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

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….

People Who Need People

This thing with my brain is dragging on and on. I’ve described it as a holding pattern, and that indeed is exactly how it feels. I’m just circling, unable to land this puppy and get my baggage in hand to deal with, and unable to go anywhere else. Now, that I’m not on any medication I feel pretty good physically, barring the come-and-go headaches. The only thing is that the fear of possible seizure has barred me from driving, and that little detail has changed my life.

I am blessed by people who would so love to help me, but I am stubbornly holding onto my non-existent independence that I’m afraid I will alienate them before I really need their help. I mean if I felt worse, or was recovering from surgery now, I wonder if I would be so blatant in my rejection of assistance. Honestly, I cringe that I appear to be so helpless when I feel so okay. If it weren’t for the outside possibility that I might have a seizure, I would just carry on with my life as it was before this all happened…sort of...

My mom visited us for a week over Thanksgiving, and I tried that business of carrying on as if in normal condition, with the non-chalant ability to run errands because she was driving. Har.  Three hours a day of grocery shopping and errand running over the course of three days sent me to bed for two days. I have been taking three hour naps and going to bed early for nearly a week now since she departed. I’m not complaining. I have the ability to do this because of everyone’s support, but it is astounding to me.

I read in Julia Cameron’s (The Artist’s Way) Facebook feed, “Tell yourself you need to relax instead of create. Tell yourself you’ll write later. #how2avoidmakingart” and if I hadn’t been sitting down, I think I would have fallen over. I actually wrote a comment, “Wait…what?”  That’s when I realized that I’m a driven person. “Relax” is the comment I’ve received the most on my posts about this affair I’m having with a benign meningioma. And, I have to be frank; the front of “I’m okay” is beginning to break down because I do not know how to relax. I don’t know how to escape without running away. That’s when I realized that writing projects often serve to keep me on edge, running mentally away, rather than deeply sinking into self-knowledge as I would wish for them.

So, let me just say what I know: It’s not the brain tumor, fear of surgery, medication problems. It’s the fall out. One thing that is part of the fall out is the desire/need dichotomy. In a story the hero needs to recognize and accept, or change something about herself in order to have her desire(s). Well, I just want this whole thing to be behind me, and so I have been avoiding “need” like the plague. What? I really don’t want to accept that I need anything except for this thing to be over and done. Har.

That’s not how “need” works. A funny thing happens when one recognizes a level of need in her life; the desire narrows in focus. I recognized several parts of need that I’ve been avoiding in the last two months. One is that I need some assistance, even if it is as simple as asking my god-daughter to pick up my kids from school and deliver them to me after she’s finished classes at the local university (thank you Madeleine King!). I have to accept that there are some things that I cannot do for myself or my family right now. Then also I realized that I need to rest more than I am accustomed to resting. Somehow accepting the need to rest, I am allowing myself to feel my exhaustion and slow down my ambitions. I’m not relaxed yet, but I’ve reached the point in the journey when I can’t actually argue that I must finish anything or produce anything except the bare minimum. I understand that all I need to do is accept today including how I feel, where my energy is, and where my real commitments are going to land. I’ve been incredibly supported by one of my favorite author’s, Oriah Mountain Dreamer, and the words of her first book “The Invitation,” that remind me that accepting necessary changes does not mean giving up.

The very general desire of wanting this to be over has become more refined. The aperture of my want has settled today on wanting to understand why accepting help is so hard for me, and wanting to maintain the independence I have left by minimizing how much I depend on others. I want to recognize that the reason I cry now on a daily basis has very little to do with an anomaly that has invaded my brain, but because the parts of me that I most value – the take care of business, stiff upper lip gal, has no way to maintain. I have to set aside some of my joking and sarcasm to be kind to myself and that is such a challenge.  Sucking it up, rather than self-acceptance, is not working.

I admit that my resistance is wearing down through shear necessity, and wouldn’t it be so much easier if I could just put it away in a drawer until a sunnier day? It would, but it forces me to confront the fact that I feel I am a valuable person because I take care of things, of people. I feel worthy of love or admiration because I give or instruct. Now I find that I simply don’t have that much to give because I’m sleeping half the day away, because I can’t get anywhere on my own time, because getting anywhere means that someone else has to be the giver, because I don’t know where I’m headed. Argh! I do not want to be pathetic, and I’m frustrated by my self-concept.  I completely understand why the elders who lose their mobility and abilities are so damned ornery or depressed. I really get it now, and I had no idea before. My grandmother's favorite saying in her last years was, "Getting old is not for sissies."

