I woke up two mornings ago to the amazing sight of a fast moving rainstorm rolling toward us from the Pacific about a mile away. The gorgeous but somewhat eerie light lasted only a few fleeting minutes but signaled that things were about to radically change. A pounding rain lashed our building minutes later. It rained most of the morning and then it passed.
This is a bit like how I am coming to understand my seizures. Seizure - I resisted even using the word for a long time preferring the word episode. I get some sort of inkling, an intuition, which I've have grown more sensitive to recognizing over time, that something is not quite right - that something is coming. My seizures (just focal and/or partial so far - I've never had deal with the chaotic tsunami of a grand mal seizure) have been relatively controlled since my cancer was discovered. Anti-seizure meds, thankfully, have been reasonably effective for me.
The seizures have come infrequently but have not stopped altogether. The first ones that I experienced were strange, unfamiliar, and deeply upsetting. The original diagnosis of migraines was strangely reassuring - not fun but I can deal with migraines, right? When a doctor says brain tumor to you, it's hard to fully comprehend partly because the very phrase is shorthand for the worst thing that can happen to you (which of course, it is not). Adjusting to this reality, the weight of the idea and the day to day experience, has taken me a long time but I feel as though I have reached a certain equilibrium. Occasionally, a splitting headache, some prisms ringing my vision, light sensitivity - I had almost grown used to the pattern. I have learned to try and relax and let it roll through like a winter storm.
I had another about ten days ago. I had a sense that something was coming for a few days. It was both less severe and more frightening since it was slightly different than what I have experienced before. For the first time, I experienced numbness and weakness on one side of my body which was strange, new, and left me wondering if it too would pass like my other symptoms. Thankfully, it did. Yet, each time it happens, I feel a pang of wonder - is this it? The permanent change not a fleeting episode?
I just started (and almost finished - it is a slim book) David Servan-Schreiber's Not The Last Goodbye: On Life, Death, Healing, & Cancer. He finished the book two months before finally succumbing to a brain tumor after living with it for 19 years. I can relate to a lot of what I have read so far. Even some of the metaphors he uses to describe his experience are strikingly similar to ones that I have used. One aspect that I find a bit disturbing is the degree to which he takes responsibility for his relapse, feeling that he pushed himself too hard - traveling, giving lectures, evangelizing the ideas he presents in Anticancer - and he knew it.
There is an unavoidable tension between wanting to live everyday to the fullest, to live as if nothing has changed and the necessity of making adjustments, acknowledging limits, and to stop the external and internal chatter long enough to listen to your body.
Hi. I do read the blog regularly (although don't post many comments). I really appreciate your thoughts and being able to hear how things are going.
ReplyDeleteThanks for sharing
Kathryn
Here here. Thanks for the excellent writing and wisdom my friend. ~Rick
ReplyDeleteSo, not to push yourself too hard or anything, but you are going to write a book at some point, right? You write with both the precision of a surgeon and the heart of a poet (something I normally wouldn't think possible).
ReplyDeleteAlso, on a completely different note, I've read about (and known) pets who can sense seizures. Some are actually trained to help and protect the person who is in the middle of a seizure, but others will sound a warning, letting you know that they sense something is happening, even if you can't sense it yet. I don't know if that's reason enough to visit the pound and adopt a critter, but it's a thought...