My NMO Journey and Why I'm Thankful
Last updated: March 2023
Why am I here? What is my purpose? Why me? Why THIS disease? What did I do wrong? What can I possibly offer this world to still be here? Why?
That inner, self-sabatoguing voice
Those were just some of the questions I asked myself almost on a daily basis. They would run around my head and never leave me alone. Taking advantage of me on my most vulnerable days when I was feeling my weakest. Is it normal? Probably not. Is it healthy? Definitely not. But they are there and I continually fight them as if they were a bully on the playground in elementary school.
My journey with NMO
I have had this disease for about 17 years now. I’ve had my share of ups and downs and everything in between. It never gets easier but I've learned to really find the best in life to keep me going but let’s be real, it’s still hard. I can go weeks and maybe months of feeling positive and upbeat, but then one random day that can all change. I will feel lost and lonely, hiding in my room away from friends and sleeping the days away until I'm up all night with my sadness.
People haven't understood me
Sometimes it’s easier to hide than face others and try and explain to them something they could never fully grasp. I’ve seen the frustration it can give to the people closest to me. They're always asking what’s wrong and why I'm being so lazy. But I could never tell them until now.
I'm ready to tell my truth
In October of 2021, I finally feel like I made my first real step forward in a long time. Slowly my feelings were coming out to people close to me and I finally listened to the advice I had been given a few times over. I was ready to be heard and ready to tell my truth about living with NMO. I truly felt it would be silly and no one would take me seriously. I’m always the funny one, the sarcastic one, and that could be an issue in my mind. Who takes the class clown seriously?
I wanted to become part of an NMO community
I had discussed my issues with a close friend who I could consider family. She also has many medical issues that she's lived with her whole life and has survived 60 surgeries. We may not see eye to eye on some things but we truly bond when it comes to living with a chronic illness. She told me about a commercial she had seen during the pandemic that pointed out Facebook having groups for people with medical issues and pointed me to some NMO groups. I listened and followed through in joining them.
I was making progress, and I felt like I belonged
After having told some of the people in my life about my NMO, and having joined some Facebook NMO groups, I considered the second step in my improvement journey to be done. In these groups, I poured my story out and people reacted in a way that I never could have imagined. I was welcomed with open arms and love. People understood the struggle, the pain, the loneliness, and they weren’t just saying they were sorry. It was a great feeling that I desperately needed.
Finding my next step
A wonderful woman, Mo Jones, who is also an advocate in this community, reached out and told me about a great opportunity to reach out to others like myself and to help make a difference in the NMO community. She pointed me to the next step in my life and that was becoming a member of this new community made for people like me who live with NMO. This was literally my answer to all the questions I had been battling.
I'm ready to start this new journey
I have a voice and a big one at that with a lot to say. So here I am today finally getting my story out in hopes I can help others who feel like there is no hope. I found hope and I found a new family that I can come to that understands what this disease can truly do to a person mentally, physically, and emotionally.
We're here for each other, and for that, I am grateful
I am so thankful this holiday season not only for my own family and friends that do everything they can to support me but also for my other NMO family. Together we can grow, learn, help, and become even stronger than ever. I feel like this disease will no longer control my life. I want to fight to live each day the best way possible and help others find that hope.
Dan's shared his NMO journey with us, now it's time for you to share yours! Tell us about your NMO journey in the comments!
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