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 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


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.


Pádraig Ó Tuama

PÁDRAIG Ó TUAMA is a theologian and writer from Northern Ireland. I first came across his work on the podcast On Being. He has a community in Belfast that helped bring peace to the region.

For me, his thoughts on welcoming the stranger are revolutionary because he points the light back on oneself. I am the stranger, the parts of me that I don’t understand, that I reject, and that I struggle to love. All of me I must welcome.

Here is a short reading from his book In the Shelter for you to listen to. Every time I hear it I am heartened and find myself greeting the day with a little more grace.

Click Here to Listen


by Elizabeth Honan Amber

The knot rises in my chest
My heart plummets
Like an elevator in free fall
I try to move away from the action
At all of these feelings —

A friend comes to visit
intending to give comfort.
They see my emotions lathered up and agitated,
My body a knot of tension.

Unsure what to do
They sit and take my hand.
‘Remember,’ They begin,
‘God is in control.’
Don’t worry,’ they continue,   
Everything will work out.’
After a while they finally say,
‘It could be so much worse,
You should be grateful.’

My shoulders tighten and I wince.
My mind rebels at the implied ease
From pain to joy.
I know it is right to give thanks and praise,
And yet…

I have been in the presence of Gratefulness.
She has come to me in the unlooked for moments,
Like the sun breaking through the clouds,
Warm and embracing.
Like a crashing wave
Spraying me whole again.

Her presence feels
Like a passionate kiss
Rocking me to my core
Leaving me speechless,
And knowing something I almost forgot.

She is a visitation,
A sacred moment shared only
By her and the one she seeks.
An angel of sorts.

The temptation to summon her,
To reduce her presence to mere trick of the imagination
Incanting, ‘Thank you God I am not…’
Is to diminish the sacredness of thanksgiving.

She travels through sunsets and stars,
Not through the public transit of advice.
To compare your burden to others
Does not ground you to the path you are called to.

To feel grateful is a fullness,
A lightness of being
Connecting you to the Source
And to This moment.

Another friend comes to visit.
They sit and they listen,
Saying ‘I’m so sorry.’
And, ‘It’s okay to feel these things.’
After a while they gently invite me to be here, now,
Making room for me to ask, ‘What is here?’
As we sit together they reach out, take my hand and whisper,
‘No matter what, you are not alone.’

I pull this reassurance into my heart,
My body relaxes and my mind slows,
Like a horse released from a frantic pace.
I take in this moment and realize,
I am seen.
And I am so grateful.


“S’awful to grow up,” said Velvet

“Nope,” said Mrs. Brown

“Why isn’t it?”

“Things come suitable to the time,” said Mrs. Brown.

… “Childbirth,…an being in love. An’ death. You can’t know ’em till you come to ’em. No use guessing and dreading. You kin call it pain… But what’s pain? Depends on who you are an’ how you take it. … Don’t dread nothin’, Velvet.”  – National Velvet by Enid Bagnold

I keep reading this scene in National Velvet over and over. This intimate moment between Velvet and her mother resonates deeply. Velvet is looking into her future, and is wondering if all it holds is bound up in corsets and childbirth. From her vantage point of 14 years old, it all looks so bleak. She tells her mother how much she likes herself now and doesn’t want to grow up.

I know exactly how she feels.

My own inner Velvet Brown is panicking at my future, at what I imagine having a double lung and liver transplant will require of me. I know I can do it, I’m not worried about that. I’m worried about my poor spirit; the wild in me that already has to be bridled by adult responsibility along with the added strain of chronic illness. But I’ve more or less figured out how to do it.

Having everything about to change again, and take on an unknown future of new rules, new medications, new risks…. It is a lot to fathom. Like a girl staring at grown women with babies and boobs, wondering – “how in the world do I go from this, to that?”, I am undone with dread.

The scene with Velvet and her mother is most poignant because it isn’t so much about a mother telling her daughter to want the responsibilities of womanhood, but rather it is a mother understanding the struggle of holding two conflicting realities in your body. You want what your heart wants, and you realize that your heart’s desires are going to change. You will dream new dreams. But for now Mrs. Brown can lay a standard for the journey – don’t dread. Meet those new dreams when they come. To greet them and take them into your heart is not a disloyal act to the dreams you hold in your heart now. Can we want something new? What does that say about the truth and fire of what we have today? This is the tension.

It’s easy to get stuck on dreams. I know this all too well. It took a fire, literally, to pry out some of the ones that needed to be let go of in my 20’s. It was excruciating. To not have children of my own, to not have a dependable body, to not have exactly what I thought I ought to have. It took a long while to grieve.

Reading Mrs. Brown’s wise words feels like coming up upon the ocean and hearing its distant rhythm against the din of traffic and sea gulls. The part of me that is salt and water calms at it’s presence and I remember, don’t dread, just let it be. I am holding on to this centering place.

I am not a little girl anymore, I can see better from my 35 year old self than I could from age 12.  I am still right to be worried about my spirit, to worry about the wild in me. But I continue to be naive to think that she, my spirit, is so easily broken by rules and statistics. I cannot look too far into the future imagining a body I don’t have yet. I don’t know what it will be like to breathe with someone else’s lungs. I cannot keep dreading the process and wondering if I will still be myself when I wake up. I have to keep remembering, “the map is not the territory, and the menu is not the meal.” Imagining is not the same as living.

In a way, I’ve done this before: I was a girl once and now I’m a woman. I used to think the dreams of my youth would last forever. As much as I loved dreaming those glorious and daring dreams, I’m glad I made room for new passions. It is comforting that I am part water and salt, and like the ocean I have to allow the tide to work at my dreams, letting them to become something new.