Was the surgery successful?

Some one asked this question, and it’s a really good question with a complicated answer. During my first post-op appointment with the neurosurgeon, he basically told us that we were going to have to just “wait and see” if, over a period of time, my seizure activity was reduced. Even that is complicated, because I’ve always had both “partial” (“little”) seizures as well as “generalized” seizures. So, it’s an interesting thing to wait and see if nothing is going to happen! My doctor was also clear that, if I had a seizure, it did not mean that the surgery was not successful. After brain surgery, it takes awhile for everything to settle into “the new normal,” so it can take awhile for the “success” to really be determined.

However, in my case, I’m happy to say that, so far, I have had ZERO seizures since I had the surgery. None. Not even the little ones. And, from my own perspective, so far, things feel “different” in my brain. It’s a lot quieter, and I also feel like I have more energy (I know, watch out, if Kristine has MORE energy than before). I guess the way I would describe it is that I think it is an ongoing “drain” of energy when you are constantly having and recovering from small and not so small seizures. Now, I don’t have that drain everyday to every week, as I did before. There used to be these days when I felt as if I was having a “fight” with the seizures, as I attempted to stave them off, and now I don’t have that sense.

So, so far, so good. I try to stay in a realistic place about it, but it does feel incredible to be living in a body that isn’t having regular seizures — when I sleep, little ones throughout the day, and then, the “big ones” that disrupt everything in life.

So that’s the report from inside my brain. I feel great. I am pretty much back to my regular yoga/dance teaching schedule and I can continue to tell that the body memory continues to help my brain and my thought process heal. It’s still very strange to be “inside” a brain that I don’t really recognize as being “my” brain. I found myself longing, the other day, for my “old” brain — the one that was familiar. This new one is fascinating, but sometimes it would feel really nice to have the process of thinking go the way that it used to and not have it feel so unusual, as it continues to feel right now. When it gets to be too much, I just take a nice long nap.

So, over all, things are really, really good, and I continue to just be so tickled that I am alive, waking up, thinking, doing things like going to our daughter’s Parent’s weekend at Whitman College . . . All of those little and big things that make us human and alive.

I can’t say it enough . . . enjoy every minute of it!

Waking up is the best!

I’ve always loved the early morning, and I’ve always liked writing in the morning, so now the blog just gives me a place to do what I already have long enjoyed. Lately, I just feel like I wake, exploding with a sense of gratitude for actually waking up. When you have brain surgery, and they talk you through the process of the surgery, and all of the lines they put in your body “just in case” which is how they describe it to you (meaning, they are tactfully but clearly that they all hope the surgery will go the best possible way, but, from a prepping perspective, they assume the worst, so they get every line in place that they might need, in case it doesn’t go as planned. Now, there’s something about hearing this explanation from a really wonderful and compassionate group but who also could appreciate my own need for no sugar coating that has really stayed with me, even post surgery. It really sunk in, in spite of the anesthesia and all the drugs.

I’m not one that shies away from living with a clear understanding of the possibility of dying — That’s actually been a part of having epilepsy since I first learned of “sudden epilepsy onset death syndrome.” I also do work, that I love, in which mortality is never very far away.

However, on this early Wednesday morning, I’m just wide awake and feeling so thankful for being alive, having a brain that can register the very early beginnings of the sun coming up, that can feel the anticipation in my body of dancing with friends today (both taking a class with Mary Trotter and teaching, later on today) . . . . It’s got me doing a little “jiggle of joy” just thinking about all of it (my Mom would tell you that I’ve always done the little jiggle of joy when I get excited about something).

And now, lets I get too esoteric, my spiritual mentor, Senor the Cat, is bringing me right back to the important things — like that I need to stop writing, because he needs outside, in order to commune with the beauty of the early day.

Enjoy your day, whatever it holds instore!

How Fun Was That?

I believe that I am, perhaps, the most fortunate person that ever got to occupy a body. I got the studio yesterday and there were a whole group of students/friends who came to dance, for my first time back teaching. It wasn’t perfect — right and left are still kind of elusive to me, and then it gets more confusing when teaching and doing “mirroring” when I’m doing things on the left side, but it’s right side for the students . . . and it’s even more confusing, because in Nia, the teacher doesn’t do mirroring, only in yoga. So, you can only imagine the patience of this wonderful group as they hung in there with me, trying to understand what I wanted them to do! And then, there are the words that sometimes just won’t come at all. Like yesterday, I was trying to find the word “swim.” I could find the movement I was looking for, but it was a bit like a group game of charades as they had to come up with the word that described the movement. The bottom line for me was that it was very therapeutic to teach — I can’t tell all of you how much it meant to me just to have you there. It also made me think again about having “A village” to make it through almost anything significant, and I feel surrounded by the love of my village. So thanks for the therapeutic dance yesterday. I’m already excited about the next opportunity!

