My Journey With NMO Part 3: When It Gets Dark
Last updated: February 2022
I was on top of the world and was really growing as a person. I thought I beat the fear I was experiencing and believed this disease was on a forever pause. I was wrong; very wrong.
NMO and how my life became dark
It was July 2015 and life decided to throw me off a cliff. I wasn't ready on this random day, at this random time, and at this random place. You never can be ready, especially when your good eye is about to go thru hell.
The day my good eye betrayed me
On this random day, the pain began around my left eye, which was my good eye, and I freaked out. I told my fiance and we immediately went to the hospital. Panic and fear took over as I pleaded with the nurses to get me hooked up to some liquid steroids because I was felt that I was slowly losing my vision. They weren't moving quickly enough and, after a while, I know I was coming off a bit rude. I felt as though they didn't understand and I knew that I needed them to do something so my eye could start healing. But hours went by and finally after a whole lot of back and forth I was hooked up to an IV to receive steroids. Normal tests were done like blood work and MRIs. My vision wasn't coming back though.
Home again, home again
I went home after a week's stay in the hospital to recover. I was in the comfort of my own apartment. I missed being home with my fiance and the cats. They were my comfort and strength. But another week went by with no change to my vision, and the doctors were getting nervous and I was digging myself into depression. "Was this it?" I asked myself. "Is life going to be one blurry mirror from here on?" The idea ate me up inside, but then the doctors came up with a new plan: a plasma infusion.
Hoping I was on my way to recovery
This was the first time I was ever sedated and had a procedure done that involved having a tube put into my chest and to my heart. This procedure was being done so I could receive the plasma infusion. Once I started a couple of week's long treatments, I was doing my best to stay positive. but I wasn't getting the results I wanted at the speed I wanted them. After several weeks I slowly noticed changes. It was a slow drawn-out three months of hell. I'd have really good days of feeling positive and thought my life and my vision were coming back. That feeling was rare though and every day in between was a hell filled with fear and doubt.
One day it got pretty bad
I was going crazy and spent so many days alone crying to the cats. I lied to everyone and convinced them things were fine, but they weren't. One of those days I tried to go on a walk, and on this walk, I decided to cross the street. I went up to the curb and watched cars fly by as they hit me with their wind. For a whole minute, I heard a calm in my head and started crossing the street until I heard a horn blow in my face. I stopped and got back on the curb and went home. I sat in silence trying to wrap my head around what I tried to do. I was scared but was I that depressed? Was that the answer? It never happened again and that was my one silver lining for a while.
Letting it all out
I kept what I experienced that day near the curb to myself and, one day during an argument with my fiance, I shouted it out. We fought even more about it, not to mention all of my lies about getting better. For the first time, I could tell this experience was hurting him just as much as me. I'd gotten into the habit of distancing myself from those in my life. I didn't want to burden my loved ones with my darkness but no matter how hard I tried, I was, and hiding my feelings only made it worse.
I needed time to heal
I couldn't figure out life until my eye healed. It took time; a lot of time. My eye actually took almost 4 months to heal as much as it possibly could and would. I was then at 20/2200 vision, which is where I still am today. My disability insurance through my employer was over, and I said that I was ready to go back to work again. It was the week of Thanksgiving and I was going back at the worst and most busy time: the holidays. I wasn't ready at all. The next seventeen months would be a nightmare come to life.
Does any part of Dan's story resonate with you? Tell us in the comments
Typically, how much time passes between attacks for you?