Thursday, March 27, 2014

Blind Independence- Part 2

          The 1st training day quickly arrived.  She picked me up and we headed to a neighborhood close to her work and she explained what the day's lesson would be.  She even showed me where we were going to walk so I could study the ‘course’.  I’m a very visual person.  I have a good memory.  I’m an Architect.  I’m have a good sense of direction.  All of these things should be assets for this training but not being able to see could reduce all of those strengths.  The 1st day ended up being fine.  Penny made sure I would not be killed by cars.  I walked like a man who was very intoxicated weaving my way down the sidewalk.  Do you know how hard it is to walk straight when you can’t see?  She took me to a low traffic intersection and had me try and figure out if it had a light and how many ways I could travel.  During my session some Landscapers were near by using leaf blowers and I learned the valuable lesson of Sound Masking.  The loudest sound will always drown out all other sounds.  That can be a serious problem for blind people navigating around.  The leaf blowers in this case basically made it impossible to really tell how much traffic was near me and which direction they were going.  We ended the day with Penny explaining to me the basics of crossing an intersection.  It was overwhelming.  So much information thrown at me.  How would I remember all this?  We didn’t cross an intersection and I was happy about that. 

Penny giving me the low down.

      The sessions continued and Penny continued to challenge me.  I was crossing intersections in neighborhoods and she was taking me to areas I didn’t know very well.  Cars would be blocking the sidewalks.  Sidewalks would suddenly end and then 2 houses down, start up again.  I would hit the bumper of cars with my cane as they were pulling out of driveways.  I would hit people with my cane and not always know it.  People would jump out of the way to avoid me and I wouldn't know that either.  Penny and I would chuckle when some people treated me like I had some contagious disease.  My hearing was proving to be a great asset to my training.  I could hear and place where objects were pretty well.  I learned that hearing depth perception was not as accurate as visual depth perception.  Simply not as reliable.  I could hear when walls or overhead objects were around me (called sound shadows).  I was getting better at detecting changes in surfaces (textures and elevation changes) with my cane but I was a long ways away from not getting myself killed by a car.  Cars were loud.  Penny would assure me the cars were a safe distance from me while waiting to cross when I felt like they were going to run me over.  Small trucks with no mufflers sounded like logging trucks.  Trying to decipher the sounds I was hearing sometimes was crazy making.  I would cross streets crooked.  I would have trouble lining myself up straight at crosswalks.  Heck, I would even have trouble finding the crosswalk from where the crossing signal button was located.  Of course every intersection was different.  All of these tasks are simple if you are sighted but not having standardization at crosswalks always made it interesting.  Penny was patient with me.  She praised me when I did well and gave me helpful insights on how to correct my errors.  I hated making mistakes.  I don’t like not being good at something.  Especially as I grow older.  I knew I was improving but still had so much to learn before I could navigate in an urban environment by myself. 

It ain't easy walking straight sometimes. : )

These sessions tended to run me through the whole gamut of emotions.  I was always excited for our next session but I was equally as nervous.  It was hard for me to really relax during the sessions, which I know didn’t help me.  I was intensely focused on the task at hand.  I enjoyed the successes like crossing a 4 lane road straight as an arrow but my jaw seemed to be clinched the whole time.  My body was tense.  My heart raced.  My blood pumped so hard i could feel my heart beat push against my skin.  My hands sweat.  It was draining to feel all these emotions over the 2 hour sessions.  I realized why I was excited to do the sessions.  I was getting what I wanted.  I was getting independence.  Even if you take away all of my vision, I was starting to see (ha!) that I could still be independent.  That was a euphoric feeling.  I could feel the fear I carried for years being lifted from me.  The fear that my life would suck and be terrible if I was totally blind.   I also got reassurance that my life would be ok if I was totally blind while I was doing the training.  I realized I was still creating memories that were distinct and enjoyable without vision.  I wasn’t creating the same visual memory I was used too but I was making up what things looked like and I had more emphasis on sounds, textures and smells.  Penny would always take me back through the area she trained me on and I was blown away at what I thought things looked like in my head versus what I saw afterwards.  I couldn’t say my experience of these places were worse without vision.  They were different.  That was very soothing to have this realization.   

Here is an example of crossing the street crooked. 
Even the Bus had to yield for me.

Another mishap.  I actually walked off the sidewalk and now I’m
correcting it.  Penny did a great job of letting me figure stuff out but kept me safe.

You cross a street and then there is a parking lot directly to your left.  Not walking straight led me into the parking lot and to this wall.  Better to stray left when traffic is to my right.  Once I hit the wall with my cane, I corrected my error and got back on course!

