraines, because I seemed to get substantial relief from Imitrex. But not all the time. I just pretended that I never had headaches.
The nurse told me to go to ER. There, they did some checking and could find nothing wrong. So the doctor called an eye specialists who just happened to be in his office on the weekend. He was moving to another office. They sent me right over, and I had a thorough eye exam. My visual acuity was down noticeably, but there was no explanation. They scheduled me to come in again 3 days later, when they had their equipment all set up in the new office.
When I came in again, the nurse handed me a card with a cross-hatch pattern of black lines, and ask me to draw a line around any blurry areas. I did. I also told them that the vertical lines had 2 red and 1 gray shadow. I was ready to drop the whole thing, until I saw that card. There was definitely something not right.
An eye angiogram was OK, except I reacted badly to the dye. Then I was referred to the area's leading retina specialist. I had seen him the year before, trying to figure out I had walked at full speed into a concrete post and gave myself a concussion. (No problem had been found, but I still have never seen that post.) This time he checked my vision, listened to my story, then told me he thought something was going on in my brain, and made an appointment with a neurologist then and there. It was the same neurologist I had seen after my concussion. I just about dropped the whole thing again, thinking that no one would find anything again.
The neurologist listened to me, did a basic neurological exam, than told as a next step he wanted to have an MRI and MRA done. He didn't expect to find anything, but felt it was the first step in trying to figure out what was wrong. Like maybe some kind of emotional problem. So his office scheduled the tests for me, and told me to call the office back 2 days after the tests for the results.
I've had several brain MRI's over the years, and nothing was ever found except a little calcification. No explanation for that. But I went in again, took deep breaths to control the claustrophobia, and managed to survive the experience.
I gave them an extra day, and called the doctor 3 days later. The nurse put me on hold, then told me the doctor needed to review the results, and to call back the next day. I waited 2 days, and called late Friday afternoon. The nurse put me on hold again, then told me it was too complex to explain over the phone, could I come in the morning they opened after the long weekend? Just the news you want to hear. It was a rough 2 days at work that followed, and not just because I was having trouble seeing that silly mouse cursor on the computer screen.
The doctor explained that I have an AVM, and showed me on his brain model where he thought is was. He was very patient, and made sure he answered all my questions as best he could. He said it probably wasn't too serious, but wanted me to see a neurosurgeon. He was going to call and set up an appointment for me.
Several days later he called back and said none of the local neurosurgeons was willing to see me, and I would have to go to a university medical center somewhere, like Seattle, Los Angeles, or maybe Salt Lake City. I had to decide and call him back. I let him know 2 days later that I would go to Salt Lake city, since it was closest, and I figured I would be going through this alone.
I took copies of the MRI, the MRA's (magnetic resonance angiograms, I learned), and the MRI studies from a year before when I had the concussion. The surgeon just said, "someone did some very extensive work here," pulled a film from the middle of the pack and put it on the screen. Before he had even removed his hand, he said, "I see a problem right here." When he pointed it out, it was as clear as day. I had studied those films for days, trying to find the AVM, and had identified something completely different, which matched what the neurologist had told me. What a difference an experienced expert can make.
The surgeon, Dr. Joel MacDonald, said it needed to be treated aggressively, but not immediately. He wanted to do an angiogram, consult the radiology and other departments, and determine the best procedure. The options were surgery, burning it out with radiation, or clogging it with something like super glue. The radiation carried a 5% risk of a "catastrophic event", and the other carried a 10% risk. The MRI showed the AVM to be in the midline, against the right occipital lobe, which explained the problems in my left visual field. He sent me home and scheduled surgery 6 weeks later, because he needed time to get together the experts he wanted on hand for the procedure. That's when I realized how serious it was.
The day after we got the date set, his nurse called back. The doctor wanted to reschedule on a day when they had no other surgeries. So I was scheduled for a craniotomy and AVM resection on June 2. That was a Friday. I was the only surgery the team had for the whole day. And nothing was scheduled for the next day. I really knew it was serious, then. But Doctor MacDonald's confidence was contagious. He had done many of these, and had no doubts about this one.
I had to quit work the last of April. I finally admitted to the headaches. And I just couldn't see that mouse cursor, and sometimes couldn't read my case notes on the computer screen. It was getting harder and harder to talk on the phone, look up technical information, keep notes, watch the status board, read my phone display, keep an eye on my teammates, and solve technical problems all at the same time. That's a lot of multitasking, and I just couldn't do it anymore.
On June 2nd, I had the surgery. My daughter, father, and sister were there with me. A doctor started the IV in the short-stay unit. He told me he was going to give me something to help me relax and not feel so anxious. I was going to tell him not to bother, I was very confident and relaxed already. And the next part is hard to explain. My father started to say something. In the middle of his third word, the voice changed to that of a doctor telling me the surgery was over, I was OK, and it had taken 11 hours. There was no gap. It went instantly from one voice to another. I'm sure I was aware of what my father said and a few other things, but they didn't get into memory. Not even a sense of time passing.
I was horrified a few weeks later to learn that I woke up totally blind. I'm told I didn't recognize anyone but my daughter, and wouldn't sleep unless she was holding my hand. I have almost no memories of the first 4 days after surgery, and little from the rest of the time. I just remember these things on my legs that kept inflating and deflating. And waiting hours for my pain meds, only to be told I had called for them 12 minutes before. I remember at some point, toward the end of my stay, I guess, seeing faces like they were in one of those paintings where an ear would be where a nose should be, mouth down the left side of the face, an no other features, except the hair. I wasn't so much that I couldn't see, as I just couldn't process what I was seeing.
The surgery had been rougher and longer than expected. Doctor MacDonald physically gave out after 11 hours, expecting to continue surgery the next day. But after an additional 4 hours of blood flow studies and evaluations by other doctors, it was decided no more surgery was necessary. Especially since they had reached the end of the microtools shortly after starting the surgery. They had to shove the halves of my brain apart to work.
No one had told me that expecting to drive again in about 5 weeks was unrealistic. I still can't get any time frame from anyone, except that it takes 3 months for the swelling in the brain, and in the optic nerve in the back of the eyes, to start going down. I'm at the 3 month mark now, and can finally walk without a cane. I can see well enough to get around home really well, but become confused and disoriented in unfamiliar places. Or in grocery stores. Grocery stores are extra hard to handle.
I still slur my speech a little at times. There are some deficits on my left side, but those seem to be responding well to physical therapy and exercise. My memory and time sense are still pretty weak. So is my immune system. Surgery is hard on everything. But it all seems to be getting better every day.
