Tales of the Reluctant Blind: Introducing the Accessiversity Blog
Pictured left to right, Chris Knapp, former City of Lansing Mayor David Hollister, and Bob Johnson. On the left is the conceptual site plan for the Red Cedar Golf Course site which was produced for the City of Lansing Blue-Ribbon Committee for Minor League Baseball. The drawing shown on the right actually predates the formation of the City Of Lansing’s Blue-Ribbon Committee, and depicts a conceptual site plan for the downtown Lansing site where the home of the Lugnuts currently stands. Photo courtesy of AK Stories.
With the exception of a few disturbing examples from antiquity where we have accounts of semi-mythical characters putting out their own eyes, or the occasional person who accidently sees their grandparent naked, nobody really wants to be blind. Such was the case with me, and my story of how I ended up becoming blind.
Growing up, I was like every other normal suburban kid. When I wasn’t playing G.I. Joe or organizing my baseball card collection, I was setting up a Crossbows & Catapults battlefield in the middle of the kitchen floor, or putting marker to cardboard to ink a creation of my own making, usually something sports related, like a giant, replica Rose Bowl field to host a game between my Big 10 champion Michigan Wolverines and the hated Washington Huskies from the PAC 10, in an imaginary gridiron match-up of blue and white poker chip players lined up in power I formations and 4-3 defenses. I spent the summers of my youth playing wiffleball and riding my bike to 7-Eleven for Slurpees or Mountain Dew big gulps. I had an interception in my first game playing Delhi Parks & Rec flag football for Eastlund Concrete, and returned the following season to be the starting quarterback, and may very well still hold the infamous Delhi Parks & Rec flag football record for going an entire season without completing a single pass (in fairness to my 10-year old self, I think I only attempted about four passes the entire season). When I was fifteen I got a job working in the warehouse at Witmark Catalog Showrooms, and when I turned sixteen I got my first car, a butt ugly, faded red Plymouth Horizon TC3 hatchback with a driver’s side door that wouldn’t open from the outside and a plastic grill that was starting to chip so the yellow fiberglass underneath began to show through, giving it the appearance of a tricked out flame job. But in the summer between my junior and senior years, I had saved up enough money to buy my older sister’s black Chevy Beretta, which was probably one of the nicest cars of any of the kids in school at that time. I was an above average student, a bit of a class clown, which is somewhat awkward the first time you get sent down to the office and your greeted by your mom, who happened to be the secretary for the principle of our high school. I obsessed over girls, did my share of underage drinking at the bonfires we would have after home football games or while hanging out with Da’ Fellas, a high school fraternity of sorts that me and a few of my friends had started. I did all of this, not knowing that my life would soon take an unexpected, and horrible turn for the worse.
Life immediately after high school graduation was somewhat frenetic, as I was now freed up to work more hours in the warehouse at Witmark plus I got a second job working as a bellman/van driver at the Holiday Inn South (which, by the way, is still the best f’ing job I ever had!) My ambition, hard work and dedication was rewarded, when my former boss at Witmark who now worked in operations for Witmark’s parent company, offered me a store manager position for a new chain of dollar stores that they were opening. I was nineteen, and the $20,000 annual salary was a shit-ton of money to my young, stupid self, so I took the job. It was while I was working those long hours at the dollar store in Jackson, commuting back and forth every day, stressing out over my new responsibilities as I grappled with how to play the part of a much older, more mature person that I felt the pressure to portray, even as I continually doubted and questioned everything I was doing at the time; it was with this backdrop that I started experiencing the first problems with my eyes. At first, it was just my left eye. My eye would get super bloodshot and my vision would get fuzzy, or in a few cases, I would temporarily loos vision in the eye, but it would eventually come back. The ophthalmologist I was seeing in Jackson said that I was just experiencing severe iritis and would prescribe me topical steroid eyedrops and send me on my way. But the problem persisted.
