Little Updates

I thought I'd just post a few updates on my brain recovery situation...

Visited the new neurologist on Monday. I actually spent an hour or so on Friday writing an extensive letter explaining my concerns and emailed it to him because I get to those appointments and follow the doctor's lead and then leave feeling that I haven't quite gotten the information I need. So, of course, he didn't have time to read it until I got there, but at least everything was written down. I'll take the same letter to my neurosurgeon appointment next Monday. I would recommend that when you're dealing with brain fog and things that go with that anyway, that any professional visit you make needs to be accompanied by a list of queries, otherwise, you may leave feeling even more fogged up.

What was accomplished, if not perfect by any means, is a plan for long-term health. Determining that yet another anti-seizure medication was making me sick, we scaled back to the Dilantin and the gazillion anti-histamines. The point being to make sure I don't have any seizures. Suggesting that perhaps the fog is coming from side effects of the Dilantin in generic form, we are switching to the more expensive pure pharmaceutical Dilantin. After two days, I already feel less stressed out and so I think this is a good step. However, Dilantin is not a great drug for women in particular. It is messing with my estrogen levels and it is, long-term, a threat to my skeletal structure right down to my teeth. So, it is still an in-between solution for now.

We identified three potential medications that I may switch to in time, as my brain settles down. I can't remember their names at the moment. What I can say is that they're all likely more expensive than Dilantin, and one of them has a tiny research track record so far. I'm okay with taking my time to get to that switch as long as the Dilantin is not making me sick all along the way.

I went for my quarterly MRI yesterday and had a ridiculous panic attack in the pod. I've never had that happen before and it really didn't go full-blown because I refused to let my mind toy with me. I did this by doing some really patient breathing exercises while the "music" of the MRI rattled through me in dissonance. I breathed in four counts, held four counts, breathed out four counts and rested for counts (or finished breathing out), and repeated, imagining that I was drawing a square over and over again. That quieted my brain enough that I came close to falling asleep. It is funny that they bother to put earplugs in, really. I'm nearly deaf now in my left ear, and it is so loud anyway.

Jurica Jelic Microtonal Music Video

I really enjoy this composer's music, and I love this video that, to me, captures the odd rhythms in the passage of trees in a forest to begin with -- like a barcode. It may seem for a moment like it makes no sense, but if I can relax and listen and accept that the rhythm of earth is not necessarily the same, as say ocean waves, but is there nevertheless. If I walk this way and pass the trees in a forest, it is different than if I walk from another direction. And, this is what being in an MRI is like in a lot of ways. If I lay there fighting for a regular beat then I may have a panic attack, but if I can marry my square breathing to the irregularity of sound dissonance then I can be still and enjoy being in a pod or on a walk.

The nearly last thing to mention is that I'm really feeling better without the wheat, and other gluten foods, in my diet. I am aware this is a partial progress, and that as far as my diet goes I have a way to go before I get to the low-glycemic number of perfection. I'd rather take it slowly and be realistic than to do it perfectly for two weeks and then blow it. This take it slowly and make it permanent seems to be a new theme in my life in all directions. Fast solutions don't seem to hit the mark, even if they come close.

Finally, next Monday I'll see the neurosurgeon. This is my last quarterly visit, I believe. After this I may go to see him only  once every six months, and then once yearly. That would be nice. I'll let you know if anything interesting comes up.

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

The Wink of Potential

Cabaceo
2012 (c) Amanda Morris Johnson

Seven Months out from surgery today! It seems like forever, but I know it is not really that long in any real perspective. I feel a bit like I’ve gone from newborn to a  seven-month old in terms of the leaps of knowledge that have occurred. I’ve gone from, “I don’t know,” to “I don’t know and that’s all right.” Grin. I know how to smile and laugh and sit up now. Of course, I write metaphorically. I could do those things within coming out of anesthesia in the hospital, but now I seem to understand the reality of what’s going on a bit better.

