• Hope At It’s Smallest

    My pain has been harder and harder to function with lately. As a woman who lives with chronic illness and pain, I try to not spend much time thinking about how my illness will evolve over time, it doesn’t help me in the moment… and the handful of moments I do spend imagining the future has more to do with practicality, and making smart choices in the present. My bad pain days tend to roll into one another. I have various therapies that have been really helpful, but circumstances aren’t ideal at the moment. Resources are low. “At the moment” is generous, it’s a hope-door that I like to leave…

  • Sing a little louder

    I was in church this morning and a song was heavy on my heart. It wasn’t a song sung on the stage, it was whispered in my ear by the Holy Spirit. More on that in a moment. It’s been a while since I’ve posted my thoughts on my blog, rather than my Facebook page. Some of that is due to simplicity, some of that is because my Epilepsy + EDS were overwhelming to manage. It’s always a delicate balance, how do you put that into words without sounding absolutely fragile in the process? Honestly, you don’t. And I am fragile… but I don’t need bubble wrap, I need strength.…

  • A walk in my seizures

    Recently I had an asthma attack that melted into syncope. During that episode my oxygen dropped enough that I felt extremely light headed and I had a cluster of seizures. While I laid on the couch I wondered to myself “how would I describe this sensation? Like my usual seizures, I sometimes struggle to speak afterward. So I had a lot of quiet time to just -think-. In the months I have been aware of my seizures, I haven’t spent much time feeling afraid of them. They aren’t the hard part… feeling understood and misunderstood is the hard part. Because of this, I decided I want to share a glimpse inside…