A Year Since, Part I

Part I

It has been a year since I went to St. Anthony’s Hospital at the crack of dawn and had
my skull sawed open, an incredible year in many ways. I survived. That’s the
first thing. I survived and have so much to be thankful for all that’s around
me. I want to review that for my own good, and to clarify that challenges can
be met. The second thing I have to do is to face that in the next six months
or so I’m going to know how far the healing can go, and I’ve already begun to
accept that there are now things that will never go back to the way they were
without a miracle.  Finally, I want to do something with this acceptance
besides sigh, I want to embrace what I can do instead of tripping over the
obstacles again and again.

When I announced that I’d been diagnosed with a brain tumor, a benign meningioma on my left temporal lobe, back in October of 2011, I was rather in shock to be
honest. Giddy almost, I was, that there was really something to blame for the
never-ending headache and messed up phraseology. It wasn’t all-in-my-head, but
really it was something and it could be addressed now! Then I had the challenge of
getting on the right medication to deal with it, and that was a four-month
ordeal I didn’t expect, but like everything in my life, it seems, sort of
slowed down the pace of my impulsive tendency to rush in. I need those slowdowns
to step right up often, and so they seem to do that.

During those four months I received a great deal of support from people all over the
world, and dove deeper into far flung friendships through poetry sharing and
commenting deep into the lonely nights. I so appreciate the willingness of
people I barely knew then to stand by me, even if only in cyberspace, and
listen to my moaning and groaning, cheer me up with good and naughty jokes and
hold my cyber hand. I did not want to visit in person that often with people at
that time. I did not have much vital energy for live chit chat, but I valued
not being totally isolated. What an awesome social web it was, keeping me from
falling into a chasm of despair.

Meanwhile, my family drew in and caught me when I fell and let me cry on their
shoulders when one medication after another turned out to be that list of side
effects they play out at the end of a commercial. The fact is I will never know
if I could have made it through this experience without walking my dog, without
knowing that I was needed by my kids for something or other, without long hugs
through dark nights. They were there and they helped me through, and that is it.

So, the surgery went really well, I still believe, even if it isn’t to this day
perfect. It took four hours. I felt immediately relieved of the grayness that
had been in my head for nearly a decade and was getting very dark up to that
moment. I could count, speak, write, talk, walk and eat. All is well. I went
home in five days. I laid around for a week or two, and took up drawing,
inspired by “My Stroke of Insight,” by Dr. Jill Bolte Taylor, whose
book I read before surgery. I had the notion that if the pressure was off my
left temporal lobe finally, perhaps, that gave my right brain a chance, a chance
to finally get a word or an image into the conversation I have been having with
life.

Five hours after they sawed my skull open...might good hat!

Oh my!

2013 © Amanda Morris Johnson

What’s sitting at the Head of the Table in You?

This is week seven of recovering from brain surgery.  In the last few weeks I’ve seen the neurologist, the neurosurgeon, the osteopath and the dentist.  I’ve pulled a little dissolving thread from my head that I didn’t even know was there.  I’ve talked to some folks who’ve been down this road. I’ve been coming to terms with some different concepts in the last ten days or so about what denotes “recovered” and what is a work in progress and let go of knowing what's around the corner.

Road of Pearls

I can report that the neurologist and the neurosurgeon are very pleased with my progress. The wound is pretty much healed now and my hair has grown back around it to “tuft” level. I’m taking pain relievers only once or twice a day and just at an over-the-counter dose now. My headaches have lightened up to a weight that is often lighter than they were for years prior to the diagnosis and surgery, spiking only with weather changes and allergy season. I even think I realigned my jaw, with the help of the osteopath, by yawning incessantly for a few days to the point where the throbbing pain, that sent me to the dentist in a panic about potential root canals, has diminished.

What I have been bothered by is much more subtle than the physical symptoms that dominated my concerns for months, and has shifted my ideas about where I might be headed to, to definitely not knowing. These trends emerging within myself are both amazingly cheerful, and dismally fearful, and seem to lead to new revelations of self-definition on a daily basis.

I’ve been focusing on the ends of the spectrum in my thoughts about it: expectancy and curiosity, blind spots and mindfulness; holding on and letting go; order and chaos, and lucidity and imagination. For instance, when my expectations fade away almost thoughtlessly, my curiosity rises and becomes the leader. When simply knowing what to do next is absent from my table, there is my imagination mysteriously sitting near the head with new ideas.

