Often, we are our own worst critics. It’s already enough that society can sometimes make one feel as if they aren’t good enough. Having a rare disease like neuromyelitis spectrum disorder (NMOSD) can make you feel hopeless at times.
In 2013, when I became paralyzed, I was extremely sad sitting in my bed unable to turn over on my own. I just kept going over in my head what circumstances led to me becoming paralyzed.
Should I have fought harder than I did already have for the first emergency room (ER) to keep me longer and further evaluate me? I fought and argued for the third ER to keep me because I knew I wasn’t going to make it if they sent me home. After 6 weeks in the intensive care unit (ICU) and getting sent down to the rehabilitation unit, the first thing I had to work on is how to sit up again on my own. How could something so simple be very hard?
Read about experimental therapies for NMOSD
I am so thankful that I had a physical therapist (PT) at such a vulnerable time because I felt very defeated and depressed and sad. But at that moment I kept that thought in my head. I was still in the hospital when I started having bad nerve pains starting from my mid-back and shooting down my leg to my big toe like a lightning bolt.
I remember the neurologist saying the pain was my nerves waking up, which was a good sign. I remembered being in the hospital for 3 months with intense physical therapy and then going to the nursing home for 6 weeks. I knew I would never get better with a PT in the nursing home.
I then put my feelings asides and checked myself into a rehabilitation center where I could get even more therapy. I had to remind myself to take one moment at a time. My body just went through a major shock. The only thing I can do is try my best.
I spent 3 weeks in the rehab center and on my last weekend there the PT was assessing my strength. He said to move your feet up and down. I remember closing my eyes and trying my best to imagine how it would look and feel. When the PT said “good job,” I questioned him, my foot moved? He said yes and asked, didn’t see or feel it? I let my eyes open and did it. I was so happy that one would have thought I won the lottery.
Now every visitor that came into my room I would show them my progress. It was a big deal to me because doctors weren’t sure what I would be like. Today I try to keep that same attitude.
At times I can be hard on myself. But I work hard to remember the small victories that ultimately lead to bigger victories. I feel like as I get closer to walking independently I get discouraged because it seems easy and yet I don’t know why it’s so hard. Or sometimes I doubt myself.
With that said, I look back at the progress I’ve made, and the incremental steps I took to get there. Today I’m driving again and I’m able to climb stairs. I’ve learned to remind myself that any progress is excellent because there was a time when there was no progress.