“You will eventually go legally blind.” That was the blow delivered to me 14 years ago. The doctor sounded like he was reading the Sunday paper with this news. The earth felt like it moved below my feet, yet no one else seemed to be affected. The doctor remained even-keeled and nonchalant as we sat in the sterile exam room in Oakland.
The diagnosis was confirmed through a simple DNA test. I have a defective ABCA4 gene. What does that mean? I have Stargardt Disease, a juvenile form of macular degeneration. And I am on the path to legal blindness.
At the time, this 30-year-old held a bit of a pity party and moved on. You can’t exactly wallow in the land of eventuality when you’re pregnant, working a demanding job and preparing to move into your forever home in Mt. Lebanon.
So, I looked at it from a positive perspective. I decided to take this diagnosis, learn to cope, and run with it. Most of the time, I seek refuge in the humorous. If you can’t laugh at yourself, what can you laugh at?
LAUGHTER IS THE BEST MEDICINE
- I walk the dog several times a day. Our Mt. Lebanon neighborhood is lined with abundant sidewalks and I often pass countless neighbors during my journey. Being that I can’t easily recognize faces, I often smile and wave and pretend I know who they are. On one particular walk, I was waiting for my husband to round the corner to meet up with me. So, when I noticed a tall male figure walking my way, I beelined my way toward him, trying to wave him down. It turns out it was someone who lived several doors down and probably thought I looked like a frantic dog walker hunting him down. As I approached him, my husband called me on my phone to let me know he was headed out the door. Needless to say, I conducted a swift and panicked about-face and scuttled away from the stranger. To this day, no mention of the encounter has taken place. We’ll just pretend it never happened.
- I live with three cats. These cats have a small obsession with fuzzy toy mice. Every holiday season, they score a pack of furry rodent toys that rattle when you shake them. One night I walked into the hallway and saw what I believed to be one of those toys. Since my central vision is shot, I just noticed a little black blob on the ground. I bent over to rattle it and toss it to Neco the cat. But, when I started to try and rattle it, it was squishy and cold… and it certainly didn’t rattle. What I assumed was a toy mouse in actuality was a very real and very dead mole. Apparently, my cats upped their game from silly toys to the real thing and I had the joy of trying to rattle and throw a deceased black mole to my cats for game. After a short and shocked scream, my husband came to the rescue and took over with cleanup efforts.
- If you’re ever lucky enough to exchange texts with me, prepare to be confused, amused and ready to ask for clarification. Since reading can be difficult with my vision loss, I talk to my phone constantly, which includes texts. Siri seems to think I harbor a speech impediment though. I’ll use speech to text and tell my friends that I’m walking the dog. However, what Siri communicates is that I’m boiling in the fog. My friends know me well enough and try to interpret my messages like it’s a game. Oftentimes they surrender and have to ask what I meant. If we could just come up with a Cathy to the rest of the world speech dictionary, life would be much easier for me and possibly less amusing for my friends.
COPING WITH MY VISION LOSS
Each mishap adds to a lesson learned directory tucked neatly in my head. With my fumbles and mistakes, I create ways to cope and move on.
- ·If I’m trying to identify my husband from a distance, I mentally note earlier in the day what he’s wearing, like bright blue shoes.
- If I’m unsure about a random object, either I take the chance and hope it’s a typical household item or I grab my phone and launch the magnifier app to zoom in and see what I’m about to touch.
- If I’m texting someone other than a close and understanding friend, I use the accessibility options on my phone and listen to my text before sending it.
When I started this journey, I was 20/25 in both eyes. For awhile after diagnosis, I had a donut-shaped blind spot, meaning I could still see dead center but had a blind spot in the pattern of a ring.
As time has progressed, that clear spot in the dead center of my vision has closed in and now I can’t see centrally very much at all.
The progression is expected to get to at least 20/200 in both eyes, which is legally blind at that point, but not black out blind. I won’t lose peripheral vision.
I may no longer operate the same way as most others out there, but I adapt and modify and function just as well as anyone else. This is the only shot I get at life so I’m making the most of it and the journey to legal blindness is just a passenger in my story.