NMO in the Eyes of a Child
As an NMO sufferer, we all too often feel like we are going through this disease alone. We tend to think that since we are the ones that are suffering, no can possibly understand what we may be going through. However, chronic illness has a significant impact on our loved ones even when we don't see it.
My condition was affecting my daughter
It broke my heart to realize that my daughter had a story to tell when it came to my battle with NMO. She made a point to tell this story in an essay for an assignment in one of her classes. I was deeply moved, and I'd like to share it with you.
NMO Journey written by Adejah Green, my daughter
"As far as I could remember my mom was always sick. Even though she was and still is a very hardworking person, there were always health problems going on that never seemed to resolve.
My mom first got sick when I had just turned five on February 14, 2013. It was so abrupt. I remember her throwing up constantly and not being able to do anything because every time she stood up she couldn't even keep her balance. She got so sick to the point she lost 20 pounds. I recalled having to constantly go to the hospital with my family to find out what was wrong with her, but no one could figure out anything. I thought that doctors knew the answer for everything, but at a young age, I realized that was simply not the case. We went to several doctors and yet, nothing so I tried to find out for myself. I didn't really understand anything happening at the moment so the only conclusion I came to is that she was always sick because that is just what happens to women."
Getting closer to a diagnosis
"Finally, 2 months later, my mom got diagnosed with BPPV, a form of vertigo. I was relieved that someone knew how to help her. Years passed and we ended up moving to Washington state. My mom worked hard and it was almost like she could never escape her job. Outside of work she had her moments where she would get dizzy and fall. We blamed it on the vertigo and it became normal for our family that she was always a little sick. After she got sick the first time she was left with involuntary jerking in one of her eyes. We should have known that that was an indication of something more than just a form of vertigo that only lasts a few minutes.
When living in Washington, my mom would constantly get migraines so bad to the point where she couldn't stand light. She always had these problems here and there, but it wasn't too bad. After four years, we moved to Houston, Texas. Everything seemed fine and my mom continued working especially hard. On February 12, 2020, my mom kept coming home from work indicating that she was nauseated. This went on for a couple of days before this situation took a turn for the worst."
Another episode, we've been here before
"She first had thought she got food poisoning, but the sickness just didn't stop. I was hoping she would feel better when my birthday came around, but she was still sick. She reverted back to aggressively throwing up constantly and this time instead of 20 pounds, she lost 40. She was having nerve shocks and started having abnormally aggressive hiccups. This made me extremely nervous as I noticed that this wasn't new. She had gone through this already and it was hell. For a month she was back and forth to the hospital and at the same time, COVID just had an outbreak in America. Still, it was difficult for doctors to find out the problem with her. She was tested for so many things and it was all negative. Everyone, including herself, thought that she was going to die."
7 years to a final diagnosis
In March 2020, my mom got diagnosed by the Mayo clinic with a rare disease called Neuromyelitis Optica. She was positive for the cell that some NMO cases may carry. After we moved into our new house, she started getting progressively better and started walking on her walker. She then moved to a cane and began working five days a week. Throughout this process, I noticed that it's not just progress. It progresses and regresses constantly. My mom is now in a wheelchair due to muscle spasms, which is a common symptom of her condition. My mom will be getting surgery for a baclofen pump that should help her to start walking again. This journey continues and I wish her and our family the best and progress from now on."
How did Adejah's story make you feel?
Do you feel guilty when you need to rest?