4 years of blindness

Today, Monday September 15, 2008 marks my 4th anniversary since I became blind.  I thought I’d take some time here to reflect on the anniversary and tell others how I deal with being blind in the hopes that someone newly blind or someone having problems dealing with their blindness may be inspired by what I say hear and know that being blind is not the end of your existence.  Blindness is a hurdle, not a wall.
 
First, a little history about how I lost my eyesight.  I was born on September 28, 1963 several weeks prematurely.  I weighed just under 4 pounds and needed to be placed on oxygen in an incubator to survive.  Back in those days the eyes were not treated with I believe it is silver iodine that protects the eyes from the pure oxygen environment.  As a result my eyes were damaged quite severely.  My left eye had so much scar tissue inside it, that I was totally blind in it.  The right was not as severely damaged and I could see out of it.  It wasn’t until I was about 9 months of age, my parents realized I had vision problems.  It was then learned that I was blind in the left eye and that I had poor vision in the right eye.  I was prescribed glasses and I went about my life as a toddler, breaking my glasses all the time, much to the agony of my parents that had to replace them on a regular basis. 
 
Things went OK for me until I was in second grade.  One afternoon I noticed my vision was becoming increasingly fuzzy.  My teacher shrugged it off since I was a goofy kid.  As the afternoon went on and I went home for the day my vision continued to get worse and worse.  It looked like a blizzard was going on inside my eye.  My parents got me into an eye doctor the next morning.
 
The doctor checked me out and told my parents that I had a hemorrhage and my eye was bleeding internally.  I was placed in the hospital that day.  The doctor hoped that if I was in bed long enough and I wasn’t active that hopefully the bleeding would stop.  This is when the hellish existence began for me.  For the next six weeks I lay flat on my back doing absolutely nothing day and night.  I had a television to listen to but that was about it.  As you can imagine for a 9 year old boy, this was torture.  I remember one night where I was being a goofy kid thrashing around when no one was around because I was bored out of my head.  Well to my complete surprise, my mom showed up completely out of the blue and boy did I ever get into trouble.  After 6 weeks of bed rest and my eye still bleeding, my doctor said he could do nothing more and suggested to my mom that I be taken either to the Cleveland clinic or to the Ohio state University hospital to see a specialist.  At the time these were the only two places around the state that dealt with my type of problem.
 
So on to OSU we went as my mom was more familiar with the Columbus area than the Cleveland area.  Here I was introduced to a very young retina specialist.
 
He spent hours examining me and told us that I had a detached retina and would require surgery to repair it.  So into the hospital I went again.  Basically what they did for the surgery was to cut into my eye and go inside with a super cold welder that was used to literally weld my retina in place.  I guess this was a new treatment at the time.  From what I’ve seen on the Internet this really isn’t done much now.  So for the next three days I slept, the pain was severe and I only wanted to sleep.  This is when I overcame my fear of needles.  I had to be held down everytime before this point because I was terrified of needles.  Well not any more.  After this surgery, I gladly took a shot in the arm, or wherever to put me back to sleep and out of pain.  On the third or forth day I think, they came in my room and said I had to get up and that they couldn’t give me any more medicine.  Slowly I recovered and went home a few days later.
 
It was the summer of 1972 and I was a nine year old boy ready to be a boy again after essentially 7 plus weeks in the hospitals enduring torture after torture.  My eye once again was working as good as it did before the detachment.  Things went well for awhile and then one day in late summer my mom sent me to the store to pick up bread or milk or something like that.  I noticed as I left that my vision began to turn purplish in color.  I hadn’t a clue what was going on and figured it would pass shortly and went on to the store.  when I came back home, I told my mom what was going on.  She immediately called the doctor in Columbus.  He told her that my eye must be bleeding again.  So off to the couch and bed for three weeks of laying still while waiting to get back into the doctor.
 
Ok so three weeks later we get back into the doctor and he examines me.  The surgery had failed to hold my retina in place and was again severely detached.  So back to the hospital for the third time and surgery number two.  This time they opened my eye again and put in what is called a sclera buckle.  It’s literally a band that is put over the retina and welded into place to hold the retina down over the back of the eye. 
 
