Finding This NMO Community Was Like an Early Gift From Santa to My Daughter
Last updated: May 2023
There was a shift in my behavior in August 2021. From being sad, weepy, and depressed, I found this community of people with Neuromyelitis Optica and was glued to neuromyelitis-optica.net.
My daughter finally got to see the real me
First things first: I apologized to her for my behavior. For the first time in months, I spoke to my baby girl without any jitters. My anxiety levels were reduced, which was clear to her through the shining in her eyes.
Explaining NMO to my daughter
Then we spoke at length, in detail, about NMO. I started by explaining optic neuritis, which was the very 1st symptom of my NMO. Then, I explained transverse myelitis of my spine, which took my legs away. My daughter got angry again, about my doctor’s negligence. She understood that the early detection of my illness would have saved me from so much pain and agony.
The boomerang effect
I also told her that I had a chronic illness again, comparing it to a boomerang. NMO goes and then comes back. This means that I will have my good and bad days.
Appreciating my daughter's profound strength while I was battling NMO
I told her she doesn’t have to be scared, and if she feels scared, we’ll chat. I thanked her for sticking by my side and not giving up or going into her shell. I told her how lost and lonely I felt, but she couldn’t understand why.
So, I explained to her that everyone was giving me unnecessary suggestions. I wasn’t getting any answers.
The healing power of my child's love
She was the only one who held my hand and filled me with healing touches, hugs, and kisses without anything to say to me except "I love you." I told her how grateful I was grateful for her. She was my brave little superhero, and then she gleamed, jumped in joy, and said: “I am a supergirl.”
Everything I've been through, she's witnessed
My hand hurt because the nurses couldn’t find the veins for drips. They would take 5 to 6 attempts. Then there were all the ins and outs of ER visits because of the spasms. I was dependent, couldn’t walk, had leaks, and my mental health went for a toss.
She questioned me about what mental health was, and I explained it in detail. She was so delighted to learn about a new thing her instant reaction was she would share this with her friend. I was impressed.
Finding this community turned my life around
I told my daughter that it was her love that had kept me going, but I was honest enough to tell her that this website gave my mind a fresh start and a 360-degree turn.
I can see how happy my baby girl is and how proudly she mentions to our family and friends that Santa gave her an early present when mommy found this community of other people with Neuromyelitis Optica.
I got out of my shell
She could see that I started to get the answers to my questions, and she felt that this website not only saved her life, but it also got me, her superwoman, out of my shell. My loneliness vanished. I had people to reach out to, but she gets angry on this one as she feels it is not okay that others are unwell too. Her cheerful mommy was back, and we started hanging out as we used to before I had NMO.
Losing and then finding my confidence
I think out of all the changes that I was going through, the most evident change was in my confidence. My confidence came back when I accepted myself the way I am: with my assistive device, the bloating, hair loss, and most importantly, the squints in my eye because of partial blindness. Now, I am my daughter's one-eyed diva.
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