My journey: 9 years of blindness

On September 15th 2004, I walked out of my eye doctors office knowing that only 3 months after my6th and final eye surgery in 40 years that my days of seeing the world around me were gone. My remaining vision consisted of being able to tell light and dark only and over the course of the next years even this faded to total loss of vision and total darkness. I couldn’t read a book, watch television or use my computer any longer. Visions of family and friends were all gone, never to return again. My life was turned upside down. Some would have given up, some may have done much worse but not me. Almost immediately , I began to try to find answers as how I could continue to live a productive life being blind. At this point I still thought maybe, just maybe my vision could be restored still and blindness would just be a temporary inconvenience that I could get through soon and be once again able to see the world around me.

In late September I found Microsoft Sam and narrator on Windows XP which is a very minimal screen reader . Yes all I had between going nuts and using my computer in any meaningful way was the lowly narrator and the un bearable voice of Microsoft Sam. Some would say this was worse than the sentence of blindness itself! Knowing no better having never used a screen reader before, I was thrilled, at this point I knew there was a way to use my computer and there was a way I could try to connect back with the world. So for the next 8 months or so I used narrator to keep myself from going completely nuts and going nuts is what would have happened if I couldn’t use my computer. It’s safe to say without this first step that I wouldn’t have been able to cope and may have even contemplated worse things that would have led to me not being here today writing to all of you 9 years later.

Still hoping that somehow my vision could be restored as it had been 6 times before, I decided to see another eye specialist in December just 3 days before Christmas still hoping that somehow someone out there had the skills to give me another chance at sight. I had at this point moved up the ladder a bit on the computer front. I used narrator to get demo’s of both Jaws and Window Eyes screen readers to see if I could use them or not. I had no idea in the world how I would come up with the nearly $1000 that these things cost. Back in late 2004 the free screen reader we know of today really didn’t exist that i knew of. My first attempts at using either of these screen readers in demonstration mode was very disappointing to me as it was difficult to nearly impossible to do much in the 30 to 40 minutes either program would function before you were forced to reboot the computer and begin again. I couldn’t figure them out and all the commands to get them to do anything made me want to tear my hair out in clumps! Fortunately my friend Don came to the rescue at this time and gave me IBM homepage reader as a early Christmas gift. A gift that changed my life and gave me hope. I found that I could easily use homepage reader to get on the internet and have it read the pages to me and allow me to easily navigate the web. I was able to go out and by my mom a music CD for Christmas which at the time I thought was the feat of the century. The doctor visit was on a cold snowy day, traffic could hardly get around but my mom got me there to see the specialist. My hopes though were quickly dashed. After looking at me for a bit with all the lights, lenses and gadgets they use to look inside the eye, he told me that there wasn’t anything that could be done and I would be blind for the rest of my life. Not the gift I had hoped for on the eve of Christmas but none the less what I had to deal with. I really wasn’t overly surprised as I had done some research online as to what ROP or retinopathy of prematurity was and found out that my prognosis was very bleak. So on this day, I decided that I was going to be blind and I had better get to dealing with it and go on with my life.

I called my local blind center and asked about what they offered as far as computer classes that could help me use the computer a lot better than I currently was but was pretty much told they didn’t offer much and what they did offer in terms of other classes didn’t interest me in the slightest bit. I had no interest in beading or knitting classes. Also at this point I decided to call my state rehab agency and se what they could do for me and was given an appointment for early January of 2005. I had dealt with rehab back in 1984 while attending the University of Akron were I was trying to get my computer science degree. Rehab back then was a complete total joke, they suggested that I become a diesel engine mechanic after some testing. I told them that they were nuts and walked out of the office and didn’t come back again. I really hoped that 20 years later the outcome would turn out differently but I didn’t have a lot of hope at that time that they would be able to help me in any meaningful way.

I met with my counselor and after discussing all of my options to me, I was able to make decisions that led to a good outcome with rehap this time around and in May I received Jaws 5 and 6 along with Open Book 7 and a Epson flatbed scanner. With a few hours of training, this time I was more confident about using Jaws on the PC and was starting to see some light at the end of the tunnel metaphorically speaking.

