Awakening

Dear family and friends,

Staying awake is hard work.

In looking back at my last blog posting (nearly two months ago!) I am reminded of what I said: "I am so glad that I am finally starting to wake up. Even though I'm still kind of sleepy and not so sure of this new way of being [mindful], I have a good feeling about this. There is such abundance in the present. I don't want to miss any of it."

True, there is abundance in the present and I don't want to miss any of it. Yet, in the pursuit of having it all, I find myself falling back into my old habits of frenzied busy-ness, a kind of fretful waking dream way of living that is neither fully awake or fully asleep. Just because I can do a lot doesn't mean that I should. Like a pot getting ready to boil, my life is gathering momentum. Most of it is with good things like time spent with family and friends, trip planning, language learning, hiking, cooking, gardening, art projects, service projects, and LOTS of stuff with El Camino de Emmaus. Even though I am supposedly sick right now, my life is getting so busy that it feels like it could easily boil over again. Sometimes I get flashbacks from the bad, old brain tumor days when I was careening around out of control. Makes me nervous.

Being sick last winter laid me low. Yet in that lowliness, there was a peculiar calm, precious and rare for a die-hard do-er like me. Where is the balance between the dormancy of winter and an uncontrolled bursting forth of spring? I want life to bubble up in me like a spring of living water, but I want it to be a contained pouring forth, not a reckless gush like before. That way of living is both dangerous and ineffectual. I'd best keep my wits about me if I want to mindful of the balance between doing and being.

Staying awake is hard work.

I see the struggle to stay awake, aware, alive and mindfully engaged as both a personal and a global struggle. We live in a beautiful, dying world right now. With our burgeoning world population and rapacious greed, we humans are causing the desertification of the earth and the acidification of our oceans. Believe it or not, like it or not, ready or not; here it comes. Global climate change is upon us. What will this mean for future generations, even within our own life times? The struggle to stay awake and engaged in things that matter, yet not becoming overwhelmed by the needs around and within is the path toward resilient hope. I don't really know how to strike this balance yet, but at least I know that is what I need if I am to find wholness and freedom.

I wake up most mornings in the pre-dawn light and often creep out of bed to sit by a darkened window, watching for the sun rise, coffee cup in hand. This is my time to watch and wait, pray and meditate. I call this "feeling in the dark for the face of God." Sometimes I can feel the familiar contours of faith. Sometimes I can't. As a daily discipline, I find ways to affirm my deepest belief, that is that in the end, life and love will win...come what may. It’s not easy to stay awake  wondering if our beautiful broken world is experiencing death throes or birth pangs—or both. In any case, I know that real transformation begins with truth. In the facing and the feeling of what is true of me and of our world these days, I find the courage to live into this new day.

On a good day, the sun shines through my window, warming my face and the new layer of soft brown hair now covering my once bald head.

I wrote a poem about this a few days ago. It is based upon our text for this week from John 20 where Jesus finds the grieving disciples locked in an upper room after his horrible death. He bid them peace and breaths a warm wind of hope into their heavy hearts frozen with fear. It is my own story too.

Still Life

Closed Tomb

Locked Room

Waiting for the Big Boom

......God Forgive Us.

Lingering Night

Fingering Fright

We wish we may, we wish we might

.....God Find Us.

Promises Given

Rumors you've Risen

Still in this prison

....Christ Help us.

Hope against Hoping

in Darkness still Groping

Is the Door Really Open?

....Spirit Free us.

Sun, Rain

Joy, Pain

Life, Death

Stillness....Breath!

It’s hard to stay awake, but it’s worth it. May God, the author of life, awaken us to true abundance. Amen.

