Kshirja Singh
A mom to a preteen girl, and an NMOSD Warrior.
For as long as I can remember, I have been an overactive, go getter person: I loved my work, traveled around the world, am a big-time foodie and just on the run - always! I would not sit still.
It began with me losing one eye, as doctors failed to detect Optic Neuritis in June 2021 and by Oct 2021 things worsened. I lost bladder control and eventually became 95 percent paralyzed from the waist down. On November 9th, 2021, I was diagnosed with Transverse Myelitis. Within 5 days, I was told that I am AQP4 positive. I have NMOSD.
My whole world came to a standstill. Doctors in India, where I live, experimented with medication on a fortnightly basis, as they were clueless about what they were dealing with. I was given medication for Multiple Sclerosis, epilepsy (for spasms) underwent various MRIs, and changed 3 doctors before the right line of treatment actually started.
During the initial 4 months, I constantly thought that I would never see my daughter grow. I thought I would die at any time let alone ever walk again. But shout out to my baby girl, who is an inseparable part of my journey and helped me through distressing moments. She stood strongest out of all of my family - it's so unbelievable. My family told me I wasn’t sick at all. Still I was going through a lot of emotional physical mess and being confined in four walls with no information made it so much worse.
There is a saying that there is always a light and the end of the tunnel. My light came when my dad pushed me to look for resources and communities across the globe. My search ended with finding this community, which came as the biggest blessing. It changed my life. My isolation vanished. I accepted the new me, and that’s where the healing began. I am so grateful. I found new hope, I found new me.
I live in India, and people are extremely judgmental towards me - partially because I have loads of tattoos, I am a sharp dresser, I squint, and then post recovery I now "wobbly walk". But they are unaware that I am partially blind. I have hidden illness. Initially, I felt a need to explain but now I don’t care. NMO has layers to it, to a point that its draining. So I have eliminated all the negative elements in my life. I try to see the comical side of my illness as the reactions are priceless. I am creating memories with my daughter. I live in the moment because you never know what the next one will bring.
When I read beautifully written articles from our brave and courageous warriors, they inspire me. There is so much you can take from them. I am passionate about being there for someone. One comment, like, or message, simply to let them know that though I don’t feel their pain and I can’t be with them on their journey, they don't need to feel isolated. I want to pay it forward because the support that I've received from the members of this community has truly saved my life. Thank you all for being there.
Hey, I am Kshirja, and this is my journey...
Click here to read all of Kshirja’s articles on Neuromyelitis-Optica.net.