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 II

Wave 4, Oil Pastels on Archival Paper 6" x 10"

As I was saying...recovery...

My right brain, it turns out, has a lot to express. Prolific is an understatement, especially as my energy reserves gained some momentum. At times I have been drawing four or five pieces of artwork a week! I went from drawing pictures of people, to drawing pictures of the dreams I was having about great waves that I would simply walk into. It was an “of course I walk into giant tsunami waves” moment. Then I began to combine the style of the waves to the faces I drew, and so on all year, just seeing what I could do with this wonderful, colorful, soft and tender medium, the oil pastel. Again, I received so much support for what I shared with the social web that it encouraged me to create more and more, to experiment with detail and ideas. It has become a possible pivot in my career goals...to be a professional artist. I am looking for some kind of viable confirmation that this is a sensible thing to do. Har. I have projects and ideas just growing all over the place and a need to set up some parameters and plans for them before the garden becomes an unmanageable jungle...

Dragon Wave, Oil Pastels on Black Archival Paper, 19" x 20"

My friend, Erika Napoletano, made a few  really viable suggestions in her blog about new beginnings earlier this week. She suggested looking at what was NOT next. Oy. That would mean a decision and while it was easy for me to quit some things along the way, it is not easy for me to quit the something that used to be my dream, but maybe isn't anymore, and maybe needs to be revisited before I really, really say NOT.

I am challenged by the thing I once dreamed of doing for my whole life, well since I was about 10 years old: writing. I was challenged for a while before I was diagnosed. I’d say I’ve been struggling for 7 years to stay with writing, for writing’s sake and for a career path. The left temporal lobe is important to the skills of writing, but not to the talent of it, I believe. Why do I feel this urge to write, and feel just as much, "oh no, really?"

So it is never a shortage of albeit rusty skills and opinions. This is a long, long blog, for instance, and I knew that much, so I divided it into three parts. It is a question of what is my point? What can I say that hasn't been said a million times better by a million other writers? I would love to be a writer who could write about adventures I haven't had because that is really what I dreamed of writing. Turns out I write about life as I live it, and I can't imagine that it would entertain anyone as much as it entertains me. This is a writer's conundrum, period, but it is a weird struggle now with added problem of the order of words being not normal and in need of practice.

Before I had the surgery I composed 100 poems, easily. They aren’t perfect. The grammar is a mess, but when I take a moment to fix that, to rearrange a few words, they’re not so bad. I really love some of them, especially my Tarot poems. I have always had a thing for poetry, but, truthfully, I wanted to be a screenwriter. Screenwriting is about setting up the visual of a hero's journey and that’s my thing. I wanted this for an awfully long time and made some good progress up until 7 years ago.  Ask any of my students and they can confirm I have a true passion for this craft. Perhaps, it is the divorce I went through from my co-producer that increased my trepidation of touching the craft and letting it grow, or perhaps it was the pressure, and release of pressure, on my left temporal lobe. At any rate, screenwriting has been put on a shelf, and now I’m at a stage where I am considering putting it into the storage unit for memorabilia. Leaving windows open for a lot of other ways to write, but still.

Here is an amazing little piece of irony. The book I was studying, "Story" by Robert McKee, a screenwriter's guru, was left behind at the hospital after surgery. I didn't miss it until two weeks later, and by then it was long gone. Hmmm.

The Composer, Jurica, Oil Pastels on Archival Paper, 9" x 12"

For this and so many reasons this has got to be a NOT. It is a young person's business. I know this. And, yet, I know writers older than me making great progress into it, and then I know I'm lying to myself, making excuses. If you’re too young to imagine this, imagine the fear of choosing the wrong passion. Essentially, a moment to admit defeat is not really a great feeling, but a 7-year moment of indecision is much worse. It is not that I don’t know what I know. It's that I know that I don't know what might happen if I threw myself full force into this thing that bugs me often if I'm not drawing. Ugh.

I value facing the truth, and it is coming to me that this may be the truth. In the long run, I never despair about truth.


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.

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.

Word. Words?

