Last updated: June 2023
I scroll through this website every day, seeing pain in different types and forms. People will talk about life before their NMO took over.
It's time to talk about what mourning means to people with NMO
Something that we don't talk enough about in the NMO community and the chronically ill community is the fact that we never had the time to mourn. Most people connect mourning to the death of a loved one. Has anyone ever talked about mourning something that’s still alive?
The grief of losing (or never having) our health due to a chronic illness
Many times, our health took hold of our lives so quickly. We didn’t get the proper time to mourn what we once had - our good health. Those that have been sick with NMO or other illnesses for most of their lives are left mourning something they never had a chance to experience. Living a life that society dubs “normal.”
Mourning the energy I once had
The death of my old life is, by far, the most tremendous pain I've ever experienced. I worked out 2-3 times a day and still had the energy to go live a young person's life. Now, I must save up all my energy if I want to walk around Walmart or to the bank. I get tired - every second of every day.
How can a chronic illness like NMO change you?
Sickness changes a person. Not only do you have to adapt to a whole new life and mindset, but you have to meet the new person that this illness forcefully created. You find yourself learning who you are all over again.
I can't do the things that used to bring me joy
I mourn over how I could dance without being in pain. I mourn over the active life I lived. I mourn over how carefree I used to be.
I couldn't recognize myself
After getting sick, I couldn’t sleep for a long time. I would sit up at my vanity and just stare at myself in the mirror. It was like staring at a stranger. Who is this? Where is the old me?
The old me was gone, and I stared at a stranger.
Many of my doctors told me I will likely take medication for the rest of my life. They said I will probably be in pain most days that I'm alive.
But I couldn’t accept that.
So, I decided to learn about the stranger that was my new self. She held her own beauty, in a sense. No, the circumstances weren’t the best, but I got to learn my unique talents, like art.
My priorities shifted. Although I'm young, I now must carefully evaluate my choices. I never did this before my NMO diagnosis.
My likes and dislikes also changed, and I started to enjoy learning what I wanted and needed in life.
My new perspective
Let me ask you, how many times in life do we get a fresh start at who we think we want to be - versus who we're meant to be? I took this opportunity by the horns and created the most genuine version of myself.
I'm no longer the person I was before NMO took over. In fact, I am my truest and most authentic self, and for that, I am the most grateful.
Has NMO impacted your ability to keep a job?