Fortunately this surgery held and from 1972 through 1989 I lived pretty normally for a legally blind person. and didn’t have anymore serious eye problems.  I never could drive but I could see enough to get around pretty easily and managed very well to do most things a fully sighted person could do.  I graduated from high school in 1982 and spent several years at the University of Akron where I tried unsuccessfully to get my degree in first computer science and then later in data processing technology.  I wasn’t a good college student as I just didn’t put the time and effort into it.  Something I regret now by the way.  This brings us up to 1989 and my next serious set of vision problems to deal with.
 
In early July of 1989 I started to get headaches and my vision was graying out when I was outside in bright sunlight.  At One point just before the 4th of July, I was out at a local lake with a friend enjoying the day.  I suddenly began to get a blinding headache.  I felt if someone were trying to put a ice pick through my right eye.  It was so bad, my friend had to take me to the hospital emergency room.  They checked me out but really couldn’t find anything wrong and let me go home.  Well this continued through out the summer and my mom and friends told me that I needed to go to the doctor to find out what was wrong.  They felt it was something to do with my eyes but I stubbornly refused to do anything about it.  I said it would go away and I’d be fine.  This went on through early September when I finally called an internal medicine doctor  to find out what was wrong.
 
So one day late in September I get into the doctor.  I fill out all the paper work and finally get into see the doctor.  He starts checking me out and at first finds nothing wrong.  He then shines a light into my eye to look inside.  He tries this for a moment or two and then stops.  He then tells me that he wants to send me upstairs to the opthamology center because he says my eye is cloudy and that he can’t get a good look at it.  I should have known right then I was in serious trouble as they got me right in immediately.  SO I go upstairs to the 5th floor to the opthamology department and get right inside to see a specialist.  He starts looking at my eye and then another doctor starts looking as well.  This goes on for sometime until the doctor turns to me and says that I have glaucoma in the eye and it’s very serious.  It’s so serious that he says if I had came in many more days later that I would have gone blind then.  They try to get my pressure in the eye down to a safe level as it was currently in very dangerous territory.  Normal pressure inside the eye is generally around 10 to 20  My pressure was being measured by the doctor and it was reading 60.  Pain is felt at around 35 to 40 and by the time you reach the 60 mark, you are in major pain.  Well I had lived with this all summer and had gotten somewhat tolerant to the pain.  The doctor was shocked that I could just sit there and not be out of my mind with pain.  They made me drink this  terrible liquid that was sickenly sweet.  I had to drink a huge container of it and not get sick.  This was nearly impossible for me, but I managed somehow to not toss my cookies.  The doctors measure my pressure again and got it down to just below 40.  They gave me pills to take and told me that I had to come back in the morning to be looked at again.
 
I return to the doctors office the next morning to be looked at again.  My pressure is at nearly 60 again even with the pills to lower it.  At this time the doctor tells me that I have to go into the hospital today and they have to do surgery right away or I’ll go blind.  So off to the hospital I go.  I was admitted and later that day I went into surgery.  The doctor re created ducts from the front of the eye to the back in order for the fluids to flow properly.  The surgery was a success and once again I was ok.
 
Another year goes by and suddenly one morning I feel the now familiar pain in this time my left eye and immediately know what is going on.  Glaucoma is back, but this time it’s in my left eye which is totally blind.  I get into the eye doctor and they prescribe pills and drops to keep the pressure manageable.  I took the pills for the next few years until finally the eye died and the pressure dropped.  In the early 1990’s I began to notice that my vision in the right eye was slowly beginning to get cloudy.  The eye doctor told me that my lens in the right eye was beginning to get a cataract in it due to the glaucoma a couple of years ago.  He tells me that we can let it go until it begins to give me problems and then they can replace it with an artificial lens.  Ok so two more years go by until I finally decide it’s time for my cataract removal surgery.
 