I've never had a seizure, but am on Dilantin. I understand I will probably be on the medication for several months yet. It takes a while for the irritated areas of the brain to calm down. My mood had been extremely good and upbeat. I recently learned this could be because of the Dilantin. Some people used to use Dilantin as a mood elevator. But I don't think my mood will change much when I'm off the medication. My outlook on life has changed, I savor every minute of life. Even the painful ones.
I still have a couple of bald spots on the back of my head, and the hair is just starting to grow back over the incision. But none of that bothers me. It's on the back of my head, where I can't see it. If someone stares at it, that's ok too. They are behind me, so I can't see them, either. I'm not going to sweat the small stuff. I've been given back nearly a third of my life expectancy, and there is a lot more I want to do with it than worry about how I look to others. I know I look pretty strange, stumbling down the sidewalk. You should see the police cars check me out. I'm just grateful that they are checking me out. Just in case.
I have another angiogram in on September 15. I told the surgeon that I'd rather let him dig around in my brain some more, but he wouldn't fall for it. So I'm trying to not grit my teeth too hard, and gear myself up for it. This angiogram will determine whether or not I have to have radiostactic treatment to take care of the last bit of vein which was still getting arterial blood. No more knives. In the brain, at least.
We do have concerns for my 19 year old son. He has been having bad headaches for several years now, At times he seems kind of sluggish and slow thinking. Sounds familiar. He wants to be checked for a cerebral AVM, but does not have medical insurance at work. My medical bills look like they may hit more the $100,000.00. We arent' sure how we will swing the expense of the evaluation we think he needs. I will be discussing it with my surgeon in a couple of weeks.
I know I've nearly written a book here, but it's just a drop in the bucket. For the full story, check out the web site my kids helped set up before my surgery.
As frustrating as it can be to loose you independence, your skills or abilities, or your life as you did know it, life is still worth living. Savor every moment extra you've got.
And to relatives and friends of people with or recovering from AVM's, this advice. Make a commitment for the long haul. They need you not only now, but maybe weeks, months, or years down the road. They may need you at times when you or they least expect it. Let them know that they are loved and valued as they are. Sometimes they feel like they may never recover. Let them know it doesn't matter, you care about them and like them anyway, whether they recover or not. It will mean a lot.
Update 6 Nov 2000
A lot, and not much at all, has happened since I first posted the narrative. I've improved a tremendous amount, waking up a little more everyday, and am a lot more aware of what's going on. My vision has improved to 20/40 in one eye, and the world no longer looks like a Picasso painting.
I had another angiogram on September 15. Everyone at the hospital knew that the first angio was the worst experience of my life, and I did not intend the second to be anywhere near the same. They listened to me. One of the top professors of the University of Utah did the procedure himself. He made sure I had a chance to talk to each member of the team and get to know them by first name. The anesthesiologist assured me that he was very good at finding and keeping to that fine line between feeling no pain, and being conscious enough to report if I had a stroke. I asked that when they were ready to call in the football team (to take turns pressing on the artery}, to knock me out. Everybody kept their word. I didn't even feel the I.V. being placed. When they were closing, the doctor told me there would be no need for a football team this time. It started to hurt, and I groaned, and the pain went away instantly. Complaining and making demands sometimes works.
At that point I decided to take charge of my life. No more being a victim. No more being a survivor. I'm a LIVER! And I don't mean the kind you cook with onions.
The angiogram showed that the AVM is gone. The part of the vein they were concerned about appears to have healed itself. It looks like some new arteries are growing in good places. My vascular system is in great shape.
There are plenty of other things to deal with. I got up one morning a couple of months ago, looked in the mirror, and suddenly saw myself. Not just a body staring back at it's reflection, but ME! My first thought was, "where have I been all summer?" Now that my body and self-awareness are reunited, I'm trying to figure out just who I am. I've changed. I'm not sure in what ways, I'm not quite the same person I used to be. Brain surgery has a much different impact than knee surgery.
Short term memory is improving a little. But as I get more active, there are more things to forget, so the result is a feeling that I can't remember anything. I'm quite attached to a weekly calendar, and have post-it notes all over and around my desk. I have to make very detailed notes about my notes. A note saying, "Call Janie at 333-3333 about meeting" has no meaning. What Janie is associated with that number? What meeting? When? When and why did I write this, anyway? It gets very frustrating. The good news is that my long term memory is in pretty good shape. Things don't start fading until about 2 weeks before surgery.
The more active I become, the more I am aware of some loss of coordination on my left side. Someone asked me today what was wrong with my left arm and hand. I looked down, and found them kind of curled up on my stomach. My left foot tends to drag when I'm tired or my senses are overwhelmed. My strength is good, though.
Tracking my environment is doable, but hard. Certain things put me into a fuzzy state of overload. People milling around, with a lot of sound, in a visually complex environment, are too much. This curtain comes down between my mind and the rest of the universe. Strangely enough, driving isn't so bad. I think it uses more parts of my brain at once, distributing the load.
There is an advantage to this sensory overload state. I went to a church social in a horse arena the other night. My brain went south at the door. Every once in a while I would find I was being led around by the hand by one lady or another. My daughter, or someone, said this is a good way to find dates.
I'm tired most of the time. Walking in a visually rich environment, like a store, is exhausting. I can handle shopping for a longer period if I use an electric cart. I never realized that walking uses so much brain power and energy. My speech is pretty clear when I'm not too tired, though I have a tendency to whisper. All my senses seem to be dulled just a little, probably the result of the swelling in my brain that isn't completely gone. Reading is tiring, too. Numbers are extremely difficult to see or work with. I'm having to relearn to "see" a lot of what I see.
My emotions woke up in September. It was like being a teenager again. Just a lot easier to learn to handle the flood of feelings this time. I was deluged with a lot of anger and despair, with no idea where it all was coming from. A social worker came to my house, but memory problems made it hard to remember what I needed to talk about. After she quit coming, I recalled some of my social work training, and realized I was responding like a rape victim. It's true, brain surgery is very much like the rape. Even though I chose to have the surgery, I was still powerless. There was an intrusion into my mind and the very essence of what I am. I had no control over the impact or the way I had been changed. I felt guilty about being angry with the doctor who saved my life. Once I understood what the situation was, I knew I wasn't angry at him, but with the circumstances. I did not have the AVM by choice. I did not choose or want the way it affected me for so many years. My feelings got poured in a few emails to some unfortunate friends, but I feel a lot better now. I'm glad to be back in charge, at least partially, and moving on. But intense, yet brief periods of anger, disappointment, and despair pop up from time to time
I've been demanding answers from my doctors, and am hearing a lot of "We don't know." At least there is a projected recovery time frame now of one year. It's not known if I will get much more vision back. The surgeon believes almost all the deficits will eventually go away. I can drive a little. Not very far or in heavy traffic, but it is great to be able to go shopping again. Even if I do get so confused I can't buy anything. I lead a discussion at church, but find it so tiring that I struggle to not snore through the service. Fortunately, I ask a question and the discussion takes off so well I can sit back and try to think up another good question.