The Cave

The most difficult thing is to communicate, to explain anything as I am recovering from the removal of my benign meningioma (the brain tumor that was diagnosed in October of 2011). While I may seem to be myself, I really do not feel myself yet...over four months out from surgery. I enjoy being alive and I am experiencing a creative surge that my productivity can barely keep up with, and most of all I am grateful surgery went well and I can still be available to my kids and my husband in the most important and general ways. Yet, there are disconnections and missteps and losses that pop up into my day-to-day existence that cause me to ponder how to really get to recovery that feels 100% beyond the general and that is specifically me, the person I know myself to be.

Moonsight

Writing from the heart is, perhaps, my greatest challenge. I write something over and over again now, that, before this adventure, may have seemed acceptable after one or two tries. My heart feels disconnected from words mostly. I do not know currently if it is because I was blinded to the confusion in my structure and connection before, or whether it is because I will run into a word that I have an idea for but cannot locate in reality, and this is part of recovering. I’m quick to replace those words but often my replacements lead me down another road than I’d intended. This happens in conversation as well, a constant reaching for words that match my ideas and thoughts. I used to have a vocabulary.

Further developing this word replacement in a “benign” way, a way that is constantly entertaining to my kids, my brain seems to work a lot like a smartphone type screen - in that it offers a slew of words that are somewhat similar in spelling and often chooses that word arbitrarily. Spelling or phonetic choice having a higher priority than meaning everytime. I try to catch these words and replace them correctly as soon as I can, but, if you’ve used a smartphone at all, you know that it is a frequent problem to have commented in a way you never intended. Bring that to a conversation. Add another person to the conversation, or a roomful of conversations, or a radio or a television in the background and imagine the brain reaches out and grabs any number of words and spews them into the conversation you’re having with complete disregard to what you’re actually talking about. Yes. I’m a lot of fun. My daughter says with an awesome smile on her face, “Mom, you said that with so much confidence!”



I’m wondering if I’m writing any of this in a way that you can understand, but I’m going ahead and posting it just to see what the response is because maybe I’m the only one that is frustrated. Because this is the other thing, when I try to read this stuff, it is difficult to decipher. It is difficult to decipher an article, a chapter, anything longer than 144 characters. I feel like I should hold my hand and get serious about sitting for an hour reading, but after 10 minutes, I’m lost sometimes. Not always, but sometimes I am simply unable to read. Sometimes a person hands me a business card or an appointment card and I look at it as if it is a picture, waiting for comprehension.

Nature's Balance

All of this word stuff would be driving me even more crazy except for the fact that I feel free, in a way, of the obligation to know everything for once. I have become aware of the weight of my expectations around words. I would like to skip the know-it-all need sometimes. Sometimes I would like to turn my back on the old way, and accept that I’m now primarily a visual person, someone who communicates with icons and symbols. Sometimes.

Then I have an idea for a story, or a letter, a good conversation or a speech and I’m revived in the battle to win my brain back.


2012 (c) 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. 

The Long and Winding Road...Leads Me to Me

It has nearly been a full month since I had my skull opened and the little-gray-ball-of-dirty-laundry removed. What a month! It started with what I can only describe as partial delirium. I was so happy to have the thing out of my head, and I suppose the morphine, and anesthesia sort of had me on a different plain of perception for a while. Yet, I was a lot less delirious than I had really expected to be, to be honest. 

Fionn, the Modern Muse

Soon after surgery I woke up and in my daze recognized and remembered where I was and what had just happened. I saw my ancient Neurologist, Dr. Philip Yarnell, across the room and shouted out a, “Hello, Dr. Yarnell!” to him, and I think that sort of surprised him and he came right over and tested how I was responding to left and right movements like touching my nose with my eyes closed with the fingers he chose, and moving my toes. Afterwards, he said, “Yep, you’re going to be just fine.”

At that point I felt no pain but I was terribly thirsty and so I asked for water, but all they could give me was ice cubes to suck on and little sponges to dip into water and suck on. So I did. This was followed by my husband and father bounding into the big room together with smiles on their faces, delighted that I was so chirpy.

Then my Neurosurgeon, Dr. Mark Robinson, walked in to talk to them, and as they talked, I felt some kind of relieving sleepiness. I remember Dr. Robinson pointing at my head, and nodding and I remember them asking some questions and him answering, but I have no real memory of the words, even though I am pretty sure I participated in the conversation as if I were very intelligent indeed. Har.