Now it’s early March of 1994 and I’ve been working for two years as a programmer and PC technician and am having more problems reading the screen.  So I decide it’s time for the surgery.  This time it’s only an out patient kind of thing and I’ll go home right after the surgery.  Boy things sure have changed since my original surgery  twenty years ago in 1972.  I get there and find out I’ll be awake through the entire surgery and am amazed.  They cut my eye open after numbing and immobilizing it.  I can’t really see anything during the surgery except for swirling colors, it was really bizarre.  It didn’t hurt, all I felt was some pressure while they worked.  The surgery went fairly well but as with my earlier surgeries things can an did go wrong.  They were unable to implant the artificial lens in my eye and I had to rely on glasses to do all of the correcting.  Unfortunately my vision never really did clear well and I continued to have problems that resulted in my essentially loosing my job in 1998 partially due to downsizing but in my opinion to my failing vision as well.
 
Over the next year or so my vision stayed about the same until late in 1999 my vision went again.  SO back to the great doctors for another fix.
 
In December of 1999 I had yet another surgery to repair damaged blood vessels in my retina that were causing me to not see again.  This surgery went absolutely perfect.  It was another out patient surgery that lasted for a hour or so and then I was allowed to go home.  It was amazing.  No real pain at all and recovery time was fairly short.  This time my vision was clear and I felt on top of the world.  I could for the first time actually use a computer like everyone else did.  No longer did the white background cause me problems.  I was thrilled.  For the next nearly four years I did pretty well.
 
In November of 2003 I again began to have the familiar signs of bleeding in the eye.  A year and a half earlier in 2002 I had a scare with bleeding and it cleared up on it’s own.  The doctors did a bunch of tests on me and performed ultrasounds of my major vessels in my neck that feed blood to my eyes and brain to see if they were showing signs of clogging but nothing was found.  They also thought I may have diabetes but again that was ruled out.  The doctors looked at me and told me to take it easy and in December of 2003 just before Christmas my vision again cleared.  I thought I was out of the woods and would be fine.  In January of 2004 the eye began to bleed yet again and this time didn’t stop.  Many doctors looked at it, but none were convinced that they could fix it.  I had good and bad days.  I could see for a brief period of time each day when I got up in the morning before the blood got stirred up and clouded my vision.  SO began a daily routine to see what I could do on the computer for the little amount of time I had each day.  In May of 2004 finally a doctor said that he could repair the damage in my eye.  He told me that there was a 10 percent chance I’d loose my sight totally and a 75 percent chance he could restore my vision to my normal and a 90 percent chance he could at least give me some amount of vision and that I wouldn’t go blind.  So I eagerly agreed to have the surgery done.  So In early June of 2004 I had what would be my last surgery on my failing eye.  At first everything seemed to go pretty well.  The vision wasn’t what it was before but at least I could see.  Then the complications began to set in and I was in trouble.  The eye began to get inflammation in it that was getting out of control.  The pressure in the eye began to drop.  At first this was expected.  Week after week it went lower from 12 to 10, then to 8 and then to 6 and then to 4 and finally to 0.  Now I was in trouble and nearing the end.  Without fluid being produced in the eye, it would slowly begin to die.  The doctors kept looking at it but were unable to do anything.  On September 15th every doctor in the place basically looked at me one more time and told me that there was nothing more to be done.  I never have seen another day since then.  I saw one more specialist in December of 2004 and he also told me that there was nothing that he or anyone else could do for me.  This is when I finally realized that I was truly blind and would have to deal with it or not deal with it, the choice was now mine to make.
 
Ok, so now you know how I went blind.  Now I’ll tell you how I’ve coped with being blind for the last four years now.  Fortunately for me, I’ve kept upbeat through all of this.  I’ve never let   being blind bring me down.  I’ve vowed to fight on and not let blindness defeat me or to allow it to make me someone that can’t survive on my own.  I’ll admit it’s been a struggle and I’m still far from perfect in some aspects of my independence.  My mobility skills aren’t nearly as good as I’d like them to be and I have to have people take me places.  I admit I need help, but we all need help at some point.  It’s ok to admit we need help from others in our daily lives as it makes us stronger by admitting it.  Never give up, don’t let blindness defeat you, turn it in to a hindrance not a disability.
 
