Monday, November 28, 2011

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.

Wednesday, November 23, 2011

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.

Saturday, November 19, 2011

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?

Monday, November 14, 2011

The Waiting Pain

The journey, any hero's journey, is going to have bumps along the way. When we're writing a story these bumps are what strengthen the hero's will to overcome her own bad habit or flaw finally because she sees that she cannot have her desire without change. A hero's journey implies change from the get go, even if that change is simply self-acceptance. When a hero makes the necessary change the world comes back into a new balance that ensures thriving for least until the next hero's journey. When a hero cannot make the change, then the story is a tragedy, and the rest of the world makes a change, but the hero is left in the dust, and there is no guarantee that thriving will happen for anyone.

The bumps along the way are what I like to call "villain voodoo". They cause a great deal of discomfort and even pain for the hero. This villain voodoo causes the hero to undergo training, to make better plans, to understand the rules better, to figure out what her values are going to be finally. Sometimes a hero cannot pin her torture on one particular person, a villain. Sometimes it seems as if the voodoo is coming from every direction, and usually that means that the voodoo is self-perpetuating, and she's got to stop hurting herself or suffer the consequences. (Yes, I'm using a gender-neutral "hero" by the way.)

I've been writing about my brain tumor surgery from a hero's point of view because right away I saw that, of course, this is just that sort of journey. And, like any hero would, I entered the process naively and hopeful that it would be easy and straightforward, bah-dah-bing, bah-dah-boom. And, of course, like any hero's journey the bumps and voodoo have been cropping up steadily in every direction. So, let me tell you about my voodoo in the hopes that it will help other hero's be informed, know they're not alone, and make better plans.

I have always had bizarre health problems with few clear cut answers from Western Medicine. More on the chronic side than on the acute, these problems, I discovered when I was in my 20s, were better addressed holistically. For years, beginning when I was 23 and going until I was just hitting my 40s, acupuncturists, chiropractors, cranial-massage therapists, naturopaths, osteopaths, and healers of half a dozen other modalities were the most regular people in my life. I tried everything to rid myself of chronic uticaria, hives by another name, headaches, muscle pain, to increase my energy for living, to cope with my home life problems, to increase my ability to digest, to understand my life. I came to understand that they were a crutch to me, now and then, and would pull back, only to become so sick that I had to return again.

Occasionally, I went to Western Medicine and occasionally I got a clear answer -- like "Hashimoto's Thyroiditis," but for the most part I got crazy suggestions from Doctors with Doctoral Degrees! For instance, one doctor took a look at my body covered head-to-toe with hives, and suggested that I needed to get pregnant. I was only 22 years old, not yet married, and it wasn't helpful. I'm not sure he was really thinking about my hives as he had a peculiar bulge in his pants, but it was voodoo enough for me to switch doctors. That's how voodoo works, if you pay attention.

I tell you all of this only to point out, that I have worked both sides of the fence for health - holistic medicine and Western medicine, and have come to the conclusion that holistic medicine is very helpful for chronic conditions mostly and Western medicine is very helpful in a crisis, and sometimes that isn't true. For instance, I assumed when this brain tumor was diagnosed six weeks ago that it was an acute crisis. I didn't understand that it was a chronic one. Even though I've probably had this thing for nearly 20 years, it hadn't been the obvious cause of my health problems...or had it?

What I thought was that it was acute enough that the doctor would rush me into surgery in a short time and then I'd be out and fixed. I had full confidence when this thing started that it was a mechanical issue, and that it was fixable. I forgot years and years of training that indicated that if you pull a string in a sweater, it can unravel, and before that it can pull the entire sweater out of whack. I know all that, and I just blanked it out. It did not occur to me that the doctor did not view this egg in my head as a problem of enough magnitude that he had to rush.

