Hi all - Caroline here. 👋🏻

Today marks two weeks of being seizure-free. 🎉🎉🎉

This is the longest span - by a long shot - that I’ve ever gone without a seizure. The surgical team said that seeing success this early is a huge win, and that I can most likely stop waiting for “the other shoe to drop” - that is, I can most likely stop waiting for a seizure. It may take me a bit to adjust to that, but it’s a relief to hear (that’s an understatement!).

While I am so happy the surgery was a success, recovery has been a bit of an uphill battle since returning home. In the days following, I developed Neuropathy and Neuropathic Itching on the entire right side of my body. This means I have irregular-to-little sensation on this side of my body, am extremely sensitive to temperature and pain, and have an itch with no relief all over. As the surgical team explained it to me, the Neuropathy is caused by displaced fibers in my insula, the part of the brain where they conducted the ablation. While incredibly uncomfortable and strangely painful, I’ve been assured it’s temporary and I should fully recover in a couple of months. 

Other than that, dizziness has made driving and screen-time tough. I am finally able to read a bit again. Visitors have been an extremely welcome relief in keeping me company since chit chatting is about the extent of my skills and hobbies right now. We are so thankful for all of the homemade meals, thoughtful presents, and time taken out of everyone’s days to make us feel loved and cared for.

Nat and I finally popped open the champagne bottle (Disco DIY-ed by Nat for a party she threw for me before both surgeries)  for finishing both surgeries on the one-week anniversary of being seizure-free. While it’s easy to feel a bit discouraged as I heal, we are looking for and celebrating the silver linings, and each seizure-free day, as they come. My Oura Ring is absolutely thrilled at the quality of sleep I’m getting, as am I!

Next week I’ll start walking outside and reading. In a few weeks I’ll be driving. Hopefully by May the nerves on the right side of my body start behaving, and by June I’ll be working. It may be a few months before I’m feeling like myself, but to go to bed each night without dread is something I will never take for granted. To sit in the crowd of a show without fear I’ll need to run for the exits is surreal. To think I may finally be free of this is a gift.

This week we saw famous author and psychotherapist Esther Perel at the Wang Theater. She spoke for a minute on resilience through uncertainty, and how it’s not something any one person is born with, but instead it’s built. More importantly, she believes it’s not built alone, but through your community - in the way each person in your life uniquely shows up for you and makes you that much more able to get through your struggle. Every video, note, piece of mail, text message, gift, meal, phone call, hospital visit, house call, and minute spent by my side has made me resilient enough to get through this. Without any of you, I wouldn’t have been able to do this. So thank you.

Love, Caroline 💕🧠

(You know the drill - scroll for pics!)