Different ways to see: My evolving eyes
I had several eye surgeries to prevent detached retinas in my teens. By 21 I had lost more than half of my vision. I was young, ignorant, happy and wanting to experience everything in life. I chose to ignore the doctors, and didn’t want to believe that my eyes had more problems than retinas that wanted to fall loose.
My type of progressive blindness is interesting because I have blind spots always, but the vision I do have changes drastically depending on the lighting situation, or the activity I’m engaged in. The condition is called Retinitis Pigmentosa. I also have exceptionally thin retinas that just won’t stay attached to my eyeballs.
I experience blind spots (with slow but progressive loss of peripheral vision into an eventual pinhole of view. Doctors say that eventually I will only see light and shadows). I experience regular but random and brief flashes of light, occasional strobing vision with distorted and often changing vision acuity, in addition to a regular cloud of floaters.
BUT I can still see so much, and fairly well… under the right conditions.
The vision loss is progressive, and rarely consistent or stable from day to day. Its affects were small early in life, but have become more noticeable and with larger impact each year.
I realized early on, I needed to edit my life to not need to drive, even if I stubbornly kept my license.
(spoiler alert: happy ending to this story.) I did give up driving eventually.
I can count the times I drove in the last driving years, on just over my fingers and toes. I knew each time behind the wheel was irresponsible of me, I had things to do and no excuse.
I thank God often, my driving never resulted in injuries to myself or anyone else. Hindsight shows: 10% of my last small driving adventures: resulted with little fender benders (two in two years = I stopped driving).
As my regular vision loss has been difficult for me to understand (and accept), it has been doubly difficult for my family and friends to keep pace with. People get in their mind where my level of vision is. Until slowly, or perhaps suddenly, the world as I see it… changes.
I use a white cane for mobility these days, but because I still have some vision, I have a hard time feeling comfortable if others think I am fully blind.
The white cane keeps me safe and lets other people know I am visually impaired. Also (most importantly), the white cane gives me confidence in most ways mobility requires.
However, others see the white cane, and are at times extra helpful or kind, only to be confused when they notice I am not fully blind…
There is a moment for education there, but not every almost blind person has the head space or words or time, or even obligation to be a teacher (while trying to get from A to B safely). For this reason, I have made the website www.almostblind.org.
I made up shirts and hats that say, “Almost Blind”. I gave some to other almost blind friends. One day, when I get the gumption, I will make the online “shop” functional and begin to market the Almost Blind gear, in addition to doing educational outreach to the community about how more than 90 percent of legally blind people do retain some vison. So look for us to smile, when we luckily do see you.
Living large: Small town style
For college, I moved to a small town with only one stop light and a maximum speed limit of thirty-five miles per hour. I made the move mostly so I could justify driving. For me, having the ability to drive was important, although rare, it was a privilege I wanted to keep (even if only for peace of mind in my timeline of vision loss). I moved into a dorm, on a campus of 3500 students. I got distracted from full-time school by time and a half work. Ultimately the couple handful of credits that I did earn are from the 2000’s.
Early in this time, when driving became more difficult, I carpooled. The other members of my carpool would usually offer to drive me in my car when it was my turn behind the wheel, which later became strict policy.
While living in that small town, I spent several years working for their weekly newspaper, and also enjoyed hosting a weekly radio show (putting college on the back, back burner). It was great because I was able to do most of my interviews over the phone. I also became a very fast typist during that time. My bank was next door to the newspaper, and I could walk to any number of places to eat for lunch. If I needed a face to face meeting, I would invite people to meet with me at the office, and they often did. I would schedule a ride with an intern for the few times that I needed to report in person, such as covering an event in real time.
Every so often, I would be required to drive to cover breaking news. I would have the hardest time finding addresses, or following simple directions before GPS and Google Maps. I would often drive right by the location I was looking for, and turn around and pass it again. I would have to park my car and walk down the street, looking for street signs or addresses or business marquees. At the end of my days in rural Utah, I met a young lady from Japan, she was an international student at the college. Now that is story for another journal entry.
Two years in Tokyo
I later moved to Tokyo, taught ESL and rode the trains. In hindsight, it is incredible that I was walking through those big crowds a decade before I got any white cane or mobility training. I stood very still and looked all around, twice. Then I would pick a point to walk to, followed by walking there only to pick another point to walk to and so on, leap frog style. The school I worked for was an easy stroll from my apartment, and all the international faculty lived close by too; we became a close-knit group. Important to note, I was nestled in the far edge of Tokyo in the closest thing they have to what I would know as a suburb.
One great thing about Tokyo is that you can easily get anywhere on public transit. Furthermore, it is very common to have commercial areas at the bottom of apartment buildings. This made a very smooth trip for shopping or going out to dinner. I could get a freshly made bowl of ramen by simply stepping outside and descending a flight of stairs. I did avoid the rush hour of foot traffic though.
What a great place to find yourself needing a little understanding as you try to find your way. The Japanese are a kind, polite and helpful people, especially to respectful foreigners.
I was SO LUCKY to be living on that island during that particular stage of my life.
