How NMOSD magnifies my anxiety about time passing too quickly

The end of summer brings up difficult emotions for this columnist and mother

Jennifer van Amerom avatar

by Jennifer van Amerom |

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Even though summer isn’t officially over yet, it already feels like the end. This year, I’m feeling a bit emotional about it, and I’m sure my neuromyelitis optica spectrum disorder (NMOSD) has something to do with that.

Living with NMOSD has made me hyperaware of the effects of aging. Combining a progressive disease and lapsing time doesn’t yield positive results. What most patients are afraid to ask, though, is, “How much time do I have left?”

If the pandemic has taught us anything, it’s that time is not infinite. Many of us also learned to appreciate the extra time with our loved ones, though NMOSD had taught me years earlier not to take anything for granted.

This summer, I felt a certain closeness to my family, so I’m taking the return to school rather hard. For a while after the pandemic hit, everyone else seemed to appreciate family time to the same extent that I did. I felt less alone and enjoyed not having to explain why spending time with loved ones was so important to me.

But as summer passes and our family time dwindles, I find myself feeling increasingly anxious.

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Trying to recall my day, every day

My daughter, Sophie, recently started sixth grade, and I wish I could freeze time. As a mom, I know my brain is trying to take a million snapshots of every moment.

At night, I try to recall as many of these memories as I can, but the second my brain fails me, I start to panic. I try to calm down, telling myself that the brain fog is just fatigue setting in, which is normal at bedtime — but deep down I know it’s my NMOSD causing chaos.

It’s always the little things that get to me, like when I can’t remember the name of an object or person or how to spell a simple word. The brain fog isn’t temporary. Some days, trying to remember how to spell something might take a couple hours unless someone tells me. I lack patience with myself when this happens.

I want to keep my brain healthy so I can remember every moment, but that’s difficult with a neurological disorder.

What now?

With time passing so quickly, I feel anxious about all the life I still want to live. It has always been my goal to visit Indonesia and see the compound my father was raised on, and to share that experience with my immediate family. I want Sophie to understand her roots and what it took for my parents to leave their home and never return. I also want to take my daughter to Norway, where she has roots on her father’s side. There is so much I want and need to teach Sophie — and I know that includes things I haven’t even thought of yet.

Time is a gift that patients never take for granted. It adds an appreciation to life that others don’t often acknowledge. Yet time can also be an enemy.

As the warm weather slowly turns colder every night, I ask myself, “How do I get out of my head and live in the moment instead of being anxious about how much time I have?”

I’m still figuring it out.

How do you cope with anxiety about time passing? Please share in the comments.

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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