I was taken care of in Intensive Care for a surprising two days. I say it was surprising only because apparently they expected I’d be going home after two days, and that didn’t quite happen. As good as their intentions were, some things got kind of icky.

Devora is Awake

Before I go there, I want to tell you that I did something very important to my recovery unbeknownst to the medical folks. In secret I took a large dose of Arnica the morning before surgery and then when I got to my ICU room I had Michael bring me a second large dose of Arnica. This homeopathic medication has helped me in previous medical crises (oral surgery, and a hysterectomy) to recover super-fast and very well, with little bruising. I encourage you to sincerely consider finding more about it if you’re facing surgery. Unfortunately, you cannot discuss it with a surgeon or the nursing staff because they don’t work with it, and will rule against it. Someday, I hope this will change because I've healed fast enough to get wide eyes from the doctors...

In ICU, meanwhile, they were pumping me full of Morphine and all kinds of other medications that my body is not fond of at all. Sadly. By the time it was dark outside, I was vomiting in a little pail the nurse quickly provided for me. As I was recovering she started putting in an intravenous dose of Dilantin. If you don’t remember how badly I reacted to the first time I took Dilantin, let me say that my reaction to this way of taking the medication was near paralysis. I made her take it out after only a 1/4th of the dose was given and I could feel it as it climbed up my arm and into my head, like a march of pick axes within my veins. I screamed. I admit it. I screamed. I shouted at her that this was not the way we were going to do anything. I asked her if she had bothered to give me any antihistamines or Zantac (could this be why I was throwing up, perhaps???). What followed is that I had to review with every shift nurse exactly how the medication business was going to work, and I would not let them use the intravenous hoses for anything but water and anti-nausea medications. I stopped taking the morphine and moved to oral Percocet and oxycodone. I didn’t really care if I had a little more pain. I was very self-advocating and protective. 

Meanwhile, the left side of my face swelled up like a puffer fish. I got a black eye that I could barely open. Frankly, I think I had a severe allergic reaction to the entire experience. I looked no different in those moments than I had when I’d reacted to the cotton harvest on my Pretty Pa’s combine in the Rio Grande Valley some 42 years earlier. I had to build up all the anti-histamines in my system and the hospital pharmacy didn’t actually carry one of the anti-histamines, nor the Zantac I’d been taking leading up to the surgery, so my dear husband had to go to the grocery store and purchase what I needed. The hospital didn’t even have the oral Dilantin to fill in the missing 3/4s of a dose of it for several hours.

After two days they moved me to a regular room and they removed the blessed catheter and I was able to move around my room when I rung up the nurse to remove whatever IV was hooked up, the blood pressure arm squeeze and the ever-marching leg thingies. Ah. That was such a blessing. Finally, a neurosurgeon on call at the hospital came and cut the gauze turban off of me, and told me I could take a shower. Hallelujah! I thought I’d be going home right afterwards, but apparently, not.

All this time, my husband sat quietly next to me, reading his phone in the dark or daytime. I must have slept now and then, but I don’t remember sleeping lots. 

Another two days went by. I watched some television and really couldn’t perceive how so many stupid infomercials could exist. I tried to watch news, but settled on The Weather 

Oriah Enjoys the Lake

Channel. That was the only television that made a lot of sense to me. Passing storms, wind, sunshine and snow. I would then dream of the sets of shows and watch people walk in and out of these sets that were actually their lives, and how the world beyond the sets they believed in was totally different, open to change, neutral. The sets were set, but they were not true reality. They were perceptions that had thin walls, and the potential of being blown away in storms. Beyond the sets was a world or a dimension of reality that had not been decided on yet, and I could walk in it.

Another set of dreams I had placed me back in 1996, when I was at another turning point. After eleven years in a difficult and abusive marriage, I had determined that I had to begin living my own life and pursuing the things I was truly interested in. I had done three years of weekly therapy and was meditating daily and my creative spirit was expanding in many new directions. My dream then was to write very artistic, visual scripts about lives that were not easy, poetry and to create a new Tarot Deck called “The Cosmic Egg”. I was ready to consider leaving my first husband (now wasband) and even our house that I had painted wall murals and re-landscaped with a triskelion and a fire pit, a forest of gingkoes and redwoods, California poppies and tea tree bushes. Still the only person who knew that my husband was abusive was my therapist, and so when my therapist became abusive and insisted that I wanted to have an affair with him, my evolution unraveled rather quickly. 

