April 29, 2004 -- There have been a lot of changes in my life over the past couple of years. Recovery has continued well, slower than I would like at times, but steady.
In August of 2002 my financial situation improved. I was able to purchase some aids and programs to help speed my recovery. I thought a good, touch sensitive keyboard would improve my hand to eye coordination, finger dexterity, and sound discrimination. I was surprised at how quickly my keyboarding skills began to return. My left hand is still awkward, but greatly improved.
In January of 2003 I went on a 2 week tour of western Mexico. It was great. On the morning I flew out of Boise our plane had to be de-iced twice. When they opened the door in Puerto Vallarta I nearly got knocked over by the blast of humid heat. We traveled on further south, down to the area where the Colima earthquake had just occurred. It was great to play in that 80 degree plus, clear ocean water and on white sand beaches that stretched for miles with few people. If you want to learn more about the tour company, check out the web site I put together for them. Book mark it, close the window, and keep on reading. (grin)
The trip was kind of hard on me, but my vision and brain speed seem to improve a lot by the time I got home. That was about my third major trip in 4 months, and I think the challenges of travel are good for the brain. They keep you on your toes and learning. This encourages the growth of new branches and pathways, even new brain cells. I recommend touring travel as a part of any recovery program, once you are up to it.
Just a side note about some of my trips. Apparently I must match some profile description as a possible terrorist, or my name must be on some list. Many times I get extra security screening and scrutiny. After landing in Los Angeles , on my way back from Mexico , I was standing in line for Customs. An agent came down the line checking our cards to see if we had them filled our correctly. He glanced at mine, then stopped and took it from me, stared at it for a moment, then said, "Hmmm, Garner, Kyle. Sir, step out of line, over here. See those yellow arrows on the floor? Follow them." The next thing I knew I was marching to a distant, deserted part of the terminal, surrounded by 5 burly customs agents, each with a hand on a holstered gun. They finally had me stop, stripped me of all my outer wear, and while several agents carefully searched me and everything I had, another agent at a computer started asking questions: My name, my address, my social security number, if I had ever had any problems with the police at home. That last stumped me. I told him no, not even a traffic ticket. He asked the question several different ways, and then asked if I had a restraining order. No. He asked if I didn't have an angry girlfriend or someone in the area who could have taken out a restraining order. I was really wracking my poor damaged brain, and wasn't coming up with anything. He didn't seem happy about that. Suddenly, all the agents doing the search just vanished. The one at the computer cleared his screen, said I should check with the police when I got home, and let me go. I got to my next flight with just a minute to spare.
When I got home I called the police and told them what had happened. They checked their records, said there was no restraining order, that I am a citizen they are glad to have here, and that they would be angry over the kind of treatment I got. What can you do? In support of the misnamed Patriot Act we threw away a lot of our hard won rights for a false sense of security. It seems to me we did a better job of tracking security threats (such as spies) during the height of the cold war, while protecting or freedom, than we are doing now. OK, I'll get off my soap box. Bet I'll be in real trouble next time I cross the border.
Shortly after the Mexico trip I went back to Salt Lake City for an annual check up at the Moran Eye Center. My doctor seemed to be ecstatic. She saw some of my test results, including the visual field charts, at the receptionist's desk in the waiting room. She just stood there giving me thumbs up signals with both hands. As we were talking later, she explained that there was quite a bit of improvement in my left eye especially. A lot of the scattered blind spots had consolidated into one larger spot. All signs of swelling were gone, and the nerves and blood vessels looked normal. That was a big improvement. Optic nerve conduction speed was actually above normal. I could read the 20/25 and 20/30 lines on the chart. There were signs that I was in the early stages of forming cataracts, but she said it would be years before that was a problem.
I had driven most of the way to Utah, until we hit the state line and some road construction. It was near sunset, the painted lines on the freeway had been almost erased by the sand put down when it snowed, and it was starting to snow. In those conditions the road all but disappeared from my awareness. I had to pull over and let someone else drive. That fact that he was having trouble seeing the road told me I wasn't doing so bad, after all.
That spring I moved out of my little apartment, away from the traffic, the noise, the drugs, and other problems downtown, into a large house on a cul-de-sac in a quiet upper middle class neighborhood on the west end of town. There is a nice cherry tree in the back yard. I have really enjoyed puttering around in the flower beds and the garden. My son and my housemate from the apartment share the house with me and help take care of the large lawn. I just wish they did more to help keep the house clean.
