I realized this morning as I looked over at the bedside table that I’m currently reading two books that, for lack of a better word, bookend my perspective at the moment. For one, I’ve been reading Being Mortal by Atul Gawande, which addresses end of life care. It’s one of those books that comes along right when you are going through a season that matches a book like that. It feels like a revelation to read it, but at the same time, you realize what it is doing is affirming what you already knew was true in your heart. It’s a tough read, and it makes me look at my own mortality, which is both depressing and a relief. But it encourages me to keep looking for things that make Vernon happy and comfortable as long as he is here (which could be a lot longer…or not.) It also illustrates how too much medical assistance doesn’t actually increase one’s quality of life, but may hinder it instead.

The book I’m currently reading to Vernon at dialysis is one that was given to me shortly after Vernon’s accident, but I wasn’t capable of reading it till now. It’s called “The Brain that Changes Itself.” This book contains stories of remarkable scientific breakthrough in brain plasticity. Vernon finds it very interesting to listen to, but he doesn’t relate the stories to himself.  That’s how it is with brain injury, I suppose. Every single neurological deviation is different in people so sometimes it’s hard to compare and relate. But the fact that Vernon can enjoy it causes me to finally read it myself. And it is mind-expanding to look at hopeful scientific horizons, even if they are treating differing ailments than his. The human brain may indeed be the final frontier!

So you see…this is where we are: bookended by learning to live with inevitable deterioration of the body and the surreal optimism of  staying curious. It could go either way, but its unlikely either will happen in a moment. Either way, its a long slog. Preparing oneself for the haul means keeping all of this in mind. The trick is learning to keep my emotions in the middle of the swing set.

I think the spring weather is helping though. And the longer days. It feels like I have more time to get everything in. More energy anyway. I went to visit Vernon five times this week, but somehow I managed to get to my regular workouts, take the kids to and from school and lessons, and sort of keep my house clean. So…progress! Vernon has been more tolerant of his time at dialysis this week…I think the extra time on the mat and increased oil is helping.

Here are two more bookends, to sum up this season—Vernon resting and Justine holding a butterfly in the Kindergarten garden.

At the moment, I think Maki and I have the most in common: we are right in the middle of these two,  and we are both having to reflect on the separation of past and future, hope and acceptance. It’s not a BAD place to be…and I often refer to it as escaping the Matrix. Perhaps hope and acceptance aren’t so different than I thought. Maybe we are capable of containing more reality than we used to. Anyway, it’s a trip.

(Taken by Justine)

On another note, I went to the care plan meeting at Mesa Verde yesterday. It has been a good six months or so and a lot of doors have been closed since then. Of course, its all in the asking. Sometimes it takes a long time before I realize I can rephrase the question and maybe get a different answer. I asked if Vernon would be allowed more exercise, not physical therapy, but something more simple like time on a stationary bike for twenty minutes with the help of an RNA. I believe this is within his residential rights, but I also know his schedule and mood swings can intimidate the staff and so these things have slipped over time. I think it might cause him to be more naturally tired and will also benefit everyone who cares for him. Maybe he won’t need to spend his time in bed climbing up and down from it and maybe he can be more comfortable for his dialysis sessions. It certainly couldn’t hurt. And I think he is ready for at least that little bit of time on a bike. After all, he’s been a cyclist most of his life.