If you read “My Stroke of Insight,” or see the TED video by Harvard Neuroscientist, Jill Bolte Taylor, Ph.D., this can be intellectually understood. In fact, I thought that at some level there would be a rebalancing of brain use from the left side to the right side while I healed from surgery. I just didn't know what it would be like. Since my tumor was caught early, upon a partial aphasia seizure rather than the complete wipe out that Dr. Taylor suffered with an aneurysm, I thought it would be a minor thing, and maybe it is a minor thing. I still recognize words and numbers, faces and signs after all. I know where I am. I know the people around me, unlike her experience where she could not even recognize her own mother. I haven’t had any trouble walking, and I’ve even been given the go ahead to drive again because it has been 6 months (October 2, 2011) since I was diagnosed as having had a partial seizure.

Still, the rebalance act has surprised me in many ways. I promised to write about nerves and tears and it is more than that. Let's just start there though. When I cry, I expect tears to come out of both eyes, but I find now that only the right eye responds to my feelings of joy or sadness. My left eye is completely tearless and neutral and that causes me to stop and notice it, and when I stop and notice that my left eye is neutral, often my entire emotional experience drains out of me. My curiosity is stronger than my emotions or my expectations suddenly.

The important absence of a single tear  has switched the power of my own responses in a way I never guessed it would. I don’t feel I’ve been robbed of my feelings so much as I feel that they are less necessary than they once were, because now instead of dragging on for hours or days, they come and go quite quickly, like the weather I always swore they were because I’m no longer totally invested in them, whether with resistance or permission. As I’ve become used to having no tears in my left eye, I’ve been more aware the intellectual rejection of my cry has gone now too because I know without doubt it will pass. Now I cry until I cannot sustain that feeling. When there is no logical resistance, or guilty thinking, I go deeper into an awareness of what brought me to tears in the first place in that moment, right away.

Here is an example of how it works. I’m feeling frustrated about writing at the moment. It’s taken days and days of thinking to write about how this rebalance is occurring, and even more challenging is dealing with metaphors that appear as pictures in my brain but don’t travel over to the word side of my brain as easily as they have in the past. I find I want to draw a picture instead of stitching together two ideas with words in hopes that someone understands what I’m getting at. I’m even having trouble reading more than a paragraph at a time. I recognize the words, but they're just a jumble and I have to take it slowly to really understand them. Everything about words has slowed down incredibly in a period of my life when I deeply wanted to be making progress.

I was looking forward to purchasing a book of poetry by a wonderful poet in Denmark, Bo Gorzelak Pedersen, (more to be found at Red Door) and there have been delays and I was sad about it (though he promises that the book will happen and to be patient).  I was sad and I could only tie it to my desire to get back into reading and writing by focusing on something new that I know I will enjoy and I selfishly told him so. Then he posted this poem, and I burst into right-sided tears upon reading it…

GHOST

By Bo Gorzelak Pedersen

Night like an absence of music, 
just a hole for your eyes and the creeping ivy gone black.
Unfamiliar things and things not forgotten, unforgettable things,
it’s the same skin for it all. Echoes of fading and fading echoes.
No reasons why and no why. No multitudes. Nada.
Only what was chewed and spat and left
for the slowest of winds to collect. 
I am trying to read a poem, but it makes no sense.
I can do nothing but shadows.

Immediately, I noticed the lack of left-sided tears and next the right-sided tears disappeared, and I was left with a neutral feeling that I must use it as an example of exactly what’s going on, finally, a way to explain the switch I am experiencing.  Before I would have read it, hailed it as wonderful and felt compelled to go write something. Whether inspired or competitive, his writing has done that to me in the past because I admire its grace and bull's eye. While wishing that I could have written something like it, knowing it is out of range for me right now, I now really wanted to make a picture of this GHOST. I may indeed.

However, I started this blog all over again.  After all, as I said, I am able to see everything that I saw before surgery; it’s just that I can’t express it as I would like to express it. Everything is too formal, too rhyming, too disconnected between imagery and words…but here is this poem by Mr. Pedersen…and it collected the shadows of days when it was connected, when I could enjoy chasing the discombobulated image rising with words that made sense, and I could cry with overwhelmed feelings and no neutrality entering the picture for hours, or days, or months. Like a baby with no tears I recover quickly. This poem captured for me what I cannot seem to capture right now – echoes of fading and fading echoes. It’s all I can absorb when it comes to words, no matter how many times I re-read and re-write. A poem like this engulfs me with a feeling of being recognized, known, and I want to hold it and express it like I'd imagine a ghost wants to hold the material world it drifts through. I find that is more likely with an oil pastel than with my keyboard presently, because I'm lately unclear about what I want to write, even right now.