The last thing in the world I want to become is a pet, taken care of, directed by other’s abilities to meet my needs and to feel vulnerable to delays and constraints of scheduling and other obligations. I want to be fully independent, but I understand that this is foolishness because none of us is fully independent without paying the price of isolation. Therefore, my desire’s narrowed aperture has framed something poignantly important: I want to know that I am valuable and worthy of love even if I need…need anything at all…I want to know that needing others in my life is good and as the song goes, “lucky,” and I want to know that I won’t fall apart, and the world and all it offers won’t fall apart if I take a break.

People who need people are the luckiest people in the world? I want to know that.

Keeping it Real

How am I really? Har. I have a benign brain tumor. No really, I’m currently not on any medication other than Benadryl and vitamins. I’m trying to tamp down the allergic reactions I normally have with the Benadryl, and I’m trying to support myself nutritionally and with an added boost. My face, I am apparently actually vain about it, has shrunken down to its normal cheery roundness. I no longer have strange aches and pains in my legs. I no longer have a web-like red rash all over my body.

That said, I’m tired. I am unable to tolerate very much disruption these days. My kids were home with me this weekend, and I failed as an organizing principle and entertainment wizard. I foisted responsibilities and gave up perfectly good opportunities to share experiences in favor of lying in bed and staring at the ceiling. I let my mom take them out of the house on Sunday and did not volunteer to join in. This is not my normal mode of operation. This is the antithesis of me. The only consolation I have about this is that maybe this is not the new normal. Maybe this is something that will pass, but I don’t know when or how.

That not knowing is pretty frustrating. This morning I had a dream of entering a hospital that was no less intense than a Hollywood contract negotiation. There were a million documents to sign and agree to, and in the dream there were twin lawyers who wanted to know just what the extent of my expectations for recovery were, and were not interested in agreeing to my bright prognosis. They wanted to create a hedge fund that would diversify the estimates for success. They offered me ample evidence to second guess my intentions. Luckily, the hospital was decorated with my grandfather’s paintings, paintings I’d never seen before and I took that as the single most important piece of information pointing to a good omen.

These days I feel as if I’m in a battle with a super-human Amanda who is used to working on so many different levels it isn’t funny to lowly little ol’ me, who has aptitude, but only for single-minded tasks. I am aware that I am in a holding pattern here and running out of fuel while this battle rages. Super-human Amanda is the one who is frustrated by the delays and the reactions and the exclusion from normal activity. Little ol’ me is biding time, being deceptively non-chalant about what can be done and what has to be dropped as if this is a thing I’m really good at -- choosing priorities.

When I don’t choose fast enough the result is nearly immediate. I end up with a headache to beat the band. I end up unable to get myself to sleep. I end up having the blood boil at the surface of my skin, turning me a Barbie hue that only recedes with bed rest. This is forcing me to be much more ruthless in my non-chalance about commitments and plans. This forces me to encourage my kids’ independence more forcefully than ever (my son noted that my temper is a lot shorter - but what he doesn’t realize is that I’m desperate to know that they’ll be okay no matter what unfolds).

Tomorrow I hope I will get a new lease on life from an allergist. I’m hoping that he’ll be better than any other allergist I’ve ever seen, and will come up with an answer about the anti-seizure medication conundrum. I’m hoping that he won’t lower my expectations for full recovery, or hedge his bets with shrugs and concerned looks like my neurologist. In short, I’m hoping for a minor miracle with the bigger miracles to be formed just around the corner of time.

That’s how I am today.

Sign Posts of Gratitude

When in possession of an unwanted benign brain tumor, and the havoc that causes, the feelings of gratitude may be a little more challenging for me to touch daily, but they don’t go away. In fact, recognizing what I am honestly grateful for picks me up when I’m down. Feeling gracious and thankful when life is giving me big reasons to shrug and be sunk into self-pity is not natural, perhaps. Perhaps, I have to scrape away a layer of gunk to put my mind where I want it to be, but the work is necessary in order to have perspective and meet the opportunities of the day with open arms. I’m not going to lie about it and say, it is oh so easy I just have to sing a little song and I’m right back where I belong. No. It is a conscious effort that I choose to make not only for myself but for everyone around me.

