The Girl With Green Hair

by Elizabeth Honan Amber

Once upon a time there was a little girl with green hair. Not the green of dye, but more like ferns: long and lustrous, proud and strong.

One day, she came across a wooded spot that had not been there the day before. The woods had a tendency to move, like doors and houses. This wood, like so many others, boasted of tall trees and branches all stretching to hold each other. The birds were calling their noon time prayers, the Check In, to make sure the stars were still on track.

This was the girl’s favorite song. Even though she never went to into the trees, she always stopped to pray and listen to the songs of the birds. They made her think of the future and of dreams rolling in like thunder to quake and wake parts of life caught in slumber and forgetting. She had a habit of crossing her legs and pretending to curtsy to the stars, especially to the one that always came and hung over her house. The girl believed that the stars carried dreams with them, and that if you had faith, that a dream would eventually find its way to you. She felt if she acknowledged with a curtsy, showing humble honor, to this star that came to shine above her home, it would continue to be her beacon; and that the dream it carried would make its way to where she was to light up her future.

She feared that without this hope her life would only be full of moving woods, doors that never led to the same place, and all sorts of other ill-conceived and vexing changes. She didn’t want to be forever worrying about what would happen next. To her, the star was the only thing in her life that didn’t move, and she took comfort in that.

As she was walking along the edge of this newly arrived forest, she spotted an owl looking intently at her from a low perch. She was awestruck by this rare sighting of a creature from the mysterious woods. They didn’t usually venture so close to the edges.

She decided to move closer, and then offered up a shy hello. The owl nodded in return. The girl wasn’t used to silence being part of a conversation, so she moved to fill the empty space:

“Isn’t it a lovely day?” she asked. “I love it when the trees appear and I can come to hear the songs.” Hoping to impress this stranger, she added, “I always stop and pray with the birds.”

The owl blinked, and she took that as a good sign. So, she went on, enjoying having someone to talk to. “I’m hoping that a dream is on its way to me from my favorite star. You can’t see it right now, but it always shines right over there at exactly the same time every night.” She pointed to the sky above her little house.

The owl looked up but she went on before he could say anything, “I find stars so comforting — the way they always show up and never die. I love that. I want to be like a star when I grow up, always shining, and never changing or disappearing.

She suddenly grew self-conscious and decided to ask, “Do you have a favorite star?”

The owl, stared back, eyes wide, as if in deep surprise. Then he said in a clear low voice, “That is a very popular star. I believe she belongs to the Andromeda family.”

The girl blushed but before she could respond, the owl fluttered a bit and kept talking, “Stars die too, I’m afraid. They don’t live forever; you just can’t see them disappear.”

The girl went pale at this. Her hair even seemed to slump. What could the owl mean? Was he just being cruel?

The feathered creature went on, not noticing, “Most of us can’t see that far away, so it’s natural to think they never change or disappear. But they do. Just like everything else.”

She was stunned and her body went cold at these words. “What about my dreams though?” the girl cried out, “The star is supposed to send them! What if it dies before it reaches me?”

Sinking into the grass under her feet, her imagination felt on fire. All the things she had thought were sure, fixed, unchanging, were no different than anything else, uncertain, fragile and vulnerable. Her life had been filled with dread at these changes, and her prayers had been about finding a way to make everything stay where it was, as it was.

She waited for the tears and grief she was sure were about to overwhelm her.

But as she sat there none came.

Rather than feeling depressed she realized she felt calm, even curious. She was also strangely relieved.

Her mind began to feel like a puzzle that had finally found a missing piece; if stars die too, then that meant that even she would one day change and then disappear.

She wondered if, rather than praying for life to be different, to be saved from changing, she should have been praying for the courage to not fear these uncertainties. Perhaps instead of wishing that doors didn’t move, she could just see what was behind them and follow wherever they led?

She looked up at the owl who continued to sit on the branch gazing back at her. She wanted to ask all sorts of questions, but at the same time felt she didn’t know the right ones.

The first question that tumbled out, however, was, “What do I do now?”

Rather than answering in words, the owl blinked back, as if to say, “I’ll show you,” and then expanded his wings and slowly pumped the air underneath and flew off.

The girl watched the owl fly up and over the trees and then disappear. She was quiet for a long while and then began to feel a gentle sensation moving through her veins, bringing energy and a new kind of curiosity that held courage within. The woods seemed to call to her and she decided, for the first time ever, to go.

