Trying To Be Superwoman While Battling a Rare Disease

Devic’s disease, also known as neuromyelitis optica spectrum disorder (NMOSD), is a neurological disease of the brain and spinal cord that causes inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). It’s often mistaken for multiple sclerosis (MS) because both diseases have similar symptoms. 

I have a relapsing form of the disease. This means I go through multiple attacks, which can cause disability that adds up over time. I was diagnosed in 2019, and soon began treatment after they found three brain lesions and inflammation of my optic nerve, which carries messages from your eyes to your brain and gives you the ability to see.

In Devic’s disease, the attack results in inflammation and damage to the nerve fibers, disrupting nerve cell communication. Patients with this disease can experience blindness, paralysis, and life-threatening complications. In the beginning of my diagnosis, my sense of normalcy was completely shattered by complications from Devic’s disease: I went half-blind and still am to this day. Since I lived very independently, battling the effects of this debilitating disease was extremely humbling, and I had to finally learn to accept help from others.

I’m a public school teacher for children with disabilities, and in February during my second year of teaching, three months after my diagnosis, I had to quit my job. I felt like I had failed so many people in my life: my husband, my students, and my co-workers. 

I could no longer do what had been so easy for me, like washing the dishes, cooking, and waking up in the morning to dress myself. I was shattered — the superwoman inside me was no longer alive. Devic’s disease seemed to want me to lose all hope and give into despair, to never jog with my full strength again, to never get out of a hot bath on my own, to never get out of bed without burning feet, and to wake up every day throwing up in pain.

But I have seen all of those things, and I didn’t give into despair. And though I live with chronic pain, I know I’m a stronger woman for it. Sometimes tough situations build strong people, strong women.

Now, two years later after receiving my diagnosis and beginning my life with Devic’s disease, I am working again with students with disabilities as a public school teacher, and even taught throughout the COVID-19 pandemic.

Every morning that I wake up and enter my classroom, I feel a sense of accomplishment. I sip my coffee, looking around my room with the feeling that I made it again. I chose to do what I love, despite my daily health challenges and biweekly treatment. I chose to go through my life not allowing pain to dictate how I live. I’d rather live a painful life than not live one at all.

Living with a rare disease like mine is lonely, yes. I fight for my health every day. People may think I’m lazy or dramatic. People will give their homeopathic advice, but an arnica mountain daisy isn’t going to cure my challenging disease. People have made me feel the most lonely I’ve ever felt in my life. But here I am — living despite the battle not only with my disease, but also with people that don’t understand what I’m going through. 

I’ve learned that it doesn’t matter how bad the pain we are feeling is, either physical or mental. As long as we can still feel the love of those that love us, we will survive that pain, over and over again.

And I’ll keep going and doing the things I love with passion, grit, and heart. 

I am my own superwoman.