I’m not lying about how hard it is to find the attitude of gratitude, and I’m not lying about things I'm actually grateful for today. To prance around as if this brain tumor is nothing; though, maybe in fits of denial I will go there sometimes; is a dishonor to myself and everyone who has reached out to support me through this rather tight, dark passage. So, while I spend hours in bed staring at the ceiling as it spins around above me, I am grateful to have voices sending prayers out into the ethers for me. It brings me to tears to think of it, and,with that support, I know I cannot fail to emerge from the other side of this tunnel somehow braver and stronger than when I went in.

I’m grateful for the messages of support, suggestions and curiosity that I receive, even if I cannot answer them very quickly. And, when I am tired of talking, writing, chatting about the situation, I am grateful that there is a power off, and a shutdown button on all communications. I’m grateful that I’m learning how to use those buttons. Blush. I’m grateful that the support I receive respects my boundaries and many limitations right now.

My gratitude to my husband for keeping down the drama is a bottomless well. He is my touchstone, the go-to person when I feel it is all too much. He seems to love me even with all the trouble I cause, and I really do cause a raucus, and he proclaims me beautiful when my face is swollen from allergic reactions. He remembers to keep the laundry cycling through, and he’s even learning to cook. He is rising to the challenge of this time in our lives. What woman would not be grateful for that kind of love?

I have children who cleaned our home on their Saturday, without complaint. (Yes. There are children like that in this world.) They read to me when I was in bed, feverish and in pain, and combed my hair and held my hand.  If this isn’t touching to you, I don’t know what to tell you. Of course, they are children and they have their wants and needs, but it does occur to them to set those aside now and then and look at what is actually going on around them, and for this I’m grateful.

I have parents who would like to lean in and fuss over me, and yet they know that I’m not that kind of gal. They respect my space and let me ask them for assistance when I need it. My mom is giving up her beautiful Santa Fe for a week to come and drive me around (since I can’t take medication for anti-convulsion, I can’t drive, in case, just in case…) and sort my laundry. And, tomorrow is her 70-something birthday and she’s willing to hang out with a space cadet who may or may not muster making a cake for her. My step-mom sends up little snacks, takes my kids out of this sick space for afternoons and sleepovers. My dad actually left his lazy-boy and has driven (which he does not like to do ) up to my home several times to check in, and let me tell you it is a surprise always, and he’s smart enough to stay only 15 minutes even though the drive takes him an hour.

I am grateful for my writing because, though I haven't accomplished much with it in the world out there, it has been my most faithful friend, listened to me without judgment and allowed me to work out on the page what to do in every situation of my life. I could not ask for anything better from it, as there are definitely times that I've droned on and on about the same thing and yet finally a breakthrough happens that changes the course of my life. I am deeply grateful to be able to share a fraction of my writing with anyone who has the patience to read it.

So, these are my true gratitude attitudes for this Thanksgiving weekend. They are not grand in the scheme of all possibility, but they are sweet and poignant and meaningful at a time in my life when I need quiet more than parades.  I look forward to getting through this and looking back grateful that I knew my gifts well enough to put sign posts on them. I’m very blessed. May you take a moment to find what matters to you, that which gives your lives a little more ease and mark them with your own kind of sign post.

Finding the Therapeutic...

My, oh, my, I have been off of the anti-seizure medication since Tuesday when my neurologist took one look at me and said, “You have to stop taking the medication, if it gives you a rash like this.” Doh.  Yesterday, thanks to prayers and meditations from all over the world, I took a badly-needed four-hour nap. I feel as if the buzz of the medication is finally wearing off. My neck is no longer swollen like a jungle frog in mating season. I am no longer covered with angry, prickly rash and the heat that made my skin sunburnt pig pink, has dissipated.  In short, I’m feeling near normal.

