Mike's latest perceptions

Last Update: June 27, 2003

The following is organized in chronological order. Mike May was totally blind from age 3 through 46. Some of his experiences since regaining low vision, March 7, 2000, are things, which would have not been possible without some vision, others are things, which, may be more convenient with some sight but could be done just fine without sight.

To answer the second most asked question, here is what Mike can currently see. His uncorrected vision is roughly 20/1000 and he is near-sighted according to Doctors Goodman and Carson. This means he can count fingers at 2 to 5 feet depending upon the lighting. Mike can read one-inch high letters half a foot away if the contrast is good. He can see colors quite well and get most visual information from colors. People’s shapes are recognizable up to 10 or 20 feet but Mike could not tell you if they were short or tall, or had blonde or dark hair over 15 feet away.

Mike May can see large objects at quite a distance; buildings hundreds of feet away, the moon, clouds, forests and cars on the road. He often has to touch things to identify what they are and how far away they are. His brain is constantly cataloging new objects and situations. Time, fate and experiences will determine what Mike May will eventually see. He shares his personal experiences along this interesting road in the following journal.

2000

• March - June 2000
• July - September 2000
• October - December 2000

2001

• January - March 2001
• April - June 2001
• July - September 2001
• October - December 2001

2002

• January - June 2002
• July - December 2002

2003

• January - Latest story 2003

To hear about Mike May's experiences in person, see the page on inspirational speaking.:

Journal of what Mike is seeing

March 20, 2000

I took my first airplane flight with low vision. It was a very bumpy flight and I was keeping my mind off this by working on my computer. After about 30 minutes into the flight, I suddenly realized that I could look out the window, so I did. I could see a couple grades of white lines in the distance and brown and green patches sliding by on the ground. We were at 27,000 feet and I could see the ground. More significant to me was the fact that being an airplane for me in the past without sight always felt like being in a time machine because I had no connection with the outside world. This is a foreign concept to most people with sight.

I was so excited to find out what I was seeing that I decided to ask my seatmates. I turned to the lady next to me and said, “excuse me, I just got my sight back last week after being totally blind for 43 years. Could you help me figure out what I am seeing?” There was a big pregnant pause as she decided if I was a lunatic or a miracle.

I broke the silence by asking if the white lines I saw in the distance were mountains. She said, “no honey, that’s haze.” From then on, she and her husband gave me a play by play of the central valley, fields, channels, roads, Tehachapi Mountains and finally the Los Angeles coast line. I could see the water and even the waves. I picked out white dots, which must have been sailboats and even worse haze.

I parachuted once in 1983 and I would like to do it again so I can see from that perspective. It is strange to think back over explaining to my kids about what they were seeing out the airplane window when they first flew but now I know first hand the awe they experience. I love the power of the ocean when I can hear it and now I had a sense of that expanse and power while far above it.

March 25, 2000

I have just returned from my first conference and my first opportunity to experiment with new travel vision. It was also my first intense business and social interaction with the use of low vision.

Carrying equipment and boxes can be challenging when you have one hand occupied with a dog or cane. I was able when necessary to fold up my cane or leave my Seeing Eye dog Josh in the hotel room so I could use both hands to carry equipment.

When standing in line, I didn't have to concentrate on whether or not the line was moving. I could easily see when the person in front of me moved ahead. I could easily determine where he end of the line was and it was not necessary to ask. I was able to more easily orient myself in the complex exhibit hall and to avoid others with canes or dogs.

When I came out of an elevator, I could look both directions and more easily see which way the hall or front lobby was. I found it very distracting to look at people’s faces when I was having a conversation. I can see their lips moving, eye lashes flickering, head nodding and hands gesturing. First, I tried looking down and if it was a woman, a low cut top would be even more distracting. It was easiest to close my eyes or tune out the visual input. This was necessary often in order to pay attention to what they were saying. I am sure there will come a time when all this visual communication will mean more to me but for now it is just distracting.

Although I can't yet recognize faces, I could remember someone’s hair color and color of clothing. If I was talking to one person at our booth and someone I had seen earlier came up to me, I could see who it is and acknowledge him or her before they said anything.

March 26, 2000

The soccer team I helped coach last Fall got together today for a reunion potluck. There were 14 kids and 12 adults. It was fun seeing what people looked like, mostly people I had just met in the fall and didn't know well.

The kids played soccer and asked me to play with them. I am more tentative with sight than I was without. My perception of space and how I move in it is still confusing enough that I don't want to run over one of these little guys while running after the ball. I was less concerned about this and played with them regularly when we practiced before. Still I can see the ball flying through the air, which gives me a thrill. I could always go after it before when it was on the ground but not in the air. Now I can.

The Picablue team presented me with a large framed photograph of the team, signed by them all. I could read their signatures and pick out their faces in the picture with some help from the other coach, Charlie.

March 27, 2000

The travel clues I am getting are extremely helpful. I have always struggled when working my Seeing Eye Dog, rolling a bag through the airport and then trying to carry a cup of coffee. It is impossible not to spill the coffee.

Today, I let go of the harness and carried the coffee in that hand. I walked slowly but I navigated through the people and other obstacles without the benefit of Josh guiding.

On the plane, it was useful to be able to see when the flight attendant was looking at me to take my order. Particularly, if I had headphones on, this was tricky to determine in the past.

April 3, 2000

I played a ball game today with my 6 year-old son, Wyndham, which involved kicking the ball back and forth. The object was to catch the ball, a very visual game to be playing.

It was interesting to see how I was able to judge my eye-hand coordination. As the game progressed, I was able to run 6 to 10 feet and catch the ball in the air. Other times, it would slip right through my hands while standing still. I am taller and faster than Wyndham and he can see much better than me so we were quite evenly matched. He was better at kicking the ball straight than I was. We each caught the ball 20 times over the course of an hour. I had a great sense of satisfaction chasing that white ball around in the air.

April 15, 2000

One of the biggest events in Davis is Picnic Day, which I attended today with the two boys, Jennifer is out of town. This is my first parade with some vision and it caught me by surprise.

The setting is important before you hear my description of this first parade.

This is the 3rd Picnic Day for us after moving to Davis 2 years ago. Today, we found ourselves sitting on the curb surrounded by new friends we had met in town. Carson was sitting in my lap excitedly describing parade floats and occasionally dashing out to squirt them with silly string. My eyes were bugging out at all the colors and new visual information, or should I say "my eye"

The first band I saw was the UC Davis Aggie marching band. They stopped right in front of us, literally 3 feet away. The instruments burst forth, drowning out what Carson was telling me. I have never known of music as anything but auditory and yet, just an arms reach away; this music was every bit as visual as it was audible. Legs were rising in unison, band members were marching in patterns I couldn't quite follow, instruments were flashing and the clothing was all the same. Only the colors of their hair and the instruments were individual. It all fit together so beautifully, visually and audibly. And, for the first time since I got some sight on March 7, tears ran down my face.

On the one hand it felt odd that I was crying over the Cal Aggie marching band while on the other hand it was wonderful that it didn't make sense, just like having sight or not having sight doesn't make sense, it's just the way it is. Of course, it was the combination of feelings which contributed to this "goose bump" moment; happy to be with my boys, friends and to be in a cohesive energetic community. What a moment, what a day!

April 23, 2000

The past 5 days have entailed a host of new things to see. We took 5 days to drive to Ashland and Portland Oregon. This encompassed Earth Day, Carson's birthday and Easter. Twenty hours of driving is so much more palatable when one is able to see the scenery.

One highlight of the trip was seeing my 3 year-old twin nieces for the first time. It has always been a challenge to tell their munchkin voices apart and they seldom sit still long enough for me to feel the difference between them.

Lanie has lighter blonde hair and Clare's is a bit darker blonde. It was fun to be able to recognize them before they said anything. It did make me nervous watching the two little ones wrestle with Carson and Wyndham. It's easier to be a laid-back parent if you can't see these things. No one got hurt and it was enjoyable to watch the boys interact with their cousins and to know who was who.

We were part of a throwback to the 60's style parade in Portland on Earth Day. We represented the fish species. What a crazy colorful costume party it was. It was fun to see all the colorful people even if I couldn't recognize what they were. It was useful too to be able to see my family so we could stay together in the dense crowd.

Also, on this trip, we went to a couple baseball games for friend's kids. I could see the white ball being pitched, hit and thrown as well as the kids on the bright green field. I was amazed how good these girls were at the game. I particularly enjoyed seeing if I could tell if the pitch was high or low. It's bad enough to have a blind or partially sighted back seat driver; a partially sighted umpire is even worse but I mostly kept my opinion to myself.

We visited the house we lived in for 6 years outside Ashland and it looked every bit as beautiful as it felt. I could now see the view of the valley and hills beyond which I knew were there but hadn't actually seen visually.

I have been noticing some discomfort when I use the phrase, "nice to see you." I have always used that word quite comfortably. This phrase means much more than just nice to see you with my eyes. It means good to be with you again; nice to be in your presence; nice to hear you; etc.

Now, when I say, "nice to see you", everyone takes it literally. Suddenly the phrase is one dimensional instead of multi dimensional. It feels weird to have to think about something, which before was so natural.

I notice as I write this update driving down Interstate 5, that I have to close my eyes when I am composing. It is too distracting to look around while thinking and writing at the same time. I still am unable to integrate the visual information along with other sensory input. The visual sense dominates particularly when I am speaking with someone and seeing their body language. I will be glad when I can integrate the visual information. All in good time I suppose.

April 30, 2000

Just in the nick of time. I got the okay from Dr. Goodman to go skiing as long as I had good eye protection. So, armed with glasses and goggles, the May family headed for Kirkwood on this absolutely gorgeous weekend for a little, See and Ski.

I particularly wanted to ski for my first time with some vision at Kirkwood because Jennifer and I met there 16 years ago when she volunteered as a guide for our Discovery Blind Sports program. I learned to ski at Kirkwood 20 years ago and my boys also cut their teeth, almost literally, on the Kirkwood slopes. I lived one season at Kirkwood with my friend and race guide, Ron Salviolo. The Kirkwood slopes are so clearly etched in my mind’s eye, I was anxious to see them with my newly working eye.

The boys wanted to ski a beginner run so this gave me a chance to comfortably look around and to see what I could see. I was a bit concerned that the visual input would make me tense as people and lift towers flitted by startling me before I could understand what they were. If seeing the nearby traffic on the slopes was anything like seeing cars zipping by in a vehicle, I thought I might opt to close my eyes and ski the way I know and love so well.

As we skied down Chair 1 at Kirkwood, I got goose bumps, despite the warm sunshine, as a flood of beautiful sights came to me. Jennifer was in front of me, guiding like usual, and she looked very good, just as I had always imagined, graceful and attractive. The trees were a deeper green than imagined and so tall. I knew they were tall but I never thought of trees as much more than obstacles to be avoided. The way they stood in stark contrast to the white snow was so incredibly vivid.

Above the trees were the distant cliffs and higher still, the blue sky, not a cloud in it. I could see the different colors of the ridges and guess at what those colors represented. Yet, I only knew from logic that those cliffs were a couple miles away rather than a couple hundred yards as they appeared. Good thing I knew these slopes well as I was hardly hearing Jennifer and I was looking at the panorama and not at where I was going. There was just so much to take in and I couldn't absorb it all.

When we rode up the chair lift, I was amazed how steep it appeared looking down the mountain. I had a picture in my mind of these slopes and the visual image was the same with a whole lot more detail and definition.

Once I stopped gawking at the land and snows capes, I could pay more attention to the skiers and to take on more challenging terrain. It was difficult at first to distinguish between shadows and stationary objects, whether they were people, poles or rocks. It was interesting to see skiers and snow boarders, which have such a distinct difference in sound and have an equally different visual countenance. I even started skiing more independently as Jennifer skied in front of me but stopped calling out directions.

I stopped thinking and really started skiing when the boys dragged me into a gully. This is where kids always love to ski and I have always hated because it is tricky with a guide to know where the sides of the gully end and the trees or cliffs begin. Now, I could distinctly see the tree line, which allowed me to cut loose. I skied ahead of Jennifer, zipping up one side of the gully, across and up the opposite side, just like the other kids, trying to get air when you hit the peak and rotate the reverse direction. They say that a 4-wheel drive vehicle is actually more dangerous than a 2-wheel drive vehicle because the 4-wheeler encourages one to get into more dangerous situations. You just get stuck further from home. I was feeling a bit like this with my newly discovered gully-riding abilities. What if there was a bamboo pole, marking a rock, which I didn't see? What if there was a ditch, which, blended with the rest of the snow? Fortunately, this time, the odds were in my favor and I survived my first wild gully run quite happily.

There were so few people on the slopes this last weekend at Kirkwood that I was able to ski, unguided, quite well. I was happy to have Jennifer and the boys watching out for me nonetheless. I also had a film crew documenting my experience in order to give publicity to the blind ski program at Kirkwood and to give Kirkwood recognition for its role as one of the most supportive ski resorts in the world in terms of blind skiing over the past 22 years. My unguided skiing was sloppy particularly when we got up on the black diamond runs. I was distracted and proud as well too see the boys skiing this rather challenging terrain. Hard for me to ski well and take all this in at the same time.

I found that my mind and my body were struggling over which was in charge on the slopes. It is so weird to feel like I know everything about skiing at Kirkwood and at the same time to have this feeling of so much newness that the visual dimension added. I made the mistake of telling a reporter on the chair lift, as I struggled for an analogy, that this day of skiing was "like having sex with the lights on." Of course, this was the sound bite with which they led their news story. I was trying to make the point that skiing was a fantastic experience and one did not need sight to fully experience it. At the same time, the visual dimension was not to be ignored.

I felt this mind-body struggle also when I skied my first moguls. I have learned to ski the bumps by keeping my skis pointed down the mountain and making very committed and regular turns. When I could see the bumps, I was thinking about when I should turn instead of committing myself as is still necessary, with or without sight. It doesn't work to hold back or sit back when skiing in medium to big moguls. Although I may have been flailing, I was still very much enjoying the process of experimenting. I made it through this first bump run without falling and without a guide, just the cameraman, Curtis Fong and my son Wyndham on the slope with me. At least they are the only ones I could see.

As if I needed it, now I have just one more aspect of skiing to entice me to the slopes. I look forward to seeing more beautiful panoramas and skiers at Kirkwood and other mountains. I don't plan on doing this without a good guide, as I would like to come back from these adventures intact. I also need someone with good eyeballs to explain to me what I am seeing and to fill in the details I still cannot see.

May 8, 2000

Another "First" today, going to the beach. This was the 5th and last day of filming with NBC Dateline. I spoke to a 4th grade class in Palo Alto, hiked some trails near the Stanford dish and in Golden Gate Park and Baker Beach in San Francisco near the Golden Gate Bridge. The kids were great and asked every question the pros asked and then a few. The most “Silicon Valley” type question went as follows. “What company or industry is responsible for the success of your surgery? I assume this kid got Cisco or HP stock for his weekly allowance and was just doing a little due diligence. I explained, with a smile on my face, that it was the Medical industry and the advancements in stem cell transplants and anti rejection drugs, which made this success possible. I couldn’t name the biotech company responsible for the drug.

A smile was on my face too the whole time I walked up and down the beach on a beautiful day just following a rainstorm. The Golden Gate Bridge was quite clear off to my right although I couldn’t distinguish some scattered clouds from its structure. The Marin Headlands were straight in front of me and a point of land was off to the left where the sun was headed. I was mesmerized by the glint of the sunlight on the crest of the waves just before they broke. Then everything would crash into white bubbles and come rushing toward my bare feet. I wanted to run into those waves, clothes and all. The smells and sounds of the ocean have always drawn me. Couple them with the visual beauty and I was bound to get wet.

The waves rolled toward each other from either side, like stereo merging into monaural. Just as the sunshine glinted on the wave crest, the wind made a quick whipping sound that was followed by the crash. It was so amazing to piece the visual images together with the audible images, which I know, and love so well. The connection was surreal like the first time skiing, everything so familiar and so much more unfamiliar at the same time.

When I would take a break and tare my eyes from the ocean, I enjoyed looking at the colors of the sand, very wet, wet and dry. When I noticed dark patches behind me, it didn’t register right away that these were my footprints. I never thought of footprints as images other than when reading about them in an old west novel. To me, they were the thump; pivot push and the texture of the sand on my foot not dark splotches following me around like a shadow. It was intriguing to watch the waves slowly wash those prints away. Still these impressions remain indelibly in my memory. There will be lots to learn from the ocean especially up on the rugged cliffs of northern California or on the islands of the Galapagos. This virgin look at the beach and ocean for the first time in San Francisco was nothing short of incredible and I managed to only get wet up to my knees.

May 17, 2000

This week was spent in our Nation's capitol. Seeing the Washington Monument and the Smithsonian castles were exciting but somewhat overshadowed by my first major scare with my newly acquired eyesight. This was a wake up call that this first year has a 50% risk of tissue rejection.

When my eye first started bothering me on Saturday, I chalked it up to my first cold in over a year. By Tuesday when the wearable computer conference started, I was in lots of pain and could hardly open my eye. I found an eye doctor close to the conference hotel in McLean, VA. He and his assistant reported that nothing looked wrong. I suggested that the problem might be a stray eyelash or two but he said they could not see any lashes.

When I called this same doc the next morning to say things had gotten worse, he said, “these are signs of early rejection but I don’t see anything wrong.” My San Francisco doctors said not to bother with him any more and to come see them right away.

I arrived back in California that evening and saw Doctors Carson and Goodman today. We were all trying not to be alarmist. In fact, we had all lost a bit of sleep, me mostly because of the discomfort.

After looking in my eye with those blasted bright lights, Dr. Carson stepped back, squeezed my shoulder, breathed a sigh of relief, and said, “the cornea still looks clear. There is a little inflammation on the stem cells, and, there are two lashes to be pulled.” He pulled the lashes, Dr. Goodman confirmed that things looked pretty good and I went on my way.