Here’s the thing: They weren’t kidding when they said it would take a long time to heal. Considering how much better and brighter I felt within weeks of the brain surgery, I did have the hubris to believe that I was all better more than once along the way. What I have learned is that the things I am able to do, and the things I ought to do are not a necessary match in the scope of self-care, and real holistic health. I am able to do pretty much anything I want, even write, but my constant temptation to show this to myself and anyone in my periphery is dangerous to my full recovery. I’ve paid for over-doing time and time again since the beginning of summer time because I am stubborn about my ability and not stubborn about my rest. I am trying, trying to switch this in my thinking and planning, but am really an amateur at knowing what schedule I can really handle and I know there is so much I want to be that rest, meh, seems like a Universal manipulation to undo my ambition to be frank, and yet...

When I do too much, and I write this for anyone recovering from serious surgery, I pay for it. There is no recourse. I am down and out, and it isn’t from major efforts. It is from
efforts I consider normal, like seeing friends, taking on a little more work, and generally expecting myself to be productive. I can’t do that yet. It seems insane to me most of the time to say, “No, thanks, I’m not up for it,” when I feel fine. But just because I feel fine after a good low-down time, does not mean I will feel fine after I do the most mundane things to “catch-up” with one thing or another. In fact, I will be knocked out. I am susceptible to colds and headaches, like everyone else who is overdone, but what I am most susceptible to is exhaustion, and it feels disappointing and pathetic to me sometimes.

I really understand how frustrated babies must feel when they cannot do yet what they want to do. It is just around the bend, so close, but sitting up alone, or standing up at the
coffee table is simply not a solo act yet for them. Eating chewy foods are out of the question. Ah, the life of a babe. It seems from the very start of life we are in a rush to catch up and catch on and perform. Is it even possible, within our nature, to be calm and enjoy being slow, and being where we are at? Maybe only if we are surrounded by folks who are in exactly the same place and that doesn’t happen ever, and I suspect even then we’d compete to see who elevated off the floor first.

How can I limit myself, and admit that I cannot take on a normal life when I want a normal life? It is not possible. I just keep edging forward until I fall. I cry like a big baby at the
feeling of failure. Then I do it again!  I really believe this is the nature of our being and to pretend that I’m going to acquiesce to self-limitation until I am better is like putting a child in a car seat and never unbuckling him. I’m going to fall over and have a few bruises and need some recovery time, but each time my determination enters that recovery time sooner. I remember that my potential for accomplishing my dreams is as important as lying down to lick my wounds.

Today, I am in bed with laryngitis, but lack the interest in staring blankly out the window has caused me to write, when drawing out on the dining room table seems too energetic. I will not last all day here. The person I want to be whispers in my ears constantly, “Get up and see what happens...” like the "Cabaceo" look of a gentleman who'd like to dance with me.

What I Know That I Didn't Know Before

Is it really August? Six months out from my brain surgery and I sometimes have no idea how to look at my life. I have to say the overarching theme is acceptance, and the undertow is over-doing, but maybe those are just on the surface, maybe underneath those obvious things something else is happening. Am I really different than I was before I was diagnosed with a benign meningioma last October? Yes, I am. No, I am not.

If you’ve been reading this blog or following me on Facebook, you know that I’ve been very prolific in expressing myself through working with oil pastels since March. My interest in doing that goes back before the brain surgery, but then something blocked my ability to accept that my drawing was acceptable. Much of my pre-surgery work is muddied with a question mark about whether or not I’m good at it or whether I should spend so much time playing with it when there are other more important things to accomplish. I would say that after the brain surgery I misplaced the filter that didn’t allow experiment or even a development of concepts and practice time. That filter disappeared nearly completely, though now I am conscious that I must choose to ignore it when it returns, and it does, until hopefully someday it will just be an archived file of used-to-be.

Falling in love with visual art again has opened new doors for me about how I view my future, how my family sees my time and efforts and how I connect with my friends and acquaintances. This is something I’ve been seeking for years! The enjoyment I get from simply sharing my work and seeing how it strikes people’s fancy is immeasurable. Just fills my heart with joy.