PS: The “fun facts” of cancer and chemo for me are this: I am done with the worst of it.  I took 9 out of the 12 prescribed treatments of the most recent chemo cocktail of Taxol/Herceptin. Taxol is a killing kind of chemo that attacks fast growing cells. It was beginning to cause my fingernails to hurt and turn dark, plus it was giving me skin rashes, nose bleeds and the dreaded “peripheral neuropathy.” My Dr. was quite OK with me quitting that nasty business as long as I stayed on Herceptin which is a “starving” kind of chemo that blocks receptor sites in cancer cells, cutting them off from their growth factor.  This is a targeted therapy for “HER2 positive” breast cancer. Thankfully, there are few side effects to this. I think that I will continue to be on this kinder, gentler chemo for quite a while.

PPSS: I am going to Costa Rica for 3 weeks in June/July for language study and also to celebrate being alive. I will also meet up with some dear friends from Luther seminary to relax and play at the beach. Cristo resusito! Christ is risen! Me too.

Walking Lightly on this Earth

"My eyes are not raised too high. I do not occupy myself with things too grand for me. I have calmed and quieted my soul, like a weaned child with it's mother. My soul is like a weaned child within me."   Psalm 131:1,2 




Me sledding with El Camino kids and
families in February 2011

  Dear friends and family, you haven't heard from me for a while. It is not because I have been too sick to write. It's because I did not know how to talk about the new thing that is happening in me. Strangely, despite of all that is, I find myself in a place of something almost like contentment.  I'm still not sure if it is real or if it will last. I hope so.



It helps that the new chemo isn't nearly as bad as I thought it would be, at least not yet. From the first-hand accounts that I read on line, I thought I would be horribly sick, sore and numb in my hands and feet (Taxol tends to attack the nervous system). None of that has happened to me so far. I can hardly believe how fine I feel. I am starting to make plans and get out again. Three down and nine to go with this new stuff. 

So I walk lightly on this earth, feeling my way forward, daring myself to relax and enjoy my life right here, right now, come what may. Contentment and "shy joy unbidden" are new to me. For the longest time, I have lived a life fueled by a high octane mix of fear, frustration and self determination. My old motto was "die trying". I almost did.



What would life look like if I learned to relax? Here I am, stuck in neutral in the parking lot of my own life--and I'm actually starting to be OK with it. All the revving that I've done in the past, that is, all of my elaborate plans to "get somewhere" and escape my present circumstances have gotten me no where. And even if I could have grabbed traction and sped off on a second master's degree, or whatever else I thought would prove my worth, I'm pretty sure I would have had the same outcome; stuck and no closer to anything like real peace. Even though my engine often burns hot, maybe, just maybe, I could turn the engine off  for a while, roll the windows down and feel the breeze on my face. I didn't learn it the first time with the brain tumor experience. Maybe this time I will.

A crucial turning point for me has been an exploration of the way of mindfulness. As I mentioned in an earlier blog, I have embarked on an 8 week course of meditation. I would have preferred to attend a class in person, but since I can't drive very much, that is not an option. The old me used to literally drive 70 miles a day on narrow, winding roads with brain tumor induced tunnel vision.  The new me lays down on a yoga mat at home, listening to a set of CD's that tell me to slow down, breathe, and let go. The way of mindfulness calls me to become more awake, aware and alive to what is true of me and the world around me. The way of mindfulness calls for a kind of "radical acceptance" of what actually is.

Radical is right. Who can accept becoming a middle aged infant with no hair, no breasts and overly focused on "in take" and "out put"? For that matter, who can accept what we humans are doing to ourselves, each other and our world? Just relax and breathe? That's ridiculous!


This is where we need to take a moment to redefine "radical acceptance". What it does not mean is a passive, resigned or defeated approach to that which is out of whack in our lives. What it does mean is becoming more aware and engaged with what is true of ourselves, our circumstances and our world. If I am scared or sad or angry or frustrated, knowing that and accepting it helps me to be able to choose how to respond. Penetrating the fog of pain, shame, denial (or whatever keeps me from fully present to myself and my circumstances) allows me to stop being so reactive and start becoming an engaged and active agent of healing. This real-ization of what is true can be painful and overwhelming at times. That's why I need to relax and breathe, opening to true self and to Spirit as a source of power and peace bigger than anything I could pretend to conjure up on my own. Radical acceptance does not mean that I am always happy about everything that happens. It just helps me to understand and let go.