She took a deep breath and then stepped across the threshold into the trees. She looked about her, taking in the shaded and lush growth all around. There was so much to see! She walked a little further in, but she didn’t want to get too far from the place she had entered.

She stopped after a few feet, unsure what to focus on. Then she looked up and just stared, open mouthed at the view. The tops of the trees were so tall, and they seemed to be reaching for the sun, waving back and forth. It almost made her dizzy with the wonder of it. Then her hand, as if of its own accord, reached to touch the texture of the bark and moss growing in patches along the trunk.

Finally she took her eyes away from the tree she had been examining as something yellow, a short distance away, caught her eye. She could faintly see what looked to be tiny flowers waving to her. She hesitated about going farther into the forest, but, she reasoned, a couple more steps away from the clearing would be fine.

As she moved closer, she realized they were buttercups! The little girl never imagined finding something so familiar to her here. They stretched to meet her as if to say “hello and welcome!” Again, her hands instinctively reached out and her fingers gently slid along the silky petals.

Even though these flowers were common and simple, usually found among the weeds and dandelions, something about them had always made her smile and feel at home. She started to get excited and to wonder what else might she know here.

She started to take small steps away from the buttercups looking intently at each new leaf and flower she saw, finding many that were familiar to her. Soon she was saying hello to all the plants and fully engrossed in their conversations. She watched the birds flitting about and listened to their Call and Response songs. She was overwhelmed by the wonder of it all.

Whatever she had expected the woods to be, this peace that she was experiencing was not what she thought it would feel like. There was rest here, and joy. And she was happy; so happy in fact, that she wanted to stay, forever.

But after a while, a nagging sense of time welled up from her stomach. How long had she been out here? What time was it? Suddenly she felt unsure of herself. She tugged at her hands, uncertain what she was supposed to do next. Should she go home? But how would she even find her way back? Had the woods moved again while she was in here?

At the same time, she didn’t want the day to end. But the worry began to cling to her like sticky seeds hitching a ride. Why this anxiety of loss, of ending, of having to be done with a day? What did the worry mean? Was she wrong to have come here?

She went over to a tree that looked comforting and nestled herself in the groove of the roots and began to cry softly. She wanted the owl to come back and tell her what to do. She needed someone to help her. She looked up, hoping her wise feathered friend would appear on the branch of the neighboring tree. But instead of the owl, there was a little brown bird.

It was so small and it didn’t look wise like the owl had, but she was desperate to ask someone, anyone.

“Little Bird,” she said, “if I leave to go home, will I be able to find this place again?”

The bird, who was a mother and knew about babies being afraid, looked down without expression; there was no pity, hostility or impatience; just acknowledgement.

The mother bird replied, “Why do you want to find your back here?”

“Because I’m so happy. I don’t want to leave but I have to go home.” The girl was trying to keep her voice calm, but the tears were taking over.

The bird paused before answering, letting the little girl find her breath again. “My dear, this is simply a place you get to be. You will be lots of places. The question of finding your way back won’t help you to find your way forward.”

She went on, “Being here, or somewhere else, is not the point. Life is about collection and letting go; holding onto yourself, but also letting yourself move. That’s the way it is.”

The girl was quiet, overwhelmed by all the thoughts shifting and changing once again in her mind.

She finally asked in a desperate voice, “But if that’s the way it is, why am I so afraid?”

The mother flapped her wings and jumped a little on the branch, like she did when she was calming her chicks. “That doesn’t have to mean anything, fear always comes before flying.”

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How to Pandemic

Last week, as the Global Pandemic began rolling in, orders to stay indoors and to not go out of our homes began in earnest.

And just like that we all started to ask the same question:

“What are we going to do for the next few weeks at home, in isolation?”

In response, a tidal wave of ideas, content, and options to help keep you busy, motivated and productive began poring in. More and more every day.

Which is making the questions less about what will you do, but how do you choose?

How do you choose when the options are endless? And what are appropriate expectations for yourself and others during this strange time?

When we have so many choices and one little body that has finite energy and emotional bandwidth it’s a sure bet we will enter the overwhelmed state of Option Paralysis.

“What should you do?” is what we all want to know, but, “What can you actually GET yourself to do?” is the question that is more than likely tripping most of us up.

This is an age old tension that is exacerbated in times of stress: while our brains go into hyper drive and start making lists, charts and graphs, your body can simultaneously become more and more unresponsive, heavy and resistant.