By this evening, my eye feels normal again. I am so relieved to look forward to a good night’s sleep. I really should take a 2-month vacation and see the world. One just doesn’t know what tomorrow will bring other than a new sunrise.

May 20, 2000

I performed my first graduation commencement speech today at Las Positas College In Pleasanton, California, 1500 people attending. I, along with the college officers and Chancellor were garbed in the robes representing our respective universities and degree colors. There was quite the pomp and circumstance. It has been 20 years since I last went through a graduation and this was the first time I was on the stage for more than picking up my diploma.

The entire experience, plus the visuals, made this yet another "goose bump" moment in time. As we filed through those 1500 people lined up on the soccer field, I had a huge smile as I took in the myriad of people I passed by. From our position under a large awning on the stage, I could see quite well. As I stood at the podium, the crowd was nicely contrasted in the bright sunshine against the green grass. There was a sea of colors punctuated by the movement of people fanning themselves. I could see the cameraman crouch before me and a child darting up to the stage with a parent in hot pursuit.

Still not being very good at looking, thinking and talking simultaneously, my speech wandered a bit from my original outline. What I lacked in continuity, I think I made up for in humor and spontaneity. I was truly blown away by what I was seeing and by the excitement in sharing this graduation milestone with so many hard working people of all ages and cultures.

One of the spontaneous stories went like this. "Last night, my wife and I had the pleasure of staying with your Vice President Karen Halliday and her husband Jim. As my wife Jennifer and I were preparing for bed, I was talking about what I could do differently in my speech today. I mentioned that I liked the goofy intermission routine the MC did at Warren Miller ski movies. The MC would hold up a hand and say OOO and then Ah when he dropped his hand. He could then add a little sardonic comedy with audience participation.

The tough part for me was learning the proper Ooo Ah jesters. We started giggling as we stood there in the guest bedroom, Jennifer coaching me by demonstrating the Ooo Ah and the gestures. It suddenly occurred to me how this must sound to our hosts in the next room, Jennifer and I taking turns saying Ooo Ah, Ooo Ah.

I would like you to humor me today by an occasional Ooo Ah upon my cues." There was a great deal of laughter as the audience realized how we must have sounded to our hosts.

I ended my talk with one grand Oooo Aaah. Later in the ceremonies, the microphone stopped working and the College President was momentarily unable to continue. As I reached up to fix my hat, which was falling off, a swell of Ooo Ah came from the crowd. They thought that was their cue. Even though I didn't do it on purpose, the comic relief was perfectly timed as the microphone came back on and the President continued.

There really was a lot to ooh and ah about on this beautiful day especially when two days previously, there was some serious concern that tissue rejection might be setting in. Sure are lots of reasons to appreciate each and every sunrise.

May 29, 2000

It has happened many times over the past 13 years. Friends join us at a beautiful cabin (Tallac House) on the East shore of Fallen Leaf Lake near South Lake Tahoe. We arrive late Friday night for a weekend mountain get-away after an all-to-familiar frustrating drive from the Bay Area. The friends have a hard time finding the cabin, in the dark, a quarter mile off the meandering Fallen Leaf Road. They stumble into bed without seeing much of the surroundings. Sight seeing will wait for the morning when the get-away and weekend really starts.

I knew when the sun would rise because it was always punctuated by a hushed shout from the next room, "holy shit!" This would be the friend's reaction as they opened their eyes to the West facing view of Mount Tallac jutting above the far side of the lake, the rising sun framing it in a wash of morning light, the lake in the foreground, smooth as glass with wisps of steam rising off it. Those two words from the adjacent room painted this picture for me since I first went to Jennifer's family retreat in 1987. In my mind's eye, I could hear, feel, smell and taste this magnificent panorama.

This Memorial weekend was the second time I have been to the cabin since I regained some sight in March. I took time this trip to absorb the visual sense of this beautiful mountain setting. Even on this 80 degree, almost summer day, the snow clearly outlined the top of Tallac. There weren't any clouds so I couldn't confuse the two.

The trees particularly captured my attention. They are so tall, so very, very tall and each one so individual. I tried to find two, which looked the same. If there were a matching set, I couldn't see them. How can they possibly stay rooted in the ground? Just an endless trunk reaching toward the sky, no guy wires, nothing, just the trunk and heavy branches waving in the wind and the invisible routes below. It is a mystery, like flying, something I do all the time but can't really believe is possible.

I perched on the balcony railing, looking over the lake. I had an irresistible urge to crawl out on to the roof to confirm that the brown things I saw there were indeed pine cones. I knew logically what they were but I wanted to touch them like pinching myself to make sure this wasn't a dream. I really was seeing them. I would like to touch the tops of those trees and the top of Mount Tallac as well. Trusting this new visual information gives a whole new meaning to the term, "hand-eye coordination."

Quite the memorable Memorial weekend, May 2000, surrounded by life, the trees, my family and a new way to appreciate them all; pretty hard to sum it all up in two words.

June 15, 2000

The Status Quo is pretty good.

I spoke last night in El Paso at the Texas Focus conference to 300 parents and teachers of the blind. I presented for 70 minutes and covered many of my adventures. I spent the least amount of time on my new sight and suggested that they watch Dateline for the complete story. When I described taking the bandages off and seeing Jennifer's smile for the first time, the spontaneous oooh from the audience gave me chills, recapturing the moment myself.

I haven't had any scares with the eye since the DC episode thank goodness. I don't know if I mentioned the excruciating process of having them singe those eyelashes so they don't grow back. Major ouch!

I think my acuity has improved somewhat since March 7. My ability to figure out what visual things are has definitely improved. Detailed items and pictures are still the most difficult. Colors, shapes and movement are the best indicators for me of what is what.

I am gaining a better ability to integrate the vision into my other sensory perceptions so it doesn't dominate so much. Still, I tune out the visual input when it is too distracting, mainly in conversations. Think of how distracting it is when you are speaking and hear an echo of your own voice. It is difficult to ignore that echo. Listening to someone speak and watching him or her at the same time is like that for me. It is hard to do both, look and listen.

Although my stories of “first experiences” diminish with time, my awe for the mundane visual aspects of life does not. Just looking out my hotel window right now and seeing the roof of the adjacent building and the cars going by, especially since I can't hear them, is exciting. It is a definite treat to be able to find enjoyment in the mundane aspects of day-to-day life not to mention the really special moments and events, which have taken, place over the past three months.

June 19, 2000

Riding the Limo, a sleek black tandem, with my brother Patrick.

Hi Mike:

I want to share with your readers the exuberance, fear and excitement I had yesterday when you piloted the tandem for the first time. I am probably the only fool who would get on the back of the tandem (stoker) and let you captain. All I could think about is let’s do it, but there was fear! The fear came from; no control, no brakes, can’t steer, your lack of experience, cars, speeding downhill, road rash, damaging our beautiful tandem (The Limo). For those of you not closely familiar with bike racing, road rash is the term, which describes the great joy of picking gravel out of one’s body.

The exuberance and excitement far out-weighed the fear! I am not certain why everything fell into place the way it did. Looking at the back of your head I could see you smiling bigger than life, it reminded me of the first time I guided you on the ski slope. It also reminded me of the trust you have to put in my hands when I captain the tandem or when a guide leads you down the ski slope.

My feeling of pride and of mutual accomplishment hit the stratosphere when you did a U-turn on the open road. Not an easy task for even an experienced tandem captain and not moments before I told the ABC Camera crew, no way can he do a U-turn; we'll have to stop before crossing.

I checked the bike computer and we rode about 3 miles with you as the captain for the first time; top speed, 21 mph, an adrenaline rush. Next round, 30 mph, then 40, but first a lobotomy for me. Great fun! Fantastic thrills.

Thanks for including me, thanks to your partners in crime at ABC World News Tonight, Jack Smith and Richard Sergay.

June 21, 2000

Looking through the eyes of the Summer Solstice

On March 7, my vision went from light perception to 20/1000 in one eye. Nothing will ever match that incremental increase. Nonetheless, a set of binoculars sure gave me a whole new perspective, on things near and far, when I tried them for the first time, over 3 months later, on the Summer Solstice. I had a low vision evaluation and may eventually get a collection of magnifiers for reading close up and far away. No telling how long that might be. There happen to be a pair of binoculars at the checkout counter and so I grabbed a pair, had a quick look at the checker and decided to buy them.

The first time I had a chance to experiment was at the falls above Fallen Leaf Lake near Tahoe. I love the sounds and the power of pounding water, whether it is the waves or a waterfall. There are so many audio nuances. They are intricate and seductive and frightening. Up close to these particular falls, I could not understand what someone was saying more than 2 feet away. Over 30 feet away, it is not likely that I would hear a person yelling. This is what frightened me that my kids could get in trouble and I wouldn't even know.

This time was different. I put the binoculars to my face and all sorts of things I could barely see came leaping into view. The intimidating roar of the water looked so soft and bubbly intermixed with darker ripples of calm. The frothy white line wound its way through the cliff of brown and various shades of green. A jagged line of treetops greeted the blue sky at the absolute top of my visual arc just prior to toppling over backwards. Best of all, back close to the terra firma, was the sight of Carson and Wyndham happily climbing on the rocks. Even though Jennifer was nearby to watch them, I felt safe being able to know where they were myself and it was fun to see them exploring. It was a game for me to keep them in my binocular sights. It was very weird to see so much movement and yet not be able to hear even the slightest sound from them because of the endless snowmelt cascading off Mount Tallac on its final plunge into the lake.

It was fun as well to see Jennifer when I wouldn't otherwise known where she was let alone being able to enjoy her beautiful trim physique. She wasn't the only pleasant female component of the scenery. A friend was nice enough to mention that I should turn my glasses toward the lake and look for a raft. It took a while but it was worth the effort to see a lithe young lady in a blue bikini. Actually, I couldn't tell her age but it is the idea that counts and my imagination was running rampant.

My arms were getting pretty tired from holding up the binoculars but I kept on gazing. It was a tough choice, the woman or Mother Nature. The complexity and detail of the falls and surrounding terrain regained my attention. After methodically scanning the cliff, I began to recognize patterns. One starkly white tree delineated the midpoint of the cliff. I could never figure out just how those trees were rooted in what looked like a vertical slope. It was simply "arm-aching" fascinating.

I would look at something and then take the binoculars away to see what I could see with the naked eye. I could see the white of the falls but not the fluffy detail. I could see the green shapes of the trees but not their individual branches. I could see a dark line, defining the opposite end of the lake, 3 miles away but with binoculars I could see that the line was a tree and the gray line beyond I was told were mountains. I couldn't even find the raft with the naked eye, let alone the half-naked woman upon it.

To quantify these differences, my audio-only threshold among these roaring falls is about 10 feet, with my 20/1000 vision about 50 feet and with the binoculars about 300 feet. Being so reliant on audio for so many years, I just can't get over a situation like this where the visual channel is so powerful. Even with the binoculars, I cannot see as much as a sighted person with 20/20 vision. However, what I can see with my new low vision is interesting and the binoculars sure bring that sight even more to life.

It is these "visually virgin" experiences, which are so notable. It is difficult in any event not to be overwhelmed by this incredible natural beauty as perceived by all the senses. On a bright sunny June 21st at 6,400 feet, perched on a rock below the falls with the boys playing happily and safely nearby, my wife and good friends chatting on the terrace above me, it just doesn't get any better. Appreciating friends, family and nature was a fitting way to spend the Summer Solstice of 2000, another first and certainly not the last.

June 25, 2000

Discovering the Stars

After another visual revelation this weekend, I wondered out loud if I should make a list of things at which I should take a look. A friend said, "no, Mike it's the fact that you are going ahead with life as usual which makes your learning experience so interesting for you and for your friends."

This weekend was the 50th anniversary celebration at Enchanted Hills Camp for the Blind. I attended this heaven-on-earth place in the Napa foothills starting in 1962 as a camper. I worked there as a counselor and most other positions through the mid '80s. My mother was the Camp Director for 11 years. It really is a gorgeous place, and for me, it was a second home if not a first.

Saturday night, I was walking from the upper camp to the lower camp with my boys. It was very dark and they were scared. I was looking for anything to distract them from thinking about the dense dark woods around us. When one of them mentioned the stars, I cultivated the conversation. They told me how many stars they could see and in no time, we reached our cabin.

After the boys and Jennifer were asleep, I walked back up the hill, got my binoculars out of the car and headed for the Recreation Field, the most open place in camp, and, a place I had slept many times with fellow counselors telling me about the stars. I laid down smack in the middle of the field, wrapped Josh's leash around my leg and closed my eyes to reflect on being in this place in years past.

When I was ready, I opened my eyes and thought at first I was seeing stars, I mean seeing stars as in the expression. There were all these white dots, so very many white dots. When I looked through the binoculars, there were so many white dots I couldn't possibly count them. Back and forth, I went, glasses on, glasses off and they were the real thing, not an expression of my imagination, not a vision from a good author who made me think I was seeing them, this was the Real McCoy, seemingly near enough to touch.

What made it real was the feel of the grass I was laying upon, the dense black of the woods surrounding me, the small sounds of critters in those woods, the slightest of breezes and the musky smell of the earth and plant life near my face and carried by that breeze. I didn't have to pinch myself to know it was real; nature was doing that for me.

With the naked eye, I could count somewhere in the range of 25 to 35 stars. With the binoculars, I couldn't keep count. The stars were too dense and the limited field of vision made it hard to keep track of which ones I had already counted. It was just fun trying and looking for patterns, scanning for a shooting star. Maybe if I had focused in one place for a while, I might have seen one although I am assuming it would be obvious. Maybe it would move too quickly for me to notice.

I laid there for an hour or so, not really aware of time but finally noticing around Midnight it was getting chilly. Some female counselors walking by on the road caught Josh and me in their flashlights and could not figure out what we were. They stopped and were talking about wild dogs or a bobcat. I finally stuck my arm up and waved and they laughed with nervous relief. With that, and the thought of my boys being very refreshed in 6 hours, I climbed to my feet, shook off my damp clothes and headed for the cabin too.

Every so often I could catch a pinpoint of light through the canapé of trees as Josh guided me down the familiar road. Strange to be seeing stars and yet needing a dog guide at the same time but that is typical of how this is working for me. It does surprise me that I have not thought to look at the stars in 3 months of having vision and no one has asked me either. To think, it was my 6 and 8 year-old boys who opened my eyes to the stars. How sentimental to experience it in one of the best nature spots in the world. "How sweet it is."

(My friend Bryan's comments when I told him of this experience)

"Outstanding! I carry in my head all of the usual inspirational things about the stars, and their evocation of the deeper meaning of things. There is that wonderful science fiction story which said if the earth's conditions were just a little different, as the case with Venus, then the skies might only part once in a thousand years to reveal the stars. Then, the story goes, the most profound social and emotional change would take place, as the supposed limits of being and imagination was expanded.

To be sure, I never have found your imagination to be circumscribed, but I wonder if the sight of the stars carried anything with it beyond their optical appearance. A good point for a glass of beer."

July 4, 2000

My first fireworks

I was in Louisville, KY and went with some friends from the Seeing Eye to the Buckhead Grill on the North bank of the Ohio River just over the border from KY in Jeffersonville Indiana. My Seeing Eye dog Josh was with me at first along with my colleagues Kim and Roland.

It was a beautiful evening, not too humid, a breeze blowing and a pretty clear sky. The Buckhead was a lively place especially with the prospect of fireworks. Every table was taken and there was a 90-minute wait, not so bad in a lazy setting like this.

When a few preliminary amateur fireworks went off, Josh started shaking. He doesn't like thunder and certainly not fireworks. Drew, one of the Seeing Eye instructors drove me back to the hotel so I could put Josh inside where he wouldn't hear the fireworks and then we returned to the restaurant.

We had a fun dinner inside the restaurant and just after we finished, the crowd began forming on the deck. We made a beeline for the deck as soon as the first explosions lit the sky. Lukas Franck and Kim Burgess were my narrators as our whole group gathered to enjoy the celebration and to share in my first look at the fireworks.

I have never been a great fan of loud explosions. They remind me of the explosion, which blinded me at age 3, and they are a bit frightening from a percussive audio standpoint.

This old feeling about fireworks flew directly in the face of the visual experience. There can't be any better contrast than flashing lights against a black sky. The bursting patterns were challenging at first to understand but with some explanation from my friends, I began to see the star patterns, the changing colors, the raining lights, the columns and the bursts overlaying each other. It looked like the circles of color were coming to embrace us.

I couldn't tear my eyes away from this visual show and at the same time, my old reaction to the audio gave me an unsettled feeling. My eyes began to fatigue and still I kept staring. It didn't work to wait for a boom and then watch because the boom came after the visuals because of slower speed of sound versus light.

When the fireworks were over, I felt a little gitty and glad to close my eyes. I put some drops in and then some of us walked back to the hotel, crossing the Second Street Bridge back over the Ohio. We talked about the experience like we had just seen a play or the opera. I was glad to be talking and thinking and not looking. We had the calm river and breeze on one side of us and the cars whizzing by just a few feet away on the other. It was just like the audio and visual components of the fireworks, intimidating and alluring at the same time.

July 18, 2000

Tarika from Madagascar

The Palms Playhouse is an old tin barn in a field on the outskirts of Davis, which has become, over the years, an intimate stopping point for excellent bands in transit to San Francisco and Berkeley. The back row, where I used to sit so as not to be blasted by the band, can't be more than 30 feet from the stage. Capacity including staff and the band is 125.

Last night, I opted for a row closer to the stage so I could see the musicians. We had no idea what Tarika would be like; they were described as "a trippy band from Madagascar." And indeed they were, both in terms of what I could see and what I heard, plenty loud, 15 feet away from the band and in clear view, at least from my relatively new perspective.

