So, Let’s Discuss Brains

Happy to report I still have one. Have been EEG’d and MRI’d and CT’d and they all seem to agree that considering everything, it could have been worse and I’m doing very well. I continue to be beyond grateful and filled with joy every day.

That said, I am about to enter a phase of recovery that I am not looking forward to, and would resist if I could.

First, it must be noted that this phase will not be attended by drama (I hope) – no helicopters, seizures, comas, paralysis, dire warnings of imminent death. All of my troops have largely received the order to ‘stand down’, and the day-to-day is remarkably calm.

But now it’s time to fiddle with the medications. Oh dear. The big ugly silverback of seizure meds is Dilantin – and that’s the one that ultimately, in a dosage you would give your average moose (with seizures) stopped mine. It calmed down my brain enough to let me live. I also take two other anti-seizure meds. This would seem like a fine arrangement, except that there are these pesky side effects.

They range from the annoying (growth of hair on amazing places including the tops of my toes and the beginnings of a soul patch under my lip) to the alarming (too many to list and I’m worried about my liver).

The goal here is to slowly back down on the Dilantin while ramping up another, “cleaner” med that I can’t spell and you don’t care about, anyway.

The last time anyone fiddled with my meds, I was in a coma. Frankly, except for the long-term implications of being in a coma, that’s not a bad place to be when they are messing with your meds. This is going to drive me crazy, because the changes could set off a seizure.

Oh, boy. I think everyone would agree that I have been a remarkably good sport through all of this. Even cheerful, except for those (few) times when I could have starred in the new Godzilla movie. I have followed directions. I have accepted the necessarily more narrow scope of my life. I have prayed for others and myself. I have come to a new understanding of the value of everything.

But now we are moving from one med to another over a 10 week period. I’m not in a coma – I’m scared. I’ve grilled my precious neurologist about how she feels going into this (she is delightfully confident). But I will be awake.