Unexpectedly, I think the poem/prayer that I wrote just after my diagnosis of breast cancer in late October is being answered in a way I had never imagined. This is my prayer:

Breathe on me breath of God...

Empty me of angry judgements,

aching disappointments and anxious striving.

Breathe on me breath of God...

awaken in me something like quietness,

confidence and real rest.

Breathe on me breath of God...

let the lion and the lamb in me lay down together.

Help me to hear your soft voice calling me by my true name.

Take me by the hand and lead me forward with the the trust of a well loved child.

Surprise me with shy joy unbidden

that rises in me now

to sustain me for the coming then.  Amen.

I am so glad that I am finally starting to wake up. Even though I'm still kind of sleepy and not so sure of this new way of being, I have a good feeling about this. There is such abundance in the present. I don't want to miss any of it.

Thanks, dear friends, for walking with me on this strange and wonderful wilderness road. See you around the bend!

-Mary

 





Embracing the Full Catastrophe

Hola Amigos. I'm back. I've actually been back and feeling fine for about a week now, but have not blogged because what I wanted to say was not "ripe" yet. I think the whole idea is still a bit green, but I'll talk about it anyway. I'll start with what happened last time in terms of treatment. Yep, it was every bit as bad as I thought it was going to be. As enlightened as I am trying to be about this whole experience, I came out of that last one dripping wet and mad about what this is doing to my body. I thought, "is this really worth it??" 

I respectfully questioned my doctor as to whether or not the toxic sludge being pumped throughout my entire system was really "vale la pena" (worth the pain) in light of the potential long term side effects of heart damage, osteoporosis and neuropathy. I wanted an evidenced-based cost/benefit analyis. My main question was: since my "sentinal lymph nodes" were clean, did I really have to have that fourth whopper chemo? To my surprise, he said "Nope." I guess he had just been following protocol by prescribing those initial four big ones.

As it is now, I will begin a different chemo cocktail and a smaller dosage, but given every Monday, for 12 weeks starting Feb. 14. I doubt very much that I will "love" the next go around, but my hope is to make peace with the present tense, no matter how tense my "present" may be.

This brings me to what I really wanted to talk about. "Embracing the Full Catastrophe" is a quote from Zorba the Greek and the basis of a book I am now reading called Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness by Jon Kabat-Zinn. This book gets at a question that I have held in my heart for a very long time. In the face of so much pain in our world and in our own lives, is there a peace that actually transcends our circumstance of suffering? I am not interested in some kind of mystical "other worldly" detached kind of peace. I am looking for a very incarnate and engaged way of being in the world (and in my own skin) that "embraces" all of what life is about in its pain and joy, its ugliness and its beauty. I'm not sure yet, but I think I might be on to something in the exploration of what this book calls "mindfulness." Here is a quote from the book:

"We practice mindfulness by remembering to be present in all our waking moments. We can practice taking out the garbage mindfully, eating mindfully, driving mindfully. We can practice navigating through all the ups and downs we encounter, the storms of the mind and the storms of the body, the storms of the outer and the inner life. We learn to be aware of our fears and our pain, yet at the same time stabilized and empowered by a connection to something deeper within ourselves, a discerning wisdom that helps to penetrate and transcend the fear and the pain, and to discover some peace and hope within our situation as it is, [here and now]."