However, the gray laundry in my head headache floats there over my right eyeball, and the urgency to begin a new trial of anti-seizure medication looms.  As it does this, I notice my resistance to the process, the inner doubt that it will work and the hesitation to open my body to another round.  I notice that I promise myself one more day of normal, as myself, in hopes that a day of balance will fortify my system so that the anti-seizure medication will be what they call “therapeutic.”  I try to imagine what that means.

A “tonic to my system” would be how I imagine “therapeutic” medicine works. I wonder why medications that were supposed to do this for me actually did just the opposite.  Is there anything to be done about that? There must be a way and a one that works the right way in order that I get the egg out of my skull. I didn’t even know that I was uptight about the brain tumor and surgery, to be honest. In fact, I felt relieved to have found a clear answer to some of my fatigue, memory problems and headaches. Perhaps, if I had had a normal reaction of panic and distress, the medication would not have triggered so much despair?  I hope that isn’t it. I still feel confident that having the surgery is going to help.

I have returned to an old regimen of considering how food may affect my body’s ability to process new experiences. I modify my intake of anything that has become a habit in the past few years – wheat, caffeine, acidic foods. The aim is to reduce “heat” in my system.  Though, except for this medicinal rage, I have not had an occurrence of hives for several years, the fact is that the rashes bear resemblance to that old foe enough so that I feel a return to mindful eating is called for and then what else can I do?

With the possibility of seizure now is not the time to start a true exercise regimen, however, it seems like a calming routine of Hatha Yoga might be well worth it, san inversions. This is not a time to try to stand on my head. I notice how stiff I’ve become from simply walking hours a day. Stretching and moving in a slow and deliberate way gives me pause. I see that my rebellion against taking care of myself physically was a bit of childishness that I can no longer afford. I make love to my body by simply feeling each muscle challenged to release this rebellion and accept responsibility for the healthy exchange of oxygen and carbon dioxide. Work with me body and I’ll work with you.

Why should I be so against this body? I purport to love my body, and have meditated on the image of dying and loss of it with a resolve to love all that it offers me, my soul, to experience a physical reality not otherwise available. Still, I want to behave like a child and let the body take care of me. When it does not take care of me then I rebel. I want to eat what delights a few taste buds rather than nurture it with foods I imagine with distaste. I want ease, and all this conscious movement feels like work. I feel my anger that my body cannot simply thrive without attention. It is only now that I recognize that my relationship with my body is somehow the root of a deep problem and that somehow, urgently, I must resolve the conflict once and for all. How indeed to make peace in a concrete, material world way? How can I give up my hours of thinking, thinking, and thinking some more in favor of moving, food preparation, and tidiness?  I never thought of myself as someone who lives solely in her head, but it appears that I may actually reside in that egg in my head and my body apparently an abandoned hulk.

Inhabiting my body then becomes a new conscious goal. This will seem very odd to anyone who has successfully lived in their body through their lives. But, for me it is a frightening prospect. I am nervous to make the move out of the egg in my head because my body is so unpredictable to me because I have not always reaped the expected results from “good behavior”. I do not have the sense that if I do the healthy thing that the healthy experience will follow. I have more of a hit and miss sense of my body. I will have to employ the tactic of curiosity once more to my life. That is, if I try such and so, then how will I feel?  I have to be willing, even in this time of urgency, to be my own guinea pig and trust that somehow I will suss out the right action towards a feeling that I am in a therapeutic state.

It seems clear that living in the egg in my head has been somehow rewarding in ways that I’m not consciously aware of, and so saying farewell seems to mean that I must trust that, in fact, I do not need the brain tumor in order to be myself. Giving up our crutches is always a challenge, but more so when we are no longer aware that we’re using them. I’ve joked for the last six weeks about this and that being the fault of the tumor, but now I do wonder if the benefit of the tumor needs to be recognized in order to be released.  What if, for instance, the egg represents all of the traumas of my past, traumas that have served as excuses for me not to become fully myself? If it is now time to remove their effect, symbolically and literally, am I ready to then become fully myself? Is that the resistance and the rebellion in a…eggshell?

Does Anybody Really Know What Time It Is?