I have heard from a lot of people about how their relative or friends just don't understand what they are going through. I've encountered the sane. I was hoping to spend Thanksgiving with my mother and sisters in another state. But they act like they think I have to use a white cane to get around, make erratic spastic motions and odd sounds. They say they don't want me to get far from my doctors, but I believe they are embarrassed and afraid. You just can't explain things to them or tell them otherwise. That's why it is so refreshing to find that the local brain injury association and support group is made of people who look and think like me, and understand.
I'm still documenting the journey at my website. Feel free to visit.
I think Dr. Maples is right, this is a very pulchritudinous group. He was just a little off the mark in applying that to me. I can't even pronounce the word, much less fit the description!
Update 27 May 2001
As I look at the calendar I see that the one year anniversary of my AVM surgery is about here. It's so ironic that the day that had such a profound impact on my life is all but nonexistent from my perspective.
A lot of things have happened since my last update. I got to fly to Texas and spend Christmas with relatives. They even let me drive a vehicle around town a couple of times. I had the impression they were greatly relieved that I left it in one piece and unscratched. Frankly, I was greatly relieved as well.
By mid January I was in touch with my body enough to know when I needed help, or when I was pushing things too hard. That ended my home nursing services. It felt like graduation, but I missed having the nurse come by once a week. In mid March I flew to Salt Lake City, without assistance, for an appointment with a neuro-ophthalmologist and my neurosurgeon. That's when my complaints about my vision and other problems began to be taken seriously.
In December I had seen a neuropsychologist, who documented that I had almost no visual memory. My basic intelligence was still intact, but I was performing below 1 (yes, one) percentile on some tests. My memory was pretty shaky, and I was totally baffled by a math test involving fractions. Stuff I used to be able to do in my head. But he felt some of these things could be the result of a somatoform disorder. I pointed out that I woke up from surgery blind, before I could even have any emotional responses, but that didn't seem to make a difference.
Also in December, I had seen a new neurologist, in my quest to find a knowledgeable physician to provide follow-up care. I had read on this site about some of the good neurologists people were seeing after surgery, and the care they were getting. This neurologists first response was, "Why are you coming to see me? This is all surgery stuff!" When I told her about my left side problems, the lingering vision problems, and a few other things, her next response was, "You must be having an emotional reaction to the trauma of surgery." Then she called my family physician and told him the same thing.
From that point on, my follow-up care seemed to consist of a pat on the head, and an offer of mood altering medications. I felt like I was right back in the same situation I was in before the AVM was discovered.
The neuro-ophthalmologist at the Moran Eye Center in Salt Lake changed that. She did about 5 hours of testing, reviewed my MRI and CT scans from the past 9 months, and listened to me. Really listened. She said that feeling that my left hand and arm were not a part of me, and the tendency of my left hand to do it's own thing at times, is called alien hand syndrome. (Did you ever watch Dr. Strangelove?)
When I told her what the neurologist had said, and the attitude I had been encountering, she put her hand on my arm and said, "I am soooo sorry." Now, I may be a hardened and grizzled 45 year old man, but I just melted under that.
She then proceeded to point to an MRI film, and tell me how it all made sense, because I clearly had a "boo-boo" in the occipital lobes, and another "boo-boo" at the back of the corpus colossum. She felt the damage had been caused by swelling immediately following surgery, and/or a blockage in the drainage from the back of the brain. She went out of her way to assure me that my reports, the tests, and the MRI results all matched, and that my complaints were not an emotional response.
By the time I had gotten to the other side of the hospital complex and saw my surgeon, she had already called and filled him in. I had the distinct impression he was not happy. I asked some very pointed quests another story. Even in the same hospital, the technicians are uncomfortable working with a person with a clip in the brain. Just before I was rolled into the machine, the technician said, "You do realize that if that clip turns, we won't be able to resuscitate you." So much for slow breathing!
In April I ended up in a local hospital again. I was afraid I was having a stroke, and was almost blind again. The new neurologist they called in decided it was a kind of surgery induced migraine, and possibly visual seizures. This doctor happens to know and respect the neuro-ophthalmologist I saw, so I now have some good follow-up and coordination. I was started on Depakote, then had my dose doubled. That seems to have greatly reduced the flickering visual stuff, and reduced the explosive headaches as well.
I've also joined the YMCA and started a workout program there, which seems to be helping recovery overall. The neurologist sent me back to occupational therapy, which I hate but is teaching me a lot about myself and my abilities. When a fire alarm went off, we discovered that I function much better outside, in wide open visual spaces. I now know that by keeping people at least 6 to 10 feet away I can avoid getting lost or confused when talking with them. It may appear a little antisocial, but it works.
There are still a number of things I'm not happy with in the way my mind and body work. But the neurologist tells me the main problem is one of perception -- my perception. I'm expecting too much. She says I'll never be back up to what I used to do. I should concentrate on building on what I can do. I can live with that. It gives me a goal to work toward. Sitting around and waiting for skills to come back that may never arrive just doesn't work. So I'm working on things I can do, like improving my memory, working with the spoken rather than the written word, and finding techniques to appear more normal in crowds. I haven't given up improving my reading skills and visual memory, or improving my brain speed.
Finding therapeutic skills and techniques is still a challenge. I have to study and reason out things for myself. I'm told I'm doing the right things and that they are working.
To a lot of people I'm pretty normal now, but I know I'm far from where I used to be. The people at the grocery store seem to know, too. They always ask to carry my groceries to my car. Not the person in front of or behind me, just me. I guess that makes me special, but I wish I knew what I was doing. It happens even with the new help. Regardless, I called the manager out one day and told him as long as his employees kept doing that, I would keep patronizing the most expensive store (his) in town.
I don't know how long it will be before I can work again. I'm hearing that it will take up to 5 years for unused fibers in the corpus colossum to pick up the work of the damaged ones. I think major progress has been made there already. The alien hand syndrome is gone and I claim my hand again. There are other signs that my brain halves are talking together well again. I've recovered about 75% of my visual field, but there doesn't seem to be much chance significant improvement there. I'm still learning visual associations, so expect to see a lot of improvement there yet. Word finding is still a problem, and I may become better at compensating than finding words to say. If I can improve my visual memory, reading could become a little easier, but looking through all the small blind spots will always make that hard to do.