Soon I will begin an eight week course of guided meditation. The roots of this tradition are Buddhist. Some of my Christian friends might be alarmed by such a thought, but I am not. I spent eight years in China and Hong Kong exploring the dialog between eastern and western ways of thought and I am convinced that "faith has nothing to fear from reason" (Martin Luther). This book and this practice are very western in that a whole body of empirical evidence suggets that when we listen deeply to our bodies and engage in our own healing, we get better faster. Aside from the physical benefits, I see this kind of meditation as deeply complimentary to my own Christian tradition. "Empowered by a connection to something deeper within" has everything to do with my faith in a God that loves us all more deeply than we can now understand. Besides, with my new hair doo, I look like a Buddhist, don't you think?

I try not to waste too must energy "hating" anything because I believe that more is accomplished by loving than by hating. Even so, I still hate chemo. The big ogre with the big stick (former chemo) is being replaced by a smaller ogre that is going to hit me more often (the chemo coming up). I want to grab that stick and hit him back. I doubt that the way of "mindfulness" would recommend that, but I still want to. Here's me: breathe in peace, breathe out pain, fear, aggression...WHACK!" I guess I have a ways yet to go.

here I stand

"The waters closed in over me, the deep surrounded me; weeds were wrapped around my head at the roots of the mountains...Then the Lord spoke to the fish and it spewed Jonah out onto the dry land."  Jonah 2:5,9

I look out the window at this cold, grey day and feel a heaviness settle on my spirit. I often begin my morning quiet times by asking: "what is true of me today?" and then try to bring that question into conversation with God and whatever else points toward a Truth bigger than my own subjective experience. What is true of me today is a growing sense of dread. My third whopper chemo treatment is Monday, January 24th, three days from now. I have to have four of these big ones with three weeks in between to recover. The first week after a treatment is a haze of nausea, fatigue and the isolation that illness often imposes. The second and third weeks are much better, but I still dread the first week, which seems to get progressivly worse each time.

Coming out of a chemo tx is like coming up from under water and seeing the sun shimmering beyond the surface. Going into one feels like standing at the end of a dock and looking at a cold dark lake, waiting for strong hands to grab me and shove me under, holding me down until I am ready to give up whatever it is that I have been holding onto.

What is it that I have been holding onto and what must give up? This is where it gets interesting. Turns out that I have a lot of old stuff clinging to me from the past, espeically from the bad old brain tumor days of not so long ago. As some of you know, meningiomas are almost always benign tumors that grow very slowly. Mine took over 20 years to get that big. That was a long time in which to accumulate the elaborate set of coping mechanisms that I used to mask the shame, fear and depression that came from a slowly progressive brain tumor induced dementia.



For years I tried to appear smart and capable and competent whether I was or not. That falseness almost killed me as I refused to face what was really happening to me. Like weeds wrapping around me and dragging me to the bottom, depression and denial held me under so long it was almost too late for me to come up again. That's why I was SO ridiculously happy when I was told that my problem was a big, fat brain tumor that could be removed. I thought I could have a dementia-ectomy and all my problems would go away. I bounced back that time amazingly well and everyone applauded. The first six months after my brain surgury were euphoric.

My brain tumor, July 2009

Then, with a growing sense of dread, the depression came back. It turned out that my vision was permanently damaged and I could not find work that did not involved a lot of driving. Now that I was suddenly "able" again in terms of my mental facalties, I was also disabled and didn't know what I was going to do with my life. My old demons of anxiety and depression began to circle again and I had no excuse or defense against them this time. Trying to fake wellness only made me more depressed. Those damed weeds  
were reaching for me and it scared me to death.

In late October 2010, I got diagnosed with a very aggressive type of breast cancer and had a double mastectomy a week later. Initially, that sent my anxiety through the roof. But here's the really strange part. Although today is dark and dreary, I am actually more calm and clear than I was before my breast cancer diagnosis. Even though I dread my next chemo tx, I am slowly becomeing more whole in a way that I cannot explain.

Maybe it is because so many people have come out of the woodwork to surround me with love and prayer. Maybe it is because I am finally learning to be more open and authentic about my experience of illness. For whatever reason, I am finding the courage to face personal pain and talk about it in a way that is more true. I do not need to reject my old self that hid in a smokescreen of determination and denial. I only need to embrace that which is new and true and authentic, even if it means becoming bald and vulnerable to do it.

