I'm Grateful for NMO, The Disease That Tried to Kill Me
Last updated: January 2023
I’m grateful for my NMO diagnosis. Reading that, you may say, "huh? Why?"
The life plan before NMO
Before I was sick, I thought I had my life planned out. I was going to graduate college with a degree in physical therapy and try to take my career in track and field as far as I could. I had dreams of being a fitness model and a Gym Shark athlete. I knew I wanted to live. I knew where I wanted to apply for jobs. I knew when I wanted to have kids and when I wanted to get married.
How could I feel grateful for my NMO diagnosis?
Before being diagnosed with NMO, I had a plan and felt that everything I had was going for me. The funny thing about trying to plan life? It’ll never go exactly the way you want it to go. On August 9th, 2017, all those dreams and aspirations faded into the abyss.
The minute I heard my diagnosis, lying in the hospital bed, it hit deep down. I knew that everything I had worked for so far and what I was currently working towards would no longer happen.
However, I kept the faith. Living with the unknown, I learned to expect the unknown, and I can’t plan for that.
The doors were slamming closed, right in front of my face
I was now paralyzed, losing my scholarship. I lost my chance to go to college because my ability to learn things and retain them didn't feel possible with my brain fog. On top of that, my sorority dropped me.
I started on prednisone, and the years of hard work I had put into my body and physical health were gone entirely. The prednisone saved my life but also gave me a lot of grief.
The sicker I became, the more I realized that my goals in life had shifted.
Seeing the possibilities that still exist
I thought running track would forever be a part of my life. And although competing in track is no longer my life, running will always be there.
Social media connected me to a true community
I was encouraged by a friend to start posting on social media to find other NMO patients like me. When I first posted on Instagram, I saw less than 100 posts under the NMO hashtag. That's the moment when I started to find my people.
The more I posted, the more other people felt comfortable posting on Instagram to share their stories too. I’ve gotten hundreds of direct messages since starting my Instagram. People would tell me how much I encouraged them to speak up about this disease, and that’s when I knew my purpose had shifted.
Eventually, I found new doors that opened for me
So many opportunities came up that I never thought I could do.
I started a foundation called Couch Pennies, became an ambassador for the Sumaira Foundation, and traveled to countless places to share my story and meet with others like me.
I’ve worked with the most amazing pharmaceutical companies that genuinely care for their NMO patients. I’ve been able to be on the patient advocacy board for all of the current medications that are FDA approved for NMO.
I’ve connected with people that I now call family. We aren’t just NMO patients - we're truly family.
Making a change and being a part of that change is now my passion in life. I would’ve never found this passion if it wasn’t for this NMO diagnosis. I’m so grateful.
The journey has been rough, but I would never be the person I am today if I didn’t go through the trials and tribulations that NMO put me through.
Growth and reflection
After five years, I am running and working out again. It may not be the end result I expected before my NMO diagnosis, But I had a choice. I could sulk in the sadness of my diagnosis - or embrace it and make a change so that others don’t have to go through what I went through.
Although you tried to take my life, thank you, NMO. You saved me.
How does social media affect your life with NMO?
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