NMO In The Eyes of A 9-Year-Old: Before My Diagnosis
Last updated: May 2023
My daughter was 2.5 years old when we left Australia. She, her daddy, and I returned to our hometown in India in 2016. Post that, she was and is the center of the world. I managed my job and cared for her, before my NMO diagnosis.
Life was a fairy tale
She used to tell me I was not only her Superwoman mom but also her Genie, just like in Aladdin. Just she was not Aladdin - but Jasmine. We used to hang out together, buy toys, watch movies, and have loads of fun.
I could see that my little girl was also super happy when she stayed at her nanoo nani (her paternal grandparents) place. She had friends, and life was a fairytale, even with her dad out of the picture.
When she was 6, my parents found a suitable match, and I remarried with my daughter's permission. I could see they gelled in well, and she was much happier in her new home.
But this was all before my NMO diagnosis and symptoms set in. I remember her telling me that her happiness got jinxed after Corona. As much as I wanted to shield her from things, I could see her witnessing how people were dying. It made her sad.
All of a sudden...
As if that was not enough, the 2nd dose of the Coronavirus vaccine triggered something that made my immune system overactive. There was a sudden change in my behavior.
I wasn’t a cheerful mommy anymore. I was grumpy, tired, and yelling at her. The girl who used to hug me any time was now clinging to her dad because she was terrified of me... and I was unaware of what was happening. My husband tried to reason to maintain the peace, but I was out of control.
Before my NMO diagnosis: vision loss
In June 2021, I woke up with a line in my eye. The doctors were not able to figure out what was happening. We went to the hospital, and they were clueless as to what was happening.
4 days after, the line in my eye got thicker. I was admitted to the hospital. They gave me methylprednisolone in an IV drip.
Steroid side effects
The methylprednisone shot up my sugar levels. My heart rate and blood pressure went up even further. They could have given me medication to control this eye thing and continued with the dose. But they didn’t.
Trying to find care for what I didn't know was NMO
I was supposed to get the IV for the next 2 days, but the hospital refused. They wouldn't continue because of my heart condition. I have tachycardia, which means my heart rate is always high.
The other hospitals refused to take me in too. I was at a higher risk, so it was too late, and they couldn’t do anything.
I am grounded by the strength of my daughter
Now, all the while, my girl ran from pillar to post with me and did not leave my side. She constantly told me everything would be okay, holding her fears back.
I lost my left eye, but my daughter never failed to tell me how much she still loved me, and me being partially blind did not matter to her.
Then, my health went further downhill
My health was deteriorating further, and my daughter, who was used to seeing me smile, could sense something was wrong. She grew quieter. I think she could feel her daddy’s sadness too.
Our home life went downhill, too
Her home was breaking. Because of my health, my mother took my daughter back so that she could be distracted from all of this. I wanted her to get back with her old friends.
I remember doing video calls with her. She always tried her best to cheer me up.
My sickness was progressing, and I didn't know it was NMO
My husband called my mom and my daughter in the last week of October 2021. I became very sick. I could not eat and was screaming in pain. Limping, vomiting, unable to pee or poop. Doctors said it was a tummy issue that had gone bad because I hadn’t eaten for days.
Before my NMO diagnosis: misdiagnosis clues
I saw my daughter for a week. Still sore from a medication injection and limping, she saw me laughing and behaving normally. I wanted to normalize things for her. She told me that doctors might not have diagnosed me correctly. And guess what? She was right.
4 days after Diwali (our biggest festival), I called and sobbed to her on a video call. I was petrified as I informed her that I might be admitted to the ICU. She asked me what that was, and I told her it was a place where people who are very sick go to get treated. She just smiled and said to me that I would be fine.
She came to see me on the 7th day after being admitted to the ICU, and when I got out. She told me, "Mommy, you look pale." I hugged her and cried once again, telling her I couldn’t walk and couldn’t feel a thing from my waist down. But instead of getting scared, she looked into my eyes and said, “You will be okay. You will walk again. I will make you.” And she filled me with hugs and kisses. She also gave me a get well soon card, which I have to date.
Typically, how much time passes between attacks for you?