One last thing. I have been complaining over the last year about forgetting to breathe. My doctor finally referred me to a sleep specialist to see if I actually quit breathing in my sleep. It turns out I do, every 90 seconds. I knew I might forget to breathe for a minute or so during the day, but had no idea what was going on at night. From now on I'm supposed to sleep with a device under my bed and a mask on my face, to keep me inflated and breathing all night long. I was a bit distressed when I heard that, and asked what I was going to do about camping. "You take extra battery packs. It works just fine in a tent," I was told. So the next time I go backpacking, it will have to be with a group that can carry all the extra batteries, and that can put up with the noise of the machine. Maybe they'll buy into it if I tell them it scares away bugs and bears.
That's where things stand, a stage of uneasy acceptance. Lot's of new experiences. A life that is not better or worse than I expected, but a whole lot different. I hope that one of these days medical science finds a way to detect or eliminate AVM's and aneurysms even before birth.
Update: 13 Jun 2002
It feels like I just submitted an update, but I see it has been over a year. I feel this new one deserves a name. I call it "The Year of Discovery".
Right after I wrote my last update, my daughter moved out of the apartment we were sharing. She felt I did not need her help any more, and, face it, it's not "kewl" for a 21 year old to live with her Dad. Most of her friends did not want to hang around the place. Therefore, I was on my own for about 2 months while searching for someone to rent the empty room. I learned some painful lessons about how to word and not word a newspaper ad.
The occupational therapy I was doing at the start of the summer did not last long. I always seemed to be one step ahead of the therapist. She did insist I connect with the Idaho Commission for the Blind. I talked with the vocational rehab counselor there, and was sent to the low vision specialist for evaluation. I learned some interesting things in his office. One was that I could read the eye chart about two lines further down if I read it backward. That gives me 20/20 or 20/10 corrected vision in my right eye, and 20/40 in the left. He also had me try about a dozen different shades of glasses, and I could see certain things better with certain colors. He said this all told him where the damage was, what kind, and how it was healing.
The doctor told me I was having trouble reading because I was trying to read as I had with my previous brain wiring. My brain is wired differently now, and I need to learn to read in such a way as to use the new wiring. I needed to slow down and give my brain a chance to relearn reading. I went home with some sheets of paper with letters and exercise instructions. In just a few days, I noticed a big change in my reading skills. Reading became easier and faster. It still is somewhat slow going and tiring, as I have to move my head a lot to read around all the blind spots. And it just takes longer than it used to, to put it all together and make sense of the text.
The Commission for the Blind determined I was eligible for services, and we started talking possible jobs and career tracks. I really wasn't very excited with what was being laid out. Since I still did not have the energy to work full time, or even half time, we were talking of something simple to start with, like sweeping floors a few hours a week at the nearby Burger King. Just a little extra cash each month would sure make a difference. I talked to the BK manager, but he was not interested, even if the Commission paid part of my wages.
One of the things the Commission was looking at was putting my experience in teaching and in computer technology to good use. They thought I would make a good assistive technology specialist, possibly even working for them. As I looked into it, it looked like a good field, with very good pay. It involved helping blind people set up and maintain computer systems, and teaching them to use the technology and software. That is something that appeals to me.
So the first thing they did was have me start coming in to the computer lab to learn the software interface. It is a program that works under Windows, and reads the screen to you. In addition, there are a zillion short cut keys to use to navigate the screen and accomplish your tasks. I needed to learn the basic keyboard shortcuts to use the interface. So I would go in, spend about half an hour one on one with an instructor, and quit drenched in sweat and totally exhausted. I would come back a few days later, and discover that none of those keystrokes was still in memory. After two or three weeks of work, I still could hold no more than two or three shortcuts in memory. My memory works very well now in some areas, but not in that one. I gave up in frustration.
I did get the chance to have some people from the Commission over to my place to demonstrate the MS Windows 2000 voice accessibility options. They were impressed, as it does just about everything the $600 interface program does. I think the voice choices are much better, too.
Another thing the Commission for the Blind did was to outfit me with a white cane and teach me how to use it. I had mentioned how my night vision was all but nonexistent, and told of how I had gotten lost when I went to a theater with a friend. I could barely see the lights outlining the steps, and had no idea where the seats were or where my friend had gone. He eventually came to retrieve me, but did not hold on to me. I eventually followed his voice, banged my shins, stepped on someone, and fell across someone's lap before I got to the seat. Needless to say, when the movie was over, I stayed put until all the credits were done and the lights turned up. I still had trouble finding my way out.
The people at the Commission said I needed the white cane so I would not be trapped in my apartment at night. I hadn't thought of it that way before. The truth hit hard. I WAS trapped. So I chose a nice, lightweight, collapsible cane and a nice travel blindfold (for training use), and took lessons in using the cane. It turned out it's kind of fun to walk around whacking things in your path with that cane.
While I am on the subject of the cane, I want to mention a few things I've learned. First, when you have that cane in your hand, people treat your differently. People ignore you if you bump them or invade their space. Sometimes they avoid you, as if there is something wrong with you, something catching. Sometimes it is just the opposite; they are all over you, giving too much help or attention.
I have been to a theater a time or two since, but have not taken the cane. I give whomever I am with a major lecture about holding on to my hand or shoulder, no matter how it may look. They have to take it slow and easy, and once we are seated, the handholding has to stop. I wait until we are walking into the dark to give my lecture. I just wish I could see the conflicted look that must be on the faces of my male friends.
Since I do better outdoors, and the visibility in my car is a close match to my visual field, I drive fairly well in normal daytime conditions. No one has complained when riding with me. So I usually drove to my appointments at the Commission for the Blind. Almost every time they would ask me how I got there. When I'd tell them I drove my car, they would say, "You did WHAT?!!" It's very hard to explain how you can process big objects like cars in heavy traffic, but be overwhelmed by a grocery store or a crowd of people.
In December, I caught a bus north to visit some friends who had just purchased a 100-year-old farmhouse in eastern Washington State. My friend Stephen decided I needed to be driven around a lot at night, in blowing snow. If it had not been so exhausting, it would have driven me crazy. But by the 5th night, when he was driving me the 300 miles back home (late at night of course), I was reading the road signs and spotting objects along the road nearly as well as he was. It was incredible. Just a few days before I had not been able to see hardly anything that wasn't within 10 feet and right in front of the headlights, and then I could rarely interpret what I did see. What a difference!