Over Memorial Day Weekend in May, my son and I went on a canoeing/camping trip with friends. The others had low profile kayaks. We got stuck in the canoe, the pack mule for the group. It was a challenge paddling into a brisk wind for several miles. I thought I was in pretty bad shape and would have some trouble, but my son, sitting in the front of the canoe, had trouble keeping up with me. Click here to see a picture. Close that window to continue reading this page.
In June my son and I drove to Texas and back. I did most of the driving. I was nervous about it, especially the city driving. It turned out that city driving was the easiest part. I had more trouble with perspective on the more open stretches of country driving. That was the longest drive I've done since the surgery. I had made a similar trip before, but didn't do that much driving.
During that trip I was feeling that things were getting a bit hazy, and I was having a lot of trouble with the contrast in the morning or later in the evening. I attributed it to being tired. As the summer wore on, it seemed I was "tired" all the time. Things were getting to be really hazy and blurry. The few times I tried driving after dark, it was really hard. Again, I decided it must be because I was tired. There seemed to be other subtle changes, but I attributed them all the being tired. I was busy and under some stress all summer long, and thought that was just wearing me down.
In September I finally decided to see the doctor about that nagging pain under my right front rib that had been making me catch my breath all summer long. I suspected it might be my gall bladder. An ultrasound exam showed it was full of stones and in bad shape. I was sent to see a surgeon and scheduled for surgery right away. I had had extensive sinus surgery about 10 months before. All those ct scans and MRI's had been showing problems in my sinuses, and I finally had all that corrected. There were complications, and I had to have a second sinus surgery the following June. So I wasn't looking forward to another surgery. But it was quick and easy, and I was home within a couple of hours. I think I took a pain killer once, only because I was afraid I might need it. I felt better an hour after the gall bladder surgery than I had felt the previous 2 months.
About this time my driver's license was up for renewal. I had been dreading this for three years. But I was sure now that I could pass the eye test, so I went in with confidence, looked into the machine, and promptly failed. I failed so many times they told me I wouldn't be allowed to come back in. I had to have a doctor sign a form, instead. I panicked.
I found someone who could see me that day. I went to the office, and they sat me down at the machine for a visual field test. "Now, just push the button each time you see a flash of light," I was told. I sat, staring at the center of the hemisphere, waiting. And I waited, and waited some more. Suddenly there was a beep and they had me change eyes. More waiting, and waiting, and waiting. Suddenly, I saw a flash, I clicked the button. There was a beep. Someone asked me, "Didn't you see any of the lights?"
"You mean you've already started the test?"
We went to another room, and the doctor stood in front of me and held out an arm. "Where are my fingers," he asked. Being the literalist I am, I answered the question he asked. "On the end of your hand." He didn't seem to appreciate my honesty. Since I was supposed to be looking at his nose and couldn't see them, there wasn't any thing else I could say that would tell him where his fingers were. So he changed tactics and asked me how many fingers he was holding out. Unless they were close to his nose, I couldn't tell him. Then he got a flashlight, and moved it around while I looked at his nose, and asked if it was on or off. I did a little better, but still had trouble if it got very far from his face.
He checked my eyes, and then I tried reading the charts. With some changes in the corrective lenses we got it to the point where I could just make out the 20/40 line. He then sent me back to the visual field test, with he machine set up differently. This time I saw a number of flashes, I'm guessing close to half of them. Then he sent me to his office. I was depressed. It was clear something was wrong, and I was expecting him to come in and tell me he wouldn't sign my paper, and I would never drive again.
After a while the doctor finally came into the office. He explained that I had a very narrow field of vision. He said I also had cataracts that were reducing my vision, and they needed to be taken care of. He said he had checked the state regulations, but there were no rules regarding field of vision. Since I had been able to just barely read the 20/40 line, the minimum requirement for driving, and he could find no other rules to prevent him from doing so, he had no choice by to sign off my form. He did make an extensive note on it about my very limited field of vision, and put down a requirement to have my vision checked annually. I took the form to the License Bureau, where the lady just glanced at it, made a note on her computer, and told me I would get a notice every year with a form for a doctor to sign in order to keep my license. Then I got my license renewed for 8 years. I just have to have a doctor sign a form each year saying I can read the 20/40 line with at least one eye, and turn that form in to keep the license.
Watch out, people, blind man driving!
I had been forced to acknowledge that something was wrong with my vision, that it had deteriorated significantly in just a few months. The cataracts that weren't supposed to be a problem for years had formed rapidly, and something else was wrong, too. I was afraid something was going wrong in my brain again, so I made an urgent appoint in Salt Lake City a year and a half ahead of schedule.