The music and movement captivated me right away. Five voices, 3 men and 2 women, harmonized perfectly and yet the notes were a bit foreign to my Western ear as you might expect from an island band from half way around the world. The red guy on the left, who Jennifer described as "more gorgeous than a movie star" played no less than 6 instruments. My favorite was a "Vali" which sounded like a hammer dulcimer but looked nothing like one. The Vali was a 2-inch bamboo tube, about 3 feet long with strings mounted lengthwise along the middle two thirds of the bamboo. He also played drums, the accordion and a 4-foot rectangle, which I did not get to check out closely.

I unfortunately did not get to check out closely either the band leader who Jennifer described as "an Amazon woman, beautiful, lean and very animated." I could see the animated part and colorful clothing including the gold shoes. She wrote all the songs and introduced each with an articulate explanation of the politics, history and relationships the music was about. This was important since the words were not in English. Some were frenetic, some were lilting and all had tight rhythm even when the red guy was not playing a drum.

To the right of the red guy was the purple guy who played a variety of stringed instruments closely related to the guitar. The beautiful female leader was center-stage, then a yellow/purple female vocalist/percussionist to the right and finally the blue bass guy on the far right. They all moved, some more than others but this visual aspect of their performance entranced me. The leader explained, "We believe that bad spirits of political corruption and sickness settle inside of those who stand still, literally and figuratively. To have integrity and be healthy, you must move, you must shake the bad spirits out. That is why we dance this way and this is why I haven't been sick in over 10 years." A thought flashed through my head as I watched them moving in unison and then individually that this is what a color organ looks like. They appeared to move as visual reflections of the music and instruments they played.

There were times I was caught up in the music and couldn't say if I was looking or listening, just feeling. Other moments, I focused on one sense or the other. A guy with a big head interrupted my view so I had to keep leaning to the side to see around him. His girlfriend was dancing most of the time. She looked pretty good too. I almost drove him away when I began clacking my folded cane to the rapid beats. I found a very cool way of interlacing the sections so I could keep up with the rapid fire of their fast songs. I don't know if he could hear me clacking or if the elastic cane handle was whipping him in the back.

I resisted the leader's plea for us to get up and dance. I was enjoying listening and looking, especially at her dancing. Trying to dance myself would have made me concentrate on my own movement and not that of the band who managed to do so as one. I was lost too in thoughts of a time I spent in Ghana, 24 years ago, one of the most profound experiences in my life. Music can carry one away like no other medium, and it did, to that jungle of coconut palms on the coast of West Africa also half way around the world to a place full too of political corruption, subsistence living and beautiful people. I'll add Ghana to my list of places to put on my visual tour of the world along with Madagascar. Maybe I'll get lucky and see a lemur or even better an aye-aye.

July 25, 2000

“Mike, are you tired of all the questions?”

The answer is, mostly no. I do struggle with the fact that I don't have all the answers. I am still very much a rookie with this visual stuff. I am constantly trying to figure things out, and I will give you some answers, just don’t expect those answers to be definitive. The answers are my best guess based on limited experience.

I get a little self-conscious when I am around friends or colleagues who have heard my spiel dozens of times and then I am asked by someone new to address the typical questions. I don't want to bore my friends or sound like a broken record.

My sister Ann was fun to “see” for the first time while I was attending the AER conference in Denver last week. While walking down a “happening” street in down town Denver, Ann suddenly dragged me across the sidewalk to the street and stopped a horse drawn cart so I could check it out. Only Ann would have the zubes to do that so I went along.

A while later, we were sitting in a cafe and Ann exclaimed that a well-endowed woman had just come in wearing sequins and had bright pink hair. When Ann began to stand up I quickly informed her that there was no need to bring the woman over to me, I would subtly check her out when we left the café. I didn't mind Ann’s enthusiasm or her questions. The pink hair was really pink. I might have thought it was a light bulb if she hadn't told me ahead of time that it was hair.

I enjoyed the people watching, couples arm-in-arm, a wide variety of colors and clothes, lots of great smells and sounds emanating from the plethora of restaurants and clubs in that part of Denver. It felt like the American version of the Ramblas in Barcelona where the evening stroll is the main event and the other stuff is just there as a setting. It surprised me how many people stopped me and asked if I had been on television. They were courteous and congratulatory. It gave me a real sense of what national TV means when people from farm towns to big cities had seen the Dateline piece and recognized me on the street. Many said that they were glad to see Josh still had a job.

July 30, 2000

"If it weren't real - I'd invent it"

I will diverge from previous stories where I share details about the place I am visiting. I will describe the experience of what I am seeing while keeping the place a secret.

High in the Jura mountains of Switzerland is a special place, which is one of the most stunning and undiscovered views in the world. Long-time friends, Cass and Fiona, invited me to their chalet in this mountain hide-away to see visually what I have experienced before with my other senses. In November 1999, before my operations, I spent a weekend with them getting a play-by-play of mountain nature and vistas from Fiona who paints the most articulate and passionate word pictures imaginable. Only my boys can match her enthusiasm about discovering the wonderments of nature and she can explain it far better. Not only do you get a mental image of what she is describing; you cannot help but be convinced that mother earth is the true essence of what is important.

Fiona was disappointed because it was raining when we got to the chalet. Still, the countryside was fascinating to me as seen with my new vision and with her assistance. Rain or shine, the Swiss mountains are pretty incredible, lush foliage, open spaces, jutting peaks, bright flowers, cows, quaint villages, ancient buildings and city lights. We pulled off one single-track road so I could feel the stone barriers, which were erected to stop the movement of tanks across Switzerland. All the times I have been to Switzerland and I don't recall hearing about these barriers. This time, I could see them and they were even more impressive when I felt the massiveness of their construction. And, to think these stretched across much of the country.

Fiona tried ever so hard to point out Mont Blanc but amongst the clouds, I just couldn't see it 100 miles away. I could see Lake Geneva, the local peaks and even a house perched on a hillside across the valley. I was quite happy to learn the color and shape of geraniums and to look at the varying colors of the fields and trees. It just kept dumping rain so we had to be content with our cozy nest and closer up views. I wouldn't have minded seeing some of the animals I have only read about in the Red Wall book series, Stoats, Voles and the like. Some of these animals did appear as well as a deer and chamois but I couldn't pick them out even with binoculars. After all, the wildlife is designed to blend into its environment and I do best with good contrasts.

A good contrast would be for example; the Golden Eagle and Red Tail Hawk we saw up close in a demonstration of birds of prey. Taiga was a young female eagle that flew from her handler's hand to the cliff above us. We were nestled in a ravine at the bottom of what was until recently a ski jump. Taiga flew back and forth, literally inches from our heads in proud avian glory. I couldn't believe how broad her wings were besides being 5 feet long. The sound was sometimes powerful but fluttery and other times creaky and labored.

The sound of the Red Tail was familiar to me as it is native to the Western United States and reminds me of our former home in the foothills of Southern Oregon. I could see his outline and colors quite well 10 feet away from the log where we were watching and in detail through the binoculars. The handler spoke confidently in French about the habits and life style of these birds. The sound of his voice echoing in the ravine, the cowbells jangling in the distance, Taiga screeching with nervous energy and this close-up view all made for a most dramatic and unique sensory and learning experience.

Early Sunday morning, I awoke to Fiona knocking on the door to inform me that it was a beautiful day and I should look out the window. She was worried that the clouds would cover the clear sky and I would miss seeing Mont Blanc. I knelt there at the window, in my underwear, rubbing the sleep out of my eyes and trying to hold the binoculars steady. It is tricky to zero in on one mountain peak when they surround you and because they reach in layers into the distance. Fiona says on a really clear day, you can see the Matterhorn. We tried using trees and telephone poles as reference points so I could look just in the right spot. The morning sky was a bit muddled so I was trying to sort out the clouds from the snow, from the mountains, from the sky. Her desire to have me recognize Mont Blanc kept me going but my eyes and brain were getting tired. I thought I discerned the triangle she was describing and so we left it for the time being.

We had quite a field day at the farmer's market in the local village of Yverdon. There were vegetables and fruits lined up in either direction as far as I could see in a multitude of colors. It was a true visual orgy. She couldn't think of the English word for some of the items; I couldn't tell from touch or smell what they were either, probably something not common in our farmer's market at home. I love all the separate shops, one for cheese, another for bread; some stands no more than 3 feet wide just selling homemade jam or olives. I particularly like the jams, which give the date, and weather of the day they were prepared.

A weekend in the chalet would have not been complete without Cass's home made dinner of cheese fondue and an exquisite bottle of 1983 champagne, pressed nearly as long ago as I met Fiona. The latter was courtesy of Sir James who I had met on my previous visit. We also had the pleasure of being invited to his chalet where I saw a different vista, a handcrafted lawn and his ceremonial swords from his military service. I won't try to tell the story of those swords; suffice it to say; to get the true flavor, you must hear the stories told by Sir James himself.

I was a bit reticent when Fiona suggested walking to another vantage point to get a different angle on the Mont Blanc. At the same time, I felt like I was learning more on each occasion I looked at the vistas through the binoculars. She too was learning better how to assist me and, sure enough, I picked out Mont Blanc. It looked so close. I could now understand how the snow covered peaks differed from the clouds. The peaks had a more constant jaggedness while the clouds were billowier. Most important, there it was, clear as day, the triangle of Mont Blanc. Part of why I could see it was because of the clearer sky but a lot had to do with practice over the past 2 days in viewing far away vistas. The warming sun and the power of the mountain gave me goose bumps. Seeing the mountain made me vividly picture those who have successfully climbed to the peak and the dozens each year who have been killed trying.

How fortunate that Mother Nature and one of her best friends, and mine, have shared with me another day and one of the most incredible natural experiences in the world. It seems to be my formula, good friends or family, some earth and a challenge equals happiness.

August 6, 2000

Switzerland, Germany and England in one week

Switzerland was noteworthy because of visiting friends who I was seeing for the first time visually and because of the weekend in the mountains. My friend Fiona was every bit as beautiful as I had pictured over the past 18 years and I dare say she was a little teary at our reunion. I was quite happy to look at Fiona but an iridescent green shirt caught my eye as we were walking through the airport. I was gently admonished for rubbernecking, as the woman wearing the shirt and shorts was also very attractive. I need to speed up my analysis of these sites so I am not so easily busted.

I enjoyed taking the train from Yverdon Switzerland to Karlsruhe Germany. On the first stretch, we followed Lake Geneva, which I had viewed the previous day from high among the mountains. I didn't have anyone to coach me on what I was seeing but I enjoyed looking nonetheless and guessing.

The antiquity of Europe always strikes me in its contrast with the relative newness of the U.S. A marvelous example of this was in the village of Horb in the Black Forest of Germany. My friend Sigi and I went into a pub of sorts called Shiff, German for ship. The wall, just outside the entrance, was painted with the tree of the family who had owned it since 1545. Not only was the building still standing and being operated as a pub, the original family still owned and ran it.

The church towers look pretty neat against the sky too. There was a church next to the pub in Horb. At my next city, I saw the Cathedral of Coventry England. The shell of the old church was next to the grand new cathedral. A Polish gypsy group was performing within this old shell. There is quite a story about how Churchill knew Coventry would be bombed but he couldn't warn the people or it would be known to the Germans that the British had their secret codes. Over 1000 people died in the bombing.

I spent my last night before returning to the states on an adventure into London. I dropped off my cases at a hotel at Heath Row airport and took the underground into the city and back. There are 21 stops from Heath Row Terminal 4 to the Covent Garden underground stop. They don't, much to my dismay, announce the stops. I got quite annoyed about this and tried to walk from my train car into the next so I could speak to the conductor or engineer. This wasn't possible. I did find an emergency box with a glass tube but I wasn't quite annoyed enough to see what would happen if I broke it. I can't believe the blind people of the UK haven't screamed bloody murder about this most rudimentary access issue.

I was headed into the city to see the play, Buddy, which it turns out, was 6 left/rights away from the stop. I didn't of course figure this out until I finally got to the theater. When I asked an Indian restaurant waiter for directions, he asked, "Who is going to take you there?" I explained that I had made it this far from California and I reckoned I could make it the last few blocks to the theater on my own.

The play was okay but the theater was too hot so I adjourned to an Italian sidewalk cafe for a late night dinner. It was a fabulous people-watching spot, a streetlight was overhead and the sidewalk was on my good side, my right side. Remember, I can see colors, shapes a movement pretty well but not details. People come in so many shapes and sizes and I think I saw one of each on that bustling London street corner. High heels have a distinct sound and now I see they also cause women to walk differently; it looks painful or maybe that is just my mind's eye speaking. I never tired of the variety of people and situations milling around me as I savored my pasta, vino, salad and chocolate moose.

I reluctantly gave up my people watching to head back to the hotel and an early-morning flight. I almost missed my stop on the return trip as its easy to lose track after midnight when counting to 21. I can't believe they don't call out the stops especially when they occasionally come on the loud speaker to tell people, "mind the doors, mind the doors." I wouldn't mind a few station announcements. RRRRR!

August 10, 2000

Totally blind again for a day

On a routine follow-up eye exam, Dr. Goodman informed me that the stitches were ready to come out. He first suggested taking them out right there in the office but then on further reflection, he said, "We should really do this in the operating room just in the rare case that something goes wrong." So, we scheduled 2 more visits to San Francisco this week to perform this hospital procedure, which, relative to my two major eye surgeries, was pretty minor.

My apprehension level was high however when they rolled me into the operating room for the third time in 9 months. Even though the procedure was relatively minor, there was still the anesthetic to deal with, which I hate, and the whole formal hospital routine had to be played out. I didn't like the idea either of them messing with my newly acquired vision.

As expected, there were no problems. I was awake enough during surgery to feel Dr. Goodman poking around in my eye but not enough to do anything about it. It was like a bad dream, which you can't quite wake up from.

I have to admit that my apprehension continued after the surgery. I lay there in the recovery room with my eye patched, not knowing for sure that everything was still intact. Once I could walk safely, we left the hospital and went to have lunch with a friend in the area. It was very weird with the eye patch on and being a total again. Being woozy from the drugs increased my feeling of ineptness. Still, I went to lunch, it was a beautiful day and the warmth of the sun and my friends eventually got me grounded again.

Over the course of the next day wearing the patch, I thought about how it felt to be a total in terms of whether or not my skills had changed in 5 months. I had in fact gotten a little rusty; nothing I couldn't get back in a day or two but it was interesting that the edge had worn off my sense of the space around me. It reminded me how subtle the bits of information are that make the difference between average and good mobility. These bits are so subtle that if you think about them, you lose them. I thought of the times people would ask me, "how did you know that person was there or that doorway was there?" When you want to be mobile and you have no visual information to distract you, these subtle bits of information begin to trigger a response to one's environment. I had a better sense of these subtleties having been a total, gotten some sight, which interfered with the subtle information, and then been put in this position of having no vision for a day.

I returned to San Francisco for the third time this week. Even the patches coming off again gave me a funny feeling. Sure enough, the eye looked fine and I could see the same as two days previously. This was a wake up call reminding me that I am still in that 50-50-percentage zone where the transplant could reject. I don't want to get too cocky about this new low vision. I don't want to let those subtle mobility skills get rusty. I want to continue enjoying the strong skills of a blind person and the emerging skills of a low vision person.

August 29, 2000

Mostly good but different

At nearly six months of vision, it seems that the more time I spend looking at things and figuring things out, the better I get at seeing. In 9 days at Fallen Leaf Lake, I got lots of hours gazing about, sometimes with binoculars in hand, other times just seeing what I could figure out with the naked eye. It is easy to start imagining things when looking at a forest or the many shades and contours of a mountainside.

When it was pretty smooth, I could gaze around and let my mind wander as I wind surfed one and half miles across the width of Fallen Leaf. When the going got rough wind surfing, and I really had to struggle to balance, I screwed my eyes shut. The slightest visual influence was distracting to my concentration. I have wind surfed for years on this lake and usually found my way back to our dock with little or no assistance. I usually carry a waterproof radio in case I really get off course.

On this trip, I forgot the charger so I had no radios. I had to rely strictly on my vision and feeling of the wind to help me find my way back. I can see the docks from as much as a half mile away but I can't tell which dock is ours until I am 100 yards away. By the time I am within 100 yards, I can usually hear my kids so the vision probably got me into more trouble than it got me out of.

It's not so bad because the worst that can happen is that I end up at a neighbor's house and maybe miss dinner or maybe I find a better dinner up wind. I did manage to get lost once but I made it back in time for dinner. It was interesting to be able to see other boats in my vicinity. I could see in which direction they were but I could better judge their distance by sound. Visually, distances are hard for me to judge over water.

I liked trying to make sense of the ripples and waves. Were they the leading edge of a strong wind or was it simply the wake from a boat? Again, my sense of the wind by feel was more accurate than what I could figure out from seeing the ripples. In fact, looking at the water distracted me from the subtleties of feeling the wind, which is a big part of wind surfing.

I enjoyed using the binoculars to watch Wyndham jump off a rock at Angora lake. In this way, I could sit at the picnic table on my lazy behind to observe him rather than swimming out in the cold water to check him out up close. Life is full of trade offs and this certainly goes for the use of vision.

September 27, 2000

Watching the Olympics

Until the Olympics came on television this past week, I have found little motivation to look at a television screen. I loved seeing video of my boys when they were babies and I have tried occasionally to see parts of various programs. The pictures usually move too fast for me to get a fix on them and make sense of what I am seeing. Movie screens are a little better but the subject must stay still for me to sort out what I am seeing.

What have I been able to see? The 10-meter platform women divers have been fun to watch. My brain struggles to fathom the twists and turns the divers make. They are so talented and so athletic looking. The slow motion replays are perfect for me to confirm what I think I saw in the dive. The contrast against the blue pool is perfect for me.

I watched the cycling tonight and learned to know who some of the riders were by the colors of their uniforms. I could even discern the anguish on the faces of some of the competitors. I couldn't believe how packed together they were.

I have been on a horse going over a jump before but I have to say that my mental image of a horse jumping was different than what I saw for the first time on the screen. The way the horse stretched forward and bunched their back feet was interesting and different than I imagined. I have ridden a lot over the years and think of it in terms of smell, feel and emotion. I seldom have thought of it visually. It was beautiful to watch because the other senses aren't much good if you can't be on the horse yourself.

