A Life Restored
When the author’s macular degeneration worsened, physicians offered cold facts, not help. She had to find her own answers.
Tim Devine for Proto
I once took comfort in sorting my mail: slumping on the couch with a cup of tea, slicing through envelope seals, scanning catalogues, dispatching item after item to the wastebasket, the shredder or the to-be-filed pile.
That ritual ended 13 years ago with the progression of a condition I had long denied: Stargardt’s disease, a form of macular degeneration. This untreatable, incurable disorder—which destroys the center of the retina and, with it, color vision and acuity—closed the door to my mailbox and a host of other activities, including traveling, watching TV, lingering over menus, watching ballet from the balcony. As my world got smaller, I feared losing my ability to work (I am a writer and a public relations consultant) and my independence.
Physicians offered cold facts, not help. Retinal specialists and general ophthalmologists alike kept reminding me at yearly eye exams: “Your vision will get even worse. You should be prepared for that.” But how to prepare was the question they never answered.
Seven years ago, I began to find my own answers. A tip from a former colleague led me to a fellow sufferer who was living gracefully with vision loss and helping others do the same. He took me on a tour of his office full of assistive technologies. As I witnessed his facility with these devices and used his reading machine to peruse a newspaper article that was invisible to me with normal reading glasses, I felt great relief.
With his help and inspiration, I began exploring what would work best for me. First he arranged for me to get low-vision glasses that now allow me to view some large-print menus and read stories to my nieces. The MaxTV spectacles he suggested let me see the CNN morning news team. My new friend then delivered a large reading machine to my home. Its ability to enhance type size, contrast and color has literally saved my career as an editor and proofreader.
I rejoiced when I discovered that I could download audiobooks onto my iPod. And I was thrilled when I found that a button on my new laptop could switch black type on white (to me, like a blank screen) to white on black (crystal clear). My laptop, I also learned, could read aloud to me and, with voice-activated software, write for me when my eyes were too tired to look at the screen. I began using a digital voice recorder to keep track of interviews and notes, releasing me from my struggle to read my “incomprehensible” handwriting.
My research continues. I’ve found a GPS system for walkers and an electronic translator that responds to spoken English with foreign phrases. It will accompany me on my next trip abroad. Not all of my accoutrements will be high-tech, however: I’ll also be bringing large-print maps—and a pair of binoculars. Not only have these lenses preserved my enjoyment of the ballet and beautiful vistas, they’ve likely saved my life by allowing me to see traffic lights before I cross the street.
By the way, I even recently reinstated my evening ritual. Today I face my pile of mail with my portable reading machine at hand, secure in the knowledge that there is nothing I can’t handle—and proud of the fact that I got myself this far.
First Person originates at the other end of the stethoscope, presenting essays and commentary from patients, consumers and other medical outsiders. Proto invites your contributions; please send ideas to the editor.