Since that time, I have been studying a bit about the brain and how it recovers. I was surprised to learn that many experts now believe the brain is not only able to grow new nerve cells when there has been damage, but that these cells often migrate to where they are most needed. In addition, the nerve cells also grow new branches and form new connections with other cells in distant parts of the brain as needed. Unfortunately, when new cells and connections replace damaged ones, the new ones never perform their functions as well as the old ones did. It can take years for all this to happen.
On learning that, my next question was how to get my brain to grow new cells and connections. It turns out there has been a lot of research on that in the past 5 years as well. Knowledge of the brain, and how it functions, seems to have changed radically. It now appears that a wide variety of experiences help promote the growth of cells and branches and circuits and synapses and a host of desirable things. One activity may cause a brain cell to grow a long branch some distance to connect to another cell involved in that activity. In the process, it encounters and connects with other cells that are involved in other functions, and is able to aid in those functions as well. So developing one ability actually tweaks or enables others. That's why going to a museum and studying art may improve your math and memory. Picking up that hobby you always wanted to get into but never had the time for might improve your word finding skills and help your orientation. Riding and talking with a friend for hours on end at night, in blowing snow, may improve your vision. Strange, isn't it? Moreover, it isn't a matter of how long you do it. Just two or three 10-minute sessions a day of doing something new and preferably enjoyable may produce results in a matter of days. I read in one place that such activities can cause the brain to create new synapses in as little as 30 seconds.
But where do you go to get ideas on what to do to get the most recovery at the fastest possible rate when you are dealing with a cerebrovascular injury? What is the best way to recover from an aneurysm? What is the best way to handle the affects of avm surgery? There sure isn't much about it on the internet. So this spring I thought I would try something new and different. You know, to help grow some new stuff in the brain. I set up a web site with cerebrovascular injury recovery resources. Wouldn't you know it, my first choice for a domain name was available, and now I'm the proud owner of www.cerebroweb.com? Please visit the site, and send me any information or resource links you think should be included.
A couple of days after the Olympics, I flew to Salt Lake City to see the neuro-ophthalmologist. My eyes have not changed over the past year. The continuing return of my night vision was a pleasant surprise. As I understand it, my eyes have just a little trouble tracking together at times. There is a little trouble getting information both ways over the optic nerves. Visual data is having some trouble getting back into my brain, and data to control my pupils, focusing, and tracking is having some trouble getting to my eyes. I still have many blind spots and am missing a lot of peripheral vision.
I understand a lot more now of what has happened to my brain. The doctors say my surgery was one of a kind. The replumbing was so extensive that no one can predict what the results are or will be. There is major calcification in the back of my brain and around the back of the structure that connects the brain halves. That was from bleeding after the surgery. The last two or three MRI's seem to show no blood in the straight sinus, which is a major drainage channel from the brain. A vein on either side has enlarged and developed new feeder veins, but the two together probably cannot carry the blood flow the straight sinus was meant to handle. The back of my eyes are still slightly swollen, indicating some high pressure in my brain. The doctor believes there is a partial, intermittent blockage of the blood flow from my brain some place. This causes an increase in cerebrospinal fluid and CSF pressure. That explains these episodes I have now and then that put me in the hospital with stroke or severe migraine symptoms. The suggestions on the table right now are to have a series of spinal taps the next time I have an episode, to measure the pressure at the moment of the puncture. We can try medication to dry me out, or have the surgeon install a shunt. I have also heard a reference to having another plumbing job done in the middle of my brain.
There is no serious talk of that last suggestion right now. But it's the one that gets my attention. The spinal punctures get my attention, too, but the idea of having major brain surgery again over rides everything. For the first time in my life I am terrified of the very thought of a medical procedure. Knowing where the work would be done, and how it affected me before, there is no doubt in my mind I would come out a very different person, in a very different condition, if I survived. As I said, it was mention just once in passing. I hope the idea has passed for good.
It's a slow process, but I'm continuing to improve all the time. There are all kinds of new activities, and even a few old ones, to pursue. I recently directed a play for a church. That really stretched me thin. Then all of a sudden, around the last week of work on the play, I found myself reaching for and grabbing things to my right without looking. Part of my right peripheral vision has returned. My memory has improved quite a bit, but still relies on the three steno pads and two calendars in front of me. I have made it a point to be more outgoing socially, and that seems to have paid off in several ways as well.
But I still can't retain those stupid shortcut keys!
In Salt Lake City, I asked for a referral to a local neurologist who would be more likely to understand and follow the diagnosis and treatment plan from the university. They had a name, and I was able to get an appointment with him in short order. I took my big, 15 pound pack of MRI, CT, and angio films with me. For the first time since my surgery, a local doctor actually took the time to study the films. He agrees with the doctors in Utah and plans to follow the same approach. He assures me that the spinal punctures will not be nearly as bad as I anticipate. We shall see. I'm doing my best to avoid them. My "spells" are becoming milder and further apart, so I may be able to get out of the needle-in-the-back thing altogether.
This past year has been full of incredible things. I got a message from someone who shares my name, who lives in the city where I was born, who also had an AVM. What a rotten, but exciting coincidence. Then there was my birthday. That's one I'll never forget. It was declared a national day of mourning. I spent part of the day standing in front of the steps to the state capital, listening to the governor, the mayor, the chief of police, someone from the military, a priest, a rabbi, and a leading local Muslim call for unity and courage. Someone gave me a flag, which I put in my window. I didn't get any presents, and that was ok.
I got a chance to spend a week with friends at a beautiful resort in Oregon, and climb a mountain without getting lost. I have made many new friends close to home, and have corresponded with hundreds of others. I wish I had made more progress on my book, but have clarified the theme a lot more.
I don't know what the future will bring. I am not ready to go back to work, because I still have to sleep 10 to 16 hours a day. I can't predict when that point will come where I really need to take a nap. I still cannot get a word in edgewise in a discussion because the conversation moves too fast for me. Ironically, that's one of the things that drive me to go for a leadership position. I can just sit and listen or interrupt and ask questions, if I'm in control of the situation.