I don't get much sense of the running competitions. I need some perspective and some sounds to clue me in. The roar of the crowd is my favorite part of the running. It is interesting to see the different outfits the runners wear but I can't even tell who is in front because of the camera angle and the way they are staggered.

I have been at two Winter Olympics, Sarajevo and Calgary. I have been at several Paralympic competitions and ran a torch mile for the LA Olympics. I sure hanker to be in Sydney for the full Olympic spectator experience but short of that, watching it on television with the enthusiasm of my boys drowning out the announcer, is a fun runner up way to participate. It is ironic that the boys make it hard for me to hear and now my big head close to the screen makes it hard for them to see. Good thing the Olympics only last for another week or I might be tempted to get one of those obnoxious big-screen televisions. We are already talking of taking the family to Salt Lake City for the 2002 games.

October 3, 2000

A Mobility Wake Up Call

After being totally blind for 43 years and partially sighted for 7 months, I am still learning to use my vision but getting pretty good at using low vision in my mobility bag of tricks. I find that using my Seeing Eye dog or a cane works best for mobility hence freeing up my limited vision for looking around. If I use my vision for mobility, I can't do any sight seeing.

Today was a grooming day for me and for my dog. I used a cane for my walk to the groomers and hair-cutting salon. Instead of sweeping the cane as I did when I was a total, I now walk with the tip on the ground in a cross-body position. This seems to work most of the time.

As I neared the hair salon, I wove in and out of obstacles on the sidewalk using my vision. My cane picked up a hose across the sidewalk and I congratulated myself on my mobility skills.

Right in the middle of that thought, I found myself sprawled on the concrete. It happened so fast like the "mobility cockiness God" cut me off at the knees. In fact, there were gray concrete benches, which blended in beautifully with the sidewalk. While my cane picked up that hose, it missed the concrete bench and I didn't.

I hobbled into the hair salon to get my name on the waiting list and to get a Kleenex as I felt blood dripping down my leg. The receptionist got rather excited when she saw the blood pooling on the floor in front of all their customers. She ran to the bathroom to get a paper towel. Someone was in there so she beat on the door. Mean time, the pool was expanding. They got me to one of those hair sinks where I got washed up and eventually stopped bleeding. This was the first time I had seen blood. Wow, was it red swirling around in that sink!

It is ironic that I was in route to get my Seeing Eye dog when this injury happened. It definitely would not have happened if I had been using my Seeing Eye dog rather than my sloppy cane technique. All in all, I lost a little blood and pride but gained a mobility wake-up call. They say 4-wheel drive is actually worse than 2-wheel drive because you just get stuck further from home. There may be some similarity between a 4-wheel vehicle and this low vision stuff. Blind or sighted, cane or dog, it pays to watch where you are going and your body pays if you don't.

UC San Diego eyesight evaluation

October 3, 2000

Ione, Geoff and the Brian imaging team at Stanford (Brian Wandell, principally) are quite interested in doing some brain scans to assess how well your visual cortex responds to visual input. Part of the interest in that would relate to long-term plasticity, so it would be nice if you were available for long-term follow up (and the same applies to the tests we did here).

I attach Ione's summary of what we learned from the tests.

The preliminary results of the first vision evaluation of Mike May by Dr. Ione Fine:

The results of the Stanford FMRI evaluation of Mike May by Dr. Ione Fine:

Some key points:

(1) ACUITY.

Your acuity for grating patterns is about 20/450..not good of course, but better than your previously assessed letter acuity. Since the interference patterns were as difficult to see as external targets (or more so), this probably reflects neural rather than optical limitations (as suggested also by Dr. Goodman's reports of a clear fundus).

We don't know how much, if any, improvement you could expect over time with the use of your new vision. We do know that improvements can occur on a very slow time scale. We don't know much about the role of practice, concentration and determination in affecting such improvements. Before your age-3 accident, you would have had essentially normal adult-level vision. If the accident caused no major neural damage to the retina around the center of gaze, we would tentatively expect you to experience at least a bit of slow improvement. I compared the situation to second language learning, but that analogy may be misleading. Someone like you who is quite accustomed to doing six impossible things before breakfast could outperform the average guy on most learning tasks, but we don't know whether those personal qualities are helpful in this particular situation or not. My guess, based on accounts of previous cases of restored vision, is that they will help, assuming that you do choose to make considerable use of your limited vision and to try to refine it. We would be happy to confer with you about prospects for improvement. It's encouraging that your tracking and eye movement control are pretty good, and that you experience benefits in clarity when you look at something directly.

(2) DEPTH

You did surprisingly well on constructing 3D perceptual representations from the 2D retinal image using perspective-related cues like occlusion and motion parallax. These are cues that have analogs in the tactile world (and perhaps you have thought about them at an abstract level). Interestingly, however, you seemed to be starting absolutely from scratch in another aspect of depth perception--the use of shading to assess shape. Although this has no counterpart in the tactile world, it is crucial for 3D form perception in normally sighted adults, who use shading instantly and without conscious effort to infer 3D shape. You, on the other hand, had to start to figure out the connections between shading and shape as a mathematical exercise. Perhaps with practice, this will become more automatized, as it must have been automatic when you were three? We don't know for sure, but getting there is a major part of the job of learning to see that still lies ahead.

(3) ILLUSIONS

You are impressively free from some illusions that beset normal vision--illusions that reflect the constructive processes involved in the perception of 3D objects. For instance, when an image contour is seen as belonging to a receding surface, normally sighted subjects overestimate the height of that image region...it is as if they err in the direction of assigning it its 3D extent, which is greater for a receding surface than for a straight up surface of the same image height. You don't make this mistake. You also don't (at present) see "illusory contours" that normally sighted people generate across a physically uniform image region. These are interpolations of the contours of a "preconsciously inferred" object, that is visible only in bits.

Dr. Don McLeod, UC San Diego

Possible glitch with the transplant

October 7, 2000

When I was in for an eye check-up a month ago, I was hoping to hear that we could discontinue the anti rejection drugs as planned. Instead, I learned that I had to keep the drugs going because another surgery was possible.

Six months into my healing from surgery and regaining of sight, Dr. Goodman and Dr. Carson noted a segment of the stem cell tissue looked unhealthy. They had me putting artificial tears in my eye every waking hour to minimize dryness. In spite of this measure, they explained that a portion of the tissue was dry and might reject. The possible solution was to replace this unhealthy segment with new stem cell tissue.

Inserting a patch of new tissue involves risks. On the one hand, it is important to replace a bad segment before it gets worse and before we are further into the healing process. On the other, performing surgery and risking infection can jeopardize the transplants. It is a tough call and so we compromised. We decided to wait and see how it looked in a few weeks.

Two weeks later, I returned with a fair degree of apprehension. I did not want to go through surgery again with all its associated downtime and discomfort. Fortunately, the dryness had cleared up somewhat but there was still some concern. They told me to keep cranking in the teardrops and to discontinue the cyclosporen drops. Then, I should discontinue the cyclosporine pills in 3 weeks and see them a week after that.

Because there are a host of potential side effects of the cyclosporine, I am happy to be ending its use. On the other hand, I don't want to have come this far and have the transplants reject. This is another of the major milestones that started just over a year ago. Seven months into this adventure, I would prefer not to lose the vision I now enjoy. I am still confident in saying life was just fine without vision but that doesn't mean I am not enjoying what I have. After all, making the most of what you have is the operative philosophy here and it wouldn't be fitting to be inconsistent. In a week, I will discontinue the cyclosporine and in two weeks, we will see where we are without the anti rejection and what is up with that dry patch.

October 18, 2000

Another visual first on an airplane

When I started this journal in March, I wrote about the first time I looked out the window of an aircraft. I still enjoy looking out the window from time to time but I find myself more often caught up in what happens inside the cabin.

At least 50 percent of the time I fly, I find myself in a medium to long conversation with my seatmate. On a flight from Washington DC to Denver last week, I had one of those take-off to landing non-stop conversations with a young woman from the DC area. She introduced me to a new visual experience, which I will tell you about in a moment. It never ceases to amaze me how much personal information people share in these situations. Maybe it's the anonymity, maybe I am less threatening because I am blind, perhaps it is High Altitude Sharing Syndrome or maybe it is the interesting stories and openness about blindness I share that makes them reciprocate. People tell me about the problems their kids have, their trials and their tribulations.

Many of these folks stay in my memory and some I have had occasional contact with. For example, Ray was an IBM Executive I met in 1985 on a flight to Japan. I just got an email from him the other day. Bill was a founder of a major electronics company who had a Golden Retriever who traveled everywhere with him. I have stayed at Bill's place in Aspen on a ski trip. I met a wonderful woman who is the owner of a high-end Napa winery; another woman who is the CEO of a major electronic chip company; a guy whose daughter was struck by lightening and lives now with a 20-minute memory capacity. Fascinating folks who shared a slice of their lives with me in 5 intense hours or less.

Back to Ms DC to Denver. We compared notes about our former top-secret government jobs without actually saying anything about what we did. She has a new job now, which entails less travel and suits her better for having a child.

When I told her that I worked on a GPS navigation system for the blind, she asked, "did I see you on television?" We quickly determined that she had seen the NBC Dateline piece. She says that she watches many of these evening magazine shows which her husband hates because they are on late and he likes to go to bed early.

We then evolved to discussing what I can now see. Inevitably, she asked what I could see of her. Since she was on my left side, I had not had the chance to look at her with my good right eye. I turned to face her and said I could see blonde hair and the color of her clothing. She asked if I could tell what color her eyes were and I said only up close. She then leaned up close and asked again. This is where it got interesting.

Eyes are quite amazing visually. I have only looked closely at my wife's and at my boy's eyes. I have to be 6 inches or closer and I need a couple seconds to stare to see any detail. I would term my visual range for seeing eyes, "kissing distance."

It is quite unsettling looking into someone's eyes especially when you aren't used to it. When Ms. DC to Denver casually leaned close enough for me to stare into her eyes, I couldn't even stammer out the answer that her eyes were blue. I might have been less shocked if she had taken her shirt off and asked what I could see. I had never seen someone's eyes other than my family's and it was very disconcerting. Although I was tongue tied, she was very sweet about it and probably didn't notice I was flustered.

This was a very intimate experience for me and I can't fathom how sighted people go around seeing each other's eyes without being flustered too. I understand a bit better now why so much is made of expressions in the eyes as it is talked about and written about passionately and poetically. I will certainly remember Ms. DC to Denver for introducing me to yet one more mystery of the sighted world.

October 26, 2000

A major medical milestone

I was more than a little nervous a week ago when I stopped the Cyclosporine anti rejection drug. I was pleased to stop because of the potential side-affects of the drug but worried about an increased possibility of tissue rejection. Nonetheless, Dr. Goodman felt that the eye had been quite good over the past 7 months and despite a small dry patch of tissue, it was prudent to discontinue the Cyclosporine.

All four of the doctors in the office had a look at my eye yesterday and concurred that it still looked healthy. The dry patch appeared stable; no deterioration due to being off the anti rejection drug. I was immensely relieved to hear this.

Also to mark this day in the evolution of my new vision, I spent a couple hours at Stanford University getting my brain scanned and mapped. Dr. Ione Fine from UC San Diego took me to the Stanford Lab where they have one of the best Functional Magnetic Resonance Imaging (FMRI) facilities in the world and experts in conducting and analyzing the data.

What they wanted to find out is what visual stimuli my visual cortex is seeing versus what I perceive. My doctors say that my eye looks as clear as a person's eye with 20/40 or 20/60 vision because of a small cataract. So, why do I perceive what I see at a level of 20/1000 if the visual data is good as far as the retina? There are some areas they can't scan between the retina and the visual cortex. Maybe the visual data is lost there. Maybe it is getting to some level of the visual cortex but I do not yet understand the data.

My curiosity about these questions and my inability to turn down a new experience, led me to agree to spend two hours in this FMRI tube at Stanford. It was incredibly loud. The first general scan sounded like a new age band made up of a giant dryer with a pair of ski boots being tumbled around plus an enormous set of bag pipes being played in Grace Cathedral. I would have hummed along but I was warned not to move a muscle while they were scanning.

Another type of scans sounded more like a laser warfare video game at 150 decibels. I had earplugs in so it wasn't terrible. In fact, for the last 15 minutes of the experiments, I had a hard time staying awake. It was a perverse treat to be able to remain perfectly still during normal working hours. Pretty rare for me.

It will take 2 weeks or more for them to process the data and see what has been learned so far. It is likely that I will have to experience more FMRI scans before the data is conclusive. I am happy to help this team of Brian, Ione, Alex, Alis and Jonathan with their scientific efforts to understand visual processes. Two "someones" donated his or her eye tissues to help me out. It is the least I can do for science to spend some time being a Ginny pig regardless of whether it helps me personally. Besides, they are half-kidding me that I have the visual-motion capabilities of a cat. I can't help being curious about that.

October 29, 2000

Galapagos, An IMAX Experience

I visited the Galapagos in 1983 with a girl friend and it ranks as one of the most incredible places I have been in the world. I wondered what it would be like to see the animals and life of these islands on the big screen, 60 feet high, with 12000 watts of multi-channel sound. I saw one IMAX film previously, Fly at the Smithsonian Air and Space Museum in Washington D.C.

The Galapagos IMAX wasn't quite as stunning to me as Fly. The contrasts weren't ideal for me as the animals were often mixed against a multi-colored background of vegetation. After all, animals are designed to blend in with their surroundings, which happen to be bad for my visual acuity. Some of the birds were pretty clear against the sky. When I saw the giant Galapagos tortoise on the screen, I could fill in the blanks and details from my memory of touching this amazing creature. I remember feeling a puffy area on its throat which deflated with a sound like sighing. I couldn't see the throat per say on the screen but it seemed like I could.

They handed out 3D glasses to enhance the visual experience. I got absolutely no benefit from these glasses. Jennifer said things were much clearer with the glasses. She tried covering one eye and said it was still better with the glasses on. I wonder how these 3D glasses work optically because they made no improvement for me.

No matter how big the screen or the sound, there is nothing like being there in person unless you were talking about watching a football game from the 4th level. It was fun to go with my children and family to see this most spectacular movie. It just reminds me that the Galapagos is a place I want to take my kids to see and a place I want to check out again myself.

November 14, 2000

Incremental Improvements

Upon looking at how life has changed 8 months after regaining low vision, the practical advantages of having sight fall into different categories. There are some minor travel benefits to seeing like being able to see when the person in front of me in line moves forward. I got around pretty well before having sight and I still cannot drive, so life is not that different now.

It is certainly incredible to see scenery and people although I can't say this has changed how I function, it has added an additional component to life.

The incremental changes are not what you might think, certainly I would not have pegged these differences 8 months ago. Top on my list is being able to catch a ball in the air. This is pretty hard to do if you are totally blind and now I can play ball with my boys and catch the ball 80% of the time it is thrown to me. I have spent half my life chasing a ball around in one way or another so this is a big deal.

Jennifer laughs at how I can now sort the laundry colors properly. I used to be a fan of throwing them all in together and washing them on the warm cycle. Invariably, we would end up with pink under shirts. Now, it is a kick to be able to clearly sort the laundry into separate white and colored loads. Life is good!

I haven't done much with reading print yet. I would have thought this would be a big advantage. I am so accustomed to braille and synthesized speech on my computer that I rarely look at the screen or at a piece of paper. I do need practice and magnification to become proficient with sight reading. I haven't yet gotten the tools I need or taken the time to practice. So far, I have read labels or titles just for fun and not because I need to. Odd that when you sum it all up, catching a ball is the most practical improvement I have experienced so far.

November 15, 2000

Upsetting News

I was stunned today when Dr. Goodman looked into my eye for the standard check-up and immediately said, "Mike, we have a vigorous rejection going on." He asked if I had experienced any light sensitivity, discomfort or blurriness. I said, nothing, which was obvious. The deduction then is that stopping the cyclosporine anti rejection drugs 3 weeks ago must have set the stage for this rejection.

I am numb and reacting academically about this news. Just this morning, I gave a talk and mentioned as I always do that there is a 50-50 chance of rejection. And here I am, shifting from the 50% success column to the 50% rejection column. I haven't noticed any blurriness yet so it can feel academic. Judging from Dr. Goodman's reaction, this is quite serious. The action is to crank up all the drugs. He gave me a steroid injection in the eye. I start the cyclosporine immediately along with other drops. It takes a few weeks for the body to acclimate to the cyclosporine. I will go back to San Francisco the next couple days for more steroid injections. Dr. Goodman says that these rejections can be reversed but this one is fairly far along, maybe 10 days.

I will have many more "what if" questions when I see him again tomorrow. I can't even write this down coherently let alone think of the right questions to ask. Now is the time to rally my personal fortitude and your good vibes. My son Carson wants to know if the eye rejects, do I get my money back.

November 16, 2000

Follow Up

I noticed a bit of blurriness today as we made the long drive to the docs in SF. Dr. Goodman gave me another shot in the eye, this time with Cortisone. He said some of the cells, which were clumped up yesterday, had disappeared today. Still, the back of the cornea, the endothelial was still cloudy. These are the cells which drain the moisture from the cornea and keep it clear.

I will now start taking a new anti rejection drug called Cellsept on top of all the other drugs they are throwing at this situation. Back to the city several times in the next week. Stay tuned.

November 17, 2000

Third day at the Doc's

As I walked East on Bush street, coming from Dr. Goodman's office and headed for the Ferry Building, I was relying primarily on my cane to keep me from crashing into the many people and obstacles. It was a beautiful crisp day with a warm feeling in the air and happy people hurrying home from work on a Friday for an extended Thanksgiving weekend. San Francisco really was at its best and I was absorbing every inch of it, one cane sweep at a time, not even minding the near misses by cars darting out of drive ways, although I would use the occasion to open my eye despite the pain to see what was happening.