I still have more to learn before I can be trusted to get around by myself completely blind but I’ve come a long way.  Our last session involved Penny picking me up and me putting on my blind glasses right away.  She drove me somewhere and I had to figure out where we were.  I guessed correctly, but Penny would not verify if I was correct or not.  It was the toughest, biggest and busiest intersection I had been too.  This intersection is considered the congested intersection in our county and one that is close to my work.  I jump off the bus at this location all the time in the winter.  After Penny didn't tell me where we were, I never imagined I was at this particular intersection.  In a way I think that was good.  I had no preconceived notion of what this spot.  I treated this area like I had never been there because that is what I really thought.  It was crazy loud.  At times it felt like I was standing in the 1st row at at the Daytona 500.  It was crazy scary.  I got to a point where I couldn’t line myself up correctly to cross the street.  I felt helpless.  I was pissed.  I through out a couple of F-bombs.  That hadn't happened before with our training.  I wanted to break my cane into tiny pieces.  I wanted to yell at the loud pick-up trucks.  I wanted to chew out the City Planner who designed this nasty intersection.  They obviously didn't spend one second thinking about a visually impaired person crossing the street.  The cross walk signal button was so far away from the actual cross walk that I could barely hear it signal it was ok to cross (the traffic noise didn't help).  Penny just listened and suggested we not try and cross the street today, but I would not leave without trying.  With help from her to line up (she gave me some hints on what information I was misinterpreting) correctly I crossed the 1st 4 lane intersection like I was tied to a taut rope.  Yes! Penny even gave me a fist bump!  Damn, that felt good.  Adrenaline was effortlessly coursing through my body at this point.  I was jacked up.  By no means was I relaxed or confident.  1 intersection down, 3 to go!  I then drifted a bit on the next 2 crossings but finished with another straight crossing.  It was so nerve racking but I did it and I soaked in the accomplishment.  I walked the 300 yards back to the car with more confidence than when I started the session.  I have more sessions like this to come and Penny is constantly trying to challenge me.  Having confidence that my cane will keep me safe in my everyday life has been wonderful.  I walked home in the dark from a friend's house recently and I can’t remember feeling that confident in the dark.  As you now know, I have never had good night vision.  I have stumbled in the dark.  Fallen in the dark.  Cracked my shins.  Cut myself on objects.  Walked into huge puddles.  Walked into things and cracked my head open.  I have often thought safety glasses and a helmet would be smart to wear when getting around.  How attractive is that? If I use my cane I can avoid all of that (Well, everything except overhead objects like unpruned bushes sticking out over sidewalks).  What a wonderful gift.  

‘Shorelining’ means I used the ‘edge’ of the sidewalk to guide me or find an entrance or new sidewalk to walk down.  It also keeps me away from traffic.

If you know me, I try my best to go towards the things that scare me.  It’s hard as hell to do but each time I do it I get the reinforcement that it’s never as scary as I made it out to be.  I truly believe that going to the scary places inside and outside of us allows us to live a more relaxed happy life.  The line in the song 'Don't' that I wrote says, “I won’t be held hostage by myself from what I wanna do”.  I keep trying to live those words. It's a process.  It can be a grind.  It can be hard.  It can also be wonderful and amazing and fulfilling.  There ain't no finish line.  I just keep getting up when knocked down and appreciate all the greatness that has come my way. 
A ‘straight’ crossing.  : )

