(Aria January 2008 Photo Courtesy of No Worries Farm)
I snapped this photograph just before we packed into our car to go to the hospital where Aria was going to be admitted and our cancer journey would officially begin.
I can't tell you what made me think to capture her at this time. As I look upon it now, I'm certain I was trying to get as many images of her as possible knowing that these might be her last.
This essay is something I wrote describing the suspended reality of those first few moments of the journey.
Surreal is how I describe the experience. Of course, that’s the right word. Except it’s too small. The pastoral landscape along my school-route commute dimmed as if the crispness of the cold snowy January day had been smeared with wet ash. I drove the speed limit but the car crawled like being stuck in rush hour traffic. I parked along the curb next to the school barely remembering how I got there and took some deep breaths as I stared at my baby sleeping soundly in her car seat. When I looked out the window, I saw Reo and Aria lined up ready for me. They ran into my arms the moment they saw me. Aria lifted her left arm above her head showing me that she didn’t have pain and then shared her preschool treasures. I knelt on the ground willing this moment to last forever, knowing that as soon I stood up, life as I knew it was gone.
I strapped them into their car seats memorizing their faces. They sensed the tension and quietly waited for me to speak. I cried first. Guys. Listen. I’m feeling really sad, so try not to be scared if you see Mama cry. Aria… We are taking you to the hospital today because you are very sick and there are doctors waiting to help you. Right now we’re going to go home, grab a snack, and meet Dad. Together we’ll drive to the hospital.
They didn’t say a word. At the time I couldn’t utter the words leukemia or cancer. I simply did not want to believe it true. On the way home, I gazed into the snow- dusted wheat fields and watched the color of my life, as I had painted it, dribble into a muddy puddle. What I had imagined of the future, looked like a penciled outline on an enormous canvas I hardly recognized. My every movement, getting out of the car, helping the kids, holding the baby, juggling backpacks and school papers, was stiff and robotic. Lighthearted goldfish snacks, grapes, and apple juice boxes were juxtaposed against the unrelenting fear-filled weight of cancer, chemotherapy I didn’t yet understand, and the real possibility of death.
I wanted the silent, twenty-minute drive to the hospital to feel safe. I muttered sentiments of courage but I didn’t feel brave. With every passing mile, my eyes darted around searching for positive signs for what lie ahead. Nothing. Only a wrenching feeling that something awful was coming closer. The sensation reminded me of watching video footage of tornadoes. Storm chasers seek potentially life-threatening storms, putting themselves in positions where they know there is no escape and nothing to do but film the impact and hope for survival. My eyes became a camera, taking in every detail along the way. Full impact of our a new reality, including the devastating fear that Aria might die, thundered when two metal doors closed as we entered the oncology ward.
Checking in, signing consent forms using a Mickey Mouse pen, I looked around the waiting room that reminded me of a small daycare. All added to a growing sense of unearthly doom. Surprisingly, my vision sharpened with every detail registering in high definition. The experience was like putting on swim goggles, forgetting to peel away the protective covering and then after doing so, sinking into a crystal clear under water world.
We cautiously walked into the playroom. Aria climbed into her dad’s lap and buried her pasty sullen face in his chest. I think she finally gave herself permission to drop the bravado and feel sick. Reo found toys to play with while I held the baby. I clutched her to my chest like a life preserver. I needed to hold onto life because death felt too close. A lovely, cheerful nurse walked into the room, picked up Aria’s limp arm and put a hospital bracelet on her wrist. Despite signing consent, I hadn’t voiced my permission. Inside my mind I screamed, Noooo! This can’t be happening! I watched helplessly and felt my stomach knot. The first of several that would happen throughout the day. Already, too many new pieces of this journey were in motion and beyond my control.
I asked the nurse, Is this standard procedure or something?
She smiled, tilted her head slightly and with tender eyes said, My understanding is that you are being admitted today. Is that your understanding?
It was but I denied it.
No. I thought we were here to determine IF Aria had it.
I still couldn’t say cancer or leukemia.
The nurse took a breath. Her eyes searched mine trying to find something to say. I remained speechless.
Doc gave me a hard look and said, No. We understand we are being admitted today.
I stood up and started to pace.