My analytical and managerial skills seem to be coming back fast, but not my people skills. It is still hard to process faces, so I can't look anyone in the eye for more than a few seconds. If I try to hold someone's eye, the face goes blank. Therefore, I don't look at the face. People think I'm being dishonest or am trying to hide something. Then there is the thing with shaking hands. I have regained a little lower peripheral vision, but I still don't see a hand being held out unless I look down and hunt for it. I get in trouble either way. If I don't look down, see the extended hand, and shake it, the person thinks I'm angry or vain. If I start looking for the hand, I run the risk of being slapped. One woman explained to me that she didn't appreciate getting the "fish eye". She had no idea what I was not seeing. I try to deal with the handshakes by being the first to put my hand out, in every situation. That way the other person has to locate and take my hand. As far as looking people in the eye, I just try to explain the situation when I think someone notices. That's not always the most desirable thing to do. These are things I will have to work on in the future.
There are a lot of issues I still need to sort out, issues related to my limitations, which have somehow become tied in with my divorce 4 years ago, which has somehow become tangled up with other issues from my past, present, and future. I am still not sure how to relate to the fact that I view myself as a different person than the one who went into surgery 2 years ago. I remember when that person died, and I started a gradual waking process. Then there is a sense of dissociation that still exists, as if I live in a universe exactly my size and shape, and that there is some kind of miniscule energy barrier between my universe and the one everything else is in. I just can't quite touch anyone or anything. Logically, I know this is probably the result of some kind of problem in the way my brainstem processes incoming information, some kind of bottleneck. The situation has improved tremendously, but not gone away. It can be very lonely in this universe on rare occasions. I have had to live the past 2 years totally on faith, as I cannot feel any God in this universe.
I hope this coming year will be the one in which I finish my book. If all goes well, the re solution to some of these issue will be in it. And maybe I'll finally learn some of those crazy keyboard shortcuts.
Update: 29 Apr 2004
It has now been 4 years since my AVM was discovered. That discovery sure changed the course of my history.
It's kind of hard to read the things I wrote previously. I can see just how far I've come. There has been so much improvement. It is good that I was mostly ignorant of the condition I was in. It is painful to look back on it today, but, despite the frustrations I expressed, it didn't really bother me that much.
I still have some memory and fatigue issues. My neurologist took me off Depakote this winter, saying he thought my memory would improve as a result. It did, and I felt my brain functions in general picked up speed as well. The headaches were almost unbearable for a couple of weeks, but they have gone away. I still take Topamax, but don't think it works as well by itself to prevent the flickering vision.
I saw my neuro-ophthalmologist in Salt Lake City about a year ago. She reviewed my test results and seemed to be speechless. She just stood in the waiting room giving me thumbs up signals. As we were talking later she said, "I've never seen anyone who worked so hard to recover. Remember when you first came in, you said you couldn't live like you were?"
I remember. She thought I was depressed. Maybe I was, a little. Mostly, I was just determined. I intended to change my lot. I had no intention of living the rest of my life with such poor vision and with my head in a fog.
There have been a lot of positive changes in my life. Nearly 2 years ago we sold the family ranch. I just about had a heart attack when I called the bank to find out what impact that had on my account. It sure is nice to go from a disability income to being able to take care of all my needs. I got the furniture from the ranch house, and since all the stuff that was in a 3200 square foot home didn't fit my 800 square foot apartment, I had to find a nice home to move into. Planting flower beds and making tomato sauce from my own garden produce was such a thrill. I had missed doing those things for far too long.
I've been doing a lot of traveling. I've done a couple of tours of western Mexico, and even developed the web site for the tour company. Want to know which airports have lax security and which ones have to sniff your shoes? I can tell you about Boise, Denver, Dallas-Ft. Worth, Minneapolis-St. Paul, Wichita, Portland, OR, Seattle, Amarillo, Salt Lake City, Los Angeles, and Puerto Vallarta. Seems like I'm forgetting some place. I can tell you a lot of stories about getting stuck in airports by bad weather, or trying to get around when the signs are placed out of visual range and no help can be found. Traveling alone in a foreign country with vision and hearing challenges is really exciting. But I have a blast.
It's not all just for fun. It's part of my recovery plan. Every time I get back from a trip, I'm exhausted and often stressed out. But there is always noticeable improvement in some aspect of my vision or brain function. The challenges keep me on my toes, keep me learning and growing, and keep my brain improving. I really believe that has a lot to do with how well I have done.
Getting out on my own has helped my confidence and self esteem. As a result, I've been able to work through and resolve a lot of the issues I wrote about earlier. I'm pretty well over my divorce. I'm impatient with my limitations, but accept them, and continue to work at improving or finding ways to make the most of them.
There is one problem I have never been able to write about before. It is something that I didn't understand at first, then alarmed about, followed by disgust and shame. I finally got it out into the open when talking with a friend who is a psychologist. By that time the issue was beginning to resolve as my brain healed itself, but it took me some time to do research and understand what it was all about.
You see, as soon as I started waking up from my surgery, I had the sense that I was a different person. At some point very early on it seemed that I could hear echoes of what sounded like the old voice I used to think with, somewhere in the deep recesses of my mind. It would be shouting something like, "Don't kill me! Don't let me die!" Initially, I found this very curious, and tried to reach out and explore this "voice". It's very hard to explain, and I'm only using a metaphor. I would try to dig in and seemed to find only fragments of that old self. So I just shrugged it off and went on to explore the world and grow as the new me. I would just stop for a moment now and then to listen to those ghostly echoes of that strangely familiar voice screaming "Don't kill me!"
As time went by and I become more comfortable with the concept of my new self, I began to try to suppress that "voice" and the bits and pieces and fragments of my old self that surfaced from the dark recesses of my mind. But they began to come up more and more frequently, with greater and greater urgency. I finally realized that the old self wasn't gone, a lot of it was still there, possibly functional, and wanting to get out. All of a sudden I was jealous of my own self. Talk about confusing! I had my new life. It was going well. My body wasn't keeping up as well as I would like, but it was the only one I had, so I was quite attached to it. Now there was this other person wanting to share the body, and I just couldn't have that. I wasn't interested in trying to merge, absorb, or combine with any of that apparently fragmented and scattered personality.
Sounds pretty wild, doesn't it?
Because of my background in social work, and studies in abnormal psychology, I knew about multiple personality disorders. When it hit me that I might be experiencing some kind of multiple personality manifestation, my new self found it intriguing, and wanted explore the situation in detail. My old self was horrified. My new self began to feel surges of shame, disgust, and humiliation that weren't a normal part of its nature. It knew those feelings had to be coming from the other self, and was surprised that the other self could be so strong.
The time came when it seemed I had two people fighting inside my head. Most of the time things were pretty peaceful, and there wasn't a sense of two presences. But now and then I would be facing a decision, and the new, curious self would opt for jumping into something. The conservative old self would suddenly come out, objecting, and arguing against it. The old self seemed to be gaining some control of my body, and I could be kept from an action until both selves came to some kind of understanding. Then, one day, a third voice stepped in and started moderating between the two.