Tuesday, March 25, 2014

Blind Independence-Part 1

I’ve been legally blind since March 10, 2005.  I was 35.  My driving career came to an end.  I lived 12 miles from work with no bus line and 8 miles from downtown Olympia.  My life went through many changes in order to still receive a pay check and to also be a fully engaged single parent, but that’s a story for another time. 
I started using a cane more regularly after that day.  I could have used a cane when I was 16.  There was NO way I would have done that.  Even in my late 20’s a cane would have been helpful in certain situations but I just couldn’t see myself climbing out of a truck and popping out my cane before I entered a bar.  Instead I chose to deal with the stress of knocking over someone’s beer, stepping on their feet or not seeing them reaching out for a handshake.  It obviously created situations where people thought I was a jerk for ignoring them or drunk for bumping into them. Trying to fool people about my eye condition was an awful way to live but one I chose until I stopped driving.  Even to this day when many people find out I'm legally blind they don't believe me.  It's not always obvious when you first meet me but get me in the right situation and you can easily tell I am visually impaired. 
The cane I used for years after 2005 was called an ID cane or an Identification cane.  It was short (42”) and basically let people know to get out of my way.  It worked very well.   It was like parting the Red Sea in crowded areas.  Using the cane was helpful, but it provided no information of the environment around me.  As years went on I realized using the cane as tool would be very helpful as I lost more vision. 
What is ‘my vision’?  I was born with Retinitis Pigmentosa.  My brother Glenn and I both got it.  It’s a recessive gene that can easily skip 15 generations because each parent has to be a carrier of the recessive gene AND it has to express itself.  It would be the same as getting brown or blue eyes from your parents.  So, what is RP?  It’s a degenerative disease of the Retina.  I lost about 60 million of my 120 million rods when I was about 3 years old (night vision).  I have never had good night vision.  I always complained about not being able to see at night but we weren't officially diagnosed until we moved to Gorham, NH in 1983 (I was 13, Glenn 10). As time goes on my retina’s photoreceptor cells die slowly.  Other mammals regenerate photoreceptor cells but humans don't.  If I were to live long enough and no medical options become available, I could be totally blind by 70ish.  Basically, I have tunnel vision.  I have excellent central vision (color and focus).  I can’t play team sports anymore.  Not safe for me or others.  You definitely don’t want me driving a car.  I still ride my bike but I am cautious about where I ride.  My ears work great, but when it’s a noisy environment I feel really blind.  I mean really really blind.  It’s crazy how big my blind spots seem when my hearing is diminished.   People ask me all the time,”How is your vision? Is it getting worse?”.  I never know how to answer those questions.  I’ve had it my whole life.  Changes are slow.  My eyes are supposed to slowly die but I’m doing everything I can to not let that happen.  How do I acknowledge and accept my eye disease but NOT give up on keeping every photoreceptor cell I have? If you want a fighting chance to succeed, you gotta believe.  Life happens but it's up to us on how we define it.  I try to look for all the positives in life, even when at first glance it seems terrible.  I'm not saying you should sugar coat the bad or hard parts of life, but maybe there is something really awesome in the midst of adversity.  Are my eyes worse than 20 years ago?  Absolutely.  I played club level college Lacrosse 20 years ago.  There is no way I could do that now.  Do I notice a big difference from 5 years ago?  Not really. 
Below are the results from my 04/04/2012 Visual Field Test.  I hate this test.  I dread this test.  I avoid this test.  I feel like I fail this test every time I take it.  Black is Black.  Nada.  Nothing.  Dead.   The red and purple areas show I have ‘islands’ on the sides of my vision which are of course helpful. It's hard to see but the central vision shows green and yellows, which are great!  What is so bizarre about my lack of vision is that I don't see black when i look out into the world.  My brain fills in all the dead spots.  In a way that is cool but it can also be very dangerous.  If you have full functioning retinas, you would have NO black except for a tiny blind spot where your optic nerve enters your retina.