A few minutes later a mother and her daughter walked into the playroom and sat down at a table and started to play GoFish. I guessed the young girl to be around eight years old. She was thin, pale, bald, and sunny. She and her mother were giggling, thoroughly enjoying themselves. I loathed their happiness and hated seeing them there pretending to be normal. It never occurred to me that they could actually be enjoying themselves. Aria, glued to my husband’s lap, stared vacantly, pale and miserable. How on earth could this mother and daughter find even a thimble-full of joy in this wicked place?
I sat at their table to find out. I squeaked a hello and asked how long they’d been coming to clinic. I’m sure we exchanged small talk and nice-nice but I don’t remember. The mother told me that her daughter had been in treatment going on five years.
Everything in the room vanished at that moment. I thought I had fainted and fallen off my chair. Five years? I had no idea that a cancer journey could last so long. I don’t think I said anything more than, Wow. I’m certain my mouth was wide open for a long time. The woman stared at me and with a knowing smile asked, How long has it been for you guys?
15 minutes, I said.
(photo courtesy of No Worries Farm January 2008)
The Awe of Tears
Right now, I’m allowing mine to gently pool and spill.
My tears do not reflect a particular sadness or joy. Instead, they are surfacing likely because of many sadnesses and joys.
What’s undoubtedly surfacing right now though, is knowing that 9 years ago tomorrow, Aria was diagnosed with cancer. Everything changed that day. I wonder if you can fathom that. Everything.
Known routines. Shifted.
Hopes and dreams. Gone.
Spiritual practice. A necessity.
Relationships. Lost and gained.
God. Real-Eyes’d (thank you Jeff Brown)
Surrender. Fully experienced.
Death. A constant companion.
9 years ago tomorrow, the landscape that was my life, dribbled like watered down paint weeping on a canvas. Puddle’d muddy brown mixed with many tears, it would be years before I began to make a life with color again.
3 years I held her away from me over the drooling mouth of death.
3 years Death’s incessant presence reminded me that it dictated everything; how I breathed, how I slept, how I loved.
3 years I watched children ripped from the arms of their parents.
3 years I watched parents fall into death with their children.
3 years I watched parents reach an accord with death—a mysterious partnership that I never wanted to know.
Aria is 13 years old now. She is brilliant, athletic, wise and alive.
I no longer hope. I don’t need to.
I dream bigger than ever.
Prayer is the way I walk.
Food is a quirky addiction.
My spiritual practice has deepened and improved every facet of my being.
My relationships are priceless. I love deeper and better.
Money is measured in all sorts of abundance.
Faith is mercifully gone!
Goddess knows Her place.
Trust is how I breathe.
Surrender is in my smile.
Death remains a constant companion.
9 years ago everything changed. I cry over what was lost. I cry over what was gained.
I purify myself through the awe of tears.
The Awe of High School
Earlier today, I told a friend that I hadn’t written a blog post because Awe had not visited me in the way that it does…at least it hadn’t in that moment. Awe cannot be forced. Awe, when it happens, when you’re in it, You. Just. Know. So I’ve learned to wait, knowing awe will come when it will. And it always does. Always.
I have a son who likes to walk the banks of life. He knows every single aspect of the river he walks beside. Occasionally he’ll get in, swim around and socialize but most of the time he prefers the edge where he can watch and observe. When Reo wants to jump in and swim around, I’m all there for him. So when he said he wanted to go to his high school spirit game—the first basketball game of the season for both girls and boys, I was not going to get in his way. He bought himself school spirit game t-shirts and he explained the half-time show we were going to see. He was thrilled to participate in this way.
I thought we’d take our time and casually show up. Nothing doing! Reo insisted we arrive early and thank goodness we did. Our little community was all there! We walked into the high school to a full house. I’ve never seen anything like it—at least not since my high school days.
The bleachers on both sides of the gym were packed. The roar of crowd was deafening. The energy, fever pitched, made my heart race. What a thrill!
The Awe I experienced was something I had forgotten about. An aspect of the human experience I’m going to call ‘the parade.’ I sat in the front row with my daughters at my feet on the ground. The place was packed with high school and middle school cool. Small packs of decked out boys and girls walked along the court’s edge in front of the bleachers—all of them desperate to be seen while trying not to look. Back and forth the parade went. Some of the kids practically pacing making at least a dozen passes throughout the game. The teen-aged angst and enthusiasm was tangible.
