How My NMO Diagnosis Changed Our Family Dynamic

One would say life with NMO, or any chronic illness, will only affect the person who is diagnosed with it. In my case, that was totally incorrect.

NMO's hold on my family: My parents

My mother spent three weeks at home caring for me whilst I lost the ability to function like a normal 19-year-old. She bathed, fed, and clothed me like I was a little child. I spent sleepless nights in pain and suffering, and so did she.

She had two other kids at home but spent most of the time running around me. Later on, she admitted she thought I wouldn’t survive, and it was an extremely difficult time for her.

My father

My father has three jobs. He’s a heart patient and also diabetic. He has so many problems of his own. As soon as he saw my health deteriorating, he forgot about himself. He spent all of his time researching NMO and his money on finding things that could help me.

He would make anti-inflammatory smoothies that I could barely tolerate because my attack made it impossible for me to digest any food. He searched up diets that would help nerve pain, natural medicines, and youtube videos for ‘relaxation.’

In the early stages of my NMO, he thought it was anxiety. As an anxious person all my life, his first assumption was that it could be panic attacks. We had no clue it would be NMO.

After a hard day of work, he would visit me at the hospital with a huge smile on his face to make me feel better about the situation I was in.

Endless gratitude for my parents

My parents did everything and anything for me during this time, and I am so lucky I had them around me. I was hanging by a thread, and they saved me.

I didn’t realize how much of a toll it takes on a person when they’re watching their loved one suffer without any answers until I went through the same thing with my grandmother.

The relationship with my grandmother

My grandmother is my best friend. I’ve slept in the same room as her since I was five.

All of a sudden, one day, her health started deteriorating, and I was there to witness it all. She began to have seizures. It felt like my world was falling apart. It felt like these seizures were going to rip her away from me, and I had no control over it. I felt helpless seeing her suffer. I couldn’t do anything to make it better.

In all honesty, the emotional pain I felt during this time was worse than the pain I felt during my NMO attack.

Gaining perspective on how NMO impacted my family

That's when I realized how much of a toll my NMO diagnosis truly took on my parents. I could never repay them back for what they did with a smile on their face, even though it was like their world was falling apart right in front of them.

Gracefully accepting change

I’ve recovered from the attack, but the way our family handles things has changed forever. Our relationships are completely different from what they were before my first NMO attack.

Since my NMO attack, my family and I are closer.

My mum is my best friend. I tell her everything that’s on my mind. She is my outlet.

My dad is more cautious about what the kids eat.

We spend more time together as a family. I cherish every moment I have with them. My family tries to reduce any stress in the household because it’s a big trigger for me. They’ve become more understanding as parents by looking at life through my eyes. It cannot be easy living each day as it comes, not knowing what life has in plan for you when you have an incurable disease.

At 20 years old, it's very stressful and upsetting to carefully plan every outing because you know you’ll have to pay for it later. But having people who genuinely care for you makes a whole lot of a difference.