Dare I be honest? Of course, honesty, as undoing as it is, is the mission of Kosmic Egg Projects, myself by a company name. Nearly a decade ago I had already reached the end of my love affair with being a “hack” as my father might define me -- a copywriter, a content provider, a writer-for-hire, a copy editor and yet I continued to pursue the work for the pure reason of supporting my family and having some “freedom” to raise my children. More recently, after 20 years as a word-based communicator, I was already having trouble keeping even an ember of interest lit for a business focused on selling things and ideas with words. Before I was diagnosed, I was deeply depressed about losing my way off the creative path that I *really wanted* to be upon even though I enjoyed teaching creative screenwriting more than just about anything else I made myself do for a living. Still, I felt it was fraudulent, since I could no longer make myself write three scenes myself. I could not appreciate that I had anything valuable to share except what I had failed to stick to myself and achieve even though I knew what needed to be done. This obsession leaked into every part of my life before I was diagnosed. Who knows? It may have fed the tumor to begin with, or, perhaps, the tumor was the crime.

Diagnosis of having a brain tumor just exactly on the part of my brain that should be getting things done, that should be writing well was a huge relief. It was like a “get-out-of-jail” card. It opened the possibility that I didn’t have to write anymore. Can you believe someone who has spent thirty years now studying, practicing, working, and teaching writing was so elated to even think, “I may never do it again,” as a good thing? It is true, as much as I wrung my hands over it here. It is true. There was a little elation.

So I have watched this part of my life and wondered, “Am I really allowed to stop?” I mean we have discovered, together, that I can still write. It has nothing to do with the brain or lack thereof, if I choose not to write anymore. Accepting this possibility into my thoughts throws me into a fit, an internal argument about who I am down to my core. I have been a writer. I may not have achieved what I expected to achieve, but that is what I have been for so long that I cannot think of myself without that definition attached like a talking bubble that follows me everywhere. To claim it as my own without disrespecting my effort was the argument before diagnosis, but the idea of stopping and cutting it free, is unbelievably shocking. Almost like the thought of losing a parent or child, it is that close to the heart. Do these things happen? I feel like I must go to the edge of this abyss and decide finally whether I’m going to walk back away from it, or finally jump in with all my heart.

What does that mean? Wait. I am an artist. I draw pictures. There is a future there that makes sense to begin. What is this writing thing? It’s just an old, beat up stone that’s hanging off a cliff now, and I could cut the chain.

Six months out from surgery, I’m recovering. The left side of my face is feeling heat now for the first time in that long. I am taking tango lessons again and re-learning how to walk in my body, to be flexible, to glide, to feel sexy again. I am drawing better and better, and learning about how a picture can be a thousand words. Still, those words...they keep on pulling me until I decide.

The great thing I know now, that I did not know before this brain adventure, is that there is no way to predict the outcome of my decision. I could do everything right and be exactly where I stand today. I could "catch the thread of luminescence" as Oriah Mountain Dreamer calls "The Call" and have a glorious adventure. I only have to decide whether I am curious about what might happen if...

Time Management

               Besides the challenge of coming up with the word that describes a person who has moved in from somewhere else, with a conversation like this, 
“There are so many trans...”
            “....ients? Transients?”
            “Uhm. Sort of...no not transience. Not transcendental. Hmm. Like, like...an implant from another place.”
            “Transplants?”
            “Yes! So many transplants now! Yes.”
Besides the word challenge, there is the time management challenge...


