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 III

No matter how wonderful painting and drawing is, I am grieving a part of me that seemed so committed, while admitting that those "tired ofs" are there, and the "oulda sisters" exist behind that door. I visit the idea of doors closing and windows opening, and hold onto it. I am back to working on doors that seemed closed, but were left open a crack, for instance, my lifetime quest to make my own Tarot Deck with all of my new realizations, complete with 79 poems that have yet to be fully edited and loaded. Then there are people are asking me if I'd consider doing a special portrait for them! Of course, I would! I'm learning how to set that idea to a reality score of inner music. Composing a real plan for it. I am also in a place of learning how to look at the windows around me.

Rainy Afternoon, Oil Pastels on Archival Paper, 11" x 17"

Physically other doors that have closed and don’t seem to be cracking open are hearing in my left ear, feelings on the left side of my face, and taste on the left side of my tongue. This is due to nerves taking their time to rebuild connections, or not. Also, I had a grand mal seizure in December that has me off the road (you should be happy about this!) and that has in turn limited my ability to be a useful chauffeur mom, and to getting to anything but the grocery store when someone can take me. I really relate to Arab women and those under house arrest now. To be constantly accompanied is both wonderful and uncomfortably demeaning. Don't feel sorry for me. It is just a thing.

It also means that I have to make peace with being on anti-seizure medications for the rest of my life, according to all the neurologists I've visited, and this is a huge drag. Better than having seizures. Yes. That. But, I’m still fighting acceptance of this for the long haul. I give in for the time being. This means I really have to look at ways to make that work -- which turns out for me to be changing my lifestyle choices - diet, exercise, self-care, how to be a productive mom and person and ways to make a living from my home (back to writing??). Oy! Never ending things that fate has given me. Everyone has them.

To focus on what CAN BE DONE is the thing.  If you haven't seen "Silverlining Playbook," yet, this is where I am highly recommending it.

I can be a great mom somehow right? Even if I cannot be there to scoop up, to deliver... I’m looking for that purpose, and meantime realizing that my kids’ lives are not about me anymore in any way, shape or form. I realized this by remembering my love of the Bay City Rollers back in the day, and realizing that they've already grown past that time and I know I didn't give a shit what my parents were doing even then. They’re out there discovering themselves and experiencing things they’ll never share with me. This is what every mother goes through. The empty nest. I’m just getting an advanced, slowed-down, warning. You know, mother birds do not stay in empty nests. They return to an adventure of flying.

I begin flying by learning about being an artist from something other than my childhood. There are a FEW (Har, many) how-to books, classes and crafts (like how to frame and mat an oil pastel piece) to take in. I can take some of the business skills I developed as a freelance writer and editor and apply them to an art career. Heck, ten years or more in Consumer Products branding, copy and content ought to be valuable to an artist. It is not really like I’m giving up on my experience so far, I'm just changing its focus from writing about the visual to making the visual. Who knows? It may bring me full circle.

I can make my body stronger and less dependent on medication to prevent the brain from having a lightning storm, if I keep after what I know. I know I have to reduce swelling, and I know going to a low-glycemic practice, and to keep walking is part of that. Perhaps I will find more. It will be a step-by-step thing. It took me 32 tries to quit smoking cigarettes for good many years ago. I must be approaching that with quitting gluten. Let the 33rd try be the one that lasts.

C,G, Jung Laughs, Oil Pastels on Black Archival Paper, 19" x 25" 

I can face the failure/success question little-by-little, first by linking my work of art to a higher goal of preparation and exposure by entering into an art contest. (I tell all my screenwriting students to consider it a real step along the way, to submit their screenplays to well-respected contests). Maybe if you vote, I'll win something that could help me along the way, a "full studio" Super Shawn Taboret, a nifty piece of furniture that would make it possible for me to do professional level artwork at home.

I could learn that asking for help is not a bad thing. I could use your help. I would really appreciate your help. All I'm asking you to do is to click on the painting to the left. When you land at Daniel Smith's Art Contest, click to "Monthly Voting Gallery," and then go to page two. You'll find this painting about half-way down the page. I am putting myself out there to see what the next step might be and to challenge myself to get beyond a shyness I have about having my work seen beyond a hundred FB friends. I don't know what will happen, but right now I appreciate what I'm learning about what I can do everyday to sell myself tall rather than short. You, by the way, can vote once every 24 hours for the rest of February 2013, if you so choose. Please choose.