I don’t know if it was because of the reoccurring episodes of inflammation and temporary blindness that I kept on experiencing with my left eye, or the cumulative toll that the stress of managing the dollar store was inflicting on my now fragile, and thoroughly exhausted mind and body, but I decided I needed to make a change. I took a part-time office assistant position with a real estate development company in East Lansing and enrolled in classes at Lansing Community College. Back then, I had aspirations of becoming an architect. In fact, while I was taking my first drafting classes at LCC, I was serving on a special Blue-Ribbon Committee for Minor League Baseball that the City of Lansing had formed in an effort to attract a new minor-league baseball team to Lansing.
A few of my baseball enthusiast friends and I had started a grass-roots effort a couple of years prior, because we knew that there were a bunch of changes that would be coming out from the National Association of Professional Baseball Leagues, the organization that governs all of professional baseball. We had suspected, correctly I might add, that a lot of the minor league teams in the smaller, rural communities would not be able to convince their local municipalities to invest in the improvements to their fields and stadiums that were going to be required as part of these new regulations, so our strategy was to excite the Greater Lansing community and sell them on the concept of wooing those prospective suitors, when the first teams came calling. By the time the City of Lansing formed its Blue Ribbon Committee, we already had a conceptual stadium design for the downtown site where the current home of the Lugnuts stands (I’m not going to call it by its new name, because it will always be Oldsmobile Park to me) which got my friend Bob Johnson named to head up a Design Sub-committee, while I was brought on to help with conducting the feasibility study for several prospective municipal properties that were being evaluated.
A few months later, as I stood next to a representative from one of the big, prominent sports architecture firms in the nation (I can’t remember now if it was HNTB or HOK) as he examined my site plan for the former Red Cedar golf course site (which incidentally, the first team that had expressed interest in possibly relocating to Lansing had preferred as the future site for their new stadium, which they planned to model after a ballpark in Lake Elsinore, CA) I experienced the most bittersweet moment of my life.
There, with my site plan prominently placed on an easel in the front of the Lansing City Council chamber for the meeting where we reported out on the findings of our Blue Ribbon Committee, and as this professional sports architect looked over my poster board and color-pencil creation which I had painstakingly plotted out on my drafting table using topographical maps provided to me by the city, he asked, “is this your work?” When I replied “yes”, he complimented me on the quality of my work and asked, “where did you study?” which prompted me to chuckle before I responded, “Holt High School”. To this he simply said, “you have a promising future ahead of you”.
Even now, as I think back at that moment, I get an awful sickening feeling in my stomach as I beat myself up about what might have been. I had just received the validation that I had so desperately wanted, that I had what it takes to be successful in the one field that I aspired to work in more than any other, as evidenced by the compliment that I had just received from someone, who at least in sports architecture circles, practically had rock star status. But you see, he had no idea, nobody at the meeting that night had any idea, that I couldn’t see anything out of my left eye. I had experienced another reoccurrence of the inflammation a few weeks prior and had temporarily lost vision in the eye again, or so I thought. This time it had not returned.
What I would come to find out is that I had experienced a full retinal detachment. In fact, there was so much scar tissue on the retina that the surgery to try and repair the retina took more than 10 hours. I spent the next six weeks lying face down, flat on my stomach so that the gas bubble that replaced the vitreous (the jelly like substance filling the inside of your eye) would help keep the retina up against the back of the eye until the eye could produce enough of its own oil to replace the vitreous that had been removed during the surgery. I say six weeks instead of the eight weeks I was supposed to spend lying flat on my stomach, because it was six weeks into my recovery that I experienced my first retinal tear. A fluid/gas exchange procedure and multiple laser surgeries later, I still hadn’t regained any vision in the eye, not even light sensitivity.
When I made the decision to have them remove my left eye in January 1994, in an effort to relieve the constant pain and headaches that I had been suffering through, none of the doctors could tell me why any of this had happened to me, and worst yet, nobody could assure me that the same thing wouldn’t happen to my right eye. Theories were being floated about that the problem was viral in nature, while they couldn’t rule out auto-immune disorders even though I never presented all of the symptoms of some of the most likely culprits.