I looked over at Reo who did not want to sit with me and his sisters. He wanted to be with the high school kids. And there he was in the middle of the crowd, on the banks of it all with a smile that barely fit on his face. He’s stepping into high school and the parade in his own way. What a joy to witness.
The Awe of the Moon
I’m up early and high in the western sky the full moon begins to set. As I stared at it in wonder, a smile erupted on my face. The moon and the earth’s tides are connected. I love to hold that fact—not that I know what to do with it because it’s too overwhelming. Still, the beautiful sphere up there and I are connected.
Suddenly I thought of a story I love and I thought I’d share it with you.
One day, high in a mountain in a lonely monk’s hut, a thief came prowling around. Quietly, he entered the wooden shack not knowing what he would discover. To his dismay, there was nothing. A small wooden table where a bowl, a cup, a plain teapot, and a set of chopsticks made the single place setting. There was a chair, and a small mat, where someone slept using a thread-bare blanket. A few other items were scattered around the neatly swept but poor dwelling. The burglar thought, This poor wretch is worse off than I am!
Nevertheless he grabbed up what he was able to carry not wanting to have his journey be an entire waste. Then he ran away. In his haste down the mountain, he nearly knocked over a monk slowly making his ascent. The monk paused and bowed to the man, who pulled his stolen goods closer to his chest and bolted as if seeing a ghost.
The monk entered his home a short while later. There he discovered that what meager possessions he had were gone. As he wandered around the room, he caught a glimpse of light through the only window. He walked to the window and saw the full moon rising. Staring wide-eyed, he began to weep and said, If only I had been able to give that man this moon.
The Awe of I Don’t Know
If you’re a know-it-all like me, then admitting that you don’t know is often really hard. So let’s take a peek at that.
Some of you not afflicted with know-it-allness are probably hearing thoughts like, I never have an issue admitting I don’t know things! There’s so much I don’t know!
I hear you. I wish I were more like that. Admitting when I don’t know has been a practice I’ve had to cultivate that has grown easier with time. I’m absolutely positive this kink in my humility started early in my life—probably sometime in elementary school. Although I can’t recall anything specific, I can guarantee you I experienced some humiliation of not knowing an answer to some question. The result was shame and embarrassment. So how to avoid this kind of shame in the future? Overcompensate by becoming a crummy know-it-all and avoid admitting not knowing at all costs!
The good thing is that no matter how hard I tried, I was never a very adept know-it-all. I never reached full Hermione Granger status! I was always about 2 notches behind her, but I could totally relate to her arm-raising-gonna-pee-her-pants need to blurt answers. Knowing is power and power feels like confidence.
This is an illusion, of course. A cover. A false confidence to mask deep insecurity. At some point in my adolescence I must have received a gentle wake-up call to quit being an asshole and channel my smarts some other way. Slowly over time with great mentors supporting and encouraging me, the academician started to emerge. The one who became less interested in knowing and more interested in questioning.
As every good investigator knows, for every answer at least three new questions appear. Knowing it all becomes a harsh humiliation. The good news is that the realization is funny and the joke was on me!
But there’s a prickly side to admitting when we don’t know. There are people in the world whose unresolved insecurities mold them into shamers. They’re the ones who respond to your admission of not knowing with shitty things like, Really? I’m surprised. I would have expected you to know that. They can’t help themselves. They can’t see that the one admitting they don’t know is in a place of courageous vulnerability. Shamers struggle with vulnerability. Their mindset perpetuates the falsehood that vulnerability is weak and weakness of any kind is bad. This is their operating illusion. Not only is it painful to encounter, it reinforces a kind of self-protection that doesn’t enable us to admit when we don’t know.
See how the cycle works? The bottom line is simple. Thich Nhat Hanh said it best; Our own life is the instrument with which we experiment with truth. We’re going to make mistakes--the only balance to success. We’re going to have gaps in our knowing and understanding—the energy that fuels curiosity. We’re going to be humiliated—the only invitation to humility. We’re all on the holy wide open road. The least we can do is pave the way with gentle kindness for one another.
The Awe of Violence
Awe is no stranger to shadow. As I marvel in awe over the birth of my three children—their conceptions, my pregnancies, and the whole process of their beautiful deliveries earth-side, I marvel in equal awe over the death of my beloved mother. I was there to watch my children receive their first breaths and I was there to witness my mom breathe her last. Both were Awe moments.