Right after your energized pep talk to yourself your body probably responded by regressing into an overtired and lethargic equivalent of a five year old who doesn’t want to do anything but sit on the floor and cry.

Then all of you is crying, Body, Heart and Soul.

How will you find your way when nothing is as it “should” be? How in the midst of so much new chaos and input, do you even figure out what you need and/or want?

But more importantly, how do coax your body out of the fetal position and toward the shiny object of a good book, self care or something “productive,” so you can start to feel at least a little more in control again?

The body communicates the only way it’s been given: through shutting down, pain, tension, tears, emotions, feelings and movements. If something isn’t working, maybe don’t push through, ignore, throw a fit, or bully him/her into submission. Rather, as gently as you can, listen for what your body asking you to look at, address or change.

In many ways, this global crisis has been made worse by our reluctance to listen to our bodies. As a society we have rewarded pushing through and ignoring symptoms. Listening to our bodies takes practice and intention and begins with noticing what feelings are coming up and what those feelings are asking you to name.

It’s okay to not know what’s going to happen tomorrow, and it’s okay to take time to let the scared, confused and grieving five year old in you hug your stuffed bear and calm down naturally. It’s good to go slow and ask yourself what sounds good and/or right for you to do next.

In my experience, the answers often won’t have much to do with productivity at first, but may prompt you to establish some boundaries and set up some safe or creative space for engagement with whomever and whatever you need to engage with.

Go slow. Take your time. Allow the limits of life right now to be re-framed as creative challenges. Let your body tell you what’s next, and believe him or her when they say, “The way you are trying to force yourself to do something, it isn’t working.”

Navigating Hope and A New Medication

The results thus far have been hugely promising as many trial recipients have seen an increase in lung capacity, decreased mucus production and lung infections, and in many cases it has drastically improved overall quality of life. All of that, however, is not a guarantee that it will have the same effects for everyone and it also doesn’t mean all our bodies will be able to tolerate it. We each have to do our best to determine if and how it can benefit us.

If you haven’t heard, Trikafta, aka The Triple Combo, was approved by the FDA last Monday (October 21, 2019). This is a breakthrough medication that directly targets one of the main Cystic Fibrosis genes. Those of us who have at least one copy of the Delta F508 mutation, which is about 90% of the CF population, will be eligible to try it.

To someone not stuck in a loop of sickness, recovery and managing symptoms, it can seem like the math is easy: Sick + new treatment = better.

But better is relative to where you are starting from and each person’s particular case. Therefore, managing expectations is a major component to this equation.

For some of us better would the ability to make through a trip to the grocery store without having a coughing attack. Or another worthwhile improvement would be to not need supplemental oxygen, which would allow us to move about more freely without cords, tanks and looking so sick. Better could also mean less hospital admissions and/or a lessening of anxiety induced hyper-vigilance in coping with our disease progression. And some of us will hopefully find ourselves being able to return to work or school, start a family, and/or fulfill some big life goals.

It’s important to understand however that new treatments are often packaged within language like, Maybe, Hopefully, Possibly, and Soon. When these words are coupled with other alluring terms such as, More, Better, and Longer, the imagination can’t help but to start entertaining stories of what could be. “Maybe” the new drug could help me feel “better.” “Hopefully” it will enable me to do “more.” “Maybe” it could “possibly” even allow me to put off transplant “longer,” or at least add some years to my life. When can I get my hands on this drug? Soon. When could I start to see results? Also soon.

ebcee8If you’ll notice, nothing that I just said painted an exact picture of anything. Like a good PR campaign, all the words are subjective, abstract, and opaque. At the most they give us permission to move our imagination toward positive outcomes rather than negative ones. Ultimately though, these words act as more of a Rorschach test than as a definitive picture of one’s future life. Because, just like a Rorschach, we each see what we want to see. It doesn’t describe anything of physical substance beyond our own subconscious biases.

We cannot know if or what Trikafta will allow us to do prior to starting it. All of us, no matter our health, have to learn to navigate hope and statistics with fear and opening ourselves up to possible disappointment. The small number of cases that don’t respond to the treatment, have horrible side effects, or that absolutely cannot take it, is part of the math that we have to do. Are we willing to risk hope, and our bodies for an unknown better?

