Another piece of the puzzle understood, and a Nia rehab plan falling into place

Yesterday, I went to see a specialist called a neuro-opthamologist.  We only have one in the Pacific Northwest, and it turns out that practices in Spokane, Wa (about 80 miles from where I live).  She grew up in a little tiny town in eastern WA, Famington, and went to the University of Idaho as an undergrad, so I guess she decided to stay closer to home, and I am very grateful for that!

Since I had surgery, I have had a piece of my brain puzzle that was not clear, which has had to do with my vision.  I’ve known that I could not see in a specific area (low and to the right), but I also have known that there was something about seeing certain things that was challenging . . . I have described it by saying that I have to “think to see” sometimes.

The testing that I had done yesterday explained what is going on.  I have, as my doctor describes it, a “double-whammy” to deal with.  I have damage to the part of my brain that sees the lower right side of the visual field in both eyes.  But I also have damage to a part of the brain that tracks fast movements, like a baseball, or a cat flying by (not that my cats fly by quickly these days!).  This area of the brain that tracks fast movement is in the left temporal lobe, and it would have been in the path of the surgical point of entry.

She explained to me that there isn’t a rehab program for restoring this part of the brain. But then, there wasn’t for the other parts of my brain that where compromised by many seizures, an A.V.M., and the surgery.  So, my new challenge is how to work on rehabbing this.  My choice of work will be a Nia technique called “head and eye” movement.  It has to do with moving the arms around the body and tracking them with the eyes.  This will help with the visual field limitation, as I need to learn to turn my head and look, in order to see what is low and to my right.  I need to transform this action of turning my head to see, rather than attempting to see low and to the right with my eyes, which cannot do this.  So with head and eye movements, I will practice turning my head in order to see.

I am also hoping that it will help with the tracking, as I vary the speed of tracking slow moving to quickly moving arms, hands, and fingers.  While I’m not ready to have people throw baseballs at me to practice quick tracking, perhaps hanging out with a bunch of playful, quick-moving kittens?  Or perhaps, just dancing with cats, as the image suggests?

I’ll keep you poster, and here’s a great piece on this part of the brain that I never knew about before yesterday.  It’s amazing how specific certain brain functions can be!  So send me good energy as I attempt to rehab my visual fast track center!  In gratitude and joy for life force energy to continue healing, Kristine

On Becoming a Joy Warrior . . . Practice R.A.W.

20150826_194007One of the things I’ve learned over a lifetime, but especially in the past couple of years, is the significance of slowing down and really paying attention.  It’s the only way I am able to be open to the small details that bring daily joy.  When I barrel through life too quickly, I forget to look, and I don’t see.  I remember someone I worked with who struggled with depression telling me that, when the depression hit, it seemed as if the world went from “color to black and white.”  Likewise, brain trauma can create an experience of a black and white world, where the flashes of color, the moments of wonder, and the surprise of unexpected joy are not easily found.  So I use a practice from Nia, the form of movement I teach, called “R.A.W.” It stands for “Relaxed, Alert, Waiting.”  Relaxed of body, alert of mind, and my spirit waiting for . . . That’s the fun part.  Open to waiting for the magic of the unknown, the little detail that brings a moment of joy.  So, as a self-proclaimed joy warrior, I make it my practice, my discipline, to be in RAW, ready to notice moments that bring joy, to the best of my ability.  This means letting go of the pre-occupations that distract me, as well as the story lines that may have been comforting in their familiarity, but which no longer serve me.  I share a couple of photos of my joy surprise from a recent trip to Port Townsend, Wa.

20150826_193954These beauties were a part of my daily walk to a Nia training I was attending.  They are barriers, gateways, transformed by those who pass by into pillars of detailed beauty.  I added to them everyday as I walked by.  They were (and are) a reminder to me of the value of transforming what has seemed like a barrier, or a stopping point, into a place to pause and re-collect.  Since I’ve been home, I’ve been creating my own versions as I walk around my “stomping grounds,” hoping that they will help others to stop for a moment and appreciate.  Slowing down calms the confusion that is still present in my brain, at times.  It brings clarity.  Cultivating and seeking joy is the fuel that moves me out of the frustration of living with brain challenge.  I don’t ignore the challenge, but I choose joy!

