How NMOSD Vision Loss Has Changed Me

I have always been a mover. Sitting still for too long makes me antsy. Even before I was diagnosed with NMOSD, I had other illnesses that caused disability, but I was still on the move. I volunteered, found part-time work, and even did daycare just to feel like I was a part of something. Now, NMOSD has stolen a little piece of me.

Getting sicker

I've always been a mover, shaker, and a worker. I remember 50–60 hour work weeks or working multiple jobs at a time because one thing about Mo was that she was a go-getter, and she was going to work and work hard. I can probably say that my ambitions may have added to my health issues with all the high anxiety and stress, but I digress. I was the person that my job could count on to do overtime if it was available, especially if there was a special occasion coming up.

But the sicker I got, the more I changed.

A prisoner of my pain

I didn’t realize for a while that some of the symptoms I was experiencing were related to NMOSD because I didn’t even know that I was living with NMOSD until I was diagnosed in 2020. I started to become a bit of a recluse and my social anxiety got worse. I would find reasons to not go out, or the pain would be so bad that I didn’t want to. A lot of the time, just anticipating the pain coming kept me prisoner, and to be honest, it still does a little to this day.

Vision loss in one eye

When I lost my vision in one eye, everything truly changed for me. Now, if given a choice, 9 times out of 10 I will make the choice not to drive. But at least I had the option to choose.

When I lost my vision in one eye, I didn’t drive at all for 6 months. The sun hurt my eyes or would cause a migraine so bad I couldn’t focus. I was afraid to drive if my children were in the car because I didn’t want to risk hurting them.

The biggest difference was that I stopped driving at night. How am I supposed to drive at night when I can barely see in the day? Not driving at night has really killed any social life that I still have because unless someone comes to pick me up, or my husband drops me, off I won’t go. I don’t even like to ask because I feel like a burden.

How NMOSD vision loss changed me

There's that saying: “you don’t know what you’ve got til it’s gone," and it has never been a truer statement than it is for me now. Before my life with NMOSD, I didn’t really care about not driving. I still had the option to do it, but sometimes chose not to. I haven’t had any doctors tell me that I can’t drive now, but I have tried; for my safety and the safety of others, I just feel like it's not a good idea.

What NMOSD stole, my vision, is irreplaceable. I feel a little less of a person because of it.

What is the most significant way in which NMOSD has changed your life?