For many of us the answer is an unequivocal YES. But it’s personal. We all have our own path to walk with this disease. Therefore if you are someone supporting a person with CF who can take Trikafta, please don’t just hope for better and only ask, “is it working?” Instead, step back and ask about how they are holding hope and what they hope better can mean for them. Give them space to tell you all the ways this news is exciting, frustrating, scary and/or guilt inducing. This medication, like all the ones before and after it, is not a beginning or end, but rather part of their journey. We can’t let our imaginations distract us from staying current to what is happening in real time, today, in our bodies, hearts and emotions as we decide to say yes, again, to hope.

A poem for 2018

In this season of hesitation
I am learning bravery, 
and to ask, 
why do I pause?
where is the fear taking me?

I remember that God is good
all the time,
and especially on Mondays,
when movement is easier.

I say goodbye to unhelpful questions
that keep me paralyzed and afraid of failure.
I say hello to all that is before me: 
awkward moments, uncertain hours, 
 a racing heart -
the feel of YES.

A Journal entry – January 2018 – “Why is writing so difficult?”

Writing without stopping. As fast as I can. I don’t know quite what it will be, I never do. It’s unnerving, every day to face this question of what I will write. I agonize all day long, wandering and wondering… why do I avoid it? What am I afraid will come out?

I just hold my breath until I can’t anymore, holding and holding, over and over again. Why can’t I just breathe in and out, write and rest, write and rest?

Sleep, think, write, walk, run, breathe, hold, release, hold, release. Catch, find, keep, release. I have the tension wrong, the purpose is off, the rhythm is bad. It’s unsustainable, ridiculous, holding and holding, fainting for lack of oxygen. Holding, agonizing, wringing my hands, avoiding the chair, looking at anything but the page.

For whatever reason my excuse is that I don’’t know what I will write, or what I need to work on. When the question is rather something that should be asked after the fact: What is this that I have written? What need is next? Not, what should I write? I’ve tried, its always doomed from the beginning. It’s like asking, what shall I do with this life? All the while forgetting Life is happening, in motion, some of it gone.

Hold tight but not too tight, you’ll hurt something, break apart when you should have been bent, or shatter when you were meant to conform. Breaking is hard, too much for the body. It must bend and twist and move, and glide and sing. Pull and push, invite and give. Not break, and hold and disappear. It is a conundrum. A truth. To work the movement. To bend the will, to listen to the voice, to say yes when all is screaming no.

The no is valid, it is the backdrop. It is the blank slate that every yes is put upon. It holds the tension, the edges, the lines, the glimmer. Without it the yes would have no texture, no feel or look. It would never be right without it’s opposing wrong, it’s blank space, with unending light. Light with no dark, dark with no light. Fall without summer.

To be here, to write, to think, to put it all down. Ten, nine, eight, seven…slipping into the hole of Alice in Wonderland, to find what needs to be found. You do not ask, why, what or how. Just do it: become, transform, right foot, left foot. Around and around. Step, flick, swish.

Journal entry. Date: January 2018

Schedule – a poem

A work schedule

full of a subtle tension

made their way

seeking a fresh start.

This morphed into an unexpected decision about the future.

Due diligence is more important than ever.

After breakfast just drive.

Around noon sprawl introspectively.

The next day write over the base line.

In September extract seven of the 11 of her songs.

(The beats may be too on the nose.)

Before Christmas ask, “why?”

Tell the story.

Use your voice.

Poetry Found by Elizabeth Honan Amber May 2018

Listening

Before you tell your life what you intend to do with it, listen for what it intends to do with you. Before you tell your life what truths and values you have decided to live up to, let your life tell you what truths you embody, what values you represent.

-Quaker saying

I’ve been told most of my adult life by doctors, “You know your body best.” And I always stare back in horror thinking, “No I don’t, she’s an unpredictable kook with a mind of her own! Why do you think I’m here?”

I haven’t ever quite known what to make of her strange and annoying language of pain and anxiety, with tightness here and stiffness there. I try not to do things that will upset her, attempting to guess at how much I can ask, (get away with), on any given day. But that never goes super well.

My soul has been of little help in this battle of wills. She prefers getting lost, collecting leaves and decorating the house. I let her be for the most part, because I don’t understand her most of the time. On the occasions when I have sought her counsel about my body’s mysterious exhaustion she will usually just say something to the effect of, “oh, well what did you expect?”

I hate this answer and my heart burns with indignation. I am not the oppressor I insist, I am the victim.