It was about a mile and a half walk, mostly down hill and not too many turns that I remembered. I was lost in my thoughts about this cornea rejection and didn't feel like interrupting that train of thought to ask directions. When I crossed the first set of cable car tracks that clued me into Powell Street. When the people traffic got really thick, I knew it was Montgomery Street and the Financial District. When I hit the bricks, I knew it was Market Street and I again opened my eye to confirm that they were indeed the red bricks of Market Street.

By this time, my eye was feeling much better and I forced it to stay open when I saw the Ferry Building several blocks East at the end of Market, gleaming in the afternoon sun. I kept my cane sweep moving quickly so I could avoid the growing number of obstacles while focusing on that sunlit spire ahead of me. There were some tricky crossings and now I used my vision again to help me negotiate them. I was definitely feeling much better.

As I day-dreamed along Market Street, I recalled my flight to Phoenix last night and how I was absorbing every visual thing I could in case I lost my vision. I exclaimed to Kim every time I saw lights in the sparsely populated route we were flying. I learned from my talking GPS that these were places like, Coledale Search Light, Bullhead, Kingman and finally Phoenix. It was so uniform and massive from the sky. I was appreciating everything and everybody I saw last night and this morning just in case.

I flew back from Phoenix this morning after being the Keynote speaker at a technology conference in order to get another injection. After two injections, my eye was pretty sensitive to all the drops I was putting in. I wasn't looking forward to yet another jab in the eyeball. And, boy was I right. This third shot really hurt. This wasn't your average poke in the eye, this was a needle full of a mega dose of Cortisone and did it hurt!

I waited in the Doctor's office for a while to let the pain subside but finally I had to head to catch my 3:30 ferry and so off I went, cotton swab pressed to my eye with one hand and my cane in the other. It wasn't until the beauty of the San Francisco afternoon captured me and I could take my hand down that I thought about the good news from the doctor. "The eye is continuing to clear up. He said the rejection seems to be turning around. We normally give two injections but we are giving you three just to make sure. Now we just have to turn things over to your body and the immune suppressant drugs. See you back here in 4 days." This was very encouraging news although he cautioned that we weren't out of the woods yet, an obvious analogy as I moved through the heart of "The City."

Once I got my eye open and could leave it open, I was really enjoying everything visual, small and large. I braved the last major crossing in front of the Ferry Building. I then turned left and followed an interesting pattern in the sidewalk. Pigeons were walking and flying all around. Yellow machines were parked on the street and sidewalk. Bright orange fencing closed off a big hole in the parking lot. Just after the fencing, I turned into the lot and headed for the wooden dock with a round tent looking structure on it.

I could now hear the waves against the pier and see the water and things sticking out of it. Seagulls screeched and flitted by. I kept going, right out on the wooden peer, through the doors with my rolling bag clacking along behind me sounding like a train on the tracks. The wooden pier gave way to a metal pier and I found a place on the rail in line to wait for the Vallejo ferry. I took in the pylons jutting out of the water and the many boats coming and going around the busy pier. Just looking at the flowing ripple of the water enchanted me.

As our ferry coasted in, I watched to see how they tied it up. A guy reached out with a pole and hooked a tie line, which he secured to the boat. The people moved forward to board the ferry and I realized I was no longer thinking about the eye discomfort. It was so fun to see all the activity around the pier and just following the line of people into the ferry visually was a pleasure. I took my favorite seat near a window and settled in for the beautiful ride across the SF Bay. I may not be out of the woods yet, but I am more confident than ever that things will work out and if they don't that too is for a good reason.

November 21, 2000

Fourth rejection visit

I thought I was off the hook with those Cortisone shots but I got another one today. Dr. Goodman wanted to make extra sure that the rejection is reversed. The shot wasn't as bad this time.

The cornea has cleared on the upper half and is still cloudy on the lower portion. They should know in a couple weeks how this is going to progress. Even if it clears up altogether, there may be some long term damage to the cells from the rejection. We'll deal with that when the time comes. For now, the news is good and the eye is headed in the positive direction.

November 29, 2000

A week without any injections

Looks like the "full court press" has turned the cornea rejection around. After a week without injections, but lots of other medications, and 2 weeks since the rejection was first observed, the report is good. The top two thirds of the cornea is clear; the bottom one third is still swollen.

Dr. Goodman feels that we caught the rejection and turned it around with the best possible results. He cannot say if the cornea will clear up as good as before the rejection. As long as I am diligent about my hourly drops and daily pills, the eye may continue to improve. At my current level of visual processing, I don't notice any degradation in vision. I am still having a blast, looking and learning, every moment and every day.

November 23, 2000

Second Time Skiing

First day of the 2000-2001 ski season and it was fantastic! I skied with family and friends at Kirkwood, a beautiful sunny day and we were practically the only ones there. It couldn't have been better for testing out my new vision on the slopes.

I am able to follow my guide without the guide calling constant verbal directions, as they would do in the past. Their main job is to steer me away from low-contrast items like bamboo obstacle markers or skiers in white suits lying on the snow. I have never run into anyone in 20 years of skiing without sight and I don't want to start now.

It will take many more days of practice before I can use my vision effectively on the slopes. I can however ski open and uncrowded runs by myself as long as a guide is nearby and watching out for people and obstacles. We did this often today and I enjoyed the freedom of making my own turns. The bright sun on the snow makes it so I can see ripples and moguls as well as the tree line and even rocks poking through the snow and certainly lift-towers.

The challenge right now is that I can look only for one type of thing at a time. I have to focus on that one thing and my processing time for what I see is still slow. By the time I see a rock while skiing, I usually can't avoid it. If I am looking for rocks, I can't see the bamboo obstacle markers. If I am looking for those markers, I can't see the rocks. I stop to admire the panorama, which takes all my concentration. That is by far the most stunning part of having some vision on the slopes in the beautiful Sierra Mountains, that and watching our boys ski.

I guess I'll just have to ski as much as possible so I can get better at visual multi tasking. It is fascinating to experiment and to keep having little visual break through experiences. It is all part of the mountain adventure. Every day on the slopes is like this and the new vision adds just one more mystery to the adventure.

November 25, 2000

Relying Strictly on eyesight

I had never gotten around to trying in-line skating and today was the first time. After two days of Thanksgiving meals, we all figured it was time to get out and get some exercise. I borrowed a pair of skates and wrist pads and off we went, skating, scooting, walking and jogging, through Bidwell Park in Chico, CA.

Knowing I wouldn't be too stable my first time out, I thought I would use a cane rather than Josh for mobility. Once I stood up on those skinny in-line wheels, I thought the cane was more of a hazard than a help. I might fall and impale myself on it. After all, my boys and extended family were all around so I had lots of guidance and skating advice. I folded up the cane, put it in my back pocket and set off with our motley crowd.

I was so focused on staying vertical that I didn't have much time to worry about obstacles. I didn't have enough control at first to avoid anyone or anything anyway. I tried holding hands for a while but that had me concerned about stomping on the person I was holding on to. We were on pretty clear park paths so there wasn't much to run into other than dogs, children, old people, bikes scooters, squirrels and other skaters. Thank goodness no other blind people were loose in the park.

I eventually got the hang of skating and was able to move along at a jogging pace, barely keeping up with my kids. After an hour and a half of skating, some of the food had worn off, as had some of the tension at this first time experience. I didn't fall and I didn't run anyone over. Well, I did fall twice but that was on purpose as I was going too fast to make a turn and it was easier to crash into the bushes than to risk wiping out on the pavement. It wasn't until we got back to our starting point that I realized I had made the entire trip without a cane or dog. I have traveled short distances without a mobility aid but not for so long, not that I am weaning myself from the cane and dog. It is just interesting to have done it and to think about the experience. Most of all, I am pleased to have gone in-line skating finally and to have done reasonably well.

December 27, 2000

The first sights of Christmas

It took a few friends asking what I was seeing on my first Christmas with vision before I started paying attention. Business has been hectic, the pressure was on to find gifts and to plan holiday gatherings. I needed to "stop and see the lights."

Christmas lights and displays really are perfect for a low vision person. I was more excited than the kids as we drove around at night exclaiming about the various neighborhood Christmas lights. They are such a vivid contrast, I could pick them out as good as the boys even if I couldn't completely discern the configurations. It was just fun to participate in this otherwise 100% visual experience.

I still felt pretty tentative around the tree ornaments. They have always made me nervous because they are so easy to dislodge from the tree and many are quite breakable. I can now see the colors of the ornaments but not always the shape or texture. At least I can keep from knocking them off the tree but I need to touch the ornament before knowing just what it is.

As you might guess, my favorite Christmas activity was skiing. The boys went on the chair lift without an adult for the first time. I am getting much better at skiing and using my vision and this includes being able to ski behind the boys and watch their skiing.

I skied with my long time friend and ski-racing guide, Ron Salviolo for the first time with vision. He knows me so well and he knew just what questions to ask to determine how to guide now that I was using low vision in addition to hearing. He quickly determined the level and type of information I needed. He would talk more when people were nearby or when low-contrast obstacles were in the area. I felt completely confident when skiing on my own knowing he was watching closely even though he wasn't saying anything. It reminded me why we have made such a strong skiing team over 20 years of racing and skiing together.

As we dropped into Sentinel Bowl off Chair 6 at Kirkwood, Ron stopped me and said to look back up the hill. The wind was blowing the snow off the ridge, over our heads, and the sun was shining straight through this blowing snow. It looked like thick smoke or broiling foam spewing over our heads. I imagined I saw colors of the rainbow in it. When I turned around to continue skiing down the mountain, the sun lighted up the vast visual panorama of snow-capped peaks and ridges too. Pretty incredible first Christmas with vision.

January 21, 2001

Strange Sightings

I have been seeing little things recently and having to explore and ask to find out what they really are. For example, I was looking at my laptop computer and kept seeing sparkles and flashes of light. Turn on the Star Wars music. I would tilt my head, lean closer to the computer screen and rub my eyes. I guessed that maybe something in the room was reflecting the sun into my face. Finally my co-worker Kim explained to me that these sparkles of light were actually particles of dust flying through the air.

I think of dust as an annoying smooth substance, which collects on equipment and on top of doorways. I had no concept of dust visually. It was so bright and so fleeting. Obviously dust has to travel through the air in order to land on a surface. I just never pictured that anyone could see the dust moving through the air. The fact that the sun was poring through the window certainly made it more visible than it might otherwise have been. It is just such a new concept, not to mention a new sight, that I was quite captivated by this sparkling dust.

Another example of strange sights was a sparkle of a different type on the ski slope. I was riding on a chair lift and noticed the colorful clothing of my wife in the chair ahead of us. When I mentioned this to Kim, she asked if I could see the snowflakes. I said no while still looking at the chair in front of us. Now, this seemed odd because I knew it was most definitely snowing. So, why couldn't I see the snowflakes?

My first thought was that my ability to see details is weaker than my ability to see color and shapes so the flakes must be too small to see. When I stopped looking far away and instead concentrated right in front of my goggles, there they were, a steady stream of white flakes, creating an almost impenetrable screen right in front of my face. This was astounding as here I was one minute looking far away and not even seeing the snowflakes, and the next minute I couldn't imagine how I could see through them they were so thick.

I assumed this phenomenon was unique to my strange visual situation until I talked to Dr. Ione Fine, a vision scientist. She explained that this experience was a normal vision situation and not unique to me. I never knew that sighted folks focus up close to see some things like snow flakes and that the brain essentially filters out those snow flakes when one is looking far away. This still boggles my mind. I don't think hearing works the same way but I am considering the analogy. My 8 year-old son told me that there are no two-snow flakes alike. I certainly couldn't see enough detail to notice distinct shapes of the flakes. It was amazing enough to see them at all.

I seem to be seeing more details these days although I don't feel like my sight is better. I can see up close the grain of a piece of wood or the hairs on a person's hands. I can see shapes moving on the LCD screen of a GPS receiver or the veins on a leaf.

I spent my second and third sessions in the FMRI machine at Stanford this past week and Ione Fine repeated some visual tests she had done last September in San Diego. Her initial results showed that I was seeing vertical lines on a monitor to a much finer degree than I did in September. She wants to run more tests to make sure but I was quite surprised how thin the lines could be and yet I could still detect them.

Another new revelation this past week had more to do with what I could hear and not see. I was walking with my friend Jerry Kuns. I was using my dog Josh and Jerry had a cane as we walked to a bus stop in San Francisco.

I caught myself looking around a couple times without knowing what I was looking for. It finally occurred to me that I was hearing echoes from Jerry's cane bouncing off of items, which I couldn't visually correlate with the sound. Echo location was such a subtle and integral aspect of my ability to get around quickly as a totally blind person. Here I was walking down the street using my vision and still hearing the sound while not knowing how to integrate that information with the new vision input.

Echo location is such a powerful tool. I was probably already using it to cue me to look for things visually that I heard. I just wasn't aware of the interplay between my hearing and seeing. This stroll with Jerry woke me up to this interaction between hearing and seeing. This too was similar to feeling snowflakes but not seeing them. As I pay more attention to the interaction between vision and my other senses, I'll probably have more strange sightings. Doo, doo doo, doo.

Note: The following explanation about dust particles was sent to me by Dr. Douglas Morrison of CERN in Switzerland shortly before he passed away in late February. He was a world expert in particle physics and many other subjects. Douglas Morison was a regular reader of this journal and provided insights and thought provoking questions about my experiences over the past year. I'll miss his brilliant mind, probing questions and friendship. I guess the good Lord needed some advice so he or she called on Douglas.

"Noticed your comment about seeing dust. The dust particles move around, called the Browning movement, because they are being continually hit by molecules of the air which are light, but traveling at high speed - usually they almost cancel out, but often are unbalanced and move the dust particles around. It is one of the assist evidence of molecules."

February 23, 2001

Follow Up Testing at UC San Diego

While my impressions are still fresh, here is my report of today's vision testing. Doctors McLeod and Fine will give the scientific version in due time.

Some aspects of my vision have improved according to similar tests today versus the same tests over the past 7 months. My ability to see fine vertical or horizontal lines has improved from seeing 12 pixel lines to 8 pixels. Yet, my ability to see letters on the typical Snelling eye chart has not changed much. It used to take me 15 or even 30 seconds to determine if the picture of a disk was concave or convex and now I can tell in a second. I am definitely much faster at figuring out visual information than I was several months ago. I am better too at integrating visual input with information from other senses.

I was most surprised when Dr. McLeod said that my color perception was better than his and he is fully sighted. Apparently, color is perceived along different pathways than other visual processes. One test examined the threshold at which I could see a faint color. Another test had me change the colors of one square to match another. I had no problem doing this. This would lead one to suppose that my color pathways were completely developed when I went blind and they did not deteriorate by lack of use over time. They showed me pictures of faces on a monitor and asked me to determine if the face was male or female. These were of all ages and they were set in a blank background so I couldn't tell from hair length which gender they were. I knew theoretically what some of the differences would be but I sure couldn't tell just by seeing a face, which it was. Dr. Fine said that sighted people are very accurate at this test. I guess this ability is developed after age 3 because I was clueless although I did better than 50% when I guessed.

It was fun looking closely at the faces and having Dr. Fine point out clues, which would help me determine the gender. I needed very stark differences like the arched eyebrows on females and the curvy upper lip. Once I knew to look for these clues, I was accurate 90% of the time. I wouldn't be able to use this in real life as I was one inch away from the monitor when looking at these pictures and the face was a still picture, not the changing face of a real person. If I could get an inch away from someone's face and get him or her to freeze for 10 seconds, I could probably get it right. I might get a few folks who would be thinking I was invading their space. In fact, I seldom had a problem telling men from women even when I had no sight so I don't really need this skill for practical purposes. It is just interesting from a vision science standpoint that I have no ability to recognize faces and yet my color abilities are nearly fully developed. I enjoyed learning the visual details nonetheless.

In summary, my brain is slowly learning to process certain visual information better over time. No one can say if I will reach a plateau in this learning curve or if I will continue this slow gradual improvement. Maybe I will get better at recognizing letters once I apply myself to the task of reading visually. I haven't done this yet. We'll check back on my progress in 6 months to see what is happening.

March 4, 2001

Skiing with vision is becoming more useful

I have just completed three fabulous days skiing at Big Sky Montana and had some new visual experiences in the process. I have spoken of the beautiful panoramas and colorful skiers I have enjoyed seeing over the past year in a dozen trips to the Kirkwood Ski Resort in the Sierra Nevada. On this trip to the Gallitan range of the Rocky Mountains, I seemed to cross over a visual plateau.

I have skied totally blind for 20 years and 1 year with low vision. My comfort zone and skills for skiing are as a "total." When the skiing gets challenging, I am better off with my eyes closed. Otherwise, I see the guide doing one thing and it confuses me about what I am doing. I see a bump but I don't know exactly where it is and I over react. I have developed very strong skills skiing by feel and hearing; vision disrupts these other highly tuned senses.

The vision has come in handy while sliding forward in a lift line or walking around people on foot. These activities happen at a relatively slow speed, a couple miles per hour, so I can figure out the visual information, process it and react accordingly. These mobility tasks worked fine without vision but now that I have it, the low vision gives me a bit more independence.

It is a completely different story using my vision at 40 to 50 miles per hour. This equals 60 to 70 feet per second and this is how fast my good friend and long time race guide, Ron Salviolo, had us skiing on the uncrowded, wide-open groomed slopes at Big Sky. When there was a mixture of sun and shadow on the slope, the vision was frightening. At 70 feet per second, one cannot hear very well because of the wind noise. Can I see 70 feet away and stop within one second if what I see is an obstacle? This is pushing the envelope. My strategy was to stick with my old technique of being a couple feet behind Ron so I can hear him.

On the other hand, skiing the bumps is a different equation because you are going much slower. The terrain is bumpy rather than smooth. I have learned to ski the bumps by feel and by skiing aggressively straight down the fall line. I found that seeing the bumps was very confusing and intimidating. By the time I thought about and guessed at what the shadows on the snow meant, I would miss the turn or fall on my face. It was best to close my eyes.