This image of water that both kills and saves is baptismal. But let's not get confused about our images of baptism. Cancer is not a pretty baby baptism with candles and white lacy christening clothes. Cancer and chemo is more like water boarding; scarey and desperate and gasping with relief after the worst of it passes. Sounds torturous, I know, but each time I go under, I let go of a little more of that which is not essential to life. Layers of old falseness are washing away. Newness, shaking, wet and weak is starting to come. I wish there were an easier way for me to let go of my old scared and shameful self left over from all those years of pretending. There probably is, but for what ever reason, here I am standing at the end of the dock again, about to take the next plunge. What's true of me today is that I dread it, but I know that I will come out the other side, hopefully a little newer and a little truer. Thanks for standing with me. See you on the other side.

Love, Mary



limping toward the light

The people of El Camino de Emmaus on December 26, 2010

Hola buen Compañeros!
As many of you know, one of the primary life lines that keeps me semi-sane is El Camino de Emmaus. This is the name of the small but wonderful Hispanic community of faith with whom I walk. The name means "The Way of the Emmaus Road", which is a reference to the path that the grieving disciples walked immediately after Christ was crucified. Luke 24 tells us the story of the risen, but unrecognized Jesus who fell into step along side his devastated friends and walked with them for a while. Jesus drew them into conversation about their shattered dreams and gave them some perspective on the long, long road stretching behind and before them. The scripture says that "their hearts burned within them" as he spoke, but still they did not recognize him. Finally, when darkness began to fall, they found a place to stop and urged him to stay and eat with them. At this simple yet strangely familiar meal, their eyes were suddenly opened in the breaking of the bread.
This little story is one that I come back to again and again as a source of inspiration and sustenance on this crazy road that is cancer (and life for that matter). Indeed, my heart burns within me in these strangely rich days as I vacillate between desolation and hope. Some days it feels as if I am gathered in the company of great friends for a warm meal on a cold winter's night. Other days it seem that we are only beggars huddled against the cold, holding out our hands toward the warmth of a burning barrel fire. My point is that even when I feel lost and alone in illness, I know that I am never truly alone. Not only am wrapped in the support and compassion from so many of you, we walk in the company of all who are mortal and who have suffered. We are surrounded by a whole host of humanity, winners and losers, heroes and beggars, saints and sinners beloved of God, all. I am grateful that perception is not reality. Stars still shine whether we can see them or not. "Ubi caritas, et amor"...where there is love, therein dwells God.  See you down the road...    Love, Mary  PS: to my non-religious friends, please forgive what sounds like a sermon. This is where I find life.

Well here it is, January 10, 2011, and I am circling. Having recently emerged from the fog of my second chemo treatment, I am now clear minded and well enough to reflect upon this experience and almost have the nerve to talk about it.

Why a blog? The first reason would be to reply, inform and deeply thank all those who have walked with me in the valley of the shadow. Whether near or far, “in the know” or not, I have felt an amazing amount of solidarity and compassion from so many of you. For this, I am humbled and grateful. The second reason would be to help me get a bit of distance and perspective on what it means to have my mortality stare me directly in the eye once again. There is never a time when any of us are far from death, so why not look back at it and see what it has to teach us? I think it might have something to do with freedom from fear. More on this later…

Still I circle. Circling the drain? Well yes, that too, but more immediately circling this blog project. This is not an easy thing for me. Although I am quite open about my passions and opinions, I am loathe to talk about personal pain. I suppose it feels like an admission of weakness or might look like a plea for pity, or worse yet, could become a bog of narcissistic self absorption.  Still, writing about this journey into darkness seems worth the risks if any of us, even for a moment, can catch the far off tune of redemption song clear and sweet.

So walk with me, if you will, down a darksome road and listen with me for songs in the night. Thanks.