Recently, my daughter asked me a question. She wanted to know what one thing bothers me the most since losing my vision. One thing? Is there just one thing? I thought about it and this is what we talked about.
We talked about not being able to drive. Not being able to drive them, (my kids), to school, gymnastics, soccer, or whatever else strikes my fancy. I wish I could go to appointments or run my own errands based on MY schedule, instead of someone else’s day or the local bus schedule.
We talked about not being able to read things. Not just books, but recipes, price tags, sizes, labels in department and grocery stores, or OTC and prescription bottles. Reading is a part of so many tasks in everyday life.
We talked about how people don’t always trust me. Can I be trusted about what outfit looks great? Sometimes. Can I be trusted to follow a recipe? Sometimes. Can I be trusted to arrange things in my house? I say, Yes. Well, for the most part – I mean, it is MY house. And if I arrange things, I will know where the heck they are! I have so little control over my life. I want to control what I can.
We talked about what really bothers me beyond the driving, reading, and trust. It’s the “loss of control” I feel. I can’t control being a diabetic, but I can control (to varying degrees of success) my blood sugar level. But, Lebers Hereditary Optic Neuropathy (LHON) leaves me no control over what I see. Sure, I can magnify everything, but that’s not me. And as a result, I can’t drive, and I can’t read without magnification, voiceover, an assistive technology app or device. And don’t even get me started on my color perception issues. That also adds to the lack of control.
So, it’s really not just one thing. I think the loss of my independence as a fully sighted person would sum it up. As that is what most often comes to mind.
Dena is a wife and mother living in Jacksonville, North Carolina. She started losing her vision in August 2015, right about the time she was turning 40. After a very long medical mystery tour of doctors and specialists, she was finally diagnosed with LHON via a DNA blood test in April 2016.