Today, skiing off the Lone Peak triple chair at Big Sky, I had a chance to experiment with no people around, medium size bumps and good sun on the snow to cast high contrast shadows. I aimed for those shadows. I turned on top of them and turned around them. I soon got the hang of how far away a shadow was and some idea of how big it was. Those shadows represented the lower side of the bumps. With this time to experiment, I learned to put my vision to use rather than shutting it off because of the distraction.

By the third time down this run, I was aiming for the tops of the bumps and hooting like one of the kids while gasping for breath in between. Ron would ski ahead and watch me from down below. He would give me tips when I reached him and then we'd do another set of turns. It was a lot of fun to use my vision as a benefit rather than being a distraction as it used to be. I managed pretty well without vision but as long as I have it, it is good to make the most of it. For the first time, this was happening. I won't always have the advantage of sunshine and wide-open slopes. I am certain however that wherever there is snow, and a big sky, I'll be skiing with all the capabilities at my disposal.

Note: Big Sky Ski Resort is about 50 miles South of Bozeman in western Montana. Ron and I have skied all over the world and Big Sky ranks up there among the best places to ski. First and foremost, it is way off the beaten track so the slopes are uncrowded. This is also because it has extensive terrain and the second most vertical feet of skiing in North America.

Everyone we met from the shuttle drivers to the Director of Ski School were very friendly and helpful. We coincidentally were there at the same time as Warren Miller who included Ron and I in his 1988 feature ski movie, Beyond the Edge. Warren tackles life with passion, humor and humanity like few others. It capped off three incredible days of skiing at Big Sky to run into Warren Miller.

March 7, 2001

First Anniversary

The mantra I kept hearing since I first was introduced to this idea of regaining some eyesight through stem cell and cornea transplants was, "50-50 percent chance of success or failure. The critical period is the first year." One year ago today, the bandages came off and I saw my wife's smiling face and blue eyes for the first time. I saw our boys, my mother, friends, flowers, enormous trees and the list has gone on and on. My first medium scare came in June when an ingrown eyelash was causing irritation but I thought it might be the beginning of a rejection. After stopping the anti rejection drugs in November a serious cornea rejection set in. A full court press by the docs turned that rejection around and today, they reported that the swelling from the rejection was almost completely gone and the cornea was very clear.

If I didn't see another day, I have a year of fascinating experiences I can be extremely grateful for. I can't say my life has changed radically because of having vision; it is as crazy and fun filled as ever. Besides seeing my loved friends and family, the highlights of the past year are: Seeing Mont Blanc from Fiona's chalet in Switzerland, seeing and skiing for the first time, seeing the stars, people watching and watching our boys play soccer. Seeing their baby video was pretty emotional for me. I am a little sad that I did not get to share this all with my father and that Douglas isn't around to talk me into writing a book.

One of the most functional benefits of this limited vision has been being able to catch a ball in the air and to follow people in a line or when walking through crowds. I saw my first mosquito today. Is this a good thing? It is if I can swat it. For the most part, there is nothing I can do today that I couldn't do a year and a day ago without vision. It is a revelation to realize that as well as to savor the mysteries of vision, which I have explored and may continue to explore. It is this mystery and the adventure of the unknown which have been the essence of this experience. Even the fact that I may or may not continue to have this limited vision or that it may get better contributes to the beauty of this blessing.

I am thankful to my family, friends, the doctors and caring strangers who have cheered me on since I first explored the surgeries 2 years ago and finally gained some vision one year ago. You have all been very welcome on this wild ride and I hope you are with me for the duration.

March 31, 2001

Spring Sights

My answer this month when I am asked how the vision is doing is, "I have gotten a lot faster at processing visual information." I notice this particularly when skiing. Even at moderate speeds, people and objects were previously distracting because I figured out what they were several seconds after I saw them. This causes the same problem as translating another language. If you spend too much time thinking about what was just said, you miss the current words. In the case of vision, I would miss the new information when thinking about the previous. This can make one a bit dizzy.

We skied several days in March and I am able to see people and objects quickly as well as terrain information. I still don't dare ski independently but I am certainly enjoying the vision more and I am able to keep my eyes open and enjoy the experience.

The weather has been so warm that we left the slopes mid day last Sunday and headed for Daffodil Hill. For one month in the early spring, the McLaughlin family opens their ranch to the public for viewing the 300 species of 400,000 daffodils planted on these gold country foothills. It looked like a sea of yellow until I got up close and could see that the centers were different colors. I enjoyed the enthusiasm of my boys looking at the flowers as much as I liked seeing them myself.

I continue to be enamored by dust particles floating through the air. It is so intriguing to see something, which is silent, has no smell or any other way of being perceived. The only way to know these particles are floating through the air is to see them and this is a hard concept for me to grasp. I want to believe that they are light specs and not really matter.

A bit of a concern at the docs yesterday. There is a thin dry spot in the eye, which could rupture. When I am seeing all these things and feeling pretty good about the visual improvement, it is a wake up call to get this sort of reality check. If it doesn't clear up in a few days, they will patch it up with some sort of tissue glue. It is easy to forget that the vision is so tenuous when all these fun spring sights are flowing in. Lots more flowers and some skiing left in the season and then we have the shorts and halter tops to look forward too.

April 10, 2001

Flying in the face of logic

For the first time, I read detailed accounts of two other people who regained some sight after being blind for many years. It may seem strange that I did not research these stories before embarking on my surgeries. If I had, my reactions may have been influenced in some way by preconceived notions from their experiences. I did see the first half of the movie, First Sight, prior to having my surgeries, but I found the blind movie character too much unlike myself to take the story personally. Now that I have read the true story by Oliver Sacks after a year of my own experiences, I can make comparisons without having being biased or influenced by their stories.

Both Sacks in 1993 and Gregory in 1963 hasten to point out in their articles that there is little to no scientific evidence upon which to base analyses and conclusions about the blind subjects in their stories. They report that merely 20 cases of restored sight are documented in 10 centuries. There has been little before and after analysis of the subjects. It is difficult to verify for example what the visual acuity of the subject was before regaining sight. Even with today's advanced medical science, evaluating visual acuity depends upon the patient's accuracy and honesty in reporting what he or she can see. For this reason, those who compete in the totally blind category in blind sports for example are required to wear a blindfold. Even then, athletes have been known to cheat just as sighted athletes have cheated by using performance-enhancing drugs. This is not to say that any of the subjects were misleading about what they could see or not see; it is just worth noting the nature and reality of documenting and understanding visual acuity. As a blind person, I may have more liberty to point this out than either Sacks or Gregory.

That said, the essence of the differences between the two cases and me is not visual acuity but the lives we led before and after the surgeries and the expectations about regaining sight. My life has been extremely rich and rewarding. My friends and family did not pressure me into the surgeries. They were curious like me about the possibilities but no one close to me ever expressed any thought neither that blindness limited me nor that sight would enrich my life any more than it already did. With this perspective, I experienced few of the negative repercussions reported about others who have regained sight after many years.

Shortly after my cornea transplant, I received emails from a concerned doctor in Finland about the potential for depression based on previous cases. She mentioned one person who had committed suicide. I found this hard to fathom until I read the detailed Sacks and Gregory accounts. I take particular exception with the conclusion of the blind patient at the end of the following quote from the Sacks article.

"An infant merely learns. This is a huge, never-ending task, but it is not one charged with irresolvable conflict. A newly sighted adult, by contrast, has to make a radical switch from a sequential to a visual-spatial mode, and such a switch flies in the face of the experience of an entire lifetime. Gregory emphasizes this, pointing out how conflict and crisis are inevitable if "the perceptual habits and strategies of a lifetime" are to be changed. Such conflicts are built into the nature of the nervous system itself, for the early blinded adult who has spent a lifetime adapting and specializing his brain must now ask his brain to reverse all this. (Moreover, the brain of an adult no longer has the plasticity of a child's brain that is why learning new languages or new skills becomes more difficult with age. But in the case of a man previously blind, learning to see is not like learning another language; it is, as Diderot puts it, like learning language for the first time.)

In the newly sighted, learning to see demands a radical change in neurological functioning and, with it, a radical change in psychological functioning, in self, in identity. The change may be experienced in literally life and death terms. Valvo quotes a patient of his as saying, "One must die as a sighted person to be born again as a blind person," and the opposite is equally true: one must die as a blind person to be born again as a seeing person."

In my case, blindness was, and is, part of my personality, part of my being. Dr. Goodman did not lobotomize this fundamental part of my being when he operated on my eye. By getting some sight, I gained some new elements of my personality and lifestyle without rejecting the blindness. I am not a blind person or a sighted person. I am not even simply a visually impaired person. I am Mike May with his quirky sense of humor, graying hair, passion for life and rather unusual combination of sensory skills. I consider my coping techniques to be 90% from the perspective of a totally blind person and 10% that of a visually impaired person. That balance may shift to 80-20 with more time and experience having vision. I am currently blessed to have the benefits of both worlds. If I want to subtly check the time, I read my Braille watch under the table rather than glancing at it visually. If I am cueing in a line, I can move forward by watching the person in front of me rather than having to concentrate on less obvious audible signals to do the same. The situation is not black and white as Valvo's patient suggests, neither for blindness and sightedness nor even for race for that matter; we are all individuals.

There is a wide variation in the perceptive spatial abilities of blind people. Those blind from birth may have less spatial ability than those with even a few years of vision. However, I believe my active involvement in sports has enhanced my spatial abilities and that some blind people orient very sequentially and some have better spatial perception and abilities. We can certainly agree that as adults we don't learn as quickly as children but I am not willing to accept that my brain has no plasticity, that it cannot adjust and change with visual input. The preliminary tests at UC San Diego seem to support this.

Having now read the Sacks and Oliver accounts and with one meager year of adult vision under my belt, my view is that regaining sight after many years of blindness has mostly to do with one's interest in and ability to deal with change. Both the Sacks and Gregory subjects led average and consistent lives. Regaining vision created major upheaval and change in their lives. It seems that they also expected the adult vision to make more of a difference in their lives as well which further disrupted their perception of normalcy. In my case, I have sought change and thrive on it. I expected new and interesting experiences from getting vision as and adult but not that it would change my life. So where as, others have slipped into depression from their experiences, I am enjoying my new visual tools and the fascinating entertainment it affords me.

May 3, 2001

A lingering Medical Issue with Tissue

I reported at the end of March about a thin spot in my eye. It hasn't healed yet. It is located at the top of the eye where the stem cell tissue meets the cornea.

The docs put a special spot of glue on this thin spot and a clear contact over that. After 10 days or so, the glue and lens sloughed off as expected. The spot was still not healed however.

On May 1, they put another glue patch on the eye. It is very tricky to get it to stick because the eye gets wet from tearing. The idea is that the patch will promote blood vessels and healing in the area. The procedure is not fun and we hope it will do the trick the second time.

May 9, 2001

Is the Third Time the Charm?

The glue came loose last night and this time I felt it. I already had an appointment scheduled the next morning.

The docs decided that the thin spot was no better and it was best to glue it for the third time. Maybe I was more tense because I knew what was coming. My eye certainly was not cooperating. The eye was moving all around and tearing a lot. Dr. Goodman could not get the glue in place and had to keep drying the eye and reapplying the glue. It was really painful this time. The eye was bleeding a bit but they finally got the glue to stick and the contact in place.

My eye hurt for about a day and then gradually went back to normal. None of this has affected the vision other than when it is in pain and I kept it closed. I hope this third gluing does the trick as I don't think I can sit through another in-office procedure to repair this thin spot. All these trips to San Francisco and unpleasant repairs are wearing my tolerance thin too.

May 22, 2001

No more glue for the moment!

I was extremely releived when Dr. Goodman said the thin spot was healing despite the glue coming off for the third time two days ago while I was in Mexico. Back in a week so he can watch it closely.

Dr. Goodman also commented that the small cateract evident when they took my bandages off in March of last year was now 50% larger. He may eventually remove it but he doesn't want to mess with the eye until the current problems are cleared up and the eye has been stable for a while, maybe next year.

It is not very exciting to hear about all these negative medical issues and the fact is that my vision is as good as ever in spite of all this. I am still enjoying the mondane visual aspects of every day life, people watching, catching a ball in the air and the scenery. We were in Queretaro Mexico last week and I loved noticing things about the environment which is different from other places. There were often huge carved wooden doors. The ubiquitous churches, convents and the like were interesting to see. I remember traveling with a friend in Spain and France 20 years ago and hearing enough churches described to last me a lifetime. To be able to see the archetecture was much more interesting than hearing about it. It seems like I am picking up more and more little stuff like seeing street lights in the daytime or seeing a kite in the top of a tree. I think I am just getting more relaxed about using the vision and getting faster at processing visual information as opposed to having a radical improvement in acuity.

June 4, 2001

Medical Update

I expected the worse when I went for a check up today with Dr. Carson since the thin spot in my eye had been glued three times but still not healed. This time the news was good despite the strain I may have put on the eye while in Miami Beach over the past week. The spot is completely healed but it is much better. Hurrah!

June 4, 2001

People Watching in Miami Beach

The weather was beautiful and so the South Beach section was flowing with beautiful people, many just strolling for the sake of strolling. The Lincoln Road section is closed to traffic for 10 blocks so it is ideal for walking, eating and people watching.

I make sure I get a table in a sidewalk cafe with the strolling traffic on my right (good) side. This gives me the best chance of watching people without appearing to stare. In fact, I have to look longer than the normally sighted person to figure out what I am seeing but I am learning to be somewhat descrete, I think. I can't see people's visual reaction to me so I have to rely on my sighted colleagues to refine these finer points of people watching. I know that when my colleague stammers in the midst of a sentence that I should be on alert for a passer-by. I am figuring out a lot more about what I am seeing as compared with the first "sidelwalk people watching" I recall doing in London last July.

Since a TV piece ran on the Discovery channel about me while I was in Miami Beach, several folks came up to me to say congratulations. One car actually pulled over to the curb to find out if I was that blind guy on TV last night. This sure makes one have an understanding of the ubiquitous influence of television.

I particularly enjoyed the Jazid Club on Washington Street. The band was really loud but so good it was worth staying. I could see the lead singer clearly with his white clothes against black dark skin amongst the stage lights. Trying to get my mind around the jirations of the dancers was fun but challenging. I have always visualized dancing in my mind and that is so very different from seeing it. Being a rookie at this, I couldn't picture patterns by watching although I think I can learn. I did get a strong impression of sentuality from one woman versus another but I couldn't say what it was about her dancing that gave that impression. I'll just have to keep looking and learning.

July 8, 2001

General Update

I got a clean bill of health at the last doctor visit a week ago. No more problems with the thin spot in the tissue.

My visual acuity remains stable but I am quite sure my speed in processing visual information is much faster. I continue to see the mundane details of daily life, not worth commenting upon but interesting to me nonetheless. Things like shadows on the ground, patterns in the carpet or birds flying by can all distract me from a conversation albeit less then they used to.

I did have another dramatic first experience today. The boys were complaining that they would have to wait for me at intersections on an outing to the store as I would be walking and they are on their bicycles. Carson asked that I ride Mom's bike. I didn't feel very confident riding a single bike. I have only ridden a tandem for years. I did pilot the tandem once with my brother on the back as mentioned earlier in this journal. That was a bit scary but it worked with him guiding from the co-pilot seat.

Carson assured me that if I rode the single bike and got hit by a car or flipped over a pile of leaves that he would dial 911 on my cell phone or if the cell phone was crushed in the fall that he would go to the nearest neighbor and get help. Wyndham was less sure that I should do this but I decided to give it a try.

The trip is only a half-mile across 9 intersections and on a busy street for a short segment, only one major intersection to cross. I was mostly concerned about hitting a pile of leaves in the shadows or that silent bike rider coming toward me. The boys promised that one would ride in front of me and the other behind and alert me to obstacles, sort of like we do skiing.

I really had to concentrate but the sun was high so the shadows were minimal. We had no mishaps although the boys chatted the whole time and I wasn't confident that they would tell me of the low contrast obstacle which might be in my way. Carson kept saying, "Dad, I can't believe that you can ride a single bike so well after 44 years of not seeing." The ironic thing is that I used to ride a single bike as a blind child. After I crashed my brother's and sister's bicycles, I wasn't allowed to use them anymore. That was when I was young and invincible. I figure I used up all my luck to have lived through the period. Best not to press my luck single riding too much these days. The boys sure enjoyed it and I did as well. We'll leave it at that.

October 1, 2001

3 month Summary

I am surprised to see that I haven't written anything in my journal since early July. Here is a collection of random thoughts since then.

It is very reassuring to have had nearly 5 months now with a healthy eye and no issues. The docs are starting to cut back on the anti rejection medication. Once I am rid of those drugs and the eye is still healthy, we will have crossed another major milestone.

I continue to live and learn about what I am seeing. People watching remains one of my favorite activities as does marveling at nature. I saw a beautiful orange moon the other night that I would have sworn was a streetlight.

The awful events of September 11 impacted me in a number of ways. For one, I could see the pictures on TV that they showed over and over again. Understanding images on television is still difficult for me but when they repeat them, and there are stark features, like the fire shooting out the side of the building, I can fortunately and unfortunately see the pictures. Understanding them emotionally is a different story.

The Saturday after September 11 was a sunny day on the Davis soccer fields. The parents were milling around as usual but still feeling numb and yet we had to be out there for our kid's sake, to see and hear the vitality of life. A guy in a bright yellow referee shirt strode up to me, draped his arm over my shoulder and said, "I am Fred, a Referee. I just wanted to say that in the midst of all the bad things happening in the world, it is uplifting to see you out here and to be reminded that really good things happen along with the bad." I didn't know Fred but I was happy to be the source of some inspiration for him. I was already appreciating being alive, having my family, friends and the good health to be running around on a soccer field.

I periodically like to reflect on the whole experience of regaining some sight and putting into perspective. Two major things happen to me recently and they were even more significant to me than the new vision.