When I experienced my first major exodated detachment in my right eye, leaving me completely blind for what ended up being about two weeks, it was the quick thinking and even quicker actions of my ophthalmologist Dr. Addiego that helped to salvage the little bit of remaining sight that I have today. Dr. Addiego started an aggressive therapy of intravenous steroids, which we surmised much later on, was the main and most effective weapon for combatting the aggressive vasculitis attacking my eye. Similarly, it was my rheumatologist at the time who suspected that I might be suffering from a rare auto-immune disorder called Behcet’s Syndrome, but again I only presented one of multiple possible symptoms. Still, he suggested that we treat it as if I had the disorder, just to see if I responded positively to the treatment.
After choosing to follow this conservative course of treatment the episodes of inflammation all but stopped. Sure, I would have an occasional flare up which would require adjusting the maintenance dose of oral steroids I was taking, or in a few cases, I might need an injection of steroids into the tissues around the eye and/or some laser surgery, but for the most part, things in my right eye began to stabilize.
But the multiple reoccurrences of vasculitis, exodated detachments, and laser surgeries had taken their toll on my eyesight. What remained, could be technically described as 8/200 vision in the lower periphery of my right eye. In layman’s terms, its shoes and shit vision—as in, the only thing its good for is looking at people’s shoes and spotting the occasional pile of dog shit on the sidewalk.
At this point, I was twenty-two years old, statutorily blind, and completely lost. I now had a prosthetic left eye and the small sliver of useable peripheral vision that remained in my right eye was so poor that it prevented me from being able to drive, read text, or even recognize people’s faces. Worst yet, my dreams of becoming an architect were now as unattainable as the prospect of me getting my eyesight back, since there was no such thing as a retina transplant, while other promising medical breakthroughs like using stem-cells to regenerate the retina, or radical technological solutions like using small cameras to bypass the biologic eye and send electronic pulses directly to sensors implanted in the visual cortex of the brain, were only then just being theorized and still decades off from any practical, real world application.
This means that starting with the pursuit of my undergraduate degree from Michigan State University, and subsequently throughout the entirety of my 15+ year professional career I have had to rely on assistive technology to be able to access information, effectively communicate with others, and perform at a high enough level to be able to compete with my non-disabled, sighted peers. This has made me both resourceful and resilient, having leveraged/mastered a number of tools along the way including the JAWS screen reader (which I use on my Lenovo Thinkpad lap-top computer), Kurzweil OCR (Optical Character Recognition) software in tandem with a Cannon desktop scanner (for converting documents into electronic text), and the Apple iPhone and iPad which use Apple’s iOS operating system with built-in accessibility features such as “voiceover” which makes them invaluable mobile devices for a visually impaired user such as myself. It is my years of experience utilizing these tools on a daily basis, coupled with my unique life experience/challenges, which makes me an ideal contractor for providing this sort of accessibility consulting.
I’m now forty-six years old. By now I’ve spent more than half of my life with my visual disability, which is surreal to me. I think about something that my friend Justin Caine, founder and CEO of Beyond Our Barriers for Michigan often likes to say. “Disability is the one group that any of us can become a member of at any time”. It’s so true, but none of us really ever expect that day to come, I know I didn’t.
That being said, it’s hard to feel sorry for myself or regret any of the things that happened to me, since all of my greatest life moments—graduating from college, starting my career, buying my first home, getting married, and having kids—all happened after I became blind. And I guess that’s the point…
The purpose of this blog will be to put names and faces with people like myself, help tell the stories of creative, intelligent people who often get lost in the shuffle and unfortunately only ever end up as some statistic referenced in a government report, or just another anonymous client on an already overwhelmed agency caseload. As insane as it is to actually say the words, I think I’ve been extremely fortunate to have had experienced the things that I have, both the good and the bad. And for every me, I know there are ten other people with equally uplifting stories of pain and perseverance.
In future blog posts I hope to invite other guest contributors to tell their stories. I also hope to bring awareness to products and showcase service providers who are doing awesome, innovative things to support the visually impaired community.
And I hope to continue to do it with a little humor, and maybe blog posts that aren’t quite so long…
Chris Knapp, Managing Member
Knapp Strategic Projects & Consulting LLC
517-881-4256