Shekita’s NMO Story – Disabled yet Stronger than Ever

My name is Shekita Green and I have neuromyelitis optica. I am the mother of two teenagers, the wife of an Army vet and an entrepreneur.

In my “past life”, I was a person who was heavily obsessed with working. I don’t know what it was, but work gave me life. No one should have expected anything different. I was in a youth symphony, on a dance team, part of the National Honors Society, National French Society, Big Brother Big Sister and Leadership – all at the same time, while maintaining over a 4.0 GPA. Not to toot my own horn but I was that girl.

As I grew into adulthood, I took great pride in my growth. I started my career in the staffing industry as a recruiter and became an owner and operator within 1.5 years. Due to some life changes, I tried different options within the industry and ended up in Houston, TX.

I started a new company and realized that I found my place. The sky was the limit for me. Until one day, everything changed…

The beginning of a life changing event

February 12, 2020 – I was at work and became nauseated with a migraine and pain in the back of my eyes. Two days later, I was in the ER. I found myself at several hospitals searching for answers. Each time, I was told that nothing was found and was sent home.

The first couple of weeks of this mystery illness, I was plagued with non-stop hiccups, nausea and vomiting before experiencing strabismus. Shortly after, I began feeling an overwhelming loss of sensation in my legs, severe fatigue and weakness. I felt like I was becoming paralyzed. I also lost bladder and bowel function, had a weird vibration in my voice when I spoke, and had trouble swallowing any food or liquid. The vomiting was relentless. Not only that, within that month, I lost 40 pounds during the ordeal.

I really thought this was the end for me. All I wanted was whatever was going on to stop. So much so, I remember one day, I had had enough. I mustered up the little bit of energy I had left, got on my knees and pleaded to GOD, face covered in tears, to just make it stop.

Starting to lose hope

I kept going back and forth to the hospital every time I “reached that limit” of severe dehydration and every time, I was sent home. Even worse, the doctors were getting frustrated with me! But I didn’t care. I was relentless and determined to find out what was going on even though I was feeling very discouraged.

I wouldn’t give up and decided to see an ENT specialist. The specialist ran tests and said, “I can’t find anything wrong anything wrong within this specialty, but I’m going to tell you, don’t go anywhere else other than straight to the hospital from here.”

Terrified is an understatement to explain what I felt in that moment, but I had to know what was wrong. As soon as I arrived to the hospital, I was processed quickly, got into a room and an MRI was conducted. After few hours, I was admitted. 

Finally getting somewhere

The neurologist came in and ordered some neurologic tests including a spinal tap. I was immediately given IV steroids. Suddenly, I found myself feeling better each day after receiving the medication.

After four days, I was sent home and told to follow up with the neurologist but not before they told me, I had a lesion on my brainstem. “What did this mean?” As the nurse wheeled me out, she said to me, “eat healthy and maybe the myelin will repair itself”. I asked her, what was going on? What is the diagnosis? They only thing she could tell me was that it looks like multiple sclerosis (MS), but it’s not.

The diagnosis

I started panicking.

  • Why on earth would the nurse say that to me?
  • I pondered on the possibility of an MS diagnosis but wondered if not MS, then what else could it be?
  • Where did the lesions come from?
  • How could I get lesions on my brainstem?

It was difficult dealing with the anxiety of it all. I could not see due to double vision. I was suffering from severe nerve pain, the worst of it in my face. I couldn’t eat, sleep or walk. Playing the waiting game only made the situation worse.

Finally, I met with the neurologist. She talked to me about the tests that were ordered and the results. I was a bit out of it and had a hard time following where she was going with the conversation. I was expecting to hear what I had been hearing for the past month. Once she finished discussing the test results, she finally said to me,

“You tested positive for the aquaporin-4 (AQP4) antibody. You have a rare disorder called NMO”. 

The aftermath

After receiving the diagnosis, I spent a lot of time researching and learning about the rare condition. The attack left me in a wheelchair battling vision issues and chronic pain.

Over time, I came to terms with my reality and decided to not let NMO stand in my way of living a full life. Now, I use my social media presence on Instagram, Facebook, Twitter and TikTok to advocate and educate myself and other people living with chronic illnesses, with a focus on NMO.

I have also built a network of individuals across the world living with NMO for support. I plan to continue my work by spreading awareness, with the hope of finding a cure some day.

My advice to anyone living with NMO is,

“You may be disabled, but you are stronger than you ever have been. The harder you fall the stronger you stand.”