self-care

Some days I feel like I’m made of symptoms. Living with neuromyelitis optica spectrum disorder (NMOSD) means navigating a body that’s constantly shifting beneath me, unpredictable in ways that defy preparation. Speaking of symptoms: One moment, my spine burns with relentless pain. The next day I’m ravenous, only…

Nothing irks me more than when a medical specialist tells me to “reduce the stress” in my life. It’s as if stress is the same as a few extra pounds of weight we can cut out with some habit changes. It imagines we can take medication for stress the same…

Europe is under an extreme weather alert. It’s so hot that certain trains between countries are not operational — the tracks are buckling under the extreme heat. This makes me think of climate in general and in particular how green space, plants, and gardening have positively affected my…

The phrase “fake it till you make it” is meant to encourage self-confidence. During many tough moments in my life, like learning to walk again, I’ve relied on this phrase. There are moments when I don’t feel good, but I’ll fake it and say I feel fine. Sometimes saying how…

Trying something new will always intimidate me. While my head might feel prepared, my body doesn’t always cooperate. This year my husband and I agreed to take in a homestay teenager who is studying dance at the same studio as our young daughter, Sophie. Sydney, our 15-year-old homestay daughter, is…

It rained the day before and after, but on the day we buried Dad, the overcast weather parted for a picturesque blue sky, complete with rolling white clouds. For mid-April, it could’ve been a cold, miserable day, matching our mood. Instead, the sun warmed us, so we didn’t need…

When I walk through the doors of Satay Sate, a local Indonesian restaurant, the aromas that hit me instantly remind me of my childhood. I first ventured there after my dad died, and I was brought to tears at my first bite. It was like they had stolen Dad’s recipes.

At first glance, many might say that our family appears totally healthy. However, my daughter Bella, 13, fights neuromyelitis optica (NMO) every day, and despite being her caregiver, I have health issues of my own. When Bella got sick in August 2017, I was almost done with the classes…

In my circle of friends, we often joke that being a rare disease or chronic illness patient is a full-time job. For me, living with not just neuromyelitis optica (NMO), but also several other life-altering diseases that require constant treatment, takes a lot of energy. I must attend numerous appointments…