Having dealt with Stargardts since the age of 8, I now consider myself a classic model, whose headlights are stuck perennially on the low beams, yet the engine still roars and the horn always works when needed.
Growing up in a small mid-western farm town, I had no role models or experiences to guide me. Being labeled the “kid with bad eyes”, I dreaded becoming the local Mr. Magoo. Although I have never been in denial of my vision loss, I decided at an early stage to defy this situation. I simply did not want to be defined by what I could not do. Carrying a chip on my shoulder, I assertively set out to discredit the naysayers and achieve what many others claimed I could not or should not do. Based on a feeling that I had to be better to be equal, my goal was to accomplish as much as possible. As a result, I dashed and crashed through adversity.
From my view, you cannot explain Stargardts with just a few lines or paragraphs. It takes an entire book. With that in mind, I chronicled my past five decades in a non-fiction novel titled “Glimpse” and written under my pen name of D.S. Sully. Without holding back, I reveal my out of sight episodes with mainstream school, high school sports, hunting, dating, college, career ventures, and some EEO/ADA skirmishes.
At this point in my life, I want to connect with others who have Stargardts and share notes. Borrowing from an old western movie title, Stargardts to me is like “The Good, the Bad, and the Ugly”. It is GOOD because generally this eye disorder does not result in total vision loss. There is a whole lot you can achieve with your residual peripheral acuity. However, it can be BAD because it creates physical and social obstacles. And finally, Stargardts can be UGLY because you sometimes feel marooned between the worlds of those who can see fairly well and those who cannot see at all.
As someone with Stargardts, I can’t guarantee what has worked for me will work for anyone else. I’ve always been about as unconventional as you can get. After careers in five different fields, I’ve sort of retired and turned to vocations as an author and artist. Here’s how I see it. Why seek to be ordinary when you are already out of the ordinary? With that in mind, I welcome your feedback to me at: firstname.lastname@example.org.