Within four months I went from my first steps towards independence backwards into a desire to be approved of by supporting my husband, and even finally fulfilling his wish to have a family. I turned my therapist in to the board, and I gave my husband a cut up condom for his birthday. I went from being a part-time freelancer with time to paint and write, to a full-time publishing consultant with no time to even mother the child I was pregnant with, so that by the end of the year I would have a personal assistant, a housekeeper, a gardener, and a year later a nanny. I insisted giving up the house with my murals painted, and moved into a swanky Spanish Colonial that may have once been a boarding house to Charles Bukowski on the two block street named after my favorite inventor, Nikolai Tesla. I went from $25 dollars in the bank to making $15k a month. Yes, all of this really happened that quickly. It was all for approval from my first husband, from my friends at the time, from my parents, and I got it. And, it undid my chosen road very precisely. 

Alma in Her Habitat

Oddly, the dreams I had were very much about saying good-bye to those mistakes peacefully and accepting that my dreams continued painfully, like a forgotten and downgraded pavement next to the approved highway, throughout the last fifteen years. The dreams continued to be alive even if they were fought against as distractions from cleaning the house and taking care of my children and seeking approval from everyone. In one dream I told my husband of 1996 that I loved him, but that it was time to move on. In other dreams I made peace with my children and told them that their independence was crucial to me.

The doctors sent me home from the hospital on the fifth day, and the dreams continued in my hour and a half naps, and even as I was awake until they felt processed and comprehended. I found it hard to concentrate on “reality” to the point where I was occasionally overly grumpy at the disturbance of life to the unconscious realm I had such good connection with for the moment. I hate to admit that I occasionally snapped, and apparently this is common for people recovering from brain surgery. The word patience is hardly enough for making a commitment to decide whether to stay in dreamland or start coming into reality.

Making these dream-level departures from the decisions I made in 1996 has been such a relief, but has also unleashed years of frustration and anger over carrying the weight of a life that led me away from my true self. Yet, in just a month I have some sense that I am reuniting with myself, putting my feet on the abandoned road, after years of pounding my head against the wall of approval...could this be the reason for the tumor?  So, as I’ve come out of the haze of medications, and gotten confirmation that the tumor was indeed benign and that it had been caught early enough to have no lasting damage, I have hope unlike any hope I’ve had for fifteen years. Though, certainly, there are temporary setbacks like the pain and lack of rest, and that the left side of my face feels like it is just coming off of Novocaine -- all the time. I feel confident that I’ve turned a corner again and found myself in the realm where the sets of my life haven’t been completely determined and there is the potential to create some new and simple realities that are better aligned with who I am now. Where the road I'm now on can find the door to this set.

I have been practicing artwork again on a daily basis, and thinking about the off-formula stories I’m always intrigued by, but had learned to reject in favor of an approved formula that I've grown to hate. I’ve been resting and waking at all hours of the day or night. I’ve been watching how my daughter, Bea, is increasingly aware of the world she is entering as a new adult, and wears her grief over her lost childhood. Then also I’ve been watching how my younger son, Lio, is already aware of some aspects of adulthood that excite him to the point where he’s leaped ahead of the family at age eleven to webbify his life with video streaming, video chats and group games.

Dear Quimby in Pastel Land

My wasband has been as supportive as he can be, and taken time with the children that I normally would have had. He is who he is still, and they’ve both had terrible colds that lasted longer than a week and needed some Mommified assistance. So, both children have had extra days here and there, but only one at a time.

Finally, my dear husband has been carrying the load of my transportation, childcare and household upkeep for some six months now, and has concurrently become increasingly responsible for projects at work. He’s like a Lancelot, courageously determined to see that things get done because they need to get done, and at the same time exhausted, and falling into the river of forgetfulness because there is just too much on his mind. Now, poor man has collapsed with fatigue and the caught bug of his step-children. 