So to sum it all up, my year of recovery: My gratitude runs deep. I accept the bits I cannot change...mostly. I can turn away from closed doors and let go of clothes that don't fit. I can ask for help...and even accept it. I can be content by embracing curiosity and dislodging expectations. I don't know what tomorrow brings...

2013 © Amanda Morris Johnson

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

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.

Truth is Strange

“Truth is stranger than fiction, but it is because Fiction is obliged to stick to possibilities; Truth isn't.”
Mark Twain

Discovery

I never wanted to be a journalist. There was a lot of insistence that this would be my best route to writing professionally, but in my experience Fiction did tell me the truth in ways that a biography or an article never did. I am in awe of fiction more than of facts. I never wanted to write memoirs either. The simple reason for this is because I knew that my memory was already selective and that I could not write the facts, nor could anyone else without blithering mistakes. It could be nothing but a lie. Now, we are in the age of the blog and social media, and what am I writing? I’m writing a journal, an examination of my opinions and experiences as they unfold as if they are the whole truth. It’s not a new thing to write this way, but it is public for the first time, and are there layers of information that I keep to myself? Of course, there are! So is this fiction or facts, and where is the truth?

I’ve been thinking of this for a long time. That's a fact. Why don’t we see loads of fiction unfolding in the blogosphere? Tales that draw us into to imaginary worlds, exploring the interior of minds that were invented? What would Mark Twain do with this medium, this internet of no particular reason except to share facts and opinions? Lately, even the publishing industry has been taken aback from the success of fiction in books to the point where for the last decade people have tried turning their works of fiction into “memoirs” only to admit later that they lied (see Beth Hayden’s blog today on Copyblogger).

The more I learned about writing fiction in the medium that I chose - film - the less fun it became. There was little play for me in laying out the whole thing on notecards before I wrote the first line of dialogue. I understood the part of Twain’s quote that went, “...Fiction is obliged to stick with possibilities...” It meant that I had to decide what the possible outcome would be and build my story around it. Whereas in the realm of journalism and facts, well I watch the stories unfold often to my amazement, sometimes to my disdain and I'm never really committed by that observation to the truth. A great fiction writer has to have a sense of the “truth” before writing about it. A journalist finds out the “truth” as it unfolds, only making a conclusion, if making a conclusion, at the very end.  Bloggers freely state opinions and offer facts and tie it up, but only the best build a frame of context, and, if they do this much, it might be somewhat fictional. The essential thing with blogs is that they've determined a point of view about reality and they find facts to uphold it. Does this mean it is the truth? Does this make it journalism?

This must be very confusing to creative writing teachers. Classes I have had since my youth, laid out a false expectation that as I wrote fiction I would discover something I didn’t know while writing a piece of fiction. There is no discovery for a fiction writer, only for a fiction writer’s readers.

But what of the audience? Why has the audience lost respect for the amazing feat of the fiction writer to find the truth AND THEN tell it in a way that the audience can discover it? Why is it unacceptable, for instance, to posit that the Bible itself is only part fact, and mostly fiction taught by the greatest minds of its time through poetry and story? Why must we have the literal belief of everything in order to own its truth? Have we become a world obsessed by fact-finding because of the journalistic claim that that is what they are presenting?

Lately, I’ve become addicted to Aaron Sorkin’s new show on HBO, “The Newsroom,” and the obsession its characters have with sticking with the facts. They have created etiquette about what is wrong with America by pointing out that what is now presented on television as fact is actually fiction and fantasy. I love this show and I believe the point of view completely. Yet, I do not ever forget that it is imaginary, that there are NO news organizations pursuing the facts in this way today except maybe a comedian named Jon Stewart. If Aaron Sorkin had based the show on "The Daily Show" then it would be virtually a piece of journalism and we would watch it unfold, but then Aaron Sorkin could not be loyal to his possibilities about what would happen if journalists told the truth.

So, today, I have no answer to my question. This makes me a journalist more than a fiction writer. Sigh. I am in a state of discovery. I admit it.

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.

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

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.