I wonder though if some of the tension that exists between my body and I stems from the fact that I bought into the myth that success is measured by what we can force our bodies to do. I thought you could just pick a goal to follow with “will and determination,” and make it happen.

In addition, I grew up believing various interpretations of the Bible that the heart is deceitful and the body is not to be trusted. Though I have been pushing back on that theory in the last 10 years or so, I have not gone so far as to actually listen to my unhealed body or my sensitive heart.

However, I’m beginning to see that the messages I internalized and the goals I picked were chosen without regard for the rest of my body, heart, or soul. My ego was doing all the talking. No matter how I presented my plans I did not have consensus. There was no part of my heart, soul or body that was on board with what I wanted. Rather than listening to their push back, I would just talk louder or end the argument.

Finally, last year during one long conversation, when they had me cornered in a hospital room, I was trying to convince them, again, about going to back to college:

“Look,” I said, “I love history, I love listening to lectures, I’m drawn to gender studies and social issues and I want to be a part of those conversations. I want to do big things and be taken seriously. I want use my gifts and interests in writing and teaching. All these things clearly add up to pursuing a degree. I don’t see what else they could be, this is the only path that combines these in a respectable and understandable way.”

They all just stared back at me as if to say, are you done yet? My soul finally spoke up and asked, “what did you feel in your body when you just said all those things?”

I went quiet for a long time.

My insides were preemptively feeling the constriction of a rigorous and demanding school schedule in which there would be no time to do anything beyond the required assignments and taking care of my body the way it needed. I realized then that when I thought about four years of school my whole body felt dread.

But if I told them that then everything would change. The vision board I had made with images of recognition and accomplishment would be swept away and I would be staring at a blank canvas, again, in a hospital room.

We all sat quietly for a long time, the space softening around us. We didn’t have anywhere else we needed to be. Eventually I turned back to my body and asked what else she felt about our future, what did she dread not being able to do?

What I heard changed everything. My body asked me to notice my hands and feel what they craved. Almost immediately I felt their desire for a craft, for work. They wanted to feel wood, paint and glue, and they wanted to be dirty 63% of every week. My other limbs excitedly started chiming in. My legs wanted movement and flowy skirts, my lungs wanted outside air and the smell of fresh salty wind. On and on my body went with so many needs and ideas.

What I had feared was happening, there was so much wanting being voiced that I was overwhelmed. “How are we going to do it all?” I pleaded. “I don’t know how to carry all of this!” My heart, came close and touched my shoulder gently, then said in a soft clear voice, “This isn’t about doing, it’s about being. Who are we now, and who have we always been?”

The sob in my throat, that had been stuck there for so long, loosened and I allowed myself to feel all the grief of deconstruction. The dam had burst and the waters of desire were rushing over me with all their pent up force. I would either be consumed or I would be freed.

I sat for a long while as everything pooled around me and slowly began to settle. After a a little time I realized that the intensity had ebbed and I could feel the gentle laps of longing, like a bubbling brook finding her way back to the river. I had not drowned. I had allowed what was to pass through, like so many leaves floating down the stream.

Eventually I could see patterns emerge and colors distinguishing themselves in the newly opened space. Images of me absorbed in a painting, sitting in tundra, cooking outside, laughing with friends, and collecting bits of nature and unused furniture were playing in succession, like an old home movie, across my imagination.

“What do you see?” she asked. I couldn’t tell who was talking, but I relaxed at her inviting voice.

Trying to be as honest as I could, I said, “I see someone who is free to be whatever they are. Someone more like an artist than just a writer. A woman who loves everything, including herself, and has a million ideas, all the time.”

When I said the word “artist” every part of me perked up. Without even trying I began remembering all the times people had told me I was an artist, and I how I had attempted to convince them otherwise.

I had to sit with the memories and the word “artist” for a while. Eventually we, my heart, soul and body, started to talk it through. We discussed at length the philosophical limitations of the word, but also the possibilities of what (continuing to) living as an artist could mean. In the end we all agreed that going forward we would in fact refer to our self as an Artist. For right now this means that I follow creative impulses, and make things without judging it as “good” or “bad.” Above all I must practice learning new skills and avoid boxes, labels and other restrictive clothing.

I’m continually amazed at the synchronicity of spiritual and physical events. It’s like they are connected! (She said with a wry smile). I may be waiting for new lungs and liver, but the work of transplant is starting now. Old ways of thinking are being rooted out and replaced with new rhythms, habits and words. I’m building my muscles of intuition and learning to stay grounded in my body and the moment.

