Last week, our Facebook status was “status epilepticus.” Here’s what happened. Chanda was on her way from the train station to her regularly scheduled neurology appointment in Boston, when a friend (who is a volunteer for the Foundation, an RN, and a sibling to a person living with epilepsy) ran across her in a parking lot, where she seemed confused and unlike herself. The friend escorted her to her appointment, where she was sent to the Emergency Room. Chanda keeps a ketogenic diet for seizure control, and her ketones had dipped a point below her therapeutic value the day before.

I got a text from the friend at about 9AM last Monday, and by 9:30, I was racing toward the hospital, where I would be until later that night, and back again in the morning. According to Columbia University, status epilepticus is: “A seizure that lasts at least 5 minutes, a second seizure without recovering consciousness from the first, or if a person is having a repeated seizure lasting 30 minutes or longer... This is a medical emergency that may lead to permanent brain damage or death.” I waited until I had all the information I could have and as close to possible for their school dismissal, to let the children know that neither I nor Chanda would be home that night ("because she needs some extra monitoring"), and what the plan would be (neighbors and friends stepping in to help). 

I stood by and advocated for Chanda when she could not advocate for herself.  What meds is she on? Was I absolutely sure she hadn’t used drugs or alcohol, or had she hit her head?  Could they try drug x, y, or z- what was her history with these? Educating health care staff about her dietary needs. Telling Chanda repeatedly where she was and why. Holding my breath for the status to end - many hours of "status." Counting blessings for the chance encounter with a friend that morning. 
But in all of that, something new: Chanda asked me to post a picture of her with her EEG for “Epilepsy awareness.” Over the past several years, she’s come a long way in being willing to talk about her journey when her journey hits very rocky patches. The outpouring of support was comforting, and it was also surprising in the numbers of people who did not understand that “status” is a real threat to many people living with epilepsy.  As for me, I worked very hard that week to keep all the systems of our health, family, and work on track, and on the weekend, I slept for 12 hours at a stretch.

Last week, our Facebook status was, status epilepitcus. This week, it is FIGHT!  Clawing her way back to full control, painfully aware that she is “out of the deep woods” but still “on the forest perimeter,” I sleep with my hand on her back and wake frequently to check if she is breathing. She wants me to. She knows. I know. And we keep fighting - for her, for us, and for our community.