General Update: Life As An Adult Teenager

It’s strange to live independently and still have to message my parents to ask if one of them can take me to the grocery store or the gym. After that humdinger of a seizure a couple weeks ago, I’m not allowed to drive for the time being. If the first seizure I had in February 2024 was the worst, this one ranks a solid number two—though it caused far less emotional chaos. I scraped my shoulder enough to draw blood and it then scabbed over within a day. I expected nasty bruising, but it wasn’t as bad as I feared. The goose egg on the back of my head lasted a while, but it’s gone now.

I did discover more damage to my lamp than I first noticed. I knew I’d shoved it into the wall—there was a ding right away—but it wasn’t until the next day that my mom noticed the globe had sheared off from the bronze post. Even now, two weeks later, I discovered a broken piece of glass still sits inside the globe; I vacuumed up shards today that I hadn’t seen before. I’m hoping there are no more belated discoveries from this seizure, mainly within my own body.

The poor thing. It was my grandmother’s lamp,
several decades old. In a matter of seconds, I bust it in
multiple places.

After the seizure, I reached out to my neuro-oncologist to see about moving up my quarterly MRI. I was slated to have it next week anyway, so it wasn’t a giant leap to adjust it by a couple of weeks. I had the MRI this past Thursday, which showed that the tumor is stable and showed no signs of growth. I had asked if there were any additional imaging we could do that would help identify any potential issues. The radiologist indicated that given the kind of imaging we do for my tumor anyway, he would be able to see if anything significant happened to the back of my head. 

My neuro-onc is able to read all imaging directly, so as soon as I finished the MRI, I went up directly to his office to discuss results. I’m grateful that my doctor can do this and that we don’t have to wait around for anything. A radiologist still does a formal report, which confirmed the neuro-onc’s findings.

I did have a bit of a challenge trying to get in touch with my seizure specialist, which was rather maddening, but then through an act of God, I was able to get an online appointment scheduled with him this past Monday. This truly was an answer to pray because normally this doctor is booked five and six months out. I was praying about it late last week, just asking God for there to be an opening to have an appointment with the doctor as I had a lot of questions for him that I wasn’t readily getting from his staff via MyChart. 

I jokingly wore my bicycle helmet to the first
team meeting after the seizure

Miraculously, when I called, the scheduler said they just had a cancellation for (this past) Monday at 10:40 am. I was stunned. I joked with the lady, “Please push that button now to schedule before someone else takes it!” So, I was also able to meet with the seizure specialist. (Side note—I’ve called him my ‘seizure doc’ for two years now, but when I read his latest report, I saw all his titles in the footer. He is formally an epileptologist, but I think I’ll stick with 'seizure doc.' Even autocorrect thinks that word isn’t real.) I really appreciate this doctor and he’s one of my favorites, so I am incredibly grateful that God made a way for me to speak with him directly. My mom also joined me, but sat off to the side, writing notes, cueing me to ask him. Perhaps yet another moment as an adult teenager, like passing notes in school, although this most certainly is not your normal science class.

I do notice some subtle signs of clumsiness in my left hand and leg that I feel like were not there previously, but I also know my body has been incredibly tense ever since the seizure. I went to see my ‘neuro-muscular guy’—again, I don’t know what his official title is—because I felt like my neck was a mess, and I wanted him to check things. I ended up having a bit of a cry while lying there on the table, my neck hurting so bad while he massaged it and adjusted it. It sounded like gunfire when he adjusted it.

I keep telling people two things: 

1) I am incredibly grateful once again for all the ways God has protected and provided, and 

2) I am not where I was two years ago. Yeah, it’s a bummer this happened, but this has not been a descent into a vortex of grief. I am in a totally different space mentally, emotionally, and physically. 

But let the record show—I will not be asking to come off one of my seizure meds for a very long time.