I don’t know that I would be able to learn these lessons quite as well at home, where I am too easily distracted being a wife, friend and “nice person.” Learning to own my desires, follow curiosity and take my cravings seriously is requiring all of me. I’ve been gifted a sabbatical, a space to get strong and practice my process. The unique tempo of being on “The List” ensures that I actually do the work. Because no matter how enlightened I may be I will always need a deadline.

Thanks be to God!

Ready

Now that I am officially on the double lung and liver transplant lists, (as April 13th), I realize I have to put the final touches on making sure I’m ready for The Call. After months of preparation, list making and attempting to put together a cohesive filing system, I am left with a nagging suspicion that I will never be quite ready for what is ahead.

There are, of course, multiple levels of “ready” for this situation. There is –

logistics – how I will get to the hospital, who will be with me…
paperwork – power of attorney, advanced directives, insurance, passwords…
family and friends – making sure people have each other’s numbers and know who to call…
What I will need at the hospital – rosary beads, headphones, a “do not disturb” sign, Kleenex (with lotion,) lip balm, my tea…?

The list goes on, or so it feels.

Really, I just want the list to be long. Like, whatever the equivalent is to tying your shoes very slowly when you have somewhere you don’t want to go… that’s how I am with these dang lists. But I keep hoping that if I’m not ready then maybe that can mean this isn’t happening yet…

But it is happening. I am here at the part where I can get The Call at anytime. I have to face that reality. But how? This question implies that there is a rational answer.

For all the preparation I’ve done on the physical level, I don’t feel ready, and there is the rub. I keep looking for the right combination of check lists, reminders and instructions to conjure the feeling of readiness. I want all this to be managed rationally and calmly.

It is the contingencies, the unknowns, and what is beyond the horizon of lists that has me doubting myself.

Bruce Kramer, in his book “We Know How This Ends,” names this tension best:

“How shall we grow into the demands of what is beyond us?”

How indeed.

In our culture of safety and certainties we don’t like mystery. We are suspicious of the unknown, as if it’s a thing waiting to eat us. I feel like I should be able to wrestle the complexity of this moment into a clear sense of focus. That expectation is not uncommon. However, I have learned, time and again, that it is neither realistic or imaginative to expect maturity to be the equivalent of a perfect spreadsheet.

I came across this quote by the poet John Keats, (taken from the book A Field Guide to Getting Lost by Rebecca Solnit), in which he relates stumbling into a similar revelation…

…”and several things dovetailed in my mind, and at once it struck me what quality went to form a Man of Achievement, especially in Literature…I mean Negative Capability, that is, when a man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.”

In other words, facts and reason only get you so far, and represent only part of the picture. Being able to live with mystery and uncertainty, beyond the bounds of what making lists can offer, is also a necessary muscle and skill to hone.

I don’t want to ramp up the tension so tight that I break. I don’t want to live in fear that I’m about to fail. Rather, like a stringed instrument, tuned with tension, I want to learn to play music and change the conversation.

I must accept that the inner work of “readiness,” will not be in solely focusing on the facts and figures of what I’m carrying, rather I need to pay attention to how I’m holding all the realities and mysteries at play.

This knowledge does not change the knot in my chest that won’t seem to ease. I’ve spent the better part of the day trying to coax it loose with painting, a trip to the beach, Facebook and now writing.

As I sit here, mentally grasping for an antidote to the pressure in my heart, my mother’s coaching wisdom rises to the surface of my consciousness –

“Elizabeth, focus on the fundamentals, stay loose, trust your body. Now go have fun.”

Once again, I know she is right.

Awareness

Hope is a tricky bastard

It feeds on dreams

Beware of it

Keeping the wrong parts of you alive

Lookout for becoming

smaller

weaker

malnourished

36

Today is my birthday and as I sit here doing a breathing treatment I wanted to tell you about the last few days.

I started last week with a lot of anxiety and a little premature frustration. I didn’t know what I wanted to do for my birthday.

After days with no real headway into any kind of answer I finally had to ask myself Danielle LaPort’s question – “how did I want to feel?”

As best as I could admit, I wanted to feel strong, seen and like I am ready to face the next year.

And what would make me feel that way?

I wanted the answer to be, a big party and everyone to shower me with gifts. And as lovely as that would be, I knew it wouldn’t get at the deeper craving.

