Last Thursday, I went to an epilepsy-surgery support group at the hospital at which I will have my procedure. It was structured so that in addition to patients in the process of being evaluated for surgery, there were also various medical professionals in attendance, as well as people who’ve already had the procedure. I was hesitant about going for several and inevitably complex reasons, but I figured it’d be a good opportunity to, you know, receive support and be more positive about the fact that I’m proceeding with this brain-opening-up thing.
I won’t go into extensive detail about the session itself since I don’t want to put other participants’ anonymity at risk. I will say, however, that I was pleased to leave with a few of my most pressing questions answered: indeed, the panel of experts was happy to address each and every one of my mostly technical/logistical queries. I will also say that although I was a little emotional during and after the group, I’m so grateful that these kinds of resources (in this case sponsored by Epilepsy Toronto and the hospital) exist.
A willingness to tap into them is big for me because in terms of surgery stuff (OK, in other areas of my life, too), I sometimes assume that ignorance is bliss. Would it not be better, I ask myself occasionally/almost constantly, to cross each metaphorical treatment-related bridge when I come to it, especially when I don’t have much of a choice regarding a procedure that’s going to be difficult/unpleasant? But now that October is creeping ever-closer, I’m beginning to realize that knowledge can, indeed, be empowering. Who’d’ve thought?
For example, I’d been avoiding asking what the recovery time is like for the intracranial electrodes because, frankly, it wasn’t information that I wanted to have. That said, it turns out that it isn’t just about me: whether or not I prefer living in a little bubble, my support people, especially my logistics-loving husband, deserve having access to as many facts as I can obtain for them so that they can adequately prepare for the time that I’ll spend in hospital and then recuperating at home, which will be just as stressful for them as it’ll be for me—if not more so, in some ways.
I also confirmed that I’ll need to shave my entire head. I asked if it might be possible to shave a smaller portion, even if “smaller” means half my scalp, but was told (again) that it’ll be the whole thing. Thanks to a very generous offer from a very kind soul, I’ve already started cutting it in stages so as to minimize the shock of going from long, thick locks to the punk rock look. (Real-life friends, you can look forward to witnessing the transition.)
When I returned home from the support group, my husband had a ridiculous frog cupcake, composed of at least half bright-green icing, waiting for me. And due to that small gesture that meant so much, I was immediately too busy frog-cupcake admiring, being happy that I have a husband who knows how much I like novelty cupcakes marketed at small children, and preparing to perform frog-cupcake surgery (I am a doctor, after all) to continue dwelling on the details of my upcoming surgical procedure.