I have been working on GPS developments now for 7 years and for 2 years on our own with Sendero Group. The struggles have been more than I tell most people. I give talks all the time about believing in oneself and dreaming big dreams. We have done okay all things considered but, to use a football analogy, we have been inside the ten yard line more times than I can count without scoring. Finally, our big score happened; we got our big break. Actually 2 back-to-back touchdowns.

Two weeks ago, Sendero teamed up with Pulsedata and HumanWare to put GPS on the BrailleNote PDA. Then, last Tuesday, September 25, 2001, I got the phone call. Sendero was awarded a $2.25 million grant over 5 years to work on GPS and other wayfinding technology. I was absolutely numb, in shock and elated. Thank goodness we are not forced to make hypothetical decisions but I will tell you that given a choice, I would take the grant over the eyesight in a heartbeat. This was a very important event to me, to blind people, to my family and investors.

I promised our boys I would do something dramatic if we got the grant so I let them shave my beard off. I haven't had a naked face in 25 years. It looked a little strange in the mirror but it felt and continues to feel strange all the time. Who knows what tomorrow will bring. I am sure appreciating today!

November 21, 2001

"Seeing" my first movie

After 19 months of my new vision, I have found watching moving pictures to be mainly an audio experience. The family watched Star Wars last night after a huge Thanks Giving meal. I enjoyed slumping into the couch with my boys on either side but I never got a clue what the movie was about other than loud battling. I figured out more about the plot in the kid's movie "A Bugs Life" than in this Star Wars movie.

On the other hand, I got a lot out of seeing Warren Miller's Cold Fusion Saturday night in Stockton. This was Warren's 52nd yearly feature movie and our 14th, the first being the one I was in, Beyond the Edge, in 1988.

I have enjoyed all of these movies, some more than others, all with great sardonic humor, incredible skiing and snow boarding. The enthusiastic crowd adds to what has become our family tradition. The boys have come with us since they were born.

Cold Fusion is the first movie I have literally "seen." We sat front and center, first row, 15 feet from the big screen. Warren does a great job of describing the people and crazy happenings in his movies but by definition, much of the visual footage defies words. I was so close and the contrasts were so good that I could see and understand for the first time how spectacular some of these feats are.

We were in Alaska at Mount Aleyeska. My stomach was in my mouth seeing the powder piling down the slope with skiers bouncing through it, dodging avalanches. I could tell the degree of steepness and the speed of the skiers.

We were in Kenya, trudging through the forest, past elephants and up to the glaciers. We were helicopter skiing, cliff jumping and skimming over almost frozen ponds. I felt part of it, no more than 15 feet away. Somehow my inexperienced visual cortex was making sense of this movie bringing to life my imagination of these experiences that I had heard and felt for over 20 years but never seen.

This does not take away at all from the 13 previous Warren Miller movies, our start to each ski season. My mind is still boggled by the cliff jumpers and the magnificent backcountry terrain around the world. Now I have visual confirmation that we are all just as crazy as I have pictured.

January 20, 2002

The Zoo away from home

The word awesome is so overused. However, looking straight up into the face of a 19-foot giraffe is one instance when the word is justified. Awesome, very, very awesome.

I had the opportunity today to go behind the scenes at the San Francisco Zoo with my boys and some friends. BBC Television is in town filming a documentary on me and it happened spontaneously that our friends were going to the zoo and so we joined them. The zoo staff very nicely invited us to meet their giraffes, up close and personal.

We fed Dusty acacia leaves and pellets as two other giraffes, the ten-foot baby Jessie and big Luke looked on. Nothing like Giraffe slobber on the fingers or the feel of the hair under her chin to make the experience unique. I was most awed bythe the head and tall ears descending from the height of the trees down to my punnie 6-foot level. I felt like an ant in her presence. We had lots of relaxed time, just staring at each other, just what I need as a low vision person to figure out what I am seeing.

We moved on from the Giraffes to the small animal rescue center. I asked jokingly if they had a Kinkajou. I remember feeling one when I was around 8 years old. In fact, they did.

This particular Kinkajou was found in the back of a policeman's car as a baby. Its name is Benjie and it is now about 23 years old. Kinkajous are from South America. It was much smaller than I remember it as a child. Benjie clung tightly to my leather jacket and explored my chin curiously. He blended quite nicely with my brown coat.

It would be amazing enough to feed a giraffe and hold a Kinkajou. To see them for the first time on top of this was really something. Either animal in their natural environment would have blended in so well that I couldn't possibly have seen them clearly let alone being able to touch them.

March 7, 2002

In My Dreams

(Two-year anniversary of gaining some sight.)

This experience had to do with a number of incredible circumstances all happening on one day in one place. First, I'll tell you what I experienced and then explain these circumstances.

I had a new ski guide, actually, it was the first time he had ever guided. My biggest fear when skiing as a totally blind person and for the past 2 years as a low vision person is running into or being run into by other skiers or snowboarders. On this special day, there were literally 17 people on the slope, nobody to worry about running into, and no, we weren't helicopter skiing. That is definitely on my list of future stories.

With this new guide, I had to depend upon my vision because he only talked occasionally. This was nice because I was able to savor the silence that only 2 feet of freshly fallen powder snow can bring. I don't think my guide knew he might be guiding that day but conveniently, he had on dark clothing. Being a big guy, he was easy to see up to 50 feet away unless he blended with tree shadows. We had sunshine so this did happen from time to time.

When I would lose my guide in the shadows, I would focus on his ski tracks. This is one of the benefits of 17 people skiing on new powder in the Montana Mountains; most of the tracks you make are distinct. A skier's dream, FRESH TRACKS!

I would follow his tracks until I picked him up visually or heard him calling to me. The snow was so quiet; I definitely could not hear his skis especially since I wasn't worrying about being close behind him.

Jennifer and the boys were nearby too. Jennifer was enjoying her day off from guiding since I had spontaneously commandeered this novice guide into service. We were all in awe of the sunshine, fresh powder, fresh tracks and absence of people. Imagine, 8 chair lifts, 2700 vertical feet of skiing over thousands of acres. The chairs even had covers to protect against the cold Montana air on the ride up the hill. At most ski resorts; I look for the bump runs because that is where there aren't any people. What a treat to be able to ski anywhere on the mountain and maybe pass one skier each hour. Imagine, still getting fresh tracks at 4 PM in the afternoon. In my dreams!

Our lunch break reminded me of skiing in Europe. We skied up to the mid mountain log cabin chalet style restaurant. You could take your boots off and put on slippers during lunch. White linen adorned beefy plank tables. Gourmet food and service belied the log cabin setting. To cap off the dream, our boys, Carson 9 and Wyndham 8 years old, were patient over lunch and contributed to the conversation about politics, skiing and owning a piece of this paradise.

Even after lunch, we managed to find fresh tracks. It was so fun visually to be able to see a slope with tracked and untracked snow and to be able to aim for the untracked powder. The few tracks that there were, carved fascinating designs in beautiful contrast in the snow. My guide's tracks were wonderful dark S patterns etched in the white snow. I could almost follow them, some of the time. Suddenly, I couldn't see the tracks or my guide as I found myself in a big cloud of white snow powder. At the last second, I caught a glimpse of something dark in the snow and swerved. My ski tip and pole made contact with something hard, presumably my guide, half submersed in the powder. This was one of the downsides of a rookie guide and a rookie low vision person. I was so enamored by the fresh tracks and the sounds of silence, I wasn't paying attention to where I was going and nearly decapitated Warren Miller and there wasn't even a camera there to get it on film.

Did I mention that my guide was Warren Miller, famous filmmaker of hundreds of ski, snowboard and other movies over the past 50 plus years? That is who guided me, all day. At 77 years, he is still skiing 100 or more days a season. His tenacity and firm hand shake were evidence of a person in excellent shape. Thank goodness for me, we stopped ocasionally to let the kids catch up.

So, here we were, at a private ski resort, the Yellow Stone Club, 2 feet of fresh powder, the slopes nearly to ourselves and being hosted by Warren Miller, a man whose philosophies and lifestyle have inspired me since I first met him in 1988.

Ron and I had gone to Snow Mass/Aspen to compete in a speed skiing event at the last minute; the event organizers were told by the insurance company that the whole event would be cancelled if "the blind guy goes out of the starting gate." After preparing for the event and coming to Colorado to ski with the likes of Franz Weber and Steve McKinney, we were devastated to have to pull out of the event. I have spent my life finding ways to do things people told me I couldn't do and I hate a situation where I am thwarted.

Up skis Warren Miller who says, "okay, don't go out of the starting gate. Start to the side or right below it." Now, why didn't I think of that? Just when I thought all options for speed skiing in the event had been exhausted, the master of finagling and ingenuity came up with a solution. The rest is history as recorded by Warren Miller's film crew for the 1988 feature film, Beyond the Edge, Mike and Ron speeding down the racecourse at Snow Mass, Colorado.

Little did I know in 1988 that Fourteen years later, my family and I would share an incredible day at the Yellow Stone Club in Big Sky Montana with Warren Miller. Heck, I wasn't even married when I was speed skiing. One just never knows where speeding paths will take us. Only one thing for sure, if you don't get on the speeding path, you'll stay put. The good thing about a mountain, snow and skis, it's easier to go somewhere than it is to stay put. Just think, the speed skiing led me to Warren Miller. Warren Miller led me down the beautiful slopes of the Yellow Stone Club. Now, where will that lead me next?

The boys seemed to think having our own place in a skier's paradise like this would be okay with them. In my dreams? Why not? Stranger things have come true. Like, for example, speed skiing with the world's fastest skiers, being in a Warren Miller movie, being able to ski together with my wife and boys, on fresh powder with Warren Miller and 17 other people, actually using vision to see where I was skiing after 43 years of not seeing. In my dreams, in my reality.

Still Excited, July 16, 2002

As I fly over Lake Tahoe in route to Denver, I am reminded of my first visual impressions from an airplane. The difference between today and over 2 years ago is that I can better guess at what I am seeing. What is the same is that I am still guessing. Where as I couldn't help but ask my neighbor for help in describing what I was seeing 2 years ago, today, I think my guess is pretty good and don't bother. There is definitely a big lake, perhaps Tahoe, perhaps another. I wonder what the rectangular bright green patches are, maybe golf courses or maybe cultivated crops. There is a bright blue thing, which I can only guess is a goddy casino.

Even though I haven't written in this journal in a while, I am still enjoying the every-day sightings. I am still enamored by floating dust. I love watching people and catching a ball in the air is still quite magical.

There has been some significant media activity over the past 9 months. It started with Discover magazine. The article appeared in their June 22002 issue and is quite well done. My favorite part of the experience doesn't even get a mention in the article. The writer, Michael Abrams, hung out with us and another family for a day at Legoland. He got to see me discovering the incredible small world of lego building and how it is to be with 3 young boys and one girl for a day at Legoland. He gets my commendation for enjoying that as much as for his excellent writing.

When the BBC contacted me last fall to talk about a television documentary, I agreed to interviews on one condition, that the piece have some humor in it. Not only did it have humor, it had science, sensitivity and and in-depth look at an uncharted subject as only the BBC can "properly" do. After several visits from the London based producers, and weeks together, I had communicated every thought and experience I could about my life and I acquired 2 very close friends.

This 50-minute documentary is slated to air on BBC 2, September 19. I have their permission to show it at personal appearances as appropriate. They really did a fantastic job. I was flattered to hear my friend Bryan Bashin tell a group gathered at a private party at the national convention of the Federation of the Blind, "there have been bad and mediocre movies done about blind people over the years, this BBC piece is by far the best."

Iam very thankful that I have had no medical issues with my eye for over a year. We have tapered the anti rejection drug from a high of 275 MG twice a day to 50 MG. The plan is to be at zero in 5 months. So far so good. I still enjoy every day and consider myself fortunate for a good job, great family and friends and a fascinating and challenging lifestyle.

August 21, 2002

Recent Highlights

Our family took a spontaneous vacation around northern Washington State recently and there was lots of "visual candy" on this trip. Here are some of the highlights: On Lopez Island of the San Juan chain, I saw seals sunning on the rocks. Of course, you can hear them too. I used binoculars to check out adjacent islands, nearby boats in hopes of seeing a whale spouting. The was a very cool old church. A beach called Baggett Beach was steeped in small rocks instead of the sand you would normally have making for an interesting variety of colors as well as a different sound as the waves sizzled through the rocks.

In the Cascade mountains, I was struck by how close cliffs and peaks looked that were in fact miles away. We wandered through a lot of country roads where my kids pointed out the assortment of adornments peppering the lawns and fields of rural residents. I wouldn't have figured out that a shoreline house had 50 driftwood sculptures unless the boys had told me. I would have thought they were just a bunch of bushes.

The rock and roll museum in Seattle was incredible, mostly for auditory reasons but visual too. The funk exhibit is more like a ride than an exhibit. It culminates in a mind boggling auditory-visual-kinesthetic show. You were belted into your chair because you literally rocked out as the room tilted this way and that in sink with the funky music. The visuals were dramatic. It is aptly called the Experience Music Project.

I have been to several IMAX movies and have never gotten anything out of the 3D glasses they give you to wear. Sighted people say that without the glasses, the film is somewhat blurry and they don't get the 3 dimensional illusions. We saw a space shuttle IMAX at the Science museum. Certain aspects of the film did have a 3D appearance to me for the first time. When someone would enter the visual field from the side, it actually looked like they were next to me and they got further away as they walked into the center of the visual room. It made me feel like I could reach out and shake hands with them.

We stopped in a Mount Saint Helens exhibit but didn't actually go to the site itself. I got much more out of feeling the before and after models of the volcano than I did in looking at the models or pictures. The video presentation was pretty awesome visually, seeing things like trees flying around like sticks.

I have been enjoying seeing butterflies. I am not sure if I just wasn't around many before or if I am noticing them better. In any event, I enjoy the seemingly random nature of how they flit about. They represent such a carefree feeling that it makes me smile to catch one with my eye.

My youngest son Wyndham is currently really into baseball. We watch games on TV, we watch his Little League games and we go to professional games. I am learning how to interpret the visuals I get from the field. I can pick up some of the activity with the naked eye but mostly I am using a video camera or binoculars. I can sometimes see the ball in flight. I have noticed how the batter lifts his front foot just before swinging the bat. I have seen puffs of dust when the runner slides into base. I never knew how the umpire would run down the baseline to observe a ball being caught in the outfield. I have figured out how to distinguish the first base runner, baseman and coach all in the same general area. It is fun to watch the dynamics of the runner leading off base. I don't try to watch the whole game. I watch one person or area at a time. Usually I watch the pitcher, the batter or the runner. I listen to the radio broadcast to better explain what I am seeing. I sure couldn't figure it out by myself visually. The announcers don't tell listeners details like how the catcher goes down on his knees between pitches to rest his legs or how the batter pulses the bat before swinging. These are common visual sights and so don't warrant comment but I find them very interesting.

The boys captured a praying mantis and put it under my video magnifier, enlarged 10 times. It was so bright green. I could watch the tail move and the antennae flick about. It was quite cooperative to just sit there and let me observe it. It is hard to imagine that sighted folks see insects in such detail with the naked eye, day in and day out.

A day doesn't go by that I don't appreciate the visual details all around me. I have been building my visual catalog of these details and although this catalogue is significantly more filled out than it was 2 years ago, there seems to be an infinite number of visuals to absorb, not that I let this dominate my thinking. My low vision capabilities and techniques are pretty well integrated into my way of perceiving the world and moving about. I can now have the enjoyment of new sights without the distraction of the visual information dominating my perceptions.

Almost 3 years now with low vision and the mind's eye is playing a major role in my low vision experience, January 12, 2003

I am pleased to report that as of January 1, 2003, I was able to complete the phasing out of my amuno-suppressant medication and so far there has been no evidence of rejection. Per my writing above, there was a rejection when we went cold turkey in the Fall of 2000. I am thrilled with the success this time.

We have had the opportunity to ski 12 days so far this very snowy season and there is one thing that is clear, even if by most standards my vision would be considered very blurry, what I know about my environment helps tremendously in assisting my visual perception of that environment. Downhill snow skiing happens to encompass circumstances where this is particularly true and useful.

I have skied hundreds of days at the Kirkwood Ski Resort, near Lake Tahoe, since I first was instructed in the Discovery Blind Sports learn-to-ski and race program in 1980. I was totally blind for most of those ski days and have developed a mental map of all the Kirkwood runs including where there are trees, lift towers and changes in terrain. My guides are instructed to focus on 3 major things: Keep talking, steer as wide of other skier-traffic as possible and announce significant terrain changes. This is a lot to ask of a guide so once a blind skier has a good mental map of the terrain, the downhill skiing experience works best. In other words, when one has a mind's eye view of the ski slope, it is not as necessary to actually see it.

As our 8 and 10 year-old boys are venturing on more obscure advanced runs at Kirkwood, they are wanting Mom and Dad to come along and this has introduced me to runs I am less familiar with. I am so much more tentative in skiing these runs, which I can't picture as I ski down them. Complicating things further is the fact that my guide has become a bit more lax with auditory information since my low vision and minds-eye have worked together to make me able to get by with less verbal guiding, except when I am in unfamiliar terrain. I notice this most dramatically when I ski a completely new resort. I have to ski a run at least once before I can relax and let myself open it up.

The one thing the mind's-eye cannot help with much is staying clear of other skiers. I have learned where there tends to be low traffic and where runs merge to create high conjestion areas and this helps a bit. I do rely on the guide 95% for obstacle avoidance. When I couldn't see at all, the guide could get away without announcing "Traffic." Now that I can see some skiers at the last second, it is even more important that the guide announce nearby traffic because I cannot relax if I am constantly picking up shapes and having to try, often unsuccessfully, to figure out if those shapes are shadows, signs or people. This makes me flash back about an experience when I tapped a motorcycle tire on a sidewalk with my cane and, thinking it was a person, said excuse me. My contextual thinking assumed that a soft object on a sidewalk would be a person.