This leaves me, only me, to be fully conscious and begin taking care of business, too. I’m glad to say that I can to some degree, and that what I can’t do, I’m actually fine about not receiving approval. This is a leap for me. I will hang on more determinedly to the emerging unconscious knowledge I’ve always had and hidden from by trying other roads that might be worthy of rewards outside of me. This, for me, is real healing because finally I comprehend that the road I'm on now leads me to my own door.

Magnetic Poles Switching Inside

This experience of discovering the benign meningioma, struggling to get ready for it to go, having it removed and then recovering from its absence has been quite a process. For years leading up to the discovery of this tumor, I really was in quite a struggle to understand how my life had gotten so far off course from my dreams, and I had ascertained lots of bits of information about the past, and ideas of how to get back to what I had a will for really pursuing, but I couldn't quite put it together. As I write this, I can see that perhaps my journey is unique, maybe other people can get a grasp onto things much more easily. On the other hand, I also wonder if other people who run into these sort of monumental physical, emotional and mental challenges might be able to use what I've discovered on their own quests, so I'll share a particularly surprising part of this story...

The Sun XIX

A child's mind invents many future potentials, and sifts them as she grows. She sends them out looking for approval, and doesn't realize that approval often comes to the thing she's least interested in. She pursues the least interested future with all her energy because ultimately she desires the approval. The potentials she deeply loves, the ones that involve her so completely that time passes without her knowledge, get branded as distractions from the things she ought to do and so they're put on a shelf display in her head as evidence of bad habits.

At some point in adulthood the shelf falls apart and suddenly those future potentials start a mess in the mind. They play hide in seek with her as it dawns on her that her lack of happiness has something to do with the fact they've gone missing. There are marvelous books by worthy authors that help her find them (CG Jung, Oriah Mountain Dreamer, Julia Cameron, Paul Ferrini, Leo Buscalia, M. Scott Peck MD, off the top of my head). Classes are taken, and yet even when one piece is found and put back on the shelf, others are lost. Therefore, a great swath of time goes to piecework while still giving the most time to those things that get some approval. The battle to actually take some discovery off the shelves of life and to wear them and live in them is already known to gain disapproval, and that is not something she desires.

Because approval has become so important, she is even likely to surround herself with echoing voices of friendships that agree with the approved choices, and that in turn leaves all of those shelved selves exposed to further disapproval. The internal battlefield between the bits of desired denials and the framework of desired approval leaves her frustrated with even having another potential at times, or frustrated with her approving friends and family because they don't see her true desires as worthwhile, except perhaps as a hobby. When the secretly loved potentials make unplanned exposures, her urge to quickly finish them and get them off her mind can lead to self-exhaustion and frizzle-frazzlement.

Am I making any sense?

Last post, I talked a bit about rebellion, and this story I'm outlining is a further exposure of the wrestling I've been doing for almost all my life. For some reason now that I have a flow of water again around the part of my brain that puts things in order, I am able to see that the approval/disapproval war is an old, old habit. I also have the sense that I may actually be experiencing a reversal of that order. Now, I recognize everything that I'm supposed to do for approval from many who have been a lifetime around me, and I am feeling disgusted by it, by my own former behavior, and finding that I simply cannot condone allowing it to remain in the limelight. It comes up daily, moment to moment. As if the magnetic poles of the order within me have switched, my strongest desire is to bring out all of those uncommitted desires and let them be experienced for the rest of my life, whether or not I'm ultimately understood. In turn the modes of operation that attain some sense of comprehension from much of my family  and some of my old friends are being boxed and labeled with things like "taking care of external perfectionism," "the right diet," "beliefs that have nothing to do with me," "rising to expectations," and "buying artificial pleasures."

Meanwhile, as I dust off desires that have been hidden away everyday, more potentials appear. It is as if I've landed on the island of misfit toys and they're all so happy to have me. These desires are not all quite working yet, and I'm not but partially developed on most of them, so I have the sense of practice and experiment. It isn't that I haven't tried all of them once or even often, but simply that now instead of killing myself to get something done and out of the way, I sense I have the opportunity to see what unfolds over time, and that as part of my healing doing it little by little is essential.