In the last few months of 2004, I struggled with everything.  I desperately needed to be able to use my PC.  The PC was my lifeline and I knew it.  I had been using computers  since the late 1970’s and knew that in order to survive my blindness I had to be able to continue to use it.  I found the dreaded Windows narrator and began to use it in order to even do anything on the computer.  I knew about Window Eyes and then Jaws but I also knew there was no way I could ever afford to buy one of these programs anytime soon.  I struggled with narrator and managed to download demo versions of both Window Eyes and Jaws from the Internet.  I must say that after trying to use the demos I hated both of them and for a time started to feel lost and very discouraged.  One of my friends got me IBM’s Home Page Reader, which allowed me to use the Internet for the first time since I lost my sight.  This program was very easy to use.  I got used to it pretty quickly and was even able to make a purchase online for Christmas.  The main problem was that the program crashed at the drop of a hat and it didn’t help me any in other areas on the PC.  But at least finally there were glimmers of hope.
 
In early 2005 I contacted my state rehab agency for help.  My case worker was great and said he could get me the help that I needed.  By May they got me Jaws, Open Book and a Epson scanner and also got me some mobility training approved.
 
I spent the rest of 2005 getting my o/m training and learning Jaws and what programs I could use and what programs I could no longer use on my computer.  At this point I was still on my own, I hadn’t joined any mailing lists for blindness nor did I know anyone online.  I attempted to find out what my local blind center offered for computer training and found out I basically knew as much as the people there did about using Jaws in many ways.  So that went nowhere.  Not to mention that they blew me off once they found out that I was not 55 years old or older.  So I started searching the Internet for blindness resources.  It was slow at first, learning the Internet was a challenge at first for me.  I was used to using the Internet visually and the way a screen reader presents it is vastly different. I slowly began to find websites that were useful to me.  In late 2005 I found the blind cool tech website.  It was an absolute gold mine of information for a blind person.  Before this point I had never heard of a podcast before, so this was all brand new to me.  One of the first things I got out of BCT was a podcast on a blind friendly cell phone.  By the end of December I had the LG VX 4650 and was happily using my new found toy.  It was great to be able to have a cell phone with voice capabilities.
 
Ok, now on to 2006.  I must say that 2006 was a break through year for me.  Many things began to happen and my knowledge of Jaws increased greatly. This allowed me to start doing many more things with the computer that I had been wanting to do for more than a year now. BCT intrigued me greatly.  I continued to listen to all the great podcasts there.  One day in late January, I decided that I wanted to do a podcast like everyone else on BCT was doing.  I had just purchased a Voice it all device from Maxiaids and wanted to do a podcast on it.  So I was at the time playing with total recorder and decided to give it a try.  I completed the recording and sent it up to BCT.  From there I was hooked.  I then recorded a podcast about myself and sent it up to BCT for everyone to listen to.  I got some favorable emails back about my first podcasts.  At this time I joined the BCT mailing list and began to meet many new friends online.  Next I decided to tackle a real tutorial type of podcast.  Everyone wanted a Nero podcast and since I had used the program for along time now, I felt I could do a decent podcast on the program.  I recorded a four part podcast on using Nero and uploaded it to BCT.  I got tons of great feedback on the tutorial and was ready to do more and more.
 
I purchased a Book Port book reader and a Olympus WS 320 digital voice recorder In February.  Both thanks to podcasts on BCT!  I began using the digital voice recorder to do my podcasts which gave me flexibility to do different things.  Also at this time I purchased a copy of Goldwave, a recording program for the PC that many blind people were using to do their podcasts with.  I couldn’t figure the program out no matter what I tried.  I asked on many mailing lists for a tutorial, but at the time there was only two of them.  One was a pay tutorial and the other was on for the people.  I really wanted to learn the program, so I joined for the people and downloaded the ten part tutorial done by Dennis AKA Start Button.  It was great and in no time I was using Goldwave.  The outcry for Goldwave tutorials was so great at the time that I decided to create my own series on Goldwave.  I recorded the first one and sent it up to BCT.  It was an instant success.  Everyone loved it and wanted more.  So in pretty quick succession five more parts were done over the next few months for BCT.  They also were very well liked.  So through 2006 I recorded many tutorials for BCT.  In September of 2006 Debbie Scales from http://www.jfwlite.com passed away.  She was greatly loved in the blind community and was a very well respected teacher and website owner. I had emailed her a few times and had been on her website to download quite a few very useful programs and Jaws scripts before she passed away.  Both Debbie and Larry Skutchan from BCT greatly influenced me and I considered both of them to be my mentors.  Also many BCT contributors including Mary Emerson, Neal Ewers, Darrell Shandrow and Darren Duff gave me the encouragement and confidence to do all the things I was now doing.  It was at this point I began considering the creation of my own website.
 
