Posted by: The Sumaira Foundation in MOG, Patient.e, Voices of NMO
I have played tons of sports and never went to the doctor unless it was for a sports physical. I found joy in all of life’s beauties but I really fell in love with running. I joined as a sophomore and not only did I have a passion for it, but I was quite talented. I loved track so much I decided I would accept an offer to run in college. I had a pretty good freshman year but my sophomore year I was determined to break record.
Upon returning to school, I was weightlifting and running to pre-train for track season all summer. As I packed my bags to return to school, I decided to take a last minute trip with a friend. When I landed in California, I was struck with a stabbing pain in the back of my eyes. I ignored it and tried to enjoy my trip; it got progressively worse. I took any kind of aspirin, migraine pacifier, and pain killer I could find. On the last day of the trip, my left eye became so tender to move.
On the flight home, I pulled out my book to pass time. Just keeping my eyes open was a challenge. However, I noticed something way worse was happening – the words were coming blurry. I was in extreme pain all night. I couldn’t take it anymore; the following day, I went to the emergency room. I was given a migraine cocktail that put me to sleep for a few hours and sent home. The vision was going in and out and the pain persisted. The next morning, I woke with even worse pain and went back to the emergency room a second time. The doctors were concerned about my blood levels so they performed a spinal tap after which I was sent home to wait for the results.
The next morning, I couldn’t move my left leg and I physically couldn’t use the restroom because of the numbness. My mom rushed me to the ER. They admitted me and did any and every kind of test, MRI, and scan you could think of. This went on for two whole days while I sat there as a medical mystery. The doctor walked in an uttered the most bizarre pairing of words I had ever heard:
As soon as I was diagnosed with NMO, I had a surgery to install a port that attached to a vein connecting to my heart. In an attempt to recover my sight and regain mobility, I underwent five days of plasma exchange and blood transfusions and IV steroids. This was literally my worst nightmare – I was a runner and I couldn’t run, let alone move.
It has taken 10 months to fully walk to the capacity that I have today. I still have a very long way to go as I have not ran a single step in over a year. Unfortunately, I had to take the year off to deal with all of this. Everyday, I struggle with sight, mobility and coping with my spinal cord injury.
NMO is so rare and I was in utter shock that it chose me. At 20 years old, I am unable to drive, live on my own, and sometimes even walk because of my spinal cord injury from the attack. I went from living my best life in college to being told by doctors that I WOULD NOT run again. What they don’t know is that I will never give up fighting this terrible disease. It has taken too many good people and I refuse to give in and I will never stop raising awareness!
