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.


  1. This post is even better than the last. Love the details. Your VF test was especially interesting to see (I administer that test all the time at work---EVERYONE hates it) and I was surprised and amazed to learn that you don't see black areas (your brain fills those areas in---wow!!!) While I read I kind of felt like I was walking in your shoes.

  2. That was such an informative post. It will shed a lot of light (no pun intended) on the condition of RP and the struggles, challenges, and fears you face daily. You have always fought through the adversity of this eye condition, but the way that your are embracing it today is remarkable and inspiring...even for your little brother!! Love you, Bro.

  3. Not sure where my other comment went Keith--I put one on last night?! Anyway--basically I wrote what Glenn did--Im so happy that you are putting this down and sharing this---to let friends and strangers know about limited eyesight. Living and loving you has opened "my eyes" to eyesight and the things I take for granted and opened up a new world to me. When we were dating---not sure if you remember, but you gave me your "blind" glasses and I took my two dogs for an hour walk with them on. It was nerve wracking (and you know how it is to walk my dogs with my full eyes....) but so glad and I---and I think I should do that once a year at least. Thank-you for being patient with me as I learn about this and how to be a good partner in life for you. I love you.

  4. thanks you 3 for all the wonderful words!!!! means so much to me to get this feedback! You all know me so well and you are still learning new things about me. understanding the nuances of RP is not easy. I'm still getting used to it myself. : )

  5. Greetings Keith
    Thank you from the bottom of my heart! I found your blog and your story and my life changed today. You have given me hope and resources and I cant thank you enough..... Im struggling with vision loss from RK surgery in 1992. Incisions cut too deeply have caused my corneas to collapse. Vision going little by little and not sure how to cope with the changes yet. I contacted the WDSSB just now and have an appointment to get counseling and life change skills. Thank you for sharing your struggles and your success. I am volunteering at an organic farm in Yelm and interested in sustainability and aquaponics. Love that you are working for St Petes as a sustainability coordinator. I was a hospice worker for St Petes 2003-2007. Would love to chat with you sometime! Thank you again for being out there for people that need help! Huge hugs! Ella mayelf@live.com

  6. Natural herbal remedy of Natural herbs clinic is one of the successful retinitis pigmentosa treatment in world without any side effects.