So in November of 2006 I began to write the Blind Geek Zone website.  I wanted it to be like both BCT and JFW Lite. The website quickly became very popular with nearly 2000 visitors  there every month.  The website started out with just the content I had created for BCT and some links and documents.  As 2006 ended and 2007 began the website began to grow greatly.
 
In June 2006  I began to do volunteer work at the Akron Blind Center, here I started to learn how to train other blind people to use the PC.  I ended up Volunteering there through May of 2007.  I volunteered a few hundred hours there and learned a great deal.  The people there helped me a great deal to become more mobile and independent.  John, Dave, Kathy and Ray were great people and I consider all of them to be my friends.  Dave taught me a great deal  about Jaws and how to travel around the area at lunch.  Both Kathy and Dave gave me some Jaws and Word training that I learned a lot from.  So after volunteering for the center and creating all my various tutorials, I decided that somehow I wanted to find a way to train people online to learn computer skills in order for them to be more independent in their day to day lives.  In early 2007 this became another component of the Blind Geek Zone website.
 
Ok, now on to 2007.  During early 2007 I was volunteering at the blind center, recording more podcasts and tutorials for the BGZ website and also training people online about many different programs on the computer.  I was beginning to stretch myself very thin.  I was trying to do more than I could handle.  I decided in May of 2007 that I wanted to concentrate on my online business and stopped volunteering for the center.  Throughout the remainder of 2007 I continued to train people online and work on the website.  I was also running several mailing lists including the BCT and BGZ lists.
 
I also started working with the new Windows Vista operating system in March of 2008.  I knew it was important to begin to create tutorials for Vista as many blind people were starting to use it as well.  I produced some of the earliest tutorials out there.  I also began to work with people on the new blind Vista mailing list, where I still am today.
 
I also began to appear on ACB Radio main menu as a semi regular guest with Jeff Bishop and Darrell Shandrow.  Jeff and Darrell were great and they helped me to get my name out in the blind community.  I enjoyed being on the show a great deal.  I did A series on Vista for them and also appeared on several other segments over the year.  Also in the late 2006 to 2007 time period I was on the Tech Talk live program on Accessible world a couple of times as well.
 
In July 2007 I began the BGZ blog.  The blog has allowed me to do quite a few different things that I couldn’t do on a podcast or on my website.  It also allowed people to interact with me, something they couldn’t do on the podcasts or on my BGZ website.  The blog has been pretty successful up to today.  I have enjoyed posting here a lot.
 
In November of 2008 I was offered a paid position at the Akron Blind Center.  I took over for a person that left the computer department.  It was quite a challenge to me.  I had to take care of all the computers at the center, train anyone that came into the center for computer training and also head the communications department.  It certainly was a great experience and I enjoyed it very much.  Unfortunately the position only lasted just over three months due to the center running out of operating funds partially due to a lawsuit against the center at the time.
 
And now to 2008.  This year I continue to work with the BGZ website creating tutorials and new podcasts.  I am also continuing to train people online to learn computer skills.  I have also began to write websites for people as well.  The training and website creation services have helped me to make a buck here and there to partially supplement my SSDI.  Business is slowly continuing to grow and I’m hopeful that sometime in the future that my online business will be successful enough to make a living from it.
 
I have also started learning Braille this year.  I’m currently learning contracted Braille.  It’s a slow go but I’m getting there.  I’m also as of the end of July beginning to train others in uncontracted Braille at the Akron Blind Center.  Since the closing of the center this week that is somewhat in doubt now though.
 
So now on to the present.  I continue to learn new things every day.  Blindness is still an on going struggle but I’m doing well and know as each year passes that I will continue to do even better in dealing with my blindness.  I hope that everyone reading this is doing well with their blindness as well.  Keep fighting and together we will all continue to make progress.
 
Thank you to everyone that has helped me over the last four years.  There are simply too many people to name, but thank you to each and everyone of you out there.  I hope that I have helped as many people that have helped me to be a better person.
 
Rick