There’s more to say, or write, but I feel like already I’ve gone on much longer than I would have before.  Suffice it to say that the neurosurgeon said it would take time to reintegrate my right and left brain, to get the nerves in my face out of a state of Novocain, to develop tears in my left eye. How much time? Up to two years. The neurologist told me that in spite of the external signs of healing, the inside of my brain has essentially been hit with a hatchet, and I need to learn some patience. 

Two years is the subtle, or not so subtle, indication that my writing is going to focus on small challenges for a while longer in order to integrate things that used to seem easy to me – words and images, feelings and metaphors, whether to use "at" or "for,"  "when" or "where" and to enjoy the flow of ideas. I’m reading the dictionary and the grammar books. I’m returning to basics to find the difference between “since” and “sense” and “they’re” and “there” as my fingers act like the auto-corrections on my smart phone and drop in “like” when I meant “lost”. The huge projects I’ve worked on in the past simply overwhelm me. A sentence is a good challenge…to write simply without so many words (could I have just written – to write simply?). A poem is even better, though it is more challenging, and so I'll be focusing on other Kosmic Egg and Kosmic Egg Tarot sites, and come here less often because right now it feels like a lot.

Finally, I’ll let Curiosity remain at the head of my table now and let Expectations drop to the side, in between Imagination and Patience. 

Peace, Disneyland and Win-Win Scenarios

Tomorrow I will finally have the benign meningioma, aka little-gray-ball-of-dirty-laundry, in my left temporal lobe area removed. I have been busy all day preparing, and that might seem obvious to some, and mundane to others. This is the thing. How we prepare really matters, I think. 

It's not like I haven't gone to dark places with this episode of the brain tumor. I have. Believe me. I've gone all the way to imagining my death, wondering if there is any reason to stay in this world. One cannot help it maybe when facing the prospect of having one's skull opened up and exposing one's brain to somethings it was never designed for in the first place. I even went to the dark side this week, and then I saw a squirrel gnawing away on a tree branch, and from the looks of the tree branch it looked like it had been doing a lot of gnawing for a while. It's been a bitter cold winter with lots of ice, and if I recall the acorns were not quite as abundant last summer as they've been in other summers because we got our rains late, after the blossoms had come and gone.

So, I thought about preparing for things, and how squirrels seem to get through these times by hook or crook, gnawing trees if they have to do it. I thought about how worried that would make me, and that led me to think about worry and how destructive it has been in my life at times. It causes me to give up sometimes before I've even begun because I might not have thought of something, planned well enough, or hadn't had the resources to thrive. Sure enough all that worrying kept me so stuck that there are times I've made no progress at all for it. But this time is different. I'm having my skull opened up and my brain exposed and I cannot afford it. I cannot afford to worry about any sort of outcomes other than doing really well.

I'll tell you why. I can only plan for one outcome because that's all the energy I have. I'm now on the full course of anti-seizure medication and after years of getting by on six or fewer hours of sleep a night, I'm now sleeping 13 hours a day! I have my kids, my dog and my dear husband counting on me to pull through. I can only plan for the very best. So, that's what I've been preparing for for days, maybe even weeks, and it may seem like I have a screw loose to those who would rather I take the implications of all of this seriously when I laugh giddily and say I feel like "I'm going to Disneyland!" 

In fact, I do feel like I'm going to Disneyland. I've got a good feeling about this surgery. I have studied enough about the brain to know that while my Left Brain is under duress my Right Brain will be given an opportunity to show me another way of seeing things, and that the Right Brain is, well, friendlier, much more like Disneyland in reality than something more serious. I have sent out requests to the ethers. I'd like to communicate with my guides, my angels, my Temple, people who I've missed. I'd like to see what peace feels like for a little bit even. But, even if I just sleep through the whole experience and wake up without a benign meningioma and a funky scar and a really bad haircut, that's okay with me. It's a win-win situation going on here.

I want to take a moment to thank everyone for your support up to this shining moment. I'd like to especially thank my family for their patience with my evolution through the last four and half months. I'm humbled, truly, by everyone's efforts and wisdom and openness to going through this with me. I have a meal train page, if anyone would like to help locally with meals, and I don't know how to get there. I'll try to figure that out next week, because I'll be able to do that. I have one last request: Tomorrow at 9 am - 4 pm MST send tranquil, serene, blue thoughts my way and I'll know what to do with them. THANKS! See you soon!