So after talking and crying my way through a conversation with my husband on Wednesday, he very gently made the suggestion that perhaps what I needed was to take myself away for the weekend, alone. I knew in my bones that he was exactly right, even as I found myself saying “I couldn’t possibly…”

There is so much tension around this encouragement of aloneness. It feels selfish, and counterintuitive. Logically how does one feel seen if no one is there to see you? How do you feel strong if no one around you will be weaker? How do you send yourself into a new season if no one is there to toast to you?

There aren’t good roadmaps for this kind of detour and very few stories from the field. Perhaps that is because so few of us admit to feeling empty or we think suffering will cure us. Or maybe we are afraid to be alone with ourselves.

Whatever the reason it’s a worthy question.

I’m so happy to be able to tell you I took the encouragement and I went away. I saw a window of opportunity and I knew if I didn’t jump I would regret it.

I literally decided on Thursday that I would go. I left that same night. I gave myself an hour to pack, which was helpful so I didn’t overthink it.

I was given a recommendation for a place to stay in Seward. I called and booked the only cabin they had which was right on the water but no amenities: so no running water or heat, just a wood stove, electricity and a mattress. I was doing this!

I left at 8pm and got there at 11pm.

When I arrived it was COLD, but I could hear the waves lapping and see the stars. I knew I had done the right thing.

After getting settled as best I could in the cabin, which was as bare and cozy as it could be, I finally fell asleep under all the blankets and clothes I had brought. I relished my first test of courage.

Then I woke up to this:

!!!!

I spent the day walking, reading, sunbathing, and thinking. I took my time. I didn’t check the clock or hold myself to any austerity measures. I just tried to be kind but also to challenge myself to dig into some deeper questions that had be tugging at me. I didn’t expect to come away with any conclusions, rather just to have a better grasp of the conversations that my soul and spirit keep trying to have with me.

The day was magical. The wind stayed calm, the sun was warm and I found the best food (in a warm restaurant!). I also found a perfect place called Resurrect Art Coffee shop and gallery, which is in an old style church. Can you get more perfect? I doubt it. I bought art, drank tea and soaked in the view.

For my first solo trip it was an absolute success. I was refreshed and revitalized. I found my peace and felt my strength. Most of all I was able to give myself what I desperately needed: a break.

Hello to pre transplant.

I was so worried the weather would be poor, that the rain would pound and I wouldn’t be able to stay dry. I found myself rubbing my right wrist with my left hand and looking into a distance that the wall in front of me could not reveal.

What would happen when they stuck a tube up my nose? What did a heart cath procedure feel like? How much numbing medication would be available? Was general anesthesia an option for any of this?

What would the “lung transplant class” actually teach me? Could I play hooky? What would I do with my hands while I listened? At what point during the next two weeks of tests would I have an emotional break down? What if I got sick?!

The clouds of worry kept getting darker the closer to Sunday and my flight to Seattle became. I found myself more worried it would turn into a lightning storm setting fire to unknown parts of me, than I was about the fact that I was being evaluated for a double lung and liver transplant.

Anxiety wreaks havoc on my imagination, I know this. I knew this. I did my best to mother myself before hand – responding to each internal outburst of worry with a deep sigh and, “you’ll be fine,” but also trying to hide my worry from my anxiety.

How do I reconcile the manic, the depressive, the anxious and the adult parts of myself? Knowing is only half the battle. The other is believing yourself.

I did my best to set up way stations of rest throughout the two weeks I would be gone. I flew my mom in half way through, in case of an emotional breakdown. I made sure to stay with family, and to not over-schedule myself. At the last minute I remembered to pack good food for my mind and soul.

A huge boon was Pádraig Ó Tuama’s meditation of saying hello to whatever you meet. I had his book, “In the Shelter” with me and it helped keep me grounded to each place and feeling I was in.

His words prompted me to say hello to each new feeling and place. Hello to the knot rising in my chest and the cloud brewing in my head. Hello to the discomfort and the waiting. Hello to the funny jokes and delicious food. Hello to the knowing and to all the things still unknown. Hello.

The cadence of greeting changed the experience for me in a revolutionary way. All of a sudden I realized the choice had been to engage or not, to turn toward the experience with curiosity rather than letting my anxious imagination dictate the terms.

In many ways it felt like I was a child again and one of my parents was telling me to acknowledge a guest. Pay attention they would say, don’t be rude. Just stop and say hello.