At this time I also was assigned a mobility instructor and given my white cane to work with. For me mobility training was much more difficult than any of the learning to use the new assistive technology I was given was. Learning to use my white cane effectively was a slow and awkward process. I met with Judy my mobility instructor for roughly an hour or so each week to learn a new piece of the puzzle and then to practice what I learned. Being in a residential area here in south Akron without any stores or places of interest less than about a mile to walk to made this process more difficult since I just didn’t have enough goals to reach for. All in all, I received about 40 hours of training and learned just about enough to be considered dangerous! To this day my mobility skills leave much to be desired and are my biggest thing that I still today struggle with. That in no way was any fault of Judy’s, she was fabulous and I’m thankful to have had someone like her working with me. I was also supposed to get some assistance that would help me around the house and to see what items there I might need to get things done easier. Basically this part fell through the cracks. I was promised a few aids for the kitchen but never got anything at all. Fortunately, I do reasonably well inside the house. I can do my own laundry without any real difficulty. I can run the vacuum without sucking my cat or anything else up in it that shouldn’t be. While I don’t cook much, if I had to I think I could do at least the basics without burning the house down. I’m pretty good with learning the layout of a new place quickly and know the layout of the local blind center like the back of my hand. I can get around there without even using my white cane if people aren’t around for me to run in to.

My 2 biggest phobia’s though are stairs and bridges / walkways or open places high off the ground. I found this out during mobility training when I froze completely terrified on a flight of open stairs downtown while doing a training session and again when walking over a highway bridge with my mobility instructor on another lesson. This continually causes me problems when out with people or visiting friends. It’s very embarrassing but I’ve found no way to really get over the constant fear. I do try from time to time to face the fears and can force myself to an extent to do the stairs. While at the ACB convention this summer, I walked up 5 floors of narrow confining stairs to get around the mass confusion at the elevators one evening early on in the convention. I did this only 1 time however and couldn’t make myself try it again. I’m also constantly afraid of falling over the side of things even though I know it’s not possible. I had this fear several times on the escalators and up on the 3rd floor of the hotel at the convention as well. I doubt that I’ll ever over come these fears short of going through psychotherapy or some form of hypnosis!

I spent all of my free time basically throughout mid and late 2005 learning to use Jaws more effectivly and to seek out other blind people. This wasn’t happening locally since the blind center here basically blew me off at the time that I contacted them for possible assistance. I did make progress online and I started to find mailing lists that were specifically for the discussion of using Jaws and I joined several of them. The JFW list was where I met a lot of you that I know to this very day still and where I learned from a lot of Jaws users the things that helped me to become proficient on the computer as a blind person. Blind tech was another great list where I learned a lot and met a lot of new online friends. In late 2005 I found a literal goldmine of information we knew at the time as the blind cool tech website. I became acquainted with what is called the audio podcast. I had never before heard a single podcast and suddenly I find this website just full of these dealing with everyday issues being faced by blind people along with demonstrations of gadgets used by the blind to do all kinds of things. I thought I had died and went to blind heaven at this point! I spent most of November and December listening to various podcasts soaking up all the wealth of knowledge. My first new toy from the list I purchased was the LG VX4650 cell phone by Verizon that actually spoke a lot of the features of the phone. BCT was a turning point in my journey through blindness like no other I’ve had so far. For the first time I really knew that I could learn to live a productive life as a blind person after listening to all of the podcasts done there by other blind people not all that different than myself.

Larry Skutchan the founder of BCT was one of the people in the blind community that really made a difference in my life, I listened to podcast after podcast of Larry’s that he recorded on his way to work. I liked his bookport podcasts so much that I purchased one from APH. This little device allowed me to listen to podcasts, audible books, text files and so much more. It was another one of the early tech gadgets that I purchased after finding BCT on the web.

In January 2006 I decided that I wanted to give this podcast thing a try and I recorded my first podcast for BCT. It was a demonstration of the voice it all money reader, voice note recorder and color identifier I had recently purchased from Maxiaids.

my first podcast

Boy, all that I had back then to record with in those days was a cheap little stick microphone and a cheap recording program for windows, wow how I’ve changed since then here with mixers, better recording programs with much more expensive microphones. I received quite a bit of favorable comments on my first podcast and soon began recording others for BCT. My first major effort was recording a multi part series on Nero burning ROM which I received tons of praise for then I recorded the ever popular Goldwave series, that I continue to receive positive comments on even today after 7 plus years. Things like this make me feel very good about what I was able to accomplish in my early years of blindness. I continued to record many more podcasts for BCT throughout 2006 on many other programs and several different gadgets that I had purchased.

In November of 2006 I decided to start out on a very ambitious project that I named the blind geek zone. Seeing that blind cool tech was so very successful, I wanted to see if I could create a place where not only could I share all of my podcasts with everyone but get others to contribute as they did on BCT. I soon found out that people weren’t just going to go somewhere else with BCT going as strong as it still was at the time. It would take another 6 years and the demise of the BCT website to make that happen. BGZ did soon become a great place to find the ever growing list of podcasts that I recorded to share with everyone in the blind community along with some other podcast that friends of BGZ recorded and placed there as well. Even now, I still have most of these podcasts archived on the website even though many of them are quite outdated now.