Great. Three people in my head. Just what I needed.
Actually, that moderator personality did help, and brought about a good deal of coordination. It stayed in the background except when needed. My new and old self seemed to have a link to each other, and could sense each other. But this moderator was completely autonomous. I couldn't sense where it lay hidden, and couldn't pull it up on demand.
I realized, all of me realized, that this situation wasn't healthy. It was very hard for my new self to accept the fact that we were all going to have to accept each other and consolidate into one personality. It was clear the brain surgery had done something to bring about the situation, and that things were changing as my brain healed. My new self finally accepted the inevitable, and took on the challenge of trying to pull "us" together.
Since then things have come together nicely. The different voices have faded away and there is now only the one voice that I think with. I feel more full and complete. And older. I'm not the new, young baby personality that I once was. I'm not my old self, either. I'm a combination of most of what I as before the surgery, and all I became after. I still have the drive and curiosity and love of life, but that is tempered with the old caution from knowledge and experience. I think I've come out of it a better person.
I now understand what happened. After my surgery, one of the bleeds damaged the back of the corpus callosum, the connection between the two sides of the brain. We actually have two brains, as far as personality goes, and can function pretty well if we loose one side. Researchers have found that a person can have most of the connection between the brain halves severed and still retain a unified personality, as long as the very back portion is intact. That is the part that seems to coordinate personality between the brains. That is where my damage occurred.
So I had both sides of my brain exerting personality, with just enough communication for some awareness, but not coordination. Or perhaps the newer personality was the result of communication through other pathways. Whatever the case, as my brain healed, communication was re-established, the alien hand syndrome went away, and my old personality began to reassert itself. A surgery induced multiple personality situation. Between the continued healing and a lot of hard work, the parts of my brain regained the ability to talk together and coordinate personality, and I became one person in one body again.
It wasn't so bad at the time I was going through it, but now it seems like a nightmare. I don't every want to go through that again.
The reason I'm writing about this, as painful as it is, is because I now know that it is not an uncommon situation. However, few people talk about it, and fewer understand it. I want to let people know that it is not something to be ashamed of. If after brain surgery you feel different, feel that there is another part of you somewhere inside, don't worry about it. Give yourself time to heal. Learn what you can about split brain problems, and how to deal with them. It doesn't have to be a terrible secret you carry by yourself. You aren't alone; there are people who understand what you are going through. Get on a good recovery program to keep your brain active and learning, so it will grow the new pathways and branches it needs to restore communication.
There is other news in my life. While I've had plenty of excitement and fun, there have been plenty of challenges as well. My body has been giving me some fits, and in the past 2 years I've had 7 surgeries. Last September my positive outlook on life crumbled and I lost my way for a couple of months. First, I suddenly had to have my gall bladder yanked out. At least I felt better an hour after surgery than I did for months before. A week later, I failed the eye test when I went to renew my driver's license. At the doctor's office I was given a visual field test, and didn't see one single flashing light. So I had to make a quick trip back to Salt Lake City to see my neuro-ophthalmologist at the Moran Eye Center. She jokingly said, "Maybe we should do another MRI, but who wants to see that depressing mess again?"
Then she noted that I was wearing two hearing aids, and turned serious. She ordered the usual battery of tests, plus a few new ones, like an ERG. This is like the eye version of and EEG or EKG. The results all came back marked "NG" - not good. My ERG was flat. If it had been an EKG, I would be dead. There was no measurable electrical activity from my retinas.
The doctor reviewed the test results, and then told me she thought I had Usher's Syndrome, an incurable recessive genetic disorder that leads to blindness and loss of hearing. There were some small black spots on my retinas already. She said because the focus had been on my brain function she had missed it earlier, but it would have made no difference if caught sooner, there is no treatment, not cure. There is a retina specialist and Usher's researcher in the clinic, and she got me in to see him and sat in on part of the exam. He concurred with her diagnosis. He signed me up for the research project and genetics study, encouraged me to track down my biological relatives and see if anyone else had the syndrome, and sent me home to tell my children that they are carriers.
Unless their mother carries the same mutant gene they will not come down with the syndrome. However, I didn't have a good copy of the affected gene to pass on, since both parts of the pair are bad. That means they have one bad gene out of the pair, and are carriers. If they married a carrier, their children could come down with the syndrome. After talking with them, we all agreed that until better DNA testing exists, they should not have children of their own. Our genetic line must die out with them. They took that much better than I did.
My vision and hearing deteriorated faster than I could adjust. The problems left over from the brain surgery, the blind spots and the slow visual interpretation didn't help. I had no peripheral vision. My visual field was down to as little as 8 percent. Night vision was gone. I saw Mars one night when it was very bright, and I happened to catch Venus once with my weak central vision. It is hard to spot a dim pinpoint of light when you have no peripheral vision to help locate it. I rapidly developed cataracts, and had the natural lenses in my eyes replaced with artificial ones in November. I finally accepted my lot as a blind man going more blind, and signed up for services and support. It was hard to swallow my pride and accept the fact that this was something I couldn't recover from, but it was one of the smartest moves I've ever made. It sure made life a lot easier.
I went to Mexico again in January, traveling over 6,000 miles by ground in 3 weeks. I had forgotten how little lighting there is in Mexico. Since my balance was beginning to go bad, too, I took my white support came instead of my white traveling cane. The support cane is fine in the daytime when I can usually see where I'm going. At night it doesn't have enough reach to feel my way along. I was still learning to get around with it when I slipped off a railway carriage, missed the platform and ended up under the train, luggage on top of me. I finally had my epiphany in a little village where I fell off a 2 foot high sidewalk, and found myself spread out in a mud puddle on a cobble stone street, staring up in the dark. That's when I decided it was time to give up fighting to be normal, and learn to make the best of life as I am. It was a turning point in my life, and is when I lost my depression and began to love life again.
I took the plunge, got my adoption records unsealed, and with the help of my adoptive mother, tracked down my surviving biological relatives. That was an emotional roller coaster, mixed with acceptance and rejection. I have new family, and have done my duty to let others know that they are probably carriers of the syndrome. What they do with the information is their responsibility. It has been an interesting and rewarding experience. I've learned so much about my genetic heritage.
I just had a laser surgery to burn out the membranes behind my artificial lenses. They had clouded over in another kind of cataract. Now I can just make out the 20/20 line on a bright chart. That doesn't mean I can see well, I can just read the chart under optimal conditions. And I'm legal to drive again, though all my friends tell me they wouldn't want to meet me driving down the road. I stay from behind the driver's wheel as much as I can. I didn't drive at all until after the laser surgery. That should be the last eye surgery. There is nothing more to remove or replace, other than the retinas. The state of retinal implants has a long way to go before I would be willing to try one.