Epileptica Recreated

Last Thursday, I had a celebration of my 2nd birthday. It has been 2 years since I had brain surgery, and October 8th will, forevermore, feel like a “new birthday” for me. The Montessori children (with whom I have the joy of dancing and doing Nia from time to time) made me a birthday card. I was talking to one of them who shared that she thought we should all have a “new birthday” every once in awhile. A lot have shifted during the past 2 years. I have retired from ministry at the church, and I now focus on teaching Nia (dance) and yoga in my studio, Aloft, here in Pullman. I have been given several opportunities to do more writing about my experience, for a Nia blog (talking about how I used Nia as a part of my healing process), as well as some other writing about recovering from brain surgery. So I find myself going back through the whole experience (in Nia, we call it “recapitulating”). I’ve been reading through the blog posts with interest, laughing with Jonathan about “My first boast” (my ability to write and spell was not epic at that time — my first post after brain surgery). I enjoyed reading the “Dr. Sunshine” posts, many of which I had not read before.

The blog is now renamed as “Seize Joy.”  That is what I try to remember to do every day.  I choose to focus my energies on being a “joy warrior,” to the best of my abilities.  Some days I fail miserably, but, on many days I find ample reason to seize the joy of the moment.

And to seize joy rather than randomly have seizures is a much fuller way to live.

I am hoping that most of you who were following this blog have, by now, unsubscribed, as your life has gone on. However, for those of you who might still be reading when it pops up, I invite you to read as I reflect further upon the experience, share some of the posts I’m writing for Nia, and share the next steps that will be coming up, which include finally going to a neuro-opthamologist to see if my vision can be “tweaked” to something closer to normal, as I continue to reduce meds (we don’t know how much, but I’m working on it with my neurologist, and as I go back to Boston once again for more scans (sometime in the spring). Like most real-life stories, this one goes on, and I find this blog to be a place to write the journey. Join me if you choose, or not, and thank you to so many of you who have been a part of this experience. With love, Kristine

Almost one year later . . .

In about a week and a bit, I get to have another birthday celebration. Oct. 8th will be the one year anniversary of my brain surgery, which quite literally gave me my life back. I’ve been asked by some if I would blog a bit more about the past year of recovery, particularly by others living with epilepsy and some thinking about having surgery to deal with their epilepsy. Writing in the blog was one of the first things I did once I could move and stay awake while I was still in the hospital. It was the first sign my neurological team had that I was still able to read (or, at least I had a good time randomly typing — I’m not sure they knew which was the truth!). It kind of feels wonderful to be going back to Boston, very shortly, and being able to look all of those doctors and researchers in the eye and say “Thank you.” It’s not everyday you have the opportunity to say thank you to a creative, innovative, and compassionate group of doctors and scientists who, quite literally, saved my life. More later, but just thanks and grace, right now.

PS — And don’t worry.  I’ll get Dr. Sunshine to add his two bits worth!


Dr Sunshine’s better-late-than-never Thanksgiving


Dr. S’  new favorite neuroanatomical term is “parieto-occipital sulcus”. It just rolls off the tongue and leaves a smile behind, doesn’t it.  The parieto-occipital sulcus is a groove that separates the parietal cortex – underneath the upper wall (Latin paries) – from the occipital cortex – (Latin, behind the caput or head). It is depicted as a red line in the accompanying graphic. You can’t see much of it on the outside of the brain, it is more pronounced on the inside of each hemisphere.

While Dr. S reluctantly came to see the logic behind removing Kristine’s lesion, the question was always how to get at it.  Visions of Indiana Jones slashing through the jungle with a machete to find the cosmic -jewel came to mind.  The recently available option of using a thin laser-tipped probe to drill down and zap the tissue seemed attractive, but not without risk.

