Friday, March 23, 2012

Dealing with Discouragement

First Crack at Serious Self-Portrait
There is nothing to be overly discouraged about brain surgery. Honestly, it is a beautiful thing to be able to take care of a tumor, benign or malignant, in one’s head in 21st century America. There’s been vast improvement in the last couple of decades. Since I started talking and writing about the experience I have sensed the need to be open about everything that has happened, if for no other reason than to point to this truth. That statistics point to survival of this surgery at 98% should make this obvious, but the responses ran the gamut from hand-wringing despair to joyful prayer. It is simply hard to imagine opening up the skull and having a decent experience without those prayers, but the techniques and technology are pretty impressive.

This is not to say that discouragement doesn’t exist. Anyone who has read this blog for a while knows well that I have had some real downer moments. It wasn’t so much the surgery itself, but my body’s reaction to some of the preparation, and my mind’s genuine impatience and control freakishness with everything. Now that I’m five weeks out and clearly doing well, I can talk about some of the setbacks I’ve had in recovery without jumping up and down hysterically over them.

An obvious one, to me, is that I’m having a time with writing. I know what I want to write, but getting it out coherently is a real challenge. It’s not the big things. I think that the big, overall ideas are coming out okay, but, sentence-by-sentence, I am recently shocked by how difficult some of them are to read. What I’m used to taking for granted, words flowing out of my brain, I now have to take a step back from and wait for some clarity. It is as if everything I’m writing comes out a bit convoluted, and it horrifies me. I’m sorry about that because in social media, blogging, and poetry I’m used to shooting from the hip.  When I go back and read some response or even a blog, and realize I used the wrong word, or forgot grammar altogether so that the meaning had drained out of the words I got right, or just used to many redundancies, it is discouraging. The time it took to write seemed so blasted long before, that now I am a bit intimidated to start the projects I have in mind until this settles down.

I hope it settles down.

Additionally, I’ll tell you, I’m wondering if this has always been the case (convolution in my writing), in fact. Is it possible that it only just now that I’m becoming aware of it because the obstruction has been taken away? That’s possible. That would explain a lot about my career. That makes my hands sweat, just considering it.

That may be why I'm so happy to be doing visual art instead, and that's not too bad a trade at the moment.
While Cottonwoods Sleep

Then there are the issues of swelling around nerves, facial and tongue numbness paired with pain zapping and dry eye (only one dry eye). They don’t really tell you that in any surgery they’re likely to strike some nerves and push them out of balance one way or another. It happens, and mostly it simply takes some time to heal.

How do nerves heal, you may wonder. Well, I wondered, too, because I figured if I had an idea of how the nerves reset, or heal then I might be able to support the process and feel less worried about it. My research led me in many directions as usual. Perhaps, more importantly, I have cause to simply pay attention to the process unfolding, because some days it really bothers me and some days I forget about it.

So, guess, what? I’m writing about nerves and emotional turns, and it’s going to take me at least a week to put it down straight enough to post comfortably. In the meantime, enjoy the burst of spring this weekend, if it is happening near you, and be truly thankful for your face and tears and even runny allergic noses.

Thursday, March 15, 2012

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. 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.

Wednesday, March 7, 2012

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.

Thursday, March 1, 2012

Life's Rebellious Surprises

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

she was just 17, if you know what I mean...
So, at the moment I feel very allied with the girl I was who willingly tried a relationship with the world expressed by Les, that wasn't so darned predictable, or so I thought. Part of this is because I’m having a resurfacing of pain. Somehow Tylenol has not been keeping the pain of my left side at a minimum. I can’t stand the percocet or oxcodone and there was a great resistance by the medical group for me to try anything even though I’ve been taking a maximum dose, the pain has been building me into a pretty grumpy, pissy person who expects some other people in the family to keep up the actions I normally do just exactly like I do them. Making peace with help coming in its own way is a challenge. I have become a finger-pointing, impatient shouter who has had to repeatedly disappear under the covers of the bed and count to ten as I dream about shaving off the rest of my hair and wearing the most grungeful expression I can find.

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

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

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

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

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