____________________________________________________

The Fool Sketch

            I have had several moments of weeping, growling, cursing and praying or is it really arguing with God about sending support for dealing with time management this weekend. As the weekend starts to unravel on Friday afternoon with too much exhaustion to follow through on Friday night’s plans and taking care of a sick child and visiting with my temporarily-at-home husband, already I should have been adjusting to get ahead with Saturday morning’s plan. Har. When I started out exhausted, it didn’t mean that I would actually go to bed earlier. To me it meant I would reduce my potential experiences on Friday night from three to two.
            I won’t even go back and explain why I was tired. It was embarrassing. I was aghast at my ability to completely space out my commitments. It isn’t important. It’s the way these days. It’s just the way.
            My choice for dealing with exhaustion was, instead of going out to an art gallery opening for just an hour to see an old friend’s new business, I would stay home and make dinner, that I hadn’t planned on making, for two people (my daughter and husband) who were supposed to be somewhere else. I decided I would hang out with them for precious-to-my-heart’s moments of conversation and laughter. I would not trouble them with my need to take off chipped nail polish because I can barely stand to smell that nail polish remover myself. I would put off dealing with the laundry to the next afternoon when I got back from the outing I had planned for Saturday morning. I would stay with them as long as I could because their presence is always a gift and special when unplanned.
            So Saturday morning arrived and the chipped nail polish screamed at me after I’d walked the dog, made the coffee, and done everything else to get ready to stick to my original plan on 5 ½ hours’ sleep. What about fifteen minutes before I had to leave? I could surely remove chipped nail polish in fifteen minutes. Har. Obviously I haven’t painted my fingernails with color for many years. Fifteen minutes covered a single thumbnail. Once one thumbnail is colorless the rest of the nails’ volume increased. Finally, already running 20 minutes later than I’d planned, I gave up with one hand nearly done, if very red now, and the other looking more chipped than ever.
            Fuck it. I’m an artist with funky undone nails. Yeah baby.
            Wish I was that tough. Instead, I’m standing over the sink weeping over the fact that I can’t get this small task right. My husband rubs my back and tells me not to worry about it, but to get out there into the world.  How hard is it to leave my home for a few hours in the morning? Every morning I would weep, if I could get away with it, but there are the dog, kids, family and friends that expect that getting out of the house is not really a big deal. I always have run a tiny bit late, but now, it is exponential. I have no sense of how many tasks I can handle in any given period of time, and, lately, I seem to always commit myself to too many.
            It was so much fun when I finally arrived to get to know two women better than I knew them when I used to know them. That’s how it is with time. We walked around the place we would have walked around thirty years ago, had we walked around together at that time at all, but the fact that we all knew the place and culture so well, and had so many folds of our lives touching, it was as if we had, of course, done this before. (Thank you Alice and Stephany, for your patience with me, and for a lovely morning looking at art. It was truly inspirational.)
            By noon, I could not absorb any more visual information, nor carry on a conversation with the words I meant. For instance, in a moment of intended helpfulness, I replaced “pool cue” in the conversation for “fishing rod” for no more reason I suppose than its long narrow shape, and the possibility of it being in a garage.  Because…that’s how my brain works now.  I pleaded the fifth of brain surgery recovery, and left like a good girl. Driving back home I remembered something I’d forgotten.
            I had promised to talk to a friend this weekend, after missing several chances in the last week. She’s on East coast time, and so the trick is to talk in the morning, but have my mornings been open this weekend? Of course, not. Did I realize they would be filled? Sort of, kind of. I knew I was going out with my new-old friends. I pulled over and texted a message that I’d be home and ready to talk. Was I? Of course not.
            When I got home, several hours walking, talking and looking at art, not to mention driving there and back LATER, had me exhausted. I climbed in bed next to my ever-reading husband and fell asleep for 10 minutes! Then he coughed. I woke. Then he left the room, I slept for another 10 minutes. Then my medication alarm went off. No sleep. I rose, I wandered. Completely out of touch with the memory that I’d promised to call my friend. I checked in with my daughter, who’d decided to stay another night, and thought I better come up with some dinner. I headed out to the store. I remembered I already had food. I came home. I sat down and sketched a few moments and finally remembered. I sent a text message, to my friend apologizing that I hadn’t called, predicting Sunday morning would be better.
            I made food. Ah yes! I hadn’t eaten anything all day! It was like that. It is like that. Between taking medications and eating, remembering just those two simple things, it is a veritable hammer-head situation. (As I’m writing this, I realize my alarm has gone off at least once, maybe two times today and I haven’t taken my medication yet.)  I watched a children’s cartoon as I ate my omelet at 3:30 pm and felt better.
            What to do? It is just stunning these moments of blankness that take over finally. What can I get done? This is the question that floats through my brain like a mist that hasn’t formed yet into a good, soaking rain.
            It’s been 24 hours since then. I still haven’t spoken to my friend on the East Coast because I had forgotten there would be the time suck of getting my husband fed for his driving day back to the work site, and getting my daughter fed, and ready to go to her dad’s and driving her there and back. I forgot about the time it would take to walk the dog now that it is a reasonable 65 degrees instead of 105 degrees. I forgot that I didn’t have aluminum foil, which is something I needed to make the thing I wanted to make, and so also there was the trip to the store and back, and then oh yes, oh yes, it is my step-mother’s 65th birthday, and I needed to get fresh cut flowers because that is what she likes best. At the store I momentarily forgot why I was there, but luckily I remembered that and a few other things.
            Yes, I would weep over the sink everyday over these overlapping things that do not stay in my mind (I’ve already forgotten about taking my medications again), even when I have alarms and calendars, lists and post-it notes. I’m going to go and take my medication now, Time. Thanks for reminding me.