But no, based on the MRI imaging, the surgeon devised a plan to run along this sulcus, minimizing the going through brain tissue that was so anxiety provoking.  Dr S refers to this as minimally invasive brain surgery, when it’s being done to someone else.   Internalize this graphic & you will understand that super cool stripe under Kristine’s hat.

Let’s reflect on that.  Fifty years ago, one could have an X-ray film.  Thirty years ago, a series of X-ray based CT slices.  I suppose the surgeon would just open you up, takes a look around, and decide what if anything could be done.  The mathematics of 3D image reconstruction and  computational power to execute it all came along in our lifetimes, as well as understanding and harnessing the physics of spinning protons.   Now the well-studied and well-equipped surgeon pulls this stuff up on the screen and says “Ah, follow the sulcus and we’ll be in the right neighborhood”.  I don’t at all take it for granted that our collective brain should be potent enough — especially considering its extensive library of failings — to assemble all these components and in so doing be able to look in on itself.

Dr S notes that “sulcus” can translate to “furrow”.  That could be like the furrowed brows in evidence around town over the past few years, or the furrowed fields of this place we  call home.  I suppose a deep enough furrow qualifies as a “rut”. In this case, the rut could be “Ah, temporal lobe epilepsy, best practice is to chop the temporal lobe, hippocampus &c” — which replaced an older rut of “medicate to the point of disability”.   Granted, these are science-based, but that also means it takes more and better science to find better ruts.

Anyway, it occurs to me that by following the anatomical rut, the surgeon was freed from the conventional-wisdom rut, and given the outcome so far, one can only be Thankful for every person and institution that made that a possibility.

Dr Sunshine considers the Seahorse and de-Fornication


Naturally, the term “temporal lobe epilepsy” associates to things like language and spirituality. But like so many things, the hidden is of great interest. In this case, on the side facing in, normally out of sight, lies the hippocampus. I did not know until reading that early anatomists debated: seahorse? silkworm? I’ve always been partial to seahorse males, being such attentive dads, but I have to agree, it looks more wormlike, unless you fuss with it.

The hippocampus is central to the process of forming new memories. A very enthusiastic temporal lobectomy can take out the hippocampus. For the archetypal if extreme case, read about “HM’s brain” As it turns out HM’s brain was also studied at the Martinos Center, our favorite research facility on the planet, before heading off to Calif where it is said to have been misplaced. That funny story triggered sharp inhalation when we realized the medical kinship of HM and KZ.

Hippocampus_and_seahorse_croppedThe hippocampus talks to the rest of the brain through the fornix. The apostle Paul warns against fornication,but as I tell my Sunday school students, that only means standing under an arch (fornix).  Ok, and prostituting yourself. Especially in the temple of Aphrodite. It stands to reason that removal of or damage to this structure would be de-fornication, which would have the same end effect as removing the hippocampus.

One galling thing I learned in Boston was that there is something about how the hippocampus is constructed that makes it prone to generate seizures. In addition, apparently repeated seizures can damage the hippocampus over time, making it more epileptogenic, forming what I suppose to be a positive feedback loop. This might seem to lead to horrible choice, but the standard of medical care to maximize probable effect is resection; though not on both sides like HM.

The gift from the Spokane neurologist for several hellish days of  worsening health and extremely well-instrumented convulsions was making plausible that the source of seizures was in a different vicinity than presumed.

The gift from the scientists at Martinos Center was magnificent 7-Tesla MRI images revealing at high resolution the plausibility of removing a lesion unwelcome in that neighborhood, while at the same time, as they say “sparing the hippocampus”.

The gift from the brilliant MGH neurosurgeon was the reasoning and confidence and  consummate skill to plan and execute a very delicate surgery.

Dr Sunshine has not made the slightest, even microscopic dent in the question of: These things that have happened – what does it all mean?”, but simply recalls the Mary Chapin Carpenter lyric “life is a gift from the great Unknown, and your job is to receive it”.

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!