While I was talking to my doctor there, she noted that I was wearing 2 hearing aids. I had gotten these digital marvels about a year before. They make a big difference in my life. She got quiet, and a lot more serious than normal. She ordered the usual battery of tests, plus a few new ones, including an ERG. An ERG measures the electrical output from the retinas after a flash of light. There should be a big blip on the chart after a flash of light. On my charts, there was nothing but random static and muscle twitches. They were flat after a flash of any color of light. My visual field test showed an 8 degree field of vision. Another test showed very limited central vision response. As a technician said, the results were NG -- not good. Click here to open pictures of the test results in a new window.
After reviewing the test results the doctor said we could do another MRI, "but who wants to see that depressing mess again." She said the problem wasn't in my brain. Instead, she said she believed I had a condition known as Usher's Syndrome. This is a recessive genetic disorder which is characterized by loss of vision and loss of hearing. She said we have been focusing on my brain problems for so long that we missed the first signs of the disorder. It wouldn't have made a difference if it had been caught earlier, though, because there is no treatment or cure. She then took me across the clinic to see the retina specialist and Usher's genetics researcher at the University, and he did another exam and concurred with her diagnosis.
It was quite a shock. After working so hard, all these years, regaining so much vision, and finally getting my life back on track and seeing things go my way again, to have this happen! The more I studied the details and physiology of the syndrome the more clear it became that this was something I will not recover from. There is no known treatment, other than taking Vitamin A. There is no known cure, other than retinal implants, and those can barely distinguish large objects and shadow, and are still experimental. I have known a person with a cochlear implant, and they do provide a lot of useful hearing. But the damage caused by the implant destroys remaining natural hearing, so that isn't an option until profoundly deaf. The thought of living in an increasingly dark and silent world was very discouraging.
I had to go home and explain the situation to my children, and why they should consider not having any children of their own. Our blood line needs to die out with us. That was hard for me to take, but it didn't seem to bother them much. They were more concerned about how rapidly the deterioration would progress (probably keep good central vision for several years), and how they would communicate with me when I couldn't see or hear well at all. I don't know if they understand the genetics, but they seem to understand that they are carriers, but probably won't come down with the syndrome themselves. Their mother would have to have been a carrier of the exact same mutant gene for them to be at risk of developing the syndrome, and we aren't sure that the syndrome exists on her side of the family.
In November I had my cataracts removed in 2 separate surgeries. If you live
in the
By the end of December I had recovered from the eye surgeries, but my vision was getting worse. I could barely make out the 20/40 line with my right eye. My night vision was gone. I went back to the Commission for the Blind and signed up for services again. My balance started getting bad, another symptom of Usher's Syndrome, and I had to get a white support cane. I had not been using a white cane for some time, but the counselor at the Helen Keller Foundation convinced me that I owed it to other people as much as to myself. Other people need a warning that I can't see them coming from the side, and can't see children running around my feet, things like that. After I tromped on a little girl at the mall who darted out in front of me, right into my blind area, I realized how important this is. She ran to a parent crying, saying, "That big bad man stepped on me." A white cane prevents confrontation with angry parents. I felt guilty at first about carrying a cane, but was told that about 90% of people who carry white canes do have limited vision. It does help and there are fewer accidents when I have the cane.
I was depressed and pretty stressed out over some family situations and finances when I left for a 3 week trip to Mexico this January. It was good to get away again. We were having our first real winter in several years in Idaho, with plenty of snow and cold. I was looking forward to the hot sandy beaches and the warm ocean water. It was a surprise to wake up on the third day of the trip to 3 inches of new snow and boys throwing salvos of snow balls against our hotel room door. The whole hemisphere seemed to be colder than normal, and the ocean temperature had dropped a couple of degrees, making it a little less than comfortable in the cooler breeze.
I had an epiphany, a moment of revelation, during the trip. I had been trying so hard to live a normal life, determined that I wouldn't let the Usher's Syndrome stop me from doing any of the things I had been doing before, or doing them in much of a different way. I was reluctant to accept the blind, vision impaired, or handicapped labels. I didn't want to make much use of the services or aids that were available. I thought I was being strong, noble, and self sufficient. Then I fell off that elevated side walk in an out of the way town after dark, while trying to feel my way around a pile of rubble. I landed on my side in a mud puddle on the cobble stone street, staring up into the dark. I was humiliated. I was scared. I was shocked. I was breathless (it had been quite a jolt). The other members of the group were ahead of me, and I was alone. It suddenly dawned on me I was stupid. My pride and stubbornness were keeping me from learning to get around better, from getting the aids I needed to make life easier, and from utilizing the resources at my disposal. I decided it was time to embrace who and what I was, and make the most of it.
