It’s been a good long while since we’ve sat peacefully in the living room after Jesse’s 8pm seizure meds, everyone laughing together, talking in the way people who are comfortable with one another do on a cool fall evening. It feels peculiar and delightful, like when you get a surprise package in the mail from an old friend you haven’t seen in a while just because they found something that reminded them of you.
If you are new here, then you should know a few things:
1. Jesse (my husband) has a slow-growing, terminal kind of brain cancer.
2. He should have died three years ago when his tumor made itself known to us as a mass overtaking most of the left side of his brain.
3. He has had a lot of seizures, sometimes dozens a day, and he has been on a LOT of medication because of them for the past three years. These medications, though necessary for his survival, have caused him to live alongside a tremendous amount of anxiety and fear, and kept him detached from who he actually is. These side effects are much worse after his 8pm dose, because his brain and body are fatigued from the day.
Now that you are all caught up (sorta, you can begin here if you want to read the whole story)…A few weeks ago, we started talking through adjusting his meds again. Being three years out of his initial brain surgery has given him a sort of stability, which has afforded us the ability to differentiate more clearly between issues caused by his illness and issues caused by side effects from medications. We’ve known one of his seizure meds causes anxiety, and have been unconvinced it was helping with his seizures for some time, so we hesitantly made the decision to attempt weaning his body off of it. This is a terrifying thing to do to a body accustomed to having the same drug for years. Medication adjustments have been brutal to him in past years, too. We know that. We did it anyway. The timing felt right, good, guided by God. And guys.
It has worked. It is working now. I watched and listened to this guy I’ve known since I was 9 years old return to himself…return to me…tonight. After 8, even, when he usually takes his last pills and slips off into himself, into side effect, often curling up in a ball in our bed, hugging himself so tightly his knuckles go white. After 8, y’all. He came to us. Sat with us. Smiled and carried on as though he had never left.
I will never get over the gift of these 3 years. Of this new gift of his awareness of self. Of his peaceful countenance. Of hands casually folded behind head, red-bearded grin on his face. Of God and of modern medicine, the One sustaining weary spirits in the waiting, the other sustaining life while healing comes. Of his return to me-to us-to himself.