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

http://www.livescience.com/29417-how-brain-tracks-moving-objects.html

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

Mostly Set to Go

Ah, Boston.  The land where Rs either don’t exist on the end of words, or they are added when they actually aren’t there (example:  “pizzar”).  The land where you pay your toll to the Sumner Tunnel and the guy calls Jonathan “Pal.”   The land where Jonathan is kind of a folk hero because he can describe what it was like to be there during the blizzard of  ’78.  The place where, even though we lived here for many years, the antics of drivers can still surprise us.

It’s been a long day of appointments, but we are mostly ready to go now. Turns out that spending an hour+ sitting in the Chief of Neurosurgery’s waiting room is a really good way to end up feeling that you have no problems at all in the world. Today it was packed with people with shaved heads, mobility and mental challenges, and lots of stories. Just listening in made me realize that, if you ever want to be around a lot of courage, you should just go hang out in the neurosurgery waiting area. Particularly emotional for me was the young woman who has 2 stents in her brain because she was born with hydrocephalus and also shrapnel in a number of areas of her skull because she and her family survived attacks when they lived in Sarajevo. Hearing her telling her story, all the time with a face of bravery and  a  type of humor I’ve come to understand is critical to making it through these moments, put many things in my own life in perspective.

We met with Dr. Eskandar to confirm the details of the surgery. And then there was the great moment when he gave me a wink and said “See you tomorrow, shall we?” That’s a moment — when your neurosurgeon winks at you!

I was felt like a star in pre-op because it turns out that doing a lot of yoga and Nia keep your blood pressure and the rest of your body very healthy — all of those tests and numbers looked good. I have a delightful anesthesiologist (Standford Grad — Go Cardinal!) who was telling Jonathan where he could watch the youtube video on putting in a central line (I’m going to pass on that this evening).  Heard the general description of the gizmo they screw my head into so that it remains perfectly still while they do the surgery. It’s a lot to take in, and I am happy that I will not be awake for most of it.

Kind people seem to be everywhere.  Even the woman doing my blood work and my EKG told me, when we finished that she would be praying for me (and go by her church and light a candle for me).  I can’t imagine feeling more surrounded by love than I do right now.  And I love you, right back!

What is it Like to Have a Seizure?

Little Kristine at camp

Little Kristine at camp

One of the things I wanted to get down, before I have surgery, are the answers to some of the questions that I’m often asked by doctors. One of them has to do with describing “the first seizure you remember.”

The reality is that most people that have the type of epilepsy I have (temporal lobe epilepsy) don’t talk a lot about their seizures, because the seizures are subtle, confusing, and they make us feel like we are crazy. My seizures begin in a very specific part of my brain.  This manifests as an intense “thought,” accompanied by a strong sense of deja vu. It was only a few months ago, when I did an extended monitoring EEG in a hospital, that I came to understand that this unique “thought” and “feeling” were indeed, an aura. An aura is a small, initial seizure.  In my case, after the aura, I have about 30 seconds  before I have a full, grand mal seizure.  I learned this because, in the hospital, I had to push a button every time I thought I might be having a seizure, and this “button pushing” exercise confirmed that I was right — every time.

Why didn’t I figure the seizure business out sooner? Because I’ve had the experience of the strange “thought” and “feeling” for as long as I can remember. Like many people with epilepsy, I never had a grand mal seizure until I hit puberty, but the “little” ones have always been a part of the way my brain works. So I never talked about it because I knew, on the one hand, that something strange was going on, and yet, this “strange thought” was also totally “normal” to me.  How do you know something is a seizure when it’s something your brain has always done?  It would be like getting a fish to understand that it is wet — how would it know anything else?