I could navigate the smaller neighborhood train stations myself, but needed to have someone with me for any of the crowded bigger stations. Btw, some of the original subway tunnels in Tokyo (had what seemed like) 6 feet of space from floor to ceiling, I am exactly 6.2 feet tall, and had to duck to feel like I could walk forward.
Another BTW, I wrote an article for the English language magazine for expats, Japazine – “Living Large in Little Tokyo”. It included a list of 10 things I was too big for, sitting down on some busses was on the list. Simply not possible, too little leg room between seats. So in this regard, size was sometimes more of an obstacle than lack of sight.
Now please keep in mind, my time in Tokyo was in the early 2000s and before smart phones and apps to help you get from A to B using public transit. We had maps made of paper. A tourist on any long trip would need multiple maps to find their way. I was often confused and lost in foreign cities whose names are a struggle to pronounce (usually when a friend came to visit and trusted me to know how to get around the train stations). I would use my limited vision to keep an eye on the crowds of people. Mobility required lots of focus just trying to keep an idea of what is happening around me, while looking for direction giving signage.
There are lanes of moving people in Japanese train stations, just like cars in traffic. You could not stop moving or pause in place. People would keep moving and a person could get knocked down, but probably not a man my size (smiley face). This type of mobility was challenging even for people who can see perfectly. Needless to say, it was common for me to pass underneath big signs with directions in Japanese Characters AND English, that I should have been following. The only thing was, I never saw the signs. I was always busy scanning for people and wet floor signs, needing to be focused on physical safety during mobility.
For the sake of understanding: Imagine trying to navigate a crowded train station, while blind in one eye, and looking through a paper towel tube from the other.
Now walk forward, in an unknown place. Go towards an unknown destination, that looks like everything else around you, in a very foreign Tokyo train station. You would almost have a clear picture of my experience if you could then muster the ability to imagine literally thousands of people quickly weaving in every direction. Finally, sprinkle the spoken chatter of a crowd, while only understanding one word in 100. Attempt to read the signs, hopefully in English (if you can find them) through your tunnel vision. With all do reverence and lightness that can be offered, that is a bit of my experience.
Well, really… I did have fun most times. Walking around, when I found myself on my own, I often felt like I was on a special OPS mission, carefully picking my path through unexplored terrain.
One tip to visually impaired travelers: I made a habit of having traveling companions, and planned my outings and adventures around the times others were available. I was often able to trade English language conversation practice for a native tour guide and extra set of eyes in that wonderful land. I enjoyed my time in Tokyo, and visited much of the countryside.
2008: Recession, I can relate
It was 2008 when I looked down from the airplane window and saw the California coast for the first time in two years. I told the passenger next to me that I was excited to be coming home. He asked me what the gas prices were when I left. I told him, “just over $2”. He smiled, and informed me things have changed. Getting off the plane I found that man was right about more than one thing. Noticeable within a minute’s journey from the airport, gas prices were peaked at $4.50 (remember that was happening?). Good thing I didn’t do much driving.
My old newspaper hired me back immediately, and nearly as quickly my first paycheck bounced. Our account receivables were tens of thousands of dollars behind in collections. Our publisher was kind hearted and let the small family owned businesses continue to advertise though they were not able to pay (that’s the way it’s done in Sanpete County, Utah). However, eventually and finally, out of necessity our newsroom became a collections phone-shop for nearly a month. We got the paper afloat again, and I realized that the world was changing. Newspapers, and the field of journalism (Radio, TV, online news, Etc.) was going in a direction I would not like to follow.
I took the moment to asses my situation, needs, resources and abilities.
I moved to Florida, and started a small freelance media production company, with the University of Florida music department as my primary client. Which was a fancy way of saying that I was self-employed, with the occasional intern or two to assist me.
It was a perfect fit, with the skills I had developed while working for the newspaper. I had a large group of musician friends (I became associated with initially through journalism) who needed web sites, photo-shoots and video of live music events. I also accepted freelance writing jobs.
For driving, and other things I needed extra eyes for, I hired college interns.
Over time, however, the glare from the computer started to become a serious issue for me (specifically while trying to find creativity) when working on websites or other projects for clients. I started getting headaches from the eye strain that comes from carefully editing video and reading text from a white screen.
Again, I adjusted and refocused what my business did.
I switched from producing media to more marketing consulting and event planning.
Although this helped, I often found myself tripping and stumbling while on the job at an event. Or not being able to complete some tasks that you would need your own car, a trunk to stow and tote with, and the ability to make multiple stops and go as you please (at this point I only drove during daylight, and in familiar areas and I really had no business driving even then). Interns are not always available, and in any business, things that need a driver and dedicated car (not a Taxi) come up.
If you are involved in events (or any business) = B ready for anything anytime.
The above was - A Tip- To keep the phone ringing, from clients who have heard from their friends: you are the one to call.
At this point, I put off doing computer tasks, not wanting to spend a few hours staring at the screen. I was tired of straining to find the mouse cursor and scanning from left to right or up and down. Clients would sometimes get impatient when sitting next to me while I tried to pilot the computer during presentations. I imagined them cringing every few minutes as I lost the mouse curser or could not see buttons at the corners of the screen. At the age 30, I knew it was again time for a change.
