My Honest Letter to NMO
Last updated: April 2022
I’m wondering why I was chosen to be a victim of such a horrific disease. I know I’m a strong person, both mentally and physically. But I’m tired of fighting for basic human biological rights. Ever since I was diagnosed with NMO I feel violated, my soul has been ripped out of my body, my body crushed down to crumbles, and my spirit blowing away from me.
Always expecting the unexpected
My mental stability has been tested; my brain is fried. It's been fried from trying to come up with solutions about how to live this unpredictable lifestyle with you, NMO. I have no type of health stability and it’s getting tiring. I can’t even plan for things ahead of time because I don’t know how my body will react or what circumstances will be for that future moment. It’s been difficult dealing with the unknown and expecting real results.
Is it me? Am I crazy?
I often question my sanity and if I’m crazy for even questioning it. As a young woman, mother of two, university-educated person, I question the changes that have happened in my life, which were not my fault. Or were they? After all, it was my own body that attacked itself, so is this disease my fault or, is the world I’m living in to blame?
So many questions
I have loads of questions in my head and not enough answers. Then again, I wonder, "if things were always easy what is the purpose of going through a life-changing obstacle?" Yes, I know we are supposed to grow and evolve from changes in our lives, but it seems like I don’t even have the time to process the changes. I feel like I’m not given a chance to take a step back and analyze what my next move will be without getting a new symptom. I almost feel like a voodoo doll being thrown around without a chance to rest.
I feel so much at once
When I was first faced with a diagnosis of NMO, I had no clue that I was confronting an unpredictable lifestyle. At the same time, I had emotions deep inside me that I didn’t know existed. I was unaware that I could feel relieved, sad, happy, anxious, mad, excited and so many more emotions at once. I’m not bipolar, I'm just human.
Part of me was relieved
You may be wondering when and how can feel all of this at once. I’ll tell when; when you finally get a correct diagnosis after years of stumbling while walking, peeing my pants, and falling everywhere without reason. It was a sigh of relief when I finally knew the real reason why symptoms like these kept happening to me. It’s also frustrating on so many levels because it’s the beginning of a long journey that I was not prepared for.
This isn't a "thank you"
In all this mess NMO has put me through, I’ve learned to acknowledge what it has done for me. I’ve accelerated my maturity level in all types of ways possible. I acknowledge NMO for making me realize what is really important in life. I acknowledge NMO for taking materialistic wants away from my list of desires and showing me the importance of real-life values. I acknowledge NMO because, at a young age, I know the moral of my life story and I’m able to show it to my children, so they grow up being productive, empathetic adults in society. I acknowledge NMO for showing me the value of time and spending it correctly with my loved ones. I acknowledge NMO for making me realize who truly was or is a friend. I acknowledge you, NMO, for revealing the truth about my relationship with my husband. I acknowledge you for allowing me to parent my children with a different light and perspective.
NMO, you’ve opened my eyes to what no other experience could have done thus far and for that, I acknowledge you but don’t thank you.
I promise, I understand
For anyone else feeling frustrated during this process, just know that the NMO community and I get it. I promise that I truly get everything you’re going through. At times it might feel like you’re going crazy or feel alone because this subject is not very relatable due to the rareness of this disease. But trust me, it is relatable to the right people. Find what makes you happy and do it. Don’t fall into the spiraling drain of depression because you are so much more than a person living with NMO. It’s ok to acknowledge your feelings but move forward with a positive foot forward.
What would your letter to NMO look like?
Has NMO impacted your ability to keep a job?