Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
My life changed eleven years ago when I was diagnosed with NMO. To this day, I still have moments where I reflect back on my story and feel every ounce of emotion I felt during my diagnosis. However, over time, I have been able to adapt to my so-called normalcy after being an active teenager one day to being admitted into the hospital the next.
My story began like many others diagnosed with NMO- something wasn’t right. In my story it started out with my toes becoming tingly and numb. I brushed it off to being poor circulation. Eventually, the numbness climbed up to my calves, legs, and abdomen. Still, I set it aside and believed it to be poor circulation; I was walking – just not having the sensation of walking. Then, one day while in Spanish class, I had the sudden urge to use the restroom really, really bad and then moments later my back began to feel as if someone was splitting my spine in half with a 1,000° knife. I called my mom immediately. I knew something wasn’t right. She called a neurologist and I was seen within a few hours. He ordered some blood work and an MRI. I was able to get an MRI appointment that same day and was told by the nurse that my neurologist would have my results the following day. That afternoon my mom got a phone call from the neurologist instructing us to immediately head to the hospital.
After 6 months of several trips to the doctor’s office and even more “stay-cations” in the hospital, I was finally diagnosed with NMO. My first thought was,”what in the hell is NMO” and then trailed by the question with no true answer,
During the early stages of my diagnosis, I spent a significant amount of my spare time pulling mental files from my memory that I buried deep within my memory of all my transgressions as an adolescent. I thought somehow that I did this to myself and this was the universe’s way of punishing me.
Was it because I cheated on the Algebra test? Was it because I skipped class last week for the beach? Was it because instead of studying, I was out on the weekends drinking fruity wine coolers? No. It wasn’t any of those thoughts that troubled my racing mind. In fact, it’s still none of those thoughts that cross my mind when I reflect back. We may never know the reason why, so we shouldn’t spend thoughts, energy, or emotions thinking about it.
I’ve had so many attacks between 2006 and the present that I can’t remember them all. I’ve lost the ability to walk more than a mile without feeling winded, wobbly, or numb and the loss of my vision in my right eye due to Optic Neuritis. Nonetheless, I still wake up each and every morning to start my day on a positive foot. Over the past 11 years, I’ve learned to listen to my body, but challenge my mentality. It would have been so easy for me to throw in the towel and give up hope, but it took strength, courage, and determination to continuously fight the inner battle.
There are no stories that you can read to convince you to want a better life. You must choose and stick to that path yourself. Instead of melancholy and infinite sadness, I chose to rise above my negative thought process and begin living in a more vibrant, positive, and hopeful lifestyle. I encourage you to seek out resources that aide in the overall improvement of your health and well-being and challenge you to modify your thought process. You will have bad days, and when you have those bad days know that they will be shadowed with good days. You hold the key to your happiness; discover what brings you joy and incorporate it in your lifestyle.
NMO sucks. There isn’t anything I can say that could make it appear like it doesn’t. But you know what doesn’t suck? Your life. You may have NMO, but NMO doesn’t have you.
Published on February 2, 2017.
