It’s time for another seizure update! My current epileptologist is retiring in May, and we connected with my new doctor this past Monday. I had met her before in late November (the whole Redwood City team works closely together), so Ivan and I didn’t think the transition would be too awkward. Instead, we were excited for an extra in-person appointment since those always make communication more direct and accurate. Monday seemed like the perfect opportunity to share our current and long-term goals – and to keep raising my medication until those goals became reality. In case you’re wondering, my short term goals were 1) to not get triggered in the daytime if I’m wearing my protective sunglasses (yes, that still happens sometimes) and 2) to be able to go out after dark (currently I can’t do that at all). The long term goal was ZERO seizures per week (and hopefully no more sunglasses). I did pray about the appointment, but I wasn’t too worried since my goals seemed like no-brainers.
The great news is that my new doctor is delighted with all my progress since January. Going from twenty seizures a week to one or two seizures a week IS pretty impressive, after all (shout out first to God and then to my old doctor!). She thinks my current medications are the right ones for my type of epilepsy. That’s also a praise, since switching medications is really difficult for both my brain and the rest of my body. What Ivan and I did NOT expect to learn is that I’ve already maxed out the healthy dosage levels for all my medications. Basically, we need to settle for one to two seizures a week for the long haul. There’s no arguing with dead brain cells or a specialized type of epilepsy, but settling for anything less than ideal is the opposite of how I’m wired.
Don’t settle. That’s been my working motto since middle school at least – although I was a bit older when I finally put words to it. Rewinding back to way WAY before the accident, “Don’t Settle” propelled me to New York when I was accepted to study violin at one of the top music schools in the United States. Only three years earlier, a notable pre-college violin teacher told me my technique was so poor she didn’t know if I had any talent. Thankfully I didn’t settle for that.
After a couple of years I chose to move back to California for personal and religious reasons…and “Don’t Settle” moved back with me, too. I’m bad at both science and math but I wanted a stable job after I graduated college. The job aspiration led to my major in healthcare administration – a degree which falls under the “Health Science” umbrella. Somehow I survived biology, physics, and statistics before graduating. I also added biostatistics to that list once I started grad school. (I got A’s in everything except physics.)
My point in sharing these experiences is not to showcase how awesome I am; as a flawed human being, I am anything but awesome in a lot of areas. Instead, I’m sharing a few highs to illustrate God’s intricate handiwork in designing my life. God used all those “Don’t Settle” moments as bootcamp for the biggest battle yet: the accident. I didn’t want to settle either for life in a wheelchair or life walking poorly, so I developed an OCD physical therapy regime (think multiple hours a day 7 days a week), as soon as I got home from the hospital. A crippled left hand didn’t sound worth settling for, either. I never regained sensation (dead brain cells don’t come back to life!), but committed hand practice at home made it so functional that I sometimes forget I can’t feel it.
Naturally, I assumed “Don’t Settle” would fix my seizure problem, too. It had worked for everything else. Hearing that we’d reached the end of medication options caught me so off guard I had no idea what to do. Wallowing in disappointment felt well-earned that Monday night and some of Tuesday – until God reminded me not to settle. I might have to settle for ongoing brain issues but I did NOT have to settle for ongoing attitude issues. The first step in not settling was giving thanks. First of all, I needed to tell God, my family (and finally you all), the great parts about Monday. It was a blessing my new doctor was so excited about the progress I’ve made since January. Happy doctors are always a good sign! One to two seizures a week is certainly not the end of the world…it leaves plenty of time to enjoy fun things. Not being able to go out at night is a bummer, but at least it’s Daylight Savings Time right now. I’ve already experimented with safe daytime outings, and there are plenty more we can add to my growing list!
God’s spent a lot of time teaching me not to settle in music, school, and recovery. I guess it’s time to ask for His strength to not settle with a negative attitude, either. He knows best!
PS Super thanks if you made it to the end of this long post! 🙂