It never occurred to me that the medications they were putting me on to prepare for surgery would break down my confidence and remind me that Western medicine is not always the best route. I thought this is a foreign body that must be removed. Would you think any differently? But, this being a hero's journey, it could not be that simple. It had to remind me of who I am, and what I've learned in my life, and demand that I retrain, make better plans and strain to get a better understanding of the rules I'm engaging in to have this thing taken care of and get myself on the road to recovery.

I feel a bit like I've been whacked on the back of my head! I've had a fever of over 100 for three days, have intense muscle pain the minute the Tylenol has reached its 4-hour zone, and am covered with a rash head to toe which feels like hot pin pricks, and looks like I've been nude sunbathing I'm so pink. I can't sleep more than a few hours, and when I wake up I am drenched. VOODOO! This is the third anti-seizure medication that they've tried for me. The neurosurgeon's nurse said, "I don't know what we're going to do with you, Amanda." That always builds confidence.

Truly, I have been resisting not having this work as I wanted it to work out. We are not wealthy people, and I know from experience how much multiple weekly visits to various holistic health care professionals costs. Whereas all of the Western medicine that is torturing me is paid for by insurance, the holistic care that I need is uncovered. I am being forced to up my engagement in this process just when all I want to do is lie abed and be soothed. That's how a hero's journey goes every time.

Lavinia Weissman, of The Story Of Meaningful Use, a health intuitive, has been advising me for weeks as to what alternatives are available to me, and I have been immovable in my stubbornness to let Western medicine do its job of healing. Har. A lot of heroes are stubborn about hanging onto their flaws. I just wanted that journey to be over, but now I see that it is simply my journey and the longer I resist it the worse all of these reactions are going to get. I get it. Sigh. Grr. I'm angry about it still. I don't understand why it is my destiny to have to seek alternative paths, but I accept it. I'm not even sure that I'll be able to change course in a meaningful way soon enough to be able to have my surgery as scheduled this Friday which just is so messed up, I can't tell you. I've already lost my Thanksgiving break with my kids, and I don't have the energy to take it back even if I can, because I'm not having surgery because I'm having terrible reactions to the medication I need to have this surgery. Sigh.

Yes, I'm a bit grumpy about this turn of events, but in retrospect, I shouldn't be surprised. This is a journey I've been on my entire adult life, and I'm still trying to get to the point of thriving and balance. I am also laughing at myself in wonder. How can it be that I thought I was finished? I am still alive.

Wednesday, November 2, 2011

Nine of Vessels

Those moments of self-knowing can
Be full of pleasure and indulgence...
When I realize that the most precious
Vessel I have is this body, for it allows
The enjoyment and use of all the others.
If I were to float above it with orders
To leave, then I would understand all
The petty criticisms I endured from my
Own mouth were absurd to the extent
Of cruelty and the need to feel points
Pain unnecessary. I love this container
Finally, upon this threat and understand
Its imperfections are in fact perfection
Embodied, unique and sensually a delight.

copyright (c) 2011 Amanda Morris Johnson

Nine of Tools

Sometimes it is the horror of self-revelation
That gets me to change, if I will only open
My own eyes and look at the situation I
Got myself into by using my life for servitude
To a faceless slaveholder. For the use of
Humans is by far the greatest and most
Utilized tool of all the ages. The question
Always remains, who put the chains on me?
Was it accidental or purposeful? Did I turn
The wrong way and now these consequences
Unfold around me?  It is surely the worst
Nightmare, but if I wake up then I can begin
The road to freedom and break these chains.
I courageously take the first step and look.

copyright (c) 2011 Amanda Morris Johnson

Nine of Light

Often the moment of enlightenment
Calls out the absurdity of my plight:
I drag around the bandages of old
Wounds as if they are important and
It finally occurs to me that I have been
Surely burned but my true burden is
Burnout from the discussion of what
Was and now is the moment of aha
When I step forward and admit that
The scars are merely decoration that
I earned in battles' story and now, here
There's a chance to be free of all of that.
Will I stop hiding the dimples and silver
And shine in my own gorgeous light?

copyright (c) 2011 Amanda Morris Johnson