November 18th will be my brain tumor party. The day I get anesthetized, brain tumor removed and titanium snowflakes in the end. So, that's that. I argued for an earlier date, but in the end found myself begging for the doctor to confirm, at least, November 18th, so that I could plan my life. Then while I was waiting and waiting, it occurred to me that part of my control freakishness is an addiction to feeling I can plan the future...as if...and the reason I know this is an addiction is that when they finally called and said that this would be the date and gave me enough information to make me feel like it was real, I felt the serotonin wash through my system. I felt relieved, and it wasn't even what I really wanted.

What is it with us that we are so concerned with what we're going to do tomorrow? What is it with the calendars and clocks and alarms and blocked out meetings and pick-up times for the carpools? I'm reminded of the lyrics from a favorite Chicago song, "Does anyone really know what time it is/Does anybody really care?" Oh, yes, we care. Let me correct that, I care. So, now I have three weeks that I can plan to the enth degree and busily I set about doing just that in my brain first and then on the calendar. Then I hit the wall.

After three weeks, I have a vague idea of the first three to five days of what will happen, and after that...phew...I have no clue. It all depends. It depends on how well the surgery goes. It depends on how my brain reacts to not having this gray egg pushing at it. It depends on the closure. It depends on whether there is any tumor left in the cavity. It depends on technology and the talents of the busy surgeon. It depends on things I seem not to have control of...

So that immediately informs me...what can I have control of? Har. I can control my attitude maybe, but my emotions are having their way with me. I was confident four weeks ago when this thing was discovered that it would be removed and all would be well, but all this time has passed giving me far too much time to contemplate less favorable results, and to be honest, that really is not where I need to go with my contemplation. Then I happen to watch movies where people die, or are chronically ill because there suddenly seem to be a plethora of those stories, and it becomes really scary. Then it becomes obvious. I have to spend the next three weeks cut off from media and well-intended conversations that emphasize the tragedy of finding out one is not perfectly healthy. In fact, I must do everything in my power not to write negatively about this brain thing.

What I'm conscious of is that when I had my miscarriage and lost my womb, I was immediately willing to go into the depths of my sadness about it. It feels like that was harder. It feels like this experience is more technological and mechanical and that it will turn out fine. Then it doesn't. Then it feels like this long delay must be the Universe asking me to take the time to say good-bye to life as I know it. Why else? I mean it's the night before Halloween and that's the scariest thing I can think of having to go through, and here I am going through it. Boo. How do I climb out of that?

My theory is that the only way past these feelings is through them. Coincidentally, I'm working to finish up a project I started in August. I'm writing a poem for each Tarot card in my own Kosmic Egg Tarot Project. It felt like I needed to complete something, and this was accessible. So, I'm writing the last fifteen poems this week. I've been writing the Minor Arcana suit poems, four a day (nearly) for a couple of weeks, and likely I will need to edit them quite a bit, but I'm happy with my "Nines" and wanted to share one them in this post because I feel like it partially encapsulates exactly where I am with my life right now.

To increase your understanding of the system of Tarot, let me just say that the "Nines" specifically represent the "realization" of each suit, sort of the best and worst of it as a big "aha". The Minor Arcana represent, for me, habits and are thus very mutable, and each suit represents a sort of path that we may be on for a period of time...material, emotional, mental and spiritual...textiles, vessels, tools and light. I will post the other "Nine" poems in separate posts...Here is the first:

Nine of Textiles

Those moments of self-realization create
Sustainability through the expertise I
Bring to the fabric of life. There was a
Time when I could not have survived
The challenges of this moment, but now
I am wrapped in warmth that I sewed
Myself and I can enjoy these conditions
That others would find a challenge.
The Aurora Borealis provides the
Unfathomable vision and my wolf is now a
Faithful companion, who assists my
Daily work to thrive, no matter what the
Appearances and circumstances are
Because I know I can adapt to change.

copyright (c) 2011 Amanda Morris Johnson

Titanium Snowflakes

It's pretty cool what they do...maybe not "Spock's Brain" cool...but pretty amazing in its own way. So, yes, they are going to saw through my very thick skull and they are going to take that piece of my skull and let it sit in some kind of solution for the four to eight hours (yes 4-8) that I'm in surgery. However, before they get to that point they are going to take a detailed MRI of my whole brain and send it to a GPS satellite that will somehow have a GPS connection to my surgeon's knife. How cool is that? That image will guide the surgeon via flatscreen HD (3D???) television in through the hole in my head. Just to be more graphic and gross, since it is nearly Halloween, it is the space just above my left ear, about 2 inches in diameter. 

