Deana F. Decker
I received my first pair of glasses in 1983 at the age of 12. Then, two years later at a follow-up visit, the optician noticed some "salt and pepper-like" dots on my retina and referred me to an ophthalmologist. After an exam and numerous tests, she tentatively diagnosed me with Stargardt Disease, or juvenile dry macular degeneration. I then traveled to Boston's Mass Eye and Ear for further testing and a definitive diagnosis
After all this, my 14-year-old self was told it was indeed Stargardt Disease, there was no treatment or cure, it is very rare, and you may or may not go completely blind, but there is no way to know if, or when, or how much, possibly never, we do not know. Being a three-sport 8th grader with her life ahead of her, this was terrifying.
I ventured into high school playing basketball, softball, and running cross country all four years at Essex Junction High School. I joined clubs, musicals, chorus, and even graduated with honors. As a side hobby, I danced with The Green Mountain Volunteers, a New England contra dance group, and we traveled to France and Spain to participate in an International Dance Festival.
I attended Norwich University in Northfield, Vermont where I was a starting pitcher and captain of the Division III softball team, was vice president of the volleyball club, served on student government, participated in the Harvard National Model United Nations, was president of the NU Council on International Affairs, and graduated with a BA in International Studies and French in 1993. I aspired to go to law school and serve in the Air Force, but at that point, my poor vision crossed that off my list.
I then looked into working for the government in some capacity, but due to a federal hiring freeze, I, like many of my classmates had to reinvent ourselves. I chose to go back to school and received an AS in Paralegal Studies from Champlain College in 1995. I applied to law school, but my life went in a different direction.
20+ years, a move to the Hudson Valley. a marriage, separation, and two wonderful children later, I again found I had to reinvent myself. My central vision had completely deteriorated, I had been a stay-at-home mom, and little job experience. I first took some writing courses and ended up publishing two books about the history of Hurley, New York, my hometown. With the help of the State of New York, I received computer equipment and training to become a legal scopist. I also took many online writing classes to improve my skills.
Over the past 15 years, I worked as a Teaching Assistant in the Kingston City School District gaining work and life experiences. Due to the pandemic and personal reasons, I chose to leave this career and work from home full time.
Now at age 50, my central vision has completely degenerated. My corrected vision is 20/200, though I can only use my peripheral vision. I have to rely on others to drive me places and do many things.
My children are now in college, my daughter and I live in an apartment with our cat Sushi, and I work from home. I struggle with anxiety, depression, self doubt, and all the struggles a visually impaired person goes through. I have decided to create this website to show and help others who have or are going through the same things I am and have gone through.
Though my life is not where I though it would be, whose is? If I can help make your life just a little better, than I feel fulfilled.
Share this page: