Once again, I asked William if I could write a few things about life with Stargardt disease. It has been five years since my first symptom of vision loss.
I remain one of the lucky ones as this disease was late onset and is slow in progression. However, it has changed my life and will continue to do so.
Imagine looking straight ahead. Divide your vision into horizontal thirds. It is my central section that has been compromised. I have strong vision above and below the central area. The middle section may be compared to looking through fog. The density of the fog depends on distance and lighting.
SAY HELLO….It may take me a moment to find your face. Have patience because I am always happy to see you! Lighting and distance play a huge part in my visual clarity. You may appear as a grey outline. I have learned to always wear a smile and hope that folks will call out ‘Hello!’ should I appear to be strolling right on by without acknowledgment.
Driving my MINI…. Hanging up my keys was (and remains) difficult. The positive, William has inherited a sweet ride! I happily lend MINI to my niece, Glynis, and my nephew, Carter, to keep the engine running while William is in Halifax.
Depth perception….This was my first symptom. Gratefully, I have had the gift of time to adapt. I’m using a subtle tap method when descending stairs. Counting is a great way for maintaining focus.
Fine detail recognition…Is that a quarter or a nickel? White on white is almost impossible for me to define. Colour contrast works beautifully.
Humour keeps me going. Nothing better than a friend laughing with me when visually something has gone awry. Mom and I laugh non-stop when I am in charge of pushing her wheelchair. Michele has promised to ensure my lipstick does not travel too far beyond its borders.
Every day, I embrace all I am currently ‘seeing’. You would be amazed at the beauty we take for granted until you are aware of its inevitable disappearance.
Hope…………Currently, there are stem cell trials taking place with Stargardt patients. The Foundation Fighting Blindness is a great advocate of such research and funds accordingly.
Thank you for your continued support of Janice and her team, I2eye, as they once again take on the winds and hills to raise awareness and funding for all of us dealing with vision loss.
Love xo Denise