Then they're going to sliced and dice the tumor very slowly and carefully, and pull it out in slices like slices of an egg. Once they get some of it, they immediately send it off to have it tested (but the lab is much slower than the knife - 2 weeks to know if this tumor is actually benign for sure). So, the surgeon must be going super duper slow and careful so as not to knick the brain in anyway. Must have the patience of a Saint! Any of the tumor that is reaching into tough spots to reach is likely going to stay there, but so far it looks like it is going to be easy to remove. 

The tumor is outside of the brain lining, and inside of the skull, taking up space. It is pressing against specifically the region of the brain that controls some of my language skills, my hearing, and my right hand -- otherwise known as the left temporal lobe. They expect that recovery from this surgery will be something like recovering from a mild stroke, so I hope you'll be patient with me. You'll see in the image below that this thing is pressing up against my storytelling and memories and that's kind of disturbing to a writer. It could be anywhere between 3 weeks and 6 months before I'm up and running. It's likely that the space left open will fill up with the fluid that surrounds our brains and runs up and down our spinal cord, and that my brain will stay just as it is. 

So you may wonder, why not just leave be? I did. I hear the risk of seizure has gone up exponentially because of my ten minutes of aphasia at the beginning of the month. And, after surgery for the first month I run the risk of seizure a lot higher so I will have to take it slow and take these medications which are like two margaritas in the system all the time. There may be improvements like: no more headaches, vanished hearing problem, and clarity. That's my hope. However, they are ever cautious and make no gleeful promises. Really wish they were more positive about a number of things besides, "this should be removed," but I suppose this is the result of a litigious society. 

Oh, and then when they're all finished, the titanium snowflakes! They fill the space up with a saline solution that will be absorbed by my body, and replaced by that fluid I wrote about up there, and then they stitch up the lining. Then they put the piece of skull back on, and they go around the edges and put little titanium snowflakes to seal it with titanium screws. Apparently, I will not set off Homeland Security detection devises with these titanium snowflakes but they will be with my bones for all time until I am dust and they will just be a pile of mysterious titanium screws and snowflakes. They could be golden or bluish not than anyone will see them because then they pull the skin back up and staple it together (such a sloppy ending don't you think?). I will have a partially shaved head, and some wicked scars. 

Hopefully, that will be the gist of it. However, if there is some tumor left in there I will have to undergo radiation. Then I will be really pretty. OMG. They couldn't have managed this BEFORE Halloween. I would have been the best Zombie Mom ever!

Head Long into Health

Two weeks ago I landed in the hospital because, I the writer and communicator, spent a good long ten minutes speaking in gibberish. I could not get the words from my head to my mouth in any way that made sense, and I knew it. It was embarrassing because my husband and I were at a party meeting and greeting his new colleagues in a new job. I was supposed to be playing "supportive wife" role. There I was saying something like, "The beer snake flew smash nut Pho dog food," when I was trying to describe a simple place. I thought I was having a stroke, or had finally gotten full-blown Alzheimer's disease.

It went away, but I was stunned and the next morning after much delay, I decided I had just better head over to the hospital to make sure I wasn't building up to a bigger stroke. You may wonder why I didn't go straight to the hospital in the first place. That's probably why I'm writing this blog because it is a warning to take symptoms seriously, take oneself seriously and, you know, take care of business for oneself when it comes down to it. 

Those who have known me long will know that I'm the person who has the strangest, least explainable illnesses.  For instance, for years I was covered head-to-toe with chronic hives, red itchy welts all the time (and I do mean all the time) for years on end. After initial panic about these kinds of things I grew used to having things wrong, made jokes about them, tried a gazillion diets, supplements and medications all to no avail. In fact, I simply made myself used to my body glitches. I've had a gray, dirty-laundry-in-my-head headache for so long that I've written it off as par for the course, part of my life here on planet earth. I've longed for the invention of a brain rinse. I've got a patchoulus eustation tube that sounds like I'm underwater on the left side of my head all the time. I'm fatigued a lot of the time and have aches and pains that are not explicable by my Hashimoto's Thyroiditis (who has a disease like that?) killing off my entire thyroid and leaving anti-bodies swimming through my blood. So, you know, with all these little things going on all the time, I've gotten a sort attitude about not feeling well that goes like, "Yeah. Big deal. Another thing."