Beach bum bliss: Mexico Mania
A visit home to visit my Grammy in Phoenix would change the course of my life.
My family was getting after me about being medically uninsured while living with a serious eye condition. I hadn’t seen an eye doctor in years. Also, they were concerned for me living so far from family and home.
Suddenly, I had the opportunity to change my career path and do something completely different. I felt I needed to explore options and find something that was more doable with my vision situation.
A family friend had a child who was having troubles in high school. He had been attending a boarding school, and that was not working for him. His family asked me to be a mentor, and tutor him in school.
When he turned 16 his family decided to send us to stay in their beach house in Rocky Point Mexico (about an hour over the Arizona boarder) and we stayed there home based, with regular visits back to Phoenix, for a couple of years.
I fell asleep every night with the sound of the waves.
Each morning I woke to clean crisp ocean air.
I can sum up the experience, easily: it was a slice of paradise and I enjoyed a daily piece for two years.
I was grateful to have a full-time driver living with me. My student had gotten his learning permit and wanted to practice whenever possible.
It was an interesting first few months (as you know, if you have taught driving) as he refined his skills behind the wheel. I figured he was a better driver than me, an almost blind guy.
We had a great time driving and exploring the streets of that little fishing town, Puerto Penasco as its properly named. It is a lot of fun having someone drive me around tourist areas. I am able to use my little bit of vision and scan around freely (that way I can take in a big picture). I especially like sitting in the passenger seat, because it is the only time that I am able to be mobile and at ease (especially when with a good driver).
We spent the days walking the beach, swimming in the ocean, taking out little boats and kayaks, and eating absolutely great food in just about every restaurant in town. We also found time for studying and getting school assignments completed. We lived about fifteen miles from the city, and equally away from any traffic or busy roads. We did have a little store and several restaurants tucked away down dirt roads near us. Some days it would rain, the roads would turn to mud, and we would be stuck out on the beach with no way to get to the paved road that leads into town. Those were great days for my eyes, and I would take the dog out and we would find shells in the tide pools outside our back door.
Cooking was a joy as we looked over the breaking waves on the shore from the kitchen. We took every opportunity to host dinners at our house. Both of our families, the student’s and mine, would visit often (their family was gracious enough to host mine) and those are good memories.
My vision was not much of an issue for those years. I was not needing to drive, or navigate an office, or crowded areas at all. I had no required work that needed the endurance or consistent acuity of my eyes. I simply tutored my student, and motivated him to complete his work the best I could. We had many activities and friends to spend time with. I was free to adjust to, or ignore, the reality of the way I see things. Really it was a miracle to have had that blessing at that period of real and significant vision loss (as my eye condition accelerates in most people, myself included, during their 30’s).
I was painfully reminded one night, of how much my eyes can limit my regular activities. I once visited a friend in the late afternoon, who lived several blocks back and away from the beach. It was nearly fully dark by the time I wanted to go back home. It was during the quiet season, which meant that most houses were empty with no lights on, and it was also a moonless sky. I remember thinking the flashlight on my phone would be enough to help me stay on the path to my own house, but it wasn’t. Also, it was a bad day for cellphone reception in rural Mexico, so I couldn’t call a friend to come out of one of the nearby houses and help.
I was lost pretty quickly, my eyes not able to adjust to the lighting, and with no streetlights or porch lights as point of reference, I was stumbling in the brush and lost.
It was a windy night, and It had gotten cold. I did get worried when I realized that I had lost all perspective of where I was and where I needed to go. There were a few porch lights in the distance, and I knew where the ocean was. However, I had wandered from the row of houses I was familiar with. I couldn’t decide if I should head to the east or west of my current location. I must have gone up and down the same stretch of beach a few times before trying to get back onto the path off the beach leading to the house, only to realize I picked the wrong trail again.
I had gotten off the beaten path and was lost in beach vegetation and small bushes and shrubberies. This was a problem, because there are rattle snakes, black widows and other wild things that live in the bushes off the path. I froze with panic for several minutes when my every turn toppled me over rocks, and into small trees. Twice even, I tripped over short drop offs onto my face and scuffing my hands. I could have tried yelling for help, in fact I did briefly, but the sound of the ocean and wind was much louder than I could compete with.
After a long while, some of my friends, who were waiting for me at home with dinner, got worried. They began looking with a large light, which I did see moving back and forth from a distance. The friends said, although it was dark, they could see clearly enough to find and stay on the walking path, and even pick out landmarks… without the flashlight on.
For me that night, all was pitch black, unless directly under a light (and the light source was blindingly bright).
I realized that my days of walking at night were behind me.
Also, that is when I made the decision to finally go back to the vision specialists, surrender my driver’s license and get some white cane mobility training. My days of living as a beach bum were officially, nearly, almost over. It was time for the era of new understanding. Now to learn how to live with vision loss, and to invest myself in learning knowledge other people have already studied and are passing on.
Journal entry 6:
Recently completed blind skills training. I have gotten active in the blind community and recently became a member of the board for the VRATE Tech Expo for the Blind. We do work to help bring the latest technology and job readiness skills to blind community. www.vrateaz.com