Finding Light In The NMOSD Darkness

When NMOSD entered my life, two things hit me hard. The first was the lack of information, and the second was isolation. The misinformation threw me into panic mode. When my friends and relatives came to know about my diagnosis and hard path ahead, they started ghosting me.

And the majority of the ones that did stick around, would make plans and exclude me. The friend they had in me who was funny and crazy was now a burden, and required care. I experienced behaviors that were patronizing and condescending. Even with my immediate family members. I started to feel like a piece of baggage.

Was being sick that big of a crime?

New light all around me

The funny thing about life is it works most unexpectedly. Just when I thought I was completely isolated and my mental health was at its lowest low, I found new lights all around me; my sparkle, my fireflies.

My first bunch of sparkle came in the form of this website, where I found a whole new family. There were mountain loads of reliable information. I started reading the articles written by our warriors, about their journeys and experiences. Suddenly I realized I wasn’t alone.

There was so much support given by our moderators. Working with this team gives my confidence a boost. I started writing articles and became a patient leader, and after a very long time my mental health started to improve.

My daughter's support system

Teachers

It had been six months into my illness after which the school had reopened post-COVID. During this time my daughter saw first-hand what I was going through. Even though she was bubbly and chirpy in front of me, in reality, she went into her shell and became submissive. It was also the time when her friend in our local neighborhood was not around, which made things worse. Her only solace was her painting. This is where the second swam of fireflies came to my rescue in the form of her teachers.

The third week into the new session we had a parent and teacher meet. I attended it with the help of an assistive device. Her teachers were worried about how quiet she was, she avoided making friends and was lost in her own world.

That’s when I told them what was happening to me. They were all ears. The teachers assured me that would help my daughter out and would take her under their wings.

They encouraged my daughter to open up in class, and started giving her class duty. They were kind enough not to be harsh when she missed school or was late in the submission of homework. They would time and again check on her mental health and talk to her in the most friendly way.

The best bit came when I met her music teacher and they offered her drumming. After a lot of “Mummy I won't be able to do it. I am a painter. I have stage fright”, fast forward to today, and I have a kid who loves drumming, no more stage fright. My little rockstar. Also, she has now opened up in school and has friends.

Friends

My next sparkle came in the form of my daughter’s friend. I remember the first time I descended the stairs, her whole gang rushed towards me and hugged me saying "Aunty you can walk". So I started to enjoy my evening walks because my little munchkins would be there to encourage me and offer a helping hand if needed.

One of the cutest moments was with my daughter's little friend. She was five at that time, and she ensured that I did not over-exert myself. She would make me sit by her side, hold my hand, and ask me how my day was. How am I feeling? The kids all ensured there was no obstacle on my left side (left side blind).

As time progressed and I got more balance, the kids encouraged me to play with them. It's been almost three years and now I am part of their cricket, football, and badminton teams, and we chat about movies. It’s amazing to hang out with them. Makes me feel normal and less old.

And then there are my extremely small circle of friends/sisters from other mothers. I don’t meet or talk to them but I am sure, if I need them they are there.

Kindling my inner light

Fireflies represent self-illumination, attraction, positivity, simplicity, and self-awareness, while on the contrary chronic illness throws you into dungeons. There is uncertainty of the future with NMOSD. So when these fireflies came into my life they not only brightened my world, but kindled the light in me.

I started to evolve for good. They accepted me with open arms. I wasn’t judged for my squinted eyes. Sometimes we don't realize how much support people around us need. My little girl got her solid ground both from her school and friends. Seeing her happy made me happy.

Thank you to my sparkle, my fireflies.

Question for the reader

What "fireflies" do you have that help pull you out of the darkness that can come with chronic illness?