Continuing to try and understand time, and not annoy my family or my cats

I continue to have an interesting relationship with time. Like I spend time thinking about what is a “socially acceptable” time to go to sleep or, maybe more important to function as a member of a family unite, to get up in the morning. So I wake up, stare at the clock for a long time in order to understand what time it actually is, and decide if I’m okay to get up or not. Now, you have to understand that my mom has a long tendency of getting up long before any normal human being would consider getting up, so, if I keep up these early morning wake ups, I’m sure Jonathan will probably just ship me to the farm and park me with mom. I’m not sure if she will be up for the 5 a.m. dance sessions — she prefers to listen to the early morning news on the BBC.

I got excited this morning because I heard Jake get up, which meant that I was in the right range for socially acceptable times to get up (because Jake, in general, is more aware of being socially acceptable than either myself or Jonathan). So, I was feeling pretty pleased with myself. But it is funny, I continue to looking at the time and clock and try and really connect what they say to the moment I’m in.

For example, I just realized that the time on my computer was still set to East Coast time, and so I was using that to come up with the “socially acceptable” time to go to bed and get up, not knowing that I was only being socially acceptable in a locale where I happen not to be, at the moment. The bottom line of all of this is that the whole business of time is still really seems kind of arbitrary. It seems worth it to go with it so that I can be on the same “page” with others I love . . . I just wonder when it will feel “real” again?’
It will be interesting to teach this afternoon and see if I can understand the need for the class to end. Right now, my general approach toward dancing seems to be that you should just keep it up for as long as possible, because it’s really fun and it’s what the body is made to do anyway, so why stop? Those of you who come to this class can feel free to gently remind me that it is socially acceptable for classes to end and let people go home, no matter how excited your teacher is to move again!

Peak moment this morning

Well, it happened at 5:00 a.m., when I got out of bed and realized that I had 2 of my favorite Nia routines fully ready to dance in my brain. Got so excited that I got right out of bed and danced through both of them (the cats were irritated because they weren’t ready to be awake yet). It’s so amazing to realize how much memory resides in the physical body. And then to listen to the music and realize the entire dance is right there, ready to go! This business of having a body is really pretty awesome, when it comes right down to it!

Home, once again, with my priorities in tact

We made it home, which turned out to be a pretty exhausting process of travelling across the country. It is kind of amazing that you can have brain surgery and then they let you fly, so quickly, afterwards. My beloved doctor has a nice little image of, when they do the surgery, they let some air into your brain, so your head is like a soda bottle with a bit of extra air that makes it go “poof” with the pressure changes. It’s weird, because I could actually feel the pressure changes, including it turns out that, just thinking about moving, standing up, anticipating doing something, the brain starts to do its magic and little changes in the pressure of the brain begin to happen. Those of you who know me can only imagine how fascinated I am by this entire process as it unfolds in my own brain – I may never need any form of television again, just my own weird brain doing its thing and watching it, in real time. It is such a strange window into something that is really a miracle – that our brains do this for us all the time, and we don’t even notice it.

On a practical note, the cats seem thrilled that I still remember that feeding them the moment I wake up is the most important job I have in my life. Our cat, Senor, seems pleased that I remember that giving him a little bit of turkey from the fridge is the most evolved human action my new “designer brain” could possibly display. I guess if your cats are satisfied with the work of the neurosurgery team, they’ve done a pretty good job of it.

And fortunately, one of the cats realized that her job, last night, was to just sit in my lap and purr, so they are holding up their end of the deal a bit – at least as much as cats are able to focus in on such things.

the complexity of getting dressed

I tried to pose this earlier, but I think it must have been too complex for wordpress. I’m thinking about how complicated it is to get dressed. I remember when Leda was small, she would create these elaborate outfits to wear, which took a lot of time to even put on her body. What order do things go in? Why are there so many layers? And how complicated are leggings, anyway? Just sitting in front of my suitcase, deciding on what to wear gives me an appreciation for my poor brain being able to figure it out at all! It went better as I thought about how much fun Leda used to have with the process of getting dressed as a little kiddo, and then to go about it with that attitude. I think my priorities are different than hers were – I want to be warm, she wanted complex fashion, but the layering is similar!It sure makes me chuckle, as I think about how much time we spend in this complex world of dressing ourselves up.

Dr Sunshine communes with nature

IMG_0210Today we took a trip to the Great Meadows National Wildlife Preserve in Concord. Congress closed it of course. But the anti-authoritarian Zak gene kicked in and we hopped the chain. This is a place we used to go during our courtship, and baby Leda has been there in her baby-jogger <3. This is a sizable chunk of wetlands, with a flat trail around and across it. Kristine mentioned the blueness of the sky, the color a few fallen leaves — sort of noticing the natural beauty in a way Leda did at age 1, though not being in a stroller, Kristine was not able to kick her foot up and down with approval.

You can observe in the background that there is very little color foliage so far. So all leaf-peepers who cam to Boston don't have much to cheer about. There are also bugs and what I assume are little toads chirping, so Mother Nature is definitely nowhere near settling down for a winter nap. Wonder why that could be.

Being a holiday, there was a lot of good people-watching from our seats outside the downtown Peets .. swarms of teens milling around Bertucci's pizza and the like. There is a walking/running/biking trail which connects all these town centers on a retired rail bed … Nancy Mack enjoyed the Minuteman Trail during her time in Lexington, so it’s probably fair to say the Chipman Trail has New England roots.