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. It worked out well in the end. A young man took the room who was clean, quiet, and easy to get along with. However, paying the entire rent for 2 months was really hard on my budget.
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. In other words, 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.
He also said he was going to try to get a vision therapist to see me, but never did get back to me about that. I keep forgetting to follow up.
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 am kind of embarrassed to say 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 were turned up. And 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 that cane. It turned out it’s kind of fun to walk around whacking things in your path with it.
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.
On Election Day in November, I forgot all about voting until after dark. My voting precinct is across the street and half a block down at the school there. It was a nice evening, and I thought it would be good to walk over by myself. I took my cane, but not a flashlight. Even when I can see what is in the flashlight beam, it does not do any good. I can’t put together a whole picture out of the little piece I can see.
I do not normally walk on that side of the street or that direction, so it was new. There is a streetlight at the intersection outside my apartment, so I could see fairly well, but couldn’t judge depth. The cane took care of that. However, the sidewalk along the street and the walkway up to the school were unlighted. Again, the cane kept me on the sidewalk until I was even with the doors of the school. I could see the light pouring out. When I tried to head toward the doors, I stepped onto grass. No sidewalk. I had to hunt for the edge of the sidewalk I was on with the cane, and in the process lost my orientation. The lighted steps and doors at the building entrance were still only about 50 feet away, and I could see them, but I could no longer figure out how I related to them in space.
After working my way further down the sidewalk, my cane quit hitting lawn on side and went skittering across concrete instead. I did a 90 degree turn, expecting to hit the edge of the walk again on my right, but didn’t. The walk to the school met the sidewalk at an angle greater than 90 degrees. This had me disoriented again. I gave up trying to follow the walk, and just headed for the doors, moving slow and sweeping the cane in front to make sure I didn’t fall into a hole or walk into a statue or something like that. No problems. I just encountered the other side of the walk, and finally figured out it was curved instead of straight. What a terrible thing to do to a vision-impaired person!
I got to the steps, which were lighted, and was ready to put my cane away, when several of the precinct volunteers came rushing out, offering to help. I tried to explain that I could see well enough now that I was in the light, but saw they were not listening. So I just kept my mouth shut. I was concerned about punching the right hole on the ballot cards, but the voting stations were all lighted and the stylus and cardholder were easy enough to use. I might also mention that we did not have problems with chits or dimples in this state. Even a person like me left behind an unambiguous ballot.
On leaving, I had lot’s of help again, out to the point where it got dark. I missed that odd intersection of the sidewalks again, and bumped into a dark colored vehicle of some kind. However, I got back down and across the street, and into my apartment without further incident, feeling good about having been able to get out on my own. Even that little bit of independence means a lot.
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 similar to my visual field, I can drive fairly well in normal daytime conditions. Heavy traffic is not a big problem, and no passengers have complained yet. Of course, none have returned for a second ride, either. Nevertheless, I usually drove myself to the appointments at the Commission for the Blind. They always asked how I got there. When I told them I drove, they were always alarmed. “You did WHAT?!!” It’s hard to explain that processing traffic on a road is much different from processing items in a grocery store, or dealing with a crowd.
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 mentioned 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. At one point, I got a message from another with the same name as mine, who lives in my old home town, 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.
In addition, this past year, I overcame my own prejudice and learned to use a white cane when I needed it. It hasn’t been out for several months now, but I am still tempted to use it in crowd where I become disoriented too easily. I discovered that despite slow responses, and not being able to see or hear or speak all that well, I could the command the respect and cooperation of a group of people interested in drama who never elected me their leader. I told them from the start there could only be one director, and that was me. No one ever questioned my self-appointment. I was able to lead and teach them things I never knew I could teach. Now I’ve been ASKED to do more of the same.
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 if I am in control of the situation.
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.
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 wakening 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 2years 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.