In February 2007 I started to offer paid training services on the BGZ website. Since June 2006 I had been volunteering at the Akron Blind Center then called Vision Support Services as a Assistive technology trainer. After doing demonstrations and tutorials for BCT, I approached my rehab counselor and told him that I had decided that I wanted to become an assistive technology trainer instead of getting back into programming as I had done a lot of for a living when I could still see. I decided that I could do a lot more being an assistive technology trainer than I could ever do as a programmer. SO I was told to go out and interview several persons in the field so that I could find out what it is that I should be doing in order to seek employment in the field. I interviewed with someone in the AT field at the Cleveland sight center as well as a friend in Cincinnati Ohio and finally a person at VSS who ran the computer lab there. After speaking with Dave at VSS, I decided to volunteer as an instructor at the center in order to gain valuable experience from trained professionals in the AT field. After interviewing with the head of the department there, I was approved to join the staff in the computer lab as a volunteer trainer. This is where I got my first real taste of working with blind people and man what a eye opener that was! Dave and Kathy quickly showed me what I needed to know and to give me additional training that I was approved to get from rehab here in Ohio. Dave had evaluated me earlier in the year to determine what my skill levels were. He had reported back to rehab that I could use some word and excel training but as far as Jaws was concerned, I knew nearly as much as he did! He rated me at a high level intermediate to low level expert using Jaws. I had obviously done quite well in my first year of learning to use Jaws, about the only thing at the time I didn’t know how to do was how to write scripts that enhanced it’s usage in programs that it couldn’t directly support by normal means.
Dave and Kathy were great to work with and are friends with me still today. The year I spent down there in the lab gave me tons of valuable experience that I couldn’t have gotten on my own. So after all of this, I decided to start Offering paid 1 on 1 services through the BGZ website in February 2007. It was a slow start but I soon began to get customers all over the world that needed various types of support and training. One of my first clients was a blind woman in India, this was quite a learning experience as I had to work around things like power brownouts that regularly happened there as well as how to get paid for my services. Things worked out well and I’m still offering services today. I currently usually have at least 4 to 6 people at any given time to work with. It’s not a huge amount of money but it helps a fair bit. Also I get to meet more and more people all the time and that’s been great as well. Every person I’ve worked with has helped me to grow and improve in some way here as to how I work with others. Even today I’m still learning things from working with my clients that I can apply to someone else.

In 2006 and 2007 I became more and more part of the blind community. I was approached in 2006 by Accessible Worlds Pat Price to give a presentation demonstrating the Hamilton Beach talking microwave oven and soon after that I was invited by my friend Robert Acosta to become part of their technology committee where I remain today. I also started appearing on ACB’s main menu in 2007 with Jeff Bishop and Darrell Shandrow who soon became friends of mine. I made regular appearances there in 2007 and 2008. I was part of the ACB main menu team as a contributor in 2010 and 2011 but was forced to leave as I just couldn’t keep up with everything I was volunteering to do. I was definitely on a wild roller coaster ride back then. I was involved in more and more things around the community. In the spring of 2007 Mike Calvo from Serotek approached me after hearing me on main menu about potentially working for Serotek in some capacity. Unfortunately during this time the nice folks over at Freedom Scientific decided to sue Serotek which caused a down sizing there and my job opportunity was gone with the wind shortly there after!

In 2009 I decided to get involved more on a local scale. I decided to join my local chapter of ACB Ohio and also became a board member at VSS during it’s litigation between the board and it’s membership that had started in 2007 which resulted in it’s closure for nearly a year and a half.

I spent most of late 2007 and all of 2008 on the other side of the fence in a battle at what is now the Akron Blind Center. I was part of the staff there at the time and had became employed as the communications director after Dave left there in October of2007. I was in charge of keeping an ailing old network and a bunch of junky computers up and running there which was no small task. I also was on the side against the membership who in late 2007 sued the center to remove what it considered a hostile board that in their eyes was trying to kick them out of their center. I’ll not get in to the politics here as far as I’m concerned is the past and needs to be left there. Needless to say I wasn’t a popular person there for a long time as it was assumed that I’d be on their side. Unfortunately I hadn’t been there long enough to know much of the history at the center and my main concern at the time was that I now had a job that people were trying to take away from me. This probably clouded my vision greatly at that time. Looking back, lots of wrongs were done by both sides in my opinion. Anyways two of my friends on the board at the time were Marilyn and Lynne. Marilyn was part of the NFB and Lynne was part of ACB and boy what interesting times those were as you no doubt can imagine. Lynne talked me into joining ACB of Ohio as I fit the philosophy of ACB more closely than I do with the NFB. Both places have their merits and this post isn’t a place to debate any of the differences in the two organizations. Marilyn called me in January 2009 and told me a member of the board was leaving and that my presence on the board would be beneficial, something at the time I couldn’t imagine of being true. Marilyn also taught me Braille back in 2009 which I blogged quite a bit about here in earlier blog posts. So both of them played important roles in my life as well and continued to steer me down the road of blindness so to speak.

