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Lexi’s NMO Story – Shaping My Identity

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

Freshman year of college is a time to form your sense of identity, but when I started school, I thought that forming this ‘new’ me meant dying my hair blue, not being diagnosed with neuromyelitis optica… 

On the night of September 27, 2017, I stayed up all night in my small dorm room coughing, with a headache, and seemingly feverish. My bladder and lower back were in such agony that I could not breathe. I was DONE.

Enough is enough, I have been sick for one month, I want to feel normal again.

I sat up, swung my legs over the side of the bed, placed my feet on the ground, and crumpled to the floor face first. I panicked. I could not feel my legs nor did I have the strength to stand. I grabbed the jeans that were closest to me on the floor and guided them up my legs. To cover my messy hair, I snatched my baseball cap hanging on the bed post and flipped it backwards in its usual fashion.  

You can do this. Keep pushing. You will do this.

I fought through the tears of terror and frustration. I put my hands on my desk chair and pulled myself to my feet. I was standing. Slowly, I released the chair and took one step forward.

I took my keys and limped down the hallway to the elevator and across the street to the medical building. The woman sitting at the front desk in the infirmary recognized me and her face had the “you again” expression plastered all over it.  

“What can I help you with?”  She moaned like Roz from Monsters Inc.  I swallowed my tears and said in a very shaky voice, “I cannot feel my legs.”  

“Have a seat, we will be right with you.” A few minutes later the medical staff that I came to know from my previous five visits appeared at the door and ushered me to sit down in the exam room. I explained to the nurse practitioner that I could not feel my legs.

“Well, do you think it’s stress?” She dared to ask me.  I looked her dead in the eye and said no. “Well, you tested negative for Lyme’s disease, mono, and now diabetes,” after she pricked my pointer finger and a spurt of blood shot onto the glucometer, “you can’t just keep coming here panicked when you don’t feel well, the only other option we have is to send you to the emergency room.”

“Okay. I want to go to the emergency room. Let me call my mother.” I pressed the gauze tightly to my right index finger, it filled with blood. The nurse left the room and I dialed my mother but she would not answer. I refused to go anywhere without my mom by my side. The nurses made me sign a release form stating that I understood their recommendation was to go the hospital. Then, they let me out a side door closer to my dorm and I trekked back home awaiting a return call from my mother. So, I sat and read and did work until my mother called me and asked panic-stricken what was happening. 

“Lexi, can you make it to Mount Sinai Hospital in New York City?”

“On a train?”


“I can do this. I promise. Do not worry. I’m getting on the 3:48 train to New York. I’ll see you in Penn Station at 5:30.” I heard her breathe, definitely not a sigh of relief, but a sigh of her letting go and letting God.   

I packed up two bags, one with clothes and one with textbooks, because I had to make sure I studied for my Linguistics test, then left my residence hall fully expecting to be back that Monday. Walking was exhausting, painful, and extremely difficult. I had completely lost my ability to balance so I had to walk slow otherwise I risked falling. I hobbled down the ‘main street’ of campus and even took a picture for my snap chat story that said “see ya Monday TCNJ”.

I continued into the small town outside of campus where I bought myself a frozen yogurt with fruits on top; I could barely eat from the pain in my abdomen, but I hadn’t eaten in two days and I needed something to get me through this journey. Finally, my Uber showed up and took me directly to the train station where I got on a train.

I situated myself and put music on to keep myself distracted. At this point, I had not peed in about 3 days. My stomach was bloated and any pressure on it felt like someone knifing me. Every time I was jostled from my seat I cramped, started sweating, and fought the urge to cry and vomit. The pain was excruciating, I finally passed out with my head against the window.

A week-long fever dream of a hospital stay and two additional weeks filled with dropping out of my first semester of college later, I was diagnosed with NMO. A week after that, I was receiving my first round of Rituxan. To say that I am fortunate would be a tremendous understatement;

I was diagnosed, treated, and 75% recovered in approximately three months, something that is nearly unheard of in the world of autoimmune diseases.

Every day I am thankful and try to live my life to its fullest; the world and my interactions with it has become incredibly precious. 

Since my diagnosis three years ago, I have returned to school where I study Communications and Public Health, am the director for my school’s theater organization, the health and wellness intern for my college, the publicity chair for the pre-health fraternity, an officer for the Public Health club, serve on the students with disabilities and Communications Studies councils, run my own blog that advocates for people with invisible illnesses, and an Ambassador of The Sumaira Foundation for NMO representing the state of New Jersey.  

Freshman year of college did not shape my identity by means of notorious frat house basements, poor time management, and pulling all-nighters with friends. For me, freshman year centered around advocating for myself whether it be insisting that this illness was not in my head or requesting accommodations in classes.

In several ways, NMO robbed me of many important milestones, but in its place, is a family and community I never knew I needed, self-love, empathy and compassion, and a fierce streak of a warrior who will never stop fighting. 

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