The whole mind's eye component is magnified for a low vision person in a fast moving downhill skiing context because the time to conclude an object's nature is greater than the speed at which one is moving. A very important equation of which to be aware.

I wonder if a totally blind person has the opportunity to develop a mind's-eye more than most sighted folks. Since they can see and process their environment quickly, sighted people wouldn't have as strong a need to picture the environment ahead of time. For example, I can picture several airports I frequent as I have had to compose mental images in order to efficiently get around these airports over the years rather than having to wait for assistance. A sighted person wouldn't need to do this no more than needing to memorize ski runs.

Consider how my mental picture might work on one of my favorite advanced runs at Kirkwood, Sentinal Bowl. Normally, I would ski behind my guide but if there was nobody below us on the slope, I could ski Sentinal with my guide within shouting distance behind me until I came to an intersection, which I knew about by feel. I had a good idea of the width of the run and had no problem skiing very fast in a relaxed fashion when I had no vision.

With low vision, I would still only do this if my guide said nobody was on the slope and I'd stop at the intersection. If the sun was just right, slanting down the slope over any bumps and casting a shadow below them, this might help me in anticipating those bumps, whereas with no vision, I'd just turn regularly and turn on the bump when I encountered it. In both situations, having the guide tell me what the terrain was like and picturing the slope in my mind, plays the same role. I would not do this on an unfamiliar slope with or without vision until I had skied it at least once with the guide in front of me.

Dr. Gregory and Dr Sacks speak to this subject as well in their writings and in the BBC documentary about me. Dr. Gregory gives excellent examples on the role of knowledge and perception in the process of seeing. He talks about how much more there is to seeing than what is picked up by the eyeball. I suppose 20 years from now, there will be more data than Mike's anecdotes to explain these things and a whole field of new vision rehabilitation may evolve. For me, the skiing experience has been the most challenging and enjoyable to push and test the low vision envelope. I think the mind's eye will continue to play an important role in the process of perceiving one's environment in a multiple sensory fashion.

April 14, 2003

No Turning Back, April 14, 2003

I have talked a lot about how important the "mind's eye" is in me understanding what I see, especially at high speeds when skiing. What happens when there is no mind's eye and the sighted guide can't see either?

We had a frightening experience on the highest run in Kirkwood, Chair 10, The Wall. When we arrived at the top of the chair lift, there was literally zero visibility, smack in the middle of a snow cloud at 10,000 feet.

The normal path to the run I was familiar with was closed, probably for "snow safety" reasons. I knew the only other way off The Wall was over the edge of a cornice, something I was capable of doing as long as my guide picked a spot away from rocks or avalanche fractures.

We gingerly traversed the ridge along with a few other skiers in search of the edge. One guy told us where he thought it was best to ski, 30 feet to the right of some rocks he said. He dropped off the cornice and I couldn't hear him at all after that, leaving me just a tad bit intimidated. I supposed if he had had problems, we would have heard from him, minor consolation when we could not see at all what we were getting into.

Wyndham didn't hesitate long, dropping off into the cloud. The fleeting thought was running through my mind that I shouldn't have one of my boys taking this risk before I did. Shortly thereafter Wyndham reported on the radio that he was fine.

Others were gathering around us and freaking me out with their comments... "Hey man, the visibility sucks." "Dude, where the heck is the edge?"

Jennifer went for it next while I waited to see how she fared. After a long head first slide on her helmet, she quickly got it together and encouraged Carson to come ahead. After much trepidation, he finally went for it and took a tumble too. By this time, I had learned there was about a 6 foot drop to a ledge and then an almost vertical slope for another 30 feet before it eased up into your standard steep slope. Carson fell and started screaming like he had broken a leg. In fact, he was doing the splits in deep powder and eventually extracted himself. I didn't dare ski down to help him as I might have tumbled right over him.

I gave serious thought to working my way back along the ridge to the chair lift and riding it back down, something I had never done in 23 years of skiing. I didn't know how I would find the lift anyway since my guide was below me and I'd be on my own heading back to the chair.

Once I worked up my nerve, I pushed off the edge, landed on the ledge and made 3 flip-turns. I then took a roll, fortunately without losing my skis and came to a steep stop 50 feet below where I was 2 seconds before. As I pulled myself back together, I heard from Wyndham on the radio that he was at the bottom of the slope and ready to take another run. It struck me for the first time that my 9 year-old had passed me up in skiing ability. He was the only one of us who had made it down the run without a fall.

The 3 of us enjoyed the rest of the run having survived the anticipation and unknown launch off the top. We worked our way down a very deserted slope with untouched powder other than from snow boulders dislodged by our falls and the other tumbling crazy skiers and borders in those zero visibility conditions among the 10,000 foot mountain cornices.

I thought back to my first experience on The Wall with my race guide, Ron Salviolo, years before there was a chair lift and we had to hike to the top. I sure like having either my mind's eye view or a sighted guide; skiing with neither is truly "skiing blind." Like many other adventures in my life, sky diving, my eye surgeries and skiing The Wall, I really could not have turned back once I was poised on the edge and committed to the adventure.

June 3, 2003

Dublin

I had the pleasure of trying digital maps with the BrailleNote GPS for the first time in England and took the opportunity to pop over to Dublin for the weekend with my childhood friend Mark Pighin, also blind. Most of the weekend, we explored on our own fueled by our curiosity, the GPS and our thirst for friendly Irish people. Mark's cousins also hosted us for a home-cooked Irish meal and personal tour of the city.

Our marathon day of exploration started early Saturday morning when we were awakened at 5 AM to the shrieking of the fire alarm. After scrambling for my clothes and remembering where in the world I was, the alarm was finally shut off. By that time, we were wide awake and decided to hit the streets of Dublin.

As one Irishman told us, "If you can see the mountains it will probably rain soon. If you can't see the mountains, it will probably rain soon. We got lucky! It was beautiful out even at 6 AM Saturday morning. We recorded a GPS point at the front of the hotel so we could find our way back. I had points from a previous visit and we used these points to navigate to the heart of the city. We put in a good 4 miles by the time we stopped for breakfast. There were few people around to ask directions of so it was essential to have the GPS reference points. We then walked more, stopping at shops and cafes along the way and jumping on the city tour bus from time to time.

We were pleasantly surprised at the large number of audible signal lights around Dublin. These were the subtle clicking type I have mostly seen in Australia. They sure helped us find where the crossings were on curved intersections and in crossing complex traffic patterns.

Shopping is a challenge in an unfamiliar city or for that matter in a familiar one. We would poke our heads in an interesting sounding or smelling shop and ask what they had. They would invariably say "what are you looking for" and we would repeat our question, "what do you have." They would then repeat their question and around we'd go. I don't know of any easy way to browse without eyeballs.

I do know of a way to get information about street signs and business names. When you ask someone, "what street am I on?" They usually say, "Where do you want to go?" He or she would rather lead you to your destination than to provide the requested information. That is one of the reasons having the GPS location information is so valuable. The BrailleNote GPS may be wrong occasionally but it won't argue with you.

We took a short nap in the afternoon and then started all over again in the evening heading straight for the lively cobbled streets of Temple Bar. We had a lovely meal after first researching the many restaurant options. We'd ask the doorman or people on the street to read the menu to us. It was a tough choice but half the fun was the research.

Next we headed for the Brazen Head pub, which had a lot of Irish men and women standing around hoisting pints and listening to American style country music. The people are so incredibly friendly; we were constantly meeting new folks and hearing life stories in 10 minute snippets. We then went across the street to O'Shea's for some traditional Irish music. It is interesting to me that the clientele were young and old, stomping and singing together to traditional Irish tunes. I can't picture young Americans hanging out in a bar singing folk music. This pub was especially smoky but we put up with it for the sake of the atmosphere of comradery around singing and drinking. Twenty hours after we set out and a good 8 miles of walking, we arrived back at hour hotel having taken our first taxi of the day.

I feel so incredibly fortunate to be able to have the ability and where-with-all to explore Dublin or the city up the highway from home. Here's to the O&M instructors who taught me the cane and encouraged my curiosity to explore, the Seeing Eye who provided me 4 dogs, the friendly Irish people and the BrailleNote GPS for a wealth of location information. Cheers!

June 19, 2003

Streets of Barcelona

I have been to Barcelona a half dozen times before and was looking forward to exploring the city with GPS maps on the BrailleNote for the first time. I wasn't even sure the maps would work until I got outside the airport and sure enough, there we were on the map, at the Barcelona Airport. How about that?

As we rode from the Barcelona airport to the Gran Hotel Catalunya, my son was most impressed with the copious motorcycles. Once I went for my first walk, I "saw" what he was talking about. The motor scooters were lined up like bicycles on the sidewalks and nudged their way through the thick pedestrian traffic. I suppose with the high cost of petrol in Spain, motorcycles are an efficient way to get around.

A lot easier to find a parking place for too.

We spent a good part of our first day, exploring the city via a double-decker tour bus, open on the top. I had street names and some points of interest in my BrailleNote database and the tour guide filled in the blanks with an audio description including history of famous places. Sure is a lot of antiquity in this city. My boy's inssisted on going to the zoo with the world's only known albino gorilla. I wondered if he was visually impaired.

My favorite way to see a city is walking, eating and walking more. We quickly adjusted to the Spanish dining schedule finishing dessert at an outdoor café in the middle of Las Ramblas, at midnight, seriously past my kid's bedtime back home. There was so much activity; it was hard to think it was late with the temperature still in the '80s, very conducive to evening strolling.

Besides the scooters on the sidewalks, Barcelona has some other big-city mobility challenges. Most of the streets in this section of town are not at 90 degrees to each other. It is easy to think you are heading in one direction only to learn after a while that you have significantly curved. Many of the streets are very wide with inconsistent types of islands and placement of cross walks. Pedestrians cross streets whenever they want and aren't to be trusted as a means of knowing when the light is green (verde). In short, it is pretty chaotic on the streets of Barcelona and getting around independently as a blind person is not for the faint of heart.

I met up with a local blind guy (Pep Llop, mayor of La Palma) who has a dog guide from York Town Heights. His method of street-crossing is to increase his speed three-fold. "Once you are committed, best to get to the other side quickly."

I was intrigued to see how well the automatic route calculation would work with the latest Beta version of the GPS software. I left my family mid way down Las Ramblas and set our hotel as my destination by typing in its address, 142 Carrer De Balmes, Barcelona. The route consisted of 4 significant turns over the course of 30 waypoints. I had never walked, or driven for that matter, this route before. Off I went, following the BrailleNote directions like, "Waypoint 15, Provenca and Ramblas , left 129 meters."

Because of the offset street crossings, I made a couple wrong turns but was quickly informed by the GPS that my target waypoint was "behind and to the left." After a couple of these missed turns and absolutely no sighted assistance, I heard the comforting announcement on the BrailleNote GPS, "Arrived at destination." I was 10 meters from the front door of the hotel. It is nice to be 49 years old and still feeling like a kid, "I did it myself", not to mention saving a few Euros on a taxi ride and the frustration of bad directions from well-meaning sighted pedestrians.

A footnote: As I approached the hotel, I picked my way through some street construction. I saw a florescent green object in my path and tapped it with my cane. It wasn't hard like a sign so I tapped it a bit harder as I still couldn't figure out visually what it was. I was startled as a burst of Spanish profanity came from the workman bent over digging out a hole in the sidewalk. He didn't take too kindly to me poking him in the behind with my cane. A little bit of vision can be dangerous sometimes.

June 22, 2003

The great Contrasts on the Island of Mallorca

Crashing waves have always inspired me with their constancy and power. It is rare that I am in one place long enough to contemplate that power. A handful of places immediately come to mind: The West African shores of Ghana where I spent a couple months in a jungle village near the beach. Languishing in A cottage perched on the jagged cliffs of Northern California in the seaside town of Elk, formerly a large lumber city called Greenwood. The Island of Wahiki 20 minutes by ferry from Auckland New Zealand. Sleeping on the beach at Santa Cruz, California. A very windy night on the island of Molokai, Hawaii. Two nights in an open-air bungalow on Saint Johns in the US Virgin Islands. And Now, Mallorca with the waves pounding and these other similar experiences flowing back into my semi consciousness.

The waves are breaking near shore so I can clearly see the white foam against the dark green surf, green because it is waste deep for hundreds of yards.

I am under a thatched umbrella casting a protective dark shadow around me with the bright white sun-glaring sand literally an arm's reach away.

There is a white kite with a small motor and propeller that flies by every so often. I don't actually see any shape but the white image seems so disembodied floating past 30 feet or so off the ground.

The smaller white specs are either birds or large bugs, I never know which. It is either a bird far away or a bug up close. With my poor depth perception, I can't tell the difference.

Besides all this natural beauty, there are quite a number of sun bathers of every sort imaginable. I have been to beaches before where shirts were optional and I wondered how nonchalant I would be if I could see. I now have somewhat of an opportunity to know. It is not how I expected.

Most of the topless bathers are evenly tanned, meaning that there is very little contrast for me to see with my low vision and poor acuity for details. I sadly would have to stare far too long and close at a chest before I would know if it was a male or a female chest. Bright colored bikini tops however, make for a wonderful contrast, letting my imagination and tactile experience fill in the details.

I should say that it is not only the babes who are going topless on this beach. The contrast in people runs the gambit, fat, small, old, and young. The predominate language is German with a smattering of Spanish, English and Catalan, the latter spoken by the hotel staff and a few tourists from the mainland. Clothing for all on the beach is optional. When they do have it on, it is often bright, which pleases me immensely whatever their size or shape.

I am probably quite the contrasting figure on the beach with my Giants baseball hat, white cane and computer on my lap. I wonder what people think of my furtive glances. Jennifer admonishes me if I seem to be looking too long.

The truth is that I am looking at everybody, enjoying all aspects of this island paradise. It is a multiple sensory, multiple cultural orgy: color for the eyes, sun oil mixed with ocean scents for the nose, German/English/Spanish/Catalan and the pineapple seller's song for the ears the taste of cerveza, and embracing it all, the warm touch of the sea-breeze and island sunshine.

June 23, 2003

Is it ever too late to try a new sport?

I have tried most sports that weren't 100% visual. Some required serious modification in order to attempt or compete in. Wrestling, swimming and tandem cycling are common sports for blind people. Skiing, wind surfing, sky diving, basketball, football and baseball necessitate a guide, radio or modifications to the court or rules to manage if one is blind but they are all doable without sight.

There is another list of sports pretty much off limits, ping pong, tennis, squash, hand ball and the like. These are 99.9% visual sports. The ball does bounce off the court or racket but hitting it in the air if you can't see is nearly impossible. You would need at least a little vision to actually play.

As a totally blind child, I used to play some ping pong. Because the table is fairly small, it was possible to judge from the bounce-sounds where the ball might be in the air. I could play only on the table in our house and not elsewhere because the sounds were very specific to the acoustics of that particular room and table.

I have always thought playing tennis would be fun because it requires a lot of running around, good for conditioning, and the courts near our house in Davis are almost always vacant. Even after regaining some vision, it didn't occur to me to try tennis until my boys got their first rackets and asked me to play. I borrowed my wife's racket and off we went to give it a go. After all, none of us had played before.

What serves me well when trying a new sport is an almost manic passion for chasing a ball. When growing up, I'd drag the neighbor kids out to play kickball in 110 degree temperatures. I could never get enough of kicking, throwing or chasing a ball. The same turned out to be true for tennis.

Wyndham took one side of the court and Carson and I took the other. There was a pretty good contrast between the bright green ball and the afternoon sun although the dark green court made it hard when the ball was low. Nonetheless, I could get my racket on the ball 1 out of6 times or so. It even went back over the net occasionally. My boys weren't much better so we were pretty much on par, to mix metaphors.

There was a small auditory component to playing tennis that was helpful to me. I could tell from the sound of the serve to me approximately where to start looking for the ball and how fast it would be coming. When the nearby traffic would drown out this sound, I'd more often miss the ball.

Wyndham commented, "There must be some place that teaches blind people to play tennis." I had to laugh, especially at his constant encouragement. "Great job Dad, you just missed it." I was quite happy to be learning with my two boys and wasn't worried about becoming proficient at tennis.

Wyndham's idea made me think of modifying the game a bit to suit all of us rookies. We created a modified tennis game called Staying Alive. You had 5 bounces on your side of the net to hit the ball before the other person scored a point. You could hit the ball multiple times as long as it didn't go dead. This made us all run our tails off and kept us playing long past the peak of the mid day 98 degree sun.

Passers-by had to wonder what was happening as we bellowed an off-tune version of the BGs hit, Staying Alive and ran around the court huffing and laughing. We finally took a break. As I unfolded my cane and walked from the courts, a lady said, "Looks like you guys are having fun." We were indeed.

The next day was Father's Day and guess what the boys bought me? My own tennis racket. We all went out after dark to see what it was like playing under the lights. Well, it was certainly cooler but my ability to see the ball was even less if that is possible. Still, the adventure of playing tennis at night and trying out my new racket made this an adventure too. There are not many sports as fun as tennis that I couldn't find a way to play. Having my limited vision made it a sport I could play with my kids. We'll have to see if I can find some really uncoordinated adults to take on in order to even the odds.

I was thinking as I chased that tennis ball, how important my participation in sports was for the purpose of being able to play with my boys and to teach them the sport. Winning gold medals seemed important when I was competing at age 29, however, teaching the boys to ski when they were 2 years-old and skiing now as a family is worth more than all the gold combined.

Having only played a limited amount of baseball as a child, I lament the fact that I am not as good at teaching that sport. I was able to teach soccer their first couple seasons and was even the team coach one year. I look forward to when they have an interest in wrestling to teach them the sport I spent 8 years competing in. I wonder if I had been able to see as a child what sport I might have chosen. I think I have had a pretty good variety. It is fun to experience a new sport as an adult. I don't think I'll be trying Squash or Hand Ball soon.

I am intrigued by the volley ball game going on next to me here on the beach in Mallorca. I never thought of trying that sport before. Maybe we'll give that a go later. Never too late to try a new sport.

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