Healing by the Season

It’s been about ten weeks since they sawed a piece of my skull out and entered my brain with a knife, and recovering has been AMAZING, like an early spring. After stubbornly facing brain surgery even when it was very scary, it has been astounding how fast feeling good, even better, returned, after years of feeling mediocre. I don’t have the endless low-grade headache anymore. I can affirm I’ve already lost ten pounds only because I don’t feel the need to energize myself with food anymore. My hair fell out last fall like leaves off an aspen in October, and it is now growing back like the leaves on an aspen in spring, all at once. I’m the star patient of my doctors, an affirmation that they did the right thing.

In the same ten weeks spring sprang on us ravenously and rapidly. Such an early spring that nations are sneezing all around the northern hemisphere.  We struggle to fully enjoy it when concerns about a dry summer rise, and fires are already cropping up like the best produce offered this year. It seems that this is the perfect metaphor for my healing experience. It is nearly impossible to say, “too much, too soon,” but it looms.

I remember this particular early crocus from my miraculous recovery: we were all a chatter of excitement about my return from the land of the dead after my surgery, and it was ravishing! Just like before the evidence of any spring blossoms or greening up even at the edge of a sidewalk, the birds knew everything was going to be all right, we also knew that my brain made it through the roughest patch. Lots of chirping.  Ah. This was one of the happiest moments of my life so far. It didn’t matter that there was still snow here and there. Even though there were the few things I needed to straighten out along the way all that really mattered was that I could bask in consciousness. I could walk, talk and even write somewhat. The birds returned.

Then the amazing buds arrived as I began walking my dog, Lucille, around the trails, and the days became longer, and the sun became warmer. As my body returned to functioning, I was overwhelmed by the beauty around me to the point that I saw shapes, forms, colors as never before and felt the need to begin expressing them as shapes, forms and colors of pastel on paper. The buds blossomed and the drawings blossomed and it was gorgeous inside and outside of my brain. It was one tree after another, one painting after another and the birds upped their ante and sang for connections, and so did I.

It was a thrill to feel better, so much so that when invited to do something that I’d been saying, “No, can’t do that now,” for six months, I struggled to hesitate at all and often slipped into saying, “Yes! Yes, please!” It would have been impossible for the crab apple trees to second-guess their beautiful early blossoms. Wouldn’t it? I simply bloomed with, “Yes,” to everything that was offered at first, until the storm arrived and blew the energy of my artwork out the door because there were other things I’d promised. The wind and sleet blew all of the crab apple trees’ blossoms off before the bees and butterflies made it out of hibernation. I felt sorry for the trees, and this caused me some vague self-pity too. I felt concerned that, perhaps, I should have paid attention to the doctors who urged me to take things slowly.  Yet, I wanted to live up to what I had committed to somehow. It felt unnatural to say, “No,” anymore, even though I was often embarrassed by the result of “phenomenal me” disintegrating. How to stop bursting back, I wondered?