It turns out there is a reason for all of this. I have a brain tumor. After sending me through an MRI at the hospital the Doctor arrived in my little waiting room breathless to announce, "It's benign, but you need to take an ambulance to St. Anthony's right now and have an operation."  Huh? So, it wasn't a stroke or Alzheimer's. He shot me up with some steroids and the friendly ambulance guys got me off one gurney and onto another lickety split. Brain surgery. I talked all the way down. I felt so relieved to have a clear answer, a removable answer. The whole thing was strange.

Because I was so chitty-chatty everything slowed down. I looked nothing like I was in the emergency of my life, I suppose. I had time to send out emails on my Droid. "Hi guys, just letting you know...I have a brain tumor." They came in and asked me to touch my nose and follow the light and say things. Nope. No gibberish. Everything slowed down. They hooked me up to machines. They took my blood. They came and looked at me some more. They sent me through a CAT scan and an EEG. They threw up the MRI images and there was the rather large grey egg sitting on the outside of my brain, and inside my skull, an intruder causing swelling, but not reaching into the grey matter of my brain apparently, and they decided that surgery could wait for a more elective time.

I went home on day three loaded up with pharmaceuticals that were supposed to keep everything under control and shrink the tumor so that it can be easily removed. Unfortunately, now it has been two weeks of relatively very little sleep, and I've got two to three weeks to go before they actually remove this slug of my past. I feel I might be going mad as a hatter. My hands feel tied. 

Then tonight, after two restless hours of tossing and turning I got up to address the thirst and wakefulness by cleaning my kitchen again, and it occurred to me that I'm having a temper tantrum and a whine fest in spite of my best efforts to be courageous and cool about this whole thing. During all of those years of mysterious illness, maybe it always came down to this lump in my head, and what did it all mean? I'm in a state of self-examination again, but this time loaded with some strange ray of hope that it isn't my imagination finally. Yet, my arms are folded in anger. All those years! Taking care of myself on those gazillion diets, supplements and endless treatments! I'm sure I sent someone's kid to college once or twice. 

The thing is on my communication center. For the last several years I have been struggling with words, with phrases on the tip of my tongue disappearing before I could spit them out. I have been struggling with timing. I have been feeling I'm losing my mind's accuracy and clarity. Obviously, my brain has been working overtime to compensate, and now what? What happens when it is no longer there? Will I be able to write at all? Will I be better? These are the great unknowns of the moment. Where is Dr. McCoy and the brain operating machine for "Spock's Brain," when you need him? Not that I'm Spock, but I'm just saying'!

I expect this sounds like a tragedy to some of you, but I feel blessed on many levels. I am finally insured and can take care of this, thanks to my lovely husband. I have a clear prognosis, since it is outside my brain, and even if I have to have some radiation to stop any growth that looks messy the neurosurgeon feels he's not going to be cutting brain matter with any scalpel. That makes sense to me. Apparently, they put little silicone donuts on my head and get a GPS satellite image and cut a little incision and remove it like a gallbladder. So, maybe I don't have Bones, but things have improved in the science and execution of it. 

The main thing is that now I have to get over my tantrum about it and start taking care of myself again because what I'm aware of acutely is that somewhere along the line of the last few years I gave up hope of ever really feeling that good again. I'm beside myself, that actually, I might just feel a helluva lot better soon.

That's my news of the moment. I'll be updating here from time to time, just to let you know how it goes. I was going to do a CaringBridge site, but their server moves to slow and I'm too impatient. I welcome your prayers and thoughts, good vibes and light, but please don't expect a lot of personal messaging about this because after just two weeks I'm at maximum capacity for explaining it in more detail. I hope that doesn't sound awful, but this blog will serve as the curation of information for me. Trust that I'm addressing my needs to the very best of my abilities and using this, as every opportunity, to write and examine life. Who knows? Maybe I'll be more brilliant. Grin.