Facing the unknowns of NMOSD prompts a major life change

With an unpredictable disease, I must live life to the fullest — now

Jennifer van Amerom avatar

by Jennifer van Amerom |

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If only I had a crystal ball that told me exactly how much time I have left, I’d know if I could spend my Sunday on the sofa or if I’d need to plan my dream trip to Indonesia and get on the next flight.

When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), the internet told me I likely had only five years left. It’s now been over 14 years, and I continue to live a full life. I’m grateful the internet was wrong, and not a day goes by that I don’t appreciate my life. NMOSD has taught me this much.

Yet, I can’t stop this nagging feeling that I need to accomplish everything on my to-do list before life with NMOSD gets harder. I need to pursue that big corporate job now. I need to take that big trip now. And I need to be intentional now about whom I’m spending my days with.

It’s widely known that people with rare diseases like NMOSD often face financial hardships. Despite my professional success and supportive spouse, my family has recently begun to experience financial strain. While we can implement lifestyle changes and make things work, this urge to live my life just won’t go away. I had to ask myself and my family: “What do we want? What would we accomplish by making these lifestyle changes? How do we define success?”

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Approaching health setbacks with a mindset of ‘progress over perfection’

Many nights I’ve worried about a laundry list of concerns, my health included. I’ve spent days trying to meditate so I can define what happiness means to me. Some days I sit and cry because I feel overwhelmed by the unknowns.

When you don’t know what to do, sometimes doing nothing is the right answer. Problems tend to work themselves out over time. But at other times, you need to do a complete overhaul, shock the system, and start over.

Making room for new possibilities

As a family, we decided to do the latter, so we’re selling our home, downsizing, and then we plan to travel. It’s a bold move, because we have no idea what’s on the other side, but we’ve recognized that we’re in a rut, doing the same things day in and day out. Yet time is finite.

My 12-year-old daughter, Sophie, is getting closer to leaving home to attend college. I want to see the world with her before moving around with NMOSD is more difficult. I never want to be a burden to her or anyone else in my family.

As I walk our dog, Magnus, I find myself on the verge of depression while trying not to love the neighborhood we currently live in. I will miss our picture-perfect backyard that has taken over a decade to get just right. I’m proud of what our family has accomplished together. Yet I recognize that this is all ego. Society tells us that success equals a happy marriage, children, home ownership, fancy cars in the driveway, and trips to post (aka brag) about on social media.

The rules are different when you have NMOSD.

While treatments have changed the prognosis for many NMOSD patients, the reality is that disease, of any type, is unpredictable. Many factors can affect its course, including happiness — and that’s something I can control.

I’m terrified that we’re making a mistake selling our home, but what’s scarier is the thought of never accomplishing the plans we keep saying we’ll do tomorrow. Ripping this life bandage off is difficult, but I’m excited to see what lies on the other side. There are new possibilities now that didn’t exist yesterday. While I’ll never know exactly where I’m at in my life, I do know that I’m going to make the most of it.

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.


Oyin avatar


I’m always happy to read your educational and personal experiences. I’ve only been diagnosed 6 years though suffered much before the diagnosis was finally made. I’m presently on Rituxan infusion every 6 months but my neurologist wants to extend the frequency as it wipes out my IgG. This also has me worried about traveling cos I’m afraid of been sick while overseas. I have been looking forward to traveling when I retire but now that I have time to do it, I’m a little bit worried. Do you have suggestions on other treatment options or what I could do to boost my immunity. Thanks for your writings.


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