After attending a board meeting in January 2009 where I told everyone there my goal was not to help close the center but to find away to re open it, I was elected to sit on the 11 member board. I will say that few there at the time believed that such a thing was even remotely possible but In the summer of 2009 I was part of a 4 person mediating team for the board that sat down and hashed our differences with the membership team out over a 3month period. In September of 2009 both sides came to an agreement that allowed the center to re open. I was also 1 of the 3 old board members designated to sit on the new board of the Akron Blind Center, where I still sit today, nearing the end of my 2nd term.

As I said earlier, I also joined the Summit county chapter of ACB of Ohio in January 2009 where I am still a member today. I’ve done lots of fun things there and have began this year to become more involved at the state level. I currently sit on 2 committees, the technology committee and also the website committee. In July 2012 I attended my first ACB national convention in Columbus Ohio where I was involved in recording many of the workshops there.

IN 2010 I got to do something that I had thought would be kind of a cool thing to do since I was a kid. When I was 16 years old, I was in high school and was working at a local haunt for Halloween called the haunted school house. One day while I was there the local AM radio station was there broadcasting from the house. I was briefly interviewed on the air as to what I did there and how I liked being a monster! Afterwards the broadcaster told me that I had a great radio voice and since I really loved listening to music and the radio back then I always thought it would be interesting to be a DJ and play music and talk on the air to lots of people. Well that dream never really went anywhere until I was approached by Jeff Bishop and a couple of others in August of 2010, they asked me to join ACB after hearing me play around with some streaming software I had just purchased in order to do live events on BGZ. I thought about it and Larry Turnbull of ACB Interactive gave me a spot on ACB Radio Interactive after auditioning for him in early September. Three months later I also started doing shows on the world wide legend that’s ran by Bill Sparks. I do 3 shows a week now and play a wide variety of music. On Friday’s I play pop and rock from the 1960′s through the mid 1980′s, on Saturday nights I do a request show where I play pop, rock, folk, country and so on from the 40′s through today. On Sunday’s I do a classic rock show where I play classic rock from the mid 60′s through the mid 80′s. I’ve had a lot of fun over the last 3 years doing these shows and I’ve learned a lot about music and presenting live, I’d like to think it’s also improved my presentation of my podcasts on BGZ as well.

So what have I been doing over this last year? In November 2011 I completely re created the BGZ website with the help of Justin Romack and others. It’s a great new site that I’m very proud of. It’s taken several months and quite a few dollars to make the site what it is today. I am able to accept podcasts from anyone wishing to contribute something with a very easy to fill out form and a few moments of time on my part here. Also the resources page has the ability for you the contributor to submit links that you like and want to share with others. All of the pages were professionally re written by Justin Romack so that the new BGZ is a great place to come visit.

I spent several months early in the year working with Fedora Outlier, an Apple services company out of Georgia that specializes in teaching blind clients various Apple devices with voice over. Unfortunately we parted ways in April.

Next year will mark an entire decade of being blind for me, I have no idea what this next year holds in store for me but if it’s anything like the last 9 then it sure will be interesting.

You might read this and wonder if I would still like to be able to see and the answer to that is a huge YES! I will say however that I don’t let my blindness bring me down and consume me at all. I’d love to be able to see again but if that day never comes then so be it. I’ve met tons of wonderful people that I would have never met if I hadn’t went blind and I cherish all of these new friendships very much. I deal with my blindness very well, I don’t consider it a disability, just a hindrance. I can do most anything any sighted person can do out there. Maybe it takes a little longer and a bit more effort for me but I get it done. When someone sighted says that I’m some how different or special because I seem to live a normal life, I say nonsense, we are all special in our own way regardless of being blind or sighted. I’m not special because of the things I can do being a blind person, I’m just well adapted that’s all. Believe me, I’m not afraid to admit when I can’t do something because of my blindness. That’s not a weakness either, each and everyone of us blind or sighted needs help at one time or another in our lives.

If you are reading this and maybe you’ve just lost your sight and are wondering if you can cope with being blind and don’t know where to turn for help, well the answer is yes you can deal with blindness just like I have. Don’t give up or give in. Seek out people that can help you. If I can do it so can you. I hope that this article helps at least one person out there in some way. See you again next September with another years report on how I’m doing.

If you would like to read a bit more about my history prior to 2004, you can read about it in another blog post here that I wrote back in September of 2008.

Four years of blindness