An Open Letter to My Neuromyelitis Optica Spectrum Disorder

Dear NMOSD,

If I could write a letter describing every single last way you’ve changed me, I could fill up a scroll. Even then, there wouldn’t be enough words to describe how, when you unexpectedly came into my life, you plowed through the path I had so delicately made for myself. 

When you first made your sneaky and disrupting presence, I thought you would go away. The way you inflicted harm on my body so quickly was life shattering. My perception of what I thought what life was about seems to have shifted into an entirely new universe. 

From the the pain and agony I felt when I first met you, to the many nights you kept me awake, and the many days that I so frequently slept through, you’ve too often been by my side, a most unwelcome companion. You changed my life and continue to make your daunting presence felt even when you’re not around. Isn’t that something? You make a grandiose appearance only for you to hide in the shadows, lurking, even when I can’t see you.

You’ve taken away everything I loved with your brutal strength. Breaking down every inch of me until I don’t recognize who’s in the mirror. I lost myself trying to find every possible reason why you showed up in my life and how you got here. But still, here I am with no answers.

I never knew true pain until you came into my life — the long days where I am consumed by your grasp and unable to move. And I think of the destruction you’ve caused. Although I may be in remission, you have caused a domino effect. Now, I have a body that’s confused and constantly struggling. 

And have you seen what you have done to my social life? You’ve taken my youth and forced me to grow up far faster than my peers. So, naturally, I was forced to break ties with those that are unable to deal with you. I understand, it’s not easy accepting you as a part of who I am. It’s been four years of me trying to find who I am and what my purpose is. I’m still looking and searching to find my place in this world, with you attached to my hip. 

What about you taking away the person I was? My whole being crumbled when you came. I thought I was a strong individual, but when you came you showed me how strong I had to be and how strong I really was. I thought I was weak, but you showed me just how weak I am not. 

The thing with you, though, is I deeply appreciate everything you have shown me, but I wouldn’t wish your presence upon anyone. 

Maybe I’ll never know the motive for your path of destruction, but I understand.

I understand why you chose me, despite the life-altering events that have come of you. Neuromyelitis Optica Spectrum disorder (NMOSD), I loathe you entirely, but thank you.

Even after all you have put me through, I accept you and embrace your presence in my life. I don’t do this to empower you, but to empower me. You gave me the courage to speak my feelings, both physically and mentally. You gave me a voice when I had none. You are what has pushed me most. With every adversity you’ve placed in my way, I can feel you pushing me to be the best version of myself.

Most importantly, NMOSD, you’ve given me purpose. You’ve also brought me family. So many people experience the darker side of your actions, but it brought us together. Now we stand together to fight against you. 

Through the ups and downs of living with this disease, it’s given me purpose. I spend my days not only advocating against NMOSD, but connecting and having friendships with those that share my same experience. NMOSD becomes a lot less scary when you have a sense of community and support. The love I receive is far greater than any negative emotion I’ve encountered.