How Neuromyelitis Optica Complicated My Relationship With Faith

Columnist Jennifer van Amerom questions her spirituality after her diagnosis

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by Jennifer van Amerom |

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If there were a spot on my social media profiles that asked me to describe my position on religion, I’d write, “It’s complicated.”

That’s because I’ve had a few too many falling-outs with my God.

‘Why me?’

I was in my early 20s when I suffered my first major neuromyelitis optica (NMO) attack, leaving me paralyzed from the bra-line down. Back then, I would’ve described myself as invincible. I knew I was hardworking, intelligent enough to learn anything necessary, and ambitious. What I didn’t account for was the ambush from my own body, which brought my life to a screeching halt. I suddenly lost the invincibility cap offered by youth.

At that moment, I found myself asking God, “Why me? What did I do to deserve this?” I started thinking through all the bad choices I’d made in my young life. My week in the hospital gave me a lot of alone time, which I filled with prayer and then anger when it didn’t help with my recovery. There was a point when I finally gave up.

I didn’t think my God was listening.

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Growing up with religion

I was very fortunate to be exposed to many religions growing up. My parents wanted my siblings and me to make our own choices about religion and faith, partly because they didn’t share the same beliefs, and partly because of their liberal approach to our upbringing.

My grandparents were Catholic and, at some point, converted to Jehovah’s Witnesses. I loved attending the hall with my oma (grandmother) because she was very popular among the other parishioners. My uncle was a Seventh-day Adventist minister. He has always been a great storyteller, and I could spend hours chatting with him about life.

My parents always let me attend Mass and religious summer camps with various friends, and when my family relocated to a new city, I even attended a Catholic school for a year. While no religion has ever been a fit for me, I would describe myself as spiritual.

Until NMO happened.

Falling out with my God was sad. Without my spirituality, I slowly lost hope. It was as if I had lost the voice of reason in my head. The world became confusing, and I had no way of calming the panic I felt in every waking moment.

From spirituality to anger

It’s been said that everything happens for a reason, but almost 13 years in, I’m still waiting to understand why I have NMO and my three siblings do not. I would never want them to deal with this disease, but my inner child is stomping her feet and screaming, “It’s not fair!”

People also say that the Lord only gives you what you can handle, but I’ve called him out on this. There are days when I’m not handling NMO well.

In the early days of my diagnosis, my spirituality turned into anger toward my God. If I were an angel, I’d be the type that falls from the heavens, headfirst, like a bright star — catching on fire and exploding upon impact.

What I realized, though, was that my anger was really self-doubt. Was I strong enough to handle NMO and everything else life would offer? I resolved that I had no other choice.

The power of prayer

I won’t advocate for or against religion, but I will say that I believe in miracles. While NMO makes no sense in my life, my God came through with the birth of my daughter 10 years ago. She is my miracle baby because she was born against all odds, conceived through in vitro fertilization after my NMO diagnosis. My God and I are all good now, although I keep him at arm’s length.

I don’t know if we’re all guided by a greater power, but when it comes to the power of prayer and illness, I don’t think it hurts to try. Some religions recite the same prayer over and over again, while others accomplish this using rosary beads. The chanting becomes a form of meditation, providing a calming effect that can help when we’re inflicted with pain.

Prayer also helps some in my life who are trying to make sense of my diagnosis. I know they feel helpless watching me struggle through tough days. Praying gives them something meaningful to do.

I do struggle with religion when it conflicts with modern science and treatment options, but ultimately, those are personal decisions we each must make.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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