Still, it isn’t exactly like I was returned to mediocrity exactly, any more than the trees sucked in their buds for a later date that would have been healthier. It was some other disconnect. For instance, I’m a good cook and so, almost immediately on release from the hospital, I started cooking for my husband and family and was greatly relieved that I could pick this up where I left off, to the point where I backed away from the help offered me by others. Another early blossom? Yes. Oops. I was like a two year old saying, “I do it myself!”

Now, when my children ask me a question, or I get an idea to write a poem or draw a picture, my attention shifts from cooking COMPLETELY. I burn dinner. I simply forget I am cooking dinner. I can’t say that never happened before brain surgery. I can only say that it was not often, and now it is often. It ain’t incense. I realize late that the lovely assistance of having people help me to cook had nothing to do with my cooking abilities, but with the ability of my brain to focus on more than one thing at a time. I feel silly about asking for help when I am often fine, and unpredictable in my “need” mode, and so it boils down to something else, too.

What do I give my attention to? Necessities? Expressions? Requests? Questions? Decisions? Bah! At least, I am sleeping through the night again.

Kim the Knowing

Multi-tasking turns out to be impossible at the moment. This spring has been strange with all the trees blooming at once somehow, and for me explosions of poetry and the ability to read more than a paragraph and DRIVING my car again happened to me all at once. Oh man. Driving. It is so gratifying to be able to go to pick my kids up from school, to go to the grocery store again when I forgot to buy something (so very often). The trees get their leaves, and  I get my responsibilities.

My concern rises again: Where are the bees?  Normally it is too early to be buzzing around efficiently. They’re just now emerging from their hives a month after all the blossoms. I have seen only one butterfly and the lilacs are in full bloom. The lawns mowed now, but the mountains’ snow is already running down to ponds in a sorry manner so that I see geese and ducks fighting each other for the right to lay their eggs at the few sustainable places. Life cannot happen all at once. I am also the most gigantic spring sneeze I can remember, as I collapse every few days from this, yes,  too-much-too-soon scenario.

Grasping for relief I ask myself, what could I calm down reasonably? I noticed the birds were calmer during mid-day. Not so much chatter. What were they doing? I found that they were nesting. There were the birds flying by with twigs and grass from last year in their little beaks. No time to talk. I followed their direction. Stop chatting so much! I apologize. I have to stop talking all day and focus on building my creations, and this is a huge leap for me into a new state of being. It means I don’t just lay my eggs (my creations) along the way, leave them there for another chance. Actually I create a safe place for them to develop and stay with them until they hatch. Hawks spending chunks of time surfing on the warm funnels of air that rise from the fields give me perspective to see the big picture and not just temporary glories. Maybe if I focused on creating quietly and in a self-protected zone during the day, then I could actually start cooking dinner at 5 pm. Well, it is a thought at least.

Meanwhile the lawn-mowing has brought up a new realization. Summer is almost here. There will be days of tending to things and days where nothing will be tended, and my husband will be out of town for work, and it will be hot and slow. There is only so much time for each thing when only one thing can be done at a time. My kids are growing up so fast. Complexities must be abandoned now. I simply must say, “no,” and clip back at the incredible desire to say “yes” to everything with the understanding this will keep the growth fresh for a while longer.

Maybe it was the scare of having an arrow fly through my life, a brain tumor, and the joy that  life blooms here now. I know it is possible for me to focus only on my own priorities: my creative projects, my family and my time.  Yes, there are going to be fewer blooms, but timed for fruit-bearing pollination hopefully.  

I am improving at the artificial life tests thrust at me by the Universe to see if I know what I know. I see the familiar comfort they offer -- those old ways of pleasing others with predictable patterns, so many blushes of color, guaranteed to squeeze out some approval. I see how that serves no purpose in the long-run. This time I bloomed wildly and early, and I know why. I’ve seen what happens when I walk right into what I fear, and it is good.   There is no pity in the lessons of early spring, the mistakes and sneezes, the blooming gorgeousness. There is no pity knowing it will pass into a summer that will require attention and focus like no other. To every season, turn, turn, turn….

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. 