I think of my childhood. I never once doubted I was completely loved and cherished. In the years that I have been privileged to gather with women from all kinds of experiences, I am in awe to learn how many grew up in utter dissonance. Many were abused and neglected by the very people who were supposed to love and care for them. Awe is in the disregard people express toward one another, particularly as it relates to the most vulnerable.
I married a man I met when we were still forming the foundations of our lives. He is one of the kindest, most considerate, generous souls I know. He never doubts me. He encourages and challenges me. There are millions of women who have no idea what this experience is. They know the physical harm of sexual abuse and that of a cold slap or steely punch along with bitter soul-deflating words. Awe is captured in the cruelty of the human experience.
I live on a quiet peaceful farm. I hear gunfire periodically. Most of it echoes from an air force base a few miles away when they are doing military practices. We hear the occasional hunter. But there is no war zone here. I don’t know what a bomb feels like. I don’t know what it’s like to have airplanes fly low overhead dropping explosives designed to indiscriminately destroy and kill. I have no idea what it would be like to have my surroundings shatter to rubble. I don’t know the terror some have endured both domestically and abroad. Awe is steeped in the fury of conquering powers.
Violence has a seemingly infinite array of expression. Frankly, I’m in awe that the earth has survived as long as it has given the cataclysmic nature of the cosmos in which we rotate. The awe of violence is everywhere and in everyone. It is only when we humbly and fearlessly stand before our own violent thoughts and actions that we allow the transformative powers of Mystery to shift ways of destruction to new forms of creation. Every human being possesses the ability to create the world they want to see but only if they dare to understand the nature of duality in all things. This understanding is a warrior’s path where violence is transformed in every step.
The Awe of Intentions
Yesterday I was privileged to host Feed Your Soul—a new gathering for women at Souls Center. 18 glorious women showed up to write intentions for the new year, 2017, on small pieces of white ribbon that we later pinned and sewed onto an appliqué piece, I made, called, The Dawn. This linen piece used to be a favorite skirt that I simply wore out. That’s what I do with most of my favorite clothes. I wear them until they need large patches, like trees or mountains or rising suns—even dragons! Then with more time, the weave can no longer be preserved despite over-the-top patches, and liners. So I cut them up and make them into other projects.
My children were home while I was away. They are of age to take care of themselves for a few hours at a time. We are in transition marked by their increasing independence and my decreasing identity as sole mothering caretaker. The shift has been slow, precise, and intentional.
When I came home after such an inspiring and elevating afternoon, I was greeted with happy and at ease children. We went out to dinner and played the entire evening. As bedtime started to roll in, thoughts that I hadn’t yet written an AWE blog post began to nag. Taunts that I was not aligned with my commitment to write daily poked and prodded beside the sweet warm cuddles of my youngest.
My daughters begged me to climb into the big bed and read bedtime stories and poetry with them. Initially, their beautiful reading voices mixed with my own inner negative dialogue until a single glaring moment.
I paused. I took a deep breath. With discerned intention, I chose to stay with them, falling naturally toward sleep. I could have tucked them in for the night, scrambling down to the computer to fulfill my commitment but I’m certain that is all I would have been doing--fulfilling a commitment without fully participating in the whole process. That is not how one lives with intention.
A smile erupted on my face as I pulled my girls toward me even closer. Their warmth and sweet soapy smells enveloped me. I knew I would write about intention sometime today as a representative of yesterday’s post. And here it is.
Here’s the validation of my decision: This morning I awoke to news that a school-mate of my son, Reo, and his mother were tragically killed yesterday. Imagine if I had been so focused on my self-prescribed goal, that I followed the nonsensical berating voice, prioritizing it over the needs and desires of my girls.
Living with intention requires that we listen to a deeper voice, a softer wiser guide.
A dear friend likes to say she’s going to read the back of her eyelids. Meaning she’s going to take a nap. What a wonderfully playful way of describing one of my favorite ways to pause.
I, literally, like to read the back of my eyelids. I’m sure many of you know exactly what I’m talking about. My favorite way involves turning my face toward the sun with my eyes closed, watching the colors shift. If the sun is nice and bright, red will be the predominant color, presumably due to blood flow. But if you hang out there for a little while, you’ll notice different colors begin to swirl.
There are times at night when I resist falling into slumber. Often I’ll close my eyes and watch a strange kind of fireworks. Bright lights bursting and moving in ripple type patterns, usually white or yellow, sometimes blue. Other times, I’ll pause at some random moment and what I see reminds me of snow on an old-time television or a Jackson Pollock painting.