The medical expenses have been huge. Even with Medicare to pay 80% of many of my costs, my share one month alone came to nearly $10,000.00. My monthly prescription costs run as high as $1,000.00. I am not at all pleased with the new prescription benefits plan that was added to Medicare. I am a member of a couple of discount plans. According to the information the government recently sent me, if I left these plans and went on the Medicare prescription benefits plan, I would end up paying about $700 more per year out of pocket for my medications. I can't afford this. All the unexpected medical costs, plus the high expense of going blind - aids and services - has just about drained the savings I expected to last the rest of my life.
I have no intention of going back on a bare existence disability income. That's why I've decided, at the time in my life when the challenges are the greatest, to go back to work. Well, that's part of it. Another part of it is that I am just doing so much better, and am anxious to move on with my life. I have several projects that keep me busy, I'm webmaster for several domains, and still do a lot of writing. But I need to get out of the house more on a regular basis, get out in public, earn my own keep, and face new challenges. My vision seems to have stabilized for now. Eventually I even want to go back to school and work on an advanced degree.
Life keeps throwing out new curves, but each is a chance to learn something new. For a while I was afraid, and worried about who would reach out to me when I was all alone in the dark and silence. I have learned that I don't necessarily need my eyes to see or my ears to hear. I can get around in dark places, though sometimes with amusing results, and can communicate without hearing. I have aids to help with my vision, aids to help with my hearing, and can have a cochlear implant when my hearing gets bad enough. I'm learning to listen to my joints for balance information and no longer fall down the stairs. There is so much to do, so much to learn, so many good, supportive people to get to know. It seems that when one door closes two more open up. While I can't say life is easier, I can say it is certainly worthwhile, and I am gladder than ever to be alive.
Update: 15 February 2005
The world never stops turning. One of these days I will learn to slow down and just move along with it.
My life is full of surprises. There is never anything dull, boring or routine going on around here. In my last update I wasn't sure what the future would bring, and was a little apprehensive. The good news is, things have gone surprisingly well. My vision has been very stable. I went to the Commission for the Blind to work out a plan to return to work. I walked out of the appointment with a plan to start my own business. Today, I am the managing partner of a limited liability corporation that does web design and consulting. It sounds like a big deal, but so far I've spent more time doing paper work and trying to keep track of receipts, than acting as an information architect.
I'm pretty happy with my latest neuropsychological evaluation. Most of my cognitive skills are back in full force, or have even improved. I'm very slow with visual tasks and am slow at processing sensory input. I'm improving by leaps and bounds and feel almost back to my peak presurgery state, if you don't consider the visual processing. I still tire easily, but have a lot more energy and can keep going for a lot longer.
I will never be the fast efficient person I would like to be, but quality is often better than quantity.
I landed in the hospital toward the end of summer. It now seems several factors were involved. First, I had been going too hard, starting the new business and doing other things. I was just exhausted. Second, I was taking an allergy medication my local doctor had prescribed. Nobody here realized that someone with a brain injury may not be able to tolerate allergy medications. They can have a big impact on the brain. And finally, I was just diagnosed with even another disorder - dysmetabolic syndrome. My blood sugar levels have been high for some time, but the diabetes tests were always inconclusive. My doctor finally diagnosed my insulin intolerance and now one little pill a day solves several problems. Now my blood sugar and insulin levels are down to normal, I know to stay away from all prescription allergy medications, and try to get enough rest. I'm becoming more productive every day.
At the end of August I made my annual trek to Salt Lake City to see my neuro ophthalmologist. As usual, she brought her staff and intern in to see her favorite patient. She went over my entire life history. Then explained that she likes me because, unlike so many of her patients, she can explain my vision problems. Once again, she said there are 5 rock solid reasons why I can't see a thing. After explaining that and some of my test results, she went on to say that because I met even the more stringent rules of her state, she was signing the paper allowing me to keep my driver's license, and was even lifting the requirement for corrective lenses.
Yes, I can read the 20/30 line on the eye charts. Most of the time. And I can distinguish red, yellow and green colors. Most of the time. I have a narrow field of vision, but can see well in that limited area. Most of the time. I don't scare too many people with my driving, except when it is getting dark. I have learned to avoid driving at certain times and on certain days.
I've learned or relearned many things over the past year. These include such things as you can do almost anything you set your mind to. Life does not go in a straight line, it has ups and downs and lots of detours, but always takes you someplace new and exciting. You just have to keep your mind open to the lessons you learn along the way. Anyone is loveable, even me. Love has incredible healing powers. The process of trying to buy a home is agonizing. And finally, there is one thing in life and business, and only one thing, you can absolutely count on. Taxes.
Update: 27 July 2009
It seems odd that it has been so long since my last update. So few things have changed, yet so much is different.
I think the biggest difference is that I have reached a feeling of wholeness, of completeness. All the shattered, scattered, and spattered parts of me have coalesced into some kind of unity. I am not the person I used to be, but much of that person is a big part of who I am now.
Vision is still a struggle, and I am not allowed to drive at night. However, I seem to do well enough. I can drive longer distances but find it tiring. I just got home after driving over 1,200 miles in 3 days. I have made that trip a few times since the brain surgery, but never as the only driver. I'm not sure I want to do that again.
I was finally able to break all my old reading habits, then learn to read again with the way my vision processes now work. I can't read nearly as fast as I used to, or for as long, but it is a lot better.
I still write a lot, just not nearly as much. It seems that the urge to write out my experience is called hypergraphia. It is common in some people with certain kinds of brain damage. In my case, I think it kept me going and helped my brain rewire itself. I work at being more cogent, but now and then, someone tells me that the request was for a short note, not an epic tome.
I have learned a little Spanish and Chinese. But when I try to speak those languages I rarely get the desired response. Just blank looks.
Afew things that are still the same include the fact that I talk too much. I figured out it is time to stop talking when people around me start snoring.
I'm still overwhelmed by crowds. That is a lot of sensory input to sort in real time. Stores are still a challenge, too. But hey, by the time I find what I want at Walmart, I have walked 2 miles. All that exercise is good for me.
People still laugh at my stories and verbal slips. I wish I could figure out just how to be funny on demand, or where the sense of humor came from. But as long as people keep laughing, so do I. Maybe that is what is most important in this new life.
© Copyright 2000 Kyle Garner
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