The first really memorable moment I had that was, most likely, a larger seizure, occurred when I was at a summer camp I regularly attended as a child. Camp Easterseal (later renamed Camp Roger Larson)  was on Lake Coeur d’Alene and was a camp for kids with special needs as well as kids without (back then, we thought I was one without special needs). Every year, we would go on an overnight and sleep outside under the stars. The year I’m remembering was one where I had befriended a girl in my cabin named Peggy. Peggy was hearing impaired, had seizures, and had brain damage that resulted in her having little ability to perceive physical pain. This meant that others of us would stick close by her, because she often got hurt. This particular evening, I was sleeping beside Peggy, watching over her (in my little sleeping bag with the cowboy flannel lining!). She was very scared of being out doors, and so we were snuggled up close.

All of a sudden, I remember having this strange sense, actually, a sense of absolute sureness, that everything was, is, and always will be connected to everything else.  There in my little cowboy sleeping bag, I knew, in that moment, that there was no difference between me and Peggy, no matter how “different” we seemed on the outside.  I remember feeling connected not only to  all the other sleeping campers, but the sand on the beach, the dark trees, the vast number of stars in the sky, the moonlight on the water, the endless waves.  And what was strange was that it wasn’t like having a “thought” about this, but it was an actual, physical feeling, deep down in my bones, that this was real — as real as feeling my breath moving in and out of my body.   There was a sensation of the “terrible beauty” of that knowledge — it seemed “too big” to think about for a little girl.  I also remember the strong feeling that I now know is called deja vu (but had no name for back then).  It was as if I not only knew this truth in that moment, but that I had known it  for a very long time before that moment.  I later wrote in the little hot pink vinyl diary I kept back then that it felt like “forever knowledge,” something I’d known before I had a sense of being me.

Later on, I would have that same sensation on a fairly regular basis. Years later, when I finally had my first grand mal seizure,  I finally came “out of the closet” with this strong sensation to my mother, describing to her that I was having this  thought/feeling that was a “theory about how to do anything better” . . . which had to do with knowing about the deep connectedness of things.  I now try to imagine what it must have been like for my wonderful mom trying to figure out what the heck that was about!  Back then, there was little understanding of epilepsy, and it took years for me to be diagnosed as having epilepsy (I was 18 when it was first suggested).

It turns out that what I am describing — the deep sense of universality, the strong emotion, including terrifying fear, the sense of deja vu, are all classic symptoms of temporal lobe epileptic seizures. You can break it down into some of the unique features of the temporal lobe, including the amygdala — it’s a busy area of the brain that processes language, memory, emotion, a sense of time and place, and, to some extent, a sense of connection.  It is probably also understandable why many of us who have this type of epilepsy seem to have a strong spiritual bent — I believe that spirituality and a sense of connection to that profoundly beyond ourselves, gets hard-wired into us, not as an idea, a theoretical belief, or a wish, but as a sense of something known as deeply and surely as any other experience.

I think, for many of us, it is a relief when we finally share these stories of seizures with others — others with epilepsy and/or neurologists — and they say “Oh yes, we recognize that and we’ve heard that before.” (Code: “You’re not that special!”). It’s a relief to know that others have had this same type of experience. And yet, it’s also part of the reason why Hippocrates first named epilepsy “the sacred disease.”

I have no doubt that these experiences have shaped me into the minister and yoga/Nia teacher I am today. That sense of the embodied Sacred is one I’ve always been trying to explore, explain, understand, and live out of the secret place it so often dwells and into the light of every lived day.

I hope that others who have epilepsy will take time to write about their experiences of seizures. It is so helpful to others who go through the same thing, often feeling very alone.

Game On!

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I added this picture because I like the idea of a bunch of monks saying “WHEEEE!” as they take a plunge into the unknown.  I can relate.