Life's Rebellious Surprises

One of the oddest experiences of myself after surgery is the feeling, re-feeling of being a somewhat rebellious teenager. Now, in fact when I was a teenager I sort of rebelled against expectations by succeeding on certain levels. I was “Head Girl” at my high school, East High in Denver, and I had a starring role in the musical, and sang in a National Award Winning Jazz Choir on the official levels, competed on speech trails, and kept up my grades sort of. But I was risque on unofficial levels. Like when I went with my family to Australia, I had a wild two-day affair with an absolute stranger named Les, who was the first young man I knew with an earring, tattoo, leather pants and a motorcycle. I scared my cousin Josh to being unnerved as I went for a ride away with Les, and later made out with him in an arcade, and then had us meet us at a bar in Manley. I bought my first red mini skirt the next day, and later introduced Les to the cousins, but honestly, I would only be in Sydney for one or two more days, and it was already fading even as I got stoned with him and rode over Sydney Harbor bridge on the back of his motorbike...

she was just 17, if you know what I mean...

So, at the moment I feel very allied with the girl I was who willingly tried a relationship with the world expressed by Les, that wasn't so darned predictable, or so I thought. Part of this is because I’m having a resurfacing of pain. Somehow Tylenol has not been keeping the pain of my left side at a minimum. I can’t stand the percocet or oxcodone and there was a great resistance by the medical group for me to try anything else...so even though I’ve been taking a maximum dose, the pain has been building me into a pretty grumpy, pissy person who expects some other people in the family to keep up the actions I normally do just exactly like I do them. Making peace with help coming in its own way is a challenge. I have become a finger-pointing, impatient shouter who has had to repeatedly disappear under the covers of the bed and count to ten as I dream about shaving off the rest of my hair and wearing the most grungeful expression I can find.

I finally started calling all the nurses from under the covers and telling them that they’d have to do more surgery or something because it seemed clear to me that as marvelous as it felt Monday, it was equally horribly just two days later. Something was NOT RIGHT about healing with so much pain, so little sleep and the inability to keep even my glasses on to see because of the trouble they caused.

The nurse I finally reached guessed right from the start about my grumpiness, and said, ah, yes. She asked about what I was taking and whether I wanted to get back on the narcotics, and I said not a chance unless they had to do surgery again. She agreed that the narcotics seemed to have made me sick even in the hospital. So, she said, “well, you’re two days early but why don’t you try Ibuprofen and see what happens.”

HALLELUJAH! My swelling brain is always the thing. I’ve had a near lifetime, well since rebellious teenage moments, migraines, and the accoutrement of aspirin and caffeine with Tylenol has always been the answer. Not being able to take the bits and pieces together has been pissing me off because I know what I know about my body and swelling. That’s why I’m avoiding wheat, dairy, nightshades, legumes as it is and that’s why I’m taking a gazillion anti-histamines along with the anti-seizure medication. Still that is not all enough to reduce the brain swelling and so finally a little addition of Ibuprofen, well, ahhhhh, it gave me hope.

Thus, I took three at first, then back to Tylenol four hours later, then four at bed time, and lo and behold I slept an entire four hours! And, took more Tylenol and felt okay for 2 more hours, and even though my head hurt there was this sense of opening a box of treasures inside, a feeling that I could begin to turn around the pain and become restful and peaceful again. This brought me back from the angry rebellion and into a notion of simple rebellious alliances that had more to do with ideas than with a feeling of trying things that could only last a few days in a hug of hopeless. You see when I had had that affair with Les back in 1981, I knew it was only for a few days. It shocked me when I received letter after letter in the following months from him with half a dozen stamps each. I don’t remember even writing back to him because already I’d sent myself into so many official experiences and projects and friendships locally. The few things I took back into my life from Les were a red mini-skirt, and how to roll my own cigarettes with Drum Tobacco. This appearance looked enough like a rebellion in 1982 to cause others to wonder what I was up to, and I felt ahead of the crowd as I wanted to, but in fact, had sunk back into routine.