By the time the group retrieved me, we got to a restaurant, and I got cleaned up a little, someone had gotten up the courage to remark, "You really are blind, aren't you." I held my tongue. It had taken me just as long to notice.
After I got back from the trip my depression was gone and I was ready to tackle the world and enjoy life once more. I was exhausted and had caught all kinds of bugs. Couldn't get far from a bathroom or a tissue box. It took several rounds of antibiotics to clear them up. I should have gotten the medications in Mexico, where you can get the exact same brands from the same manufacturers, over the counter and for about a tenth of the cost. But the trip was worth it.
In March I had my eyes checked again, because my vision seemed to keep getting worse. I could no longer make out the 20/40 line on the eye chart I have at home. At the doctor's office we couldn't get any correction that would let me read all the letters on the 20/40 line. The doctor said I had a new cataract behind the artificial lens of my left eye. That explained the cloudiness and the brownish cast I was seeing.
So I went straight from his office to PCLI, a few blocks away, where my cataract surgeries had been done, and scheduled an intake exam and laser surgery a week later. I had a minor surgery on both my feet in late December, and was just tired of surgeries of any kind, but we do what we must. If this would help my vision, I wanted it done as soon as possible.
When I had my eyes checked at PCLI, I was told my eyes were trying to grow new lenses, that this was not unusual, and I needed laser surgery on both eyes to burn out a hole behind the implanted lenses. I went straight from there to the room where they did the laser procedure, and a few flashes later it was all over. I was seeing red spots, but it was done. The next morning I was on a plane to Texas for a long Easter weekend. On my return I had my eyes checked again. They had healed well, everything looked good, and I could read the 20/20 line on the chart. That doesn't mean I can see well, I still have the blind spots, no peripheral vision, no night vision, some interpretation and other problems in my brain, but I can read a little easier, and am still legal to drive. Care to meet me on the road?
There is an issue I haven't written about before this month. I experienced surgery induced multiple personality disorder for some time. I didn't understand what was going on for a long time, so didn't know how to explain it. When I realized what was going on, I was too ashamed to speak of it. I have healed to the point that the situation has resolved itself, and I've researched it enough to come to some understanding of what happened.
It seems that personality can reside in either half of the brain. Normally, the brain halves are able to communicate and coordinate personality, so you are always a whole, unified person. However, if the nerve fibers that provide that communication are damaged, problems develop. Both sides of the brain can manifest personality, or the personality can fragment. I had a bleed that damaged the very part of the brain that provides the communication necessary to coordinate personality. I woke up from surgery feeling like a new person, developing a new personality, yet vaguely aware of pieces of my old self lurking somewhere in the recesses of my brain. As time went by that old self began to reassert itself more and more, and eventually I was having arguments inside my head. It was very confusing. I felt like I had two people inside me. Apparently, as my brain healed, communication was slowly established again and I was able to merge the two Kyle's living inside the same body, and now feel whole and complete, with all the elements of both. The alien hand syndrome is completely gone, through my left hand is still a bit weak and slow. I no longer feel that separation from the rest of the universe. I finally feel I belong in the world.
It's been a long, slow process. But it has been sure and steady. There is still a ways to go, but I am definitely getting there.
The expenses have been overwhelming. Even though I am covered by Medicare and only have to pay for 20% of most of my medical bills, with all the surgeries and medications my expenses one month alone were nearly $10,000.00. The savings I thought would last me most of the rest of my life are almost gone. So I am changing tactics. I don't intend to go back on the bare survival disability income, living in a small rental assistance apartment. That just would not be a happy, productive life style. Instead, I'm taking advantage of the resources available for vocational rehabilitation, and plan to go back to work soon. I feel confident I can handle it mentally, though I don't expect it to be easy at first. Physically, it may be a challenge, but I can learn to deal with that. My memory has improved greatly since my neurologist took me off Depakote. I can still utilize a lot of my old skills and learn some new ones, so I can do work that is interesting, challenging, and rewarding, even if I go completely blind.
I'm looking forward to the future. Although I don't need it yet, I'm studying Braille and learning other low vision skills. I now know that I don't need eyes to see or ears to hear, and am learning to listen to my joints so I don 't fall down the stairs any more. I've regained my zest for life and wake up every morning glad to be alive.
Until the next update. I'll try to not let nearly 2 years go by before the next one. Thanks for reading and sticking with me.