An update for everyone:

Jonathan and I heard back from a member of the team of doctors who have been making decisions about my surgery, and they have decided to go ahead with surgery on Tuesday, October 8th, as 12:15, as planned. Jonathan describes this surgery as “minimally invasive brain surgery,” in which they are taking out the lesion in my left temporal lobe which they believe is responsible as a starting site for the seizures. What they have decided not to do, at this point, is the more invasive surgery in which they take out larger portions of the temporal lobe and left hippocampus. The doctors are hoping that this surgery that takes “less real estate” (as they often refer to the brain) will stop or at least greatly diminish the seizures. If not, I might be facing a second surgery. However, the more invasive surgery came with more risk of significantly impacting my language and memory, and so I think we all feel good about trying this and hoping that it works (there’s a good thing to keep in your prayers!).

We are getting everything ready to head out of town shortly. Thank you to everyone who has been helping, in so many large and small ways along the way — they all feel huge. Thank you for supporting Jake and Leda (who will be here in Pullman during this upcoming week). Thanks to Chip and Trina at church, and the talented group at Aloft Yoga and Nia who have come together to teach for me and keep things going while I am away. Thanks to members of the CCUCC and UCC communities, the yoga/Nia community, the Muslim community, the St. Gertrude’s prayer chain, several LDS communities, the Hindu community, my friends who describe themselves as the “atheist well-wishers,” the Buddhist community, Native American friends, and many, many others who have let me know they will be holding me, Jonathan, Leda, and Jake close this week . . . It means a lot to us. We feel surrounded by God’s grace, your care, and the beautiful mystery that facing challenge in the midst of love brings front and center.

I have spent this past week doing some things for Jake and Leda, talking to my mom, catching up on some concerns with members of the church, planning and teaching Nia and yoga, and today I began working on an idea for my first sermon back at the church and some creative worship for Advent. I told Chip that it’s good to know that, even in the midst of a week like this, when I know something will be dramatically different inside of me next week, I still wanted to spend this week doing all of the same things I always do, because I truly love the many things I do that make up my life. I go into what lies ahead knowing that I journey with that incredible gift of feeling fully alive, and having the privilege of a life that is interwoven with so many wonderful people.

Taking a look inside

right brain all lit upI’ve had a number of beloved friends who are lately posting ultrasound images of their soon-to-be born babies . . . I love seeing those little ones.  I guess this is what you post when you get older and have epilepsy!  But whether it’s an image of a child we have yet to meet in our world, or the inner workings of our brain, there is something truly miraculous and, to me, sacred, about being able to see the inner workings of ourselves. I’ve never understood how some religious types see science as being opposed to religion and spirituality.  When I see a group of scientists and doctors who work collaboratively to create something like the image you see on the left, it’s like seeing a bit of God’s handiwork, first-hand.

This is one of the beautiful images from a functional MRI scan they did at the Mass General of the right side of my brain working away while I perform a word retrival task.  The fMRI is an interesting process — you are in an MRI tube and they flash words and images on a screen and you “think” the answer.  My biggest challenge during the fMRI was that I wanted to argue with them, or preach, about some of the things they were showing me, and they had to tell me not to move my mouth or throat.  For example, one of the tasks they have you do is to show you a noun, and you have to “think” about whether it is abstract or concrete.  The third noun they showed me was “church.”  You can only imagine everything I had to say about this.  Is “church” a concrete noun — in other words, a place, a building?  Or is it abstract — the people, the energy, the relationships?  Of course, it’s both/and, and I really wanted to preach the sermon, or at least share this with the MRI techs, right then and there.  They kindly asked me, in nice Boston accents, to just “save the sermon for lata’ ” and try and think my way through to one response.

The scans seem to show that, while I have a dominant left temporal lobe, much of my language functioning has shifted into my right frontal lobe, all of which is confusing — they don’t really understand, fully, what this means.  For over 80 percent of the population, language is exclusively in the left temporal lobe, where I have a lesion and seizures begin.  However, it’s also encouraging, because it seems to indicate that my brain already has some plasticity and began this shift awhile ago.  So next time you listen to me “go off” in a sermon or a yoga class, just blame it on my right dominant brain (and tell me, kindly, that you’ve heard enough, for now).