Reading eyelids is like having your own built in kaleidoscope. Let’s read our eyelids together right now. It only takes a few seconds. Close your eyes. What do you see?
Initially, what I saw were bright bold lines framing a black square center, mostly on the top and bottom. Obviously, this is the light from the computer screen I’m sitting in front of. The beautiful part was the arc in the lines, due to spherical nature of eyeballs? I don’t know the science here. As I sat looking at those lines, they started to fade a little. The square black shape dominating the center began to look like it had bites taken out of each side that were getting bigger and bigger. I imagine if I paused even longer more colors would have started showing up.
For those of you more serious minded folks who can’t be bothered to play with your eyes closed and notice swirling colors, think of it this way. When you’re reading your eyelids, and paying attention to the wonder that appears on these essential and protective canvases, you are not thinking about your to-do list. The errands that need to get done. The items forgotten at the grocery store. The bills that need paying. The appointment you forgot to follow-up on. And so on. You are allowing shape and color to define a moment for you. This is called meditation and what you might not realize right away is that this moment of pause brings a moment of calm and perhaps even a moment of clarity.
All because you noticed your eyelids? Yes. That’s the awe of them.
The Awe of Forgetting
Forgetting is as common to the human experience as breathing so where’s the awe? Awe is supposed to be something special—something moving right?
May I remind you that Awe is more than the spectacular. When awe is mundane, it’s harder to see, but that’s the whole point! When you can begin to see the awe in the every day...well… I’m going to let you just sit with that, as it is.
To my mind, the awe of forgetting is that it is both Awe-some AND Aw-ful depending on the thing you’ve forgotten. Take me for instance. Last night I was thinking about this post and what I wanted to write. The possibilities are infinite. A thought came to me that resonated and had a degree of ease and flow.
But in no time, I got busy with a few other things. Tidying up the kitchen. Getting the kids tucked into bed and so forth. When I finally put my head to pillow I allowed the earlier thought of awe to float around and watched words come and go. I went to sleep feeling confident and clear that I knew what I was going to write.
This morning, I can’t remember what I was thinking about! I’m serious. I’m completely drawing a blank. I know the thought is in there and more than likely some time today, it will pop up out of nowhere and I won’t have a piece of paper or a pen to write it down! That’s the Aw-ful part so I’m going to remember to put a pen in my bag and I’ll use my hand if I can’t find paper. The Awe-some aspect is thinking about the mind itself.
Where did this thought go? What’s layered on top of it that I can’t retrieve it right now? What does my brain look like when this memory connects to certain neurons and fires and I get that rush of recollection? Wouldn’t it be Awe-some to watch and see that happening?
Forgetting is a powerful neurological event and I would be insensitive if I didn’t acknowledge that sometimes when the brain in is decline, forgetting and the inability to retrieve is overwhelmingly Aw-ful.
Furthermore, let me mention another quieter aspect of forgetting that’s pretty Awe-some. Sometimes the mind has a caring way of forgetting trauma. It’s often called repression and if stuffed away for too long can cause Aw-ful damage. However, sometimes in the moment, disassociation and forgetting can be a life- saver!
The Awe of forgetting- both Awe-some and Aw-ful.
ps: Just as I was about to post this piece, I REMEMBERED my thoughts from last night. Not to worry. I wrote them down!!
A woman asked a Sage, How can I tell if I’m spiritual enough?
The Sage answered, See how many times throughout the day you become upset.
Each of us possesses a spiritual gauge that brings our awareness to our emotions and story making, which defines the human experience. The taming and balancing of that experience, however, is the spiritual practice.
Today, notice how often you become upset. No judgment. Observation only. I don’t want you to do anything about what’s got you ruffled either. I just want you to watch your feelings and thoughts. Pretend they’re birds and you’re in the field taking notes. You can analyze what you’ve observed later, but for today, collect the data.
Remember. The human experience of emotion and thought differs for everyone. Doesn’t it seem reasonable that the spiritual path for addressing those experiences would differ too? Isn’t it marvelous that we have so many ways to practice? So many good teachers? So many inspired writings to read and guide us? Sometimes I stand in awe at the infinite array of possibilities! I wish this life granted me enough time to explore them all!