       I have always been an independent person.  In most cases, it has always felt easier to get through life that way.  I've also really always known what I wanted to do in life.  It wasn't until I became legally blind that I had to say the words,"I don't know".  I don't know how I'm going to get to work.  I don't know how I'm going to get my girls somewhere.  I don't know how I'm going to go grocery shopping.  That was terrifying and humbling to acknowledge.  I was done hiding my visual impairment.  I was ready to work on accepting my limitations and start looking for creative solutions to continue to be active in this world.  So yes, I greatly want independence but by no means am I doing any of this on my own.  I want to thank my wife Kiirsten, my family and my friends.  You have all been so wonderful over the last 9 years.  You have been supportive, accepting, helpful, understanding and loving. I know I couldn’t have the life I have without YOU.  I feel so blessed to have such incredible people in my life and I really hope that I show up in your life the same way.  I even want to thank the strangers on the street that offer help to me.  Asking me if I need any help crossing a street, finding a building or just telling me its ok to cross the street.  You would be amazed at some of the comments I get by people.  Hurtful, ignorant and sometimes angry comments.   I have actually been yelled at by someone (several times) because I'm supposedly 'faking' it.  When those events do happen I always need to remind myself that the caring and helpful people greatly out number the knuckleheads of the world.  
I contacted the Washington State Services for the Blind in the summer of 2011 because I learned there was a chance I would lose my job.  I had lost my job in 2008 and was lucky to score a job rather quickly after but I knew the economy was not doing well and I wanted to have as many options available if I was laid off.  Trying to find a job in America and not driving don’t work well together.  How far I can work from my home is based on public transit, how far I will ride my bike to work, or how far I could walk.  I ended up retaining my job (yes!) and the nothing came from my initial meeting with the State. 
Now it’s 2013 and I wanted to revisit mobility training through the state.  I found out that my file had been lost after my case worker had retired so I had to start the whole process over again.  I was not happy about re-doing the initial start up process again but everyone was very apologetic and very helpful to speed the process along.  I quickly moved through the paper work phase and was told to set up an appointment with the Orientation and Mobility Specialist. 
Along came Penny.  Penny Armstrong that is.  She showed up at my house to evaluate how I was getting along in the world as a person who was visually impaired.  She seemed very thoughtful and pleasant to be around.  She seemed straightforward and knowledgeable as a teacher.  I enjoy all of those qualities in a person.  No B.S.  Just get right to it.  Honest, deliberate yet compassionate.  Maybe that comes from my East Coast upbringing.  I was also impressed that she taught mobility training in Alaska.  I could only imagine what it would be like to get around blind in 10 ft of snow.  Where the street signs were as high as your ankle and the sidewalks weren’t plowed.  She asked me lots of questions that did not apply to my current life (need for vision devices for computers, labeling for the pantry and the clothes drawers, etc).  Her assessment lead her to the realization that mobility training would be best for me.  Before she left that day, she asked to see my cane and how I used it. I really didn’t have skills.  I had read a little about using a cane but I knew I wasn’t using it properly.  Penny quickly saw that I had too short of a cane and gave me a new one to practice with during our upcoming sessions.  She took some time and showed me some tips on how to use it differently and more effectively. 
The games were about to begin.  We scheduled 1-2 hour training sessions.  I was scared.  How the heck am I going to do this?  I was anxious.  I was nervous.  I was excited to get the balling rolling, but mostly scared.  I didn’t want to fail.  Isn’t that what everybody worried about when they start something new?  Scared to fail.  Scared to have the instructor tell you that you are terrible at this new endeavor.  I pushed all the negative chatter to the side and got ready.  

My ‘Blind’ Glasses or Fully Occluded Glasses.  I chose to do my Mobility Training this way.  I would learn how to use my cane faster even though it was frightening.  I also saw the benefit of quelling my fears about how life would be totally blind by training this way.

Tuesday, March 18, 2014

Learning Braille and My New Blog

I just enrolled in an online Braille Class and had to pass an enrollment test.  I had to write a quick story about a part of my life.  Below is what I wrote.  In my opinion I still have a lot of vision left but I am legally blind and you don't want me on the road driving anymore.  : ) Last Fall I started Mobility Training to help me get around easier.  I  am doing the training 'completely blind' so I can learn how to use a cane better.  I plan on sharing about my those experiences in this blog along with other stories that I think may interest people.  

My Sister-in-law Stephanie inspired me to start this blog by encouraging me to write about my 1st Cycle Oregon Experience and surprisingly it was well received.  So, thank Stephanie for opening up a new world to me!!!  I hope you all enjoy my postings and I would love feedback from you.  Good or bad!  Cheers, Keith

I just had my 9th anniversary of being legally blind.  I became legally blind on March 10, 2005.  It happened sooner that I ever thought and I had no idea how I would get around as a professional project manager for a construction company or how i would take care of my 2 daughters.  I was very distraught with this new obstacle.  A lot of tears were shed in the days just after the big news.

I was born with Retinitis Pigmentosa but had had a very 'normal' life up until that point.  My life was going to have many changes if I was going to continue to be active with work, fun and as a dad. 

I moved into town (closer to work) so i could be on a bus line and live near schools for my girls.  I could still ride a bike so I was able to get groceries (with the help of a bike trailer) and make it to different events more easily.  My daughters and I still did everything we always did, it just took longer.  Sometimes a LOT longer.  We traveled to Maui, we traveled to the east coast, we traveled to the San Juan Islands.  We traveled by ferry, taxi, bus, train, friends cars, by foot, by bike and by plane.  We smelled more, we saw more, we heard more and we felt more.  We met more people.  We saw more wildlife. 

People tend to feel bad for me.  What they don't understand is my life is more rich now that I'm legally blind.  There has been so many wonderful gifts that have come from my loss of vision.  I appreciate life more.  I accept what I have more.  I more easily accept help (love) from others.  I am more calm.  I am more happy.  yes, there are times when losing my vision is scary and hard.  or just a pain.  But everyone has some obstacle in their lives.  RP is one of mine.  I love the life I have lived and i wouldn't change a thing.