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.
The loss of being able to read really hit me, especially bottle labels and price tags. We sighted people can’t begin to imagine the many losses people with LHON experience, so I really admire your inner strength. You are an inspiration, Maria.
Hi Sheryl… THank you. You have watched me go thru all of these things for a few years now. We take so many tasks for granted when we have full sight. But, as you know…. we take a lot of things for granted not realizing that life could change in an instant! xoxo
Dena, I read your post when you first wrote it. I was glad to read it again today – you wrote what so many in the LHON community deal with. Loss of control and, to some extent, loss of independence. Thanks for sharing your thoughts. Hope to see you at the next conference. ❤
Thanks for the comment Susie!! I will make sure Dena see it, if she hasn’t already!! xo