I am always afraid I will be on the hook for something if I say hello or acknowledge that I have seen or heard. I’m terrified that I can only do everything or nothing. “Everything” in my mind is all the hypothetical situations I can imagine may happen. I create escape routes and try to predict how I will feel in each situation.

To justify this type of mental exercise I tell myself I’m “preparing,” but really, for me, I’m saying yes to burn out. It’s the quickest way to use up all my energy before anything has happened. I’m slowly getting better at catching and reminding myself to simply plan for what I know I will always need: a nourishing book (or podcast), good company, an easy schedule and food.

Engagement, as opposed to “preparing,” I’m finding, is simply looking up and saying hello without having to know “everything.” I would have missed the beauty and enjoyment of the last two weeks if I had insisted they needed to be hard. The truth is, I didn’t quite know what they would be. I knew, however, if I let the gloom of the clouds I was feeling write the story off before it happened, then I would have missed it. Each day was its own experience, and more often than not, the sun broke through the clouds and all went well.

Invitation

This is an essay I wrote back in 2015. I wanted to share it here.

The Invitation

My antique dining table beckons, “Come, sit here.” I hesitate, unsure of the gesture. The gold trim on its otherwise rustic frame always catches my eye, but I tend to pretend I don’t notice and keep shuffling by. Today, however its soft yet determined invitation catches my attention. “Come sit, bring your tea. Take your time.” I want to say, yes, but… Sitting at tables is where lectures happen, and you think of all the things you should be doing that do not involve sitting. I have plenty on my list already without coming up with more. Staying busy and following lists has become my normal. Leisurely sitting at a table pretending I have time to enjoy myself is something I used to do, but I haven’t in a long, long time. Besides, what would she say? My inner taskmaster is a harsh maiden. Somewhere along the way I think someone told her that time was running out, and she took it a little too much to heart.

I walk on toward the kitchen, stalling, thinking. The kettle is hissing and the steam sends up its message of surrender. The water is ready. I look up to my tea cups and pause, hand in the air, about to reach for my everyday mug. Gently, ever so quietly, a tea cup behind me, the fancy blue one with the saucer, suggests I choose it instead. I stop and turn. The table seems to have been talking with my china. In spite of myself an image begins to form of what sitting at the table could actually encompass: wandering thoughts, words on a page, my pen, musings about something not on my list. Being still, taking my time, enjoying my morning.

It has been a while since I sat at the table, since I took the time to be still. The tension begins to rise in my chest. In spite of the invitation from the table, the inner maiden is sounding particularly stern this morning. She reminds me I don’t have time to eat, let alone sit. I am already late. I slept too long. The day must be seized. The laundry, the dishes, the floors; oh my, the floors! I almost look down but stop myself. Discipline finds me at the oddest moments.

I look instead at the delicate blue cup. I think of the table. In a rare moment of conviction I decide to accept the invitation. The floors can wait. The maiden goes silent with shock. Perhaps she fainted. No doubt she will be back.

My mind drifts to a time when I had regular tea parties. Charlie, my stuffed black bear, loved tea parties. We would sit for hours, pouring the “tea” and eating the “cake.” Stern ladies who mentioned the time were never invited. And honestly, as I recall, Time itself never objected, in fact, she regularly joined the conversation and particularly liked the scones.

The invitation to sit leads to an inspired whim, breakfast! Toast and poached eggs, I think. As I set the table, I realize something else is missing, my book would look lovely propped up in front of my plate. I must invite my journal and pen, you know, because that is what Jane Austen would do. I make sure I have my pitcher of cream, and warm up the butter. I find myself getting caught up in the details I forgot I loved. Simple beauty, the extravagance of stepping outside of my rational self, of giving that stern lady the morning off. As the table begins to fill with all my favorite morning delights, I feel time expand and smile in my chest.

At last I sit. I pick up my tea and cradle it in my palms. I breathe in deeply. I glance at my journal and then stare out the window. I feel my body relax, beginning to inhabit itself again. I didn’t realize I had been away. Where had I gone? Had it been since Charlie and those tea parties of old? Surely not. I think I just got tired and that stern lady seemed so capable, so sure of things. I wanted to be her. I wanted what I thought she could give me, a place, order, control. But, as I sit here, I think I see what it cost me, time and the luxury of being in one place. The space to feel my body, and delight in my thoughts, but most of all to be available to sit at my table and see who shows up.

I am so glad I said yes to the invitation. I would have missed having tea with myself.