Now that I’m a middle-aged woman with a plan to keep a connection to this brain surgery experience, I’ve concluded I won’t be the one who hides the scar in a new cover-up haircut. Rather I will show off for a while, this experience kind becomes of like a red mini-skirt from years before, and must be expressed by asymmetry and possibly some wild color after I get the staples out and the wound all healed. My willingness is to discuss the ups and downs of the whole affair this time, not just all pleasantries (for I was certainly frightened by the chance that Les could have really taken me down the wrong road, and this was something I put myself out for experiencing until it finally happened with some other lost boys, one after another), and at the same time understand it is actually a temporary upheaval. I will turn a corner at some point down the line and realize that brain surgery was something that happened and made an impact and scared the family even when I wasn’t particularly afraid but mostly was completely devoted to beholding the instance of the moment. Rather than abandoning its story, as I did abandon Les rather cruelly, this time I’m going to express this near rebellion with others who share the feelings, and celebrate the growth and travel through it, the good stuff and yes, the bad stuff even on my own part, too. I’m not willing to hide the distraction of this wondrous time, and I’m no longer willing to ignore the meanings of brief love affairs with life’s surprises.

Ten Days Later - Survival

As the evening comes on, I realize it really has been 10 full days since I woke up from brain surgery. So, first let me say, "Yes, I survived!" There is a lot more to say, and I find that specific words can be challenging off and on still, so I'll try to stay simple this entry. All in all my body is pretty healthy as I return to life's everyday experience. I can walk. I can point and write. I can cook and fold. I can see. My appearance is rather rugged at the moment; though even since this photo was taken a few days ago, my hair is already growing in. I am itchy as the drugs fade away.

There are some good challenges. For the first time in several years or so I want to exercise seriously, do yoga and move my legs and arms. The desire is incredibly deep and has nothing to do with vanity. In the hospital I started doing ballet bar exercises from my childhood when I was left alone. In the middle of the night I have been doing half hour yoga sessions on my daughter's mat in the middle of the living room. I feel like there is this new flow of energy through my whole body that hasn't really been around for more than a few years. I go for a walk in the morning and find it way too cold, though. So that's a surprise. Here I want to exercise, but having freezing air blow into me is completely shortened to the very minimum I can get away with because I can't seem to defend my body's temperature.

Temperature is a funny thing, too. Last week I ran a constant low fever of around 99 degrees, and I'm down now to 98 something. However my "normal" body temperature for years has been 96 degrees. This is all numerical and blah, blah, but the weirdest thing is that as soon as I am thinking -- like now -- I break out into a full body sweat. Does this mean my brain is working out? Maybe so. I am having to change my clothes several times a day, and wipe the scar and staples with a cool wash cloth to deal with the fact that thinking is a very hot business right now that seems to effect me top of the head to the bottom of my feet. I really hope that this will pass in a few weeks.

Thinking is interesting. I don't think with words mostly. Hmmm. It's bizarre. I look out and I have a conceptual understanding of whatever it is, but it takes a bit of time to come to words. Like this. This takes a little bit of extra time to come up with words, though I know I want to recognize these few things and say something that means what my concept is acting out visually. I dreamt of entire life sets for everyone and that has created a whole story in my brain, but I am unable to write it yet. I enjoy the pictures and the meaning of the pictures.

So, of course, I've been drawing. I've commented on some drawings and paintings on Facebook, too. I have appreciation for art. It has occurred to me that my life belongs to the arts so much more than I've allowed almost my entire life until now. For some reason I always thought I'd be more practical and my artwork was not terrific. But, now I kind of like my illustrations and moods and I am inclined to say that there will be more artwork now than there was before. I hope that is true. I really do.

Finally, I'm thinking about filmmaking and screenwriting yet again. I always think that I'm done with it and the fact that I now have three screenplays in mind after fits and starts for the past several years, I'm basically entertained by it. We'll see if the words will come back and explain these visual films I have in mind that explore the edges of the world we believe in and the possibility that just the other side of the door is a new world edge that we could embrace, or pass through on the way back, and that the way they all fit together is like the most amazing faceted gem in the Universe. We'll see.

So, that's it for now. I'll be getting the staples out of my head on this Friday and will find out what comes next. Thanks for keeping up. I need to go take a shower now and change my clothes.

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!