Fever or Forgotten Wings

Lessons from PTSD & Post Traumatic Growth

Rose has her arms wrapped tightly around Heidi’s waist as the merry-go-round spins in a blurry circle. They tip their heads back and the flower crowns we made blow off in the wind. Their laughter erupts in hyperventilated shrieks as Nina pushes them faster and faster. 

Knowing they are safe and occupied for a little while, I walk a few feet away and lie down in the patch of purple clover we used for the crowns. I normally dislike playgrounds but this one in our little village on the Danube is pretty and quiet. There under the maple tree, where the ground slopes gently to meet the sandy shore of the river, I tilt my head back and look up at the sky. It makes my heart ache how this slice of Austrian sky can be the same cornflower-blue as the September skies I loved as a young girl in Ohio, how the same sky can hold a lifetime of daydreams. It’s also, impossibly, the same blue sky I looked up to last September as I tried to comprehend tumor biopsy results.

The dreams of my youth feel far from reach today. I can’t say why but everything is getting under my skin - the clear skies, the warm wind, the high energy of the kids. Even their laughter, their beautiful, joyful laughter, makes me feel ill at ease. The soft light through the branches causes my body to hurt, like fever aches from the flu. Should I still feel this way, a year later? I wonder if my wires are permanently crossed.

There are just two clouds above me, little puffy rectangles that form the shape of an “equal” sign. I want to interpret their meaning but give up and close my eyes. Before I can take another breath, tears flow down my cheeks into my ears and the girls’ distant laughter muffles. Something is pushing on the tender bruise of my heart. It is as if I have accidentally scratched open a scab that had almost healed.

It occurs to me that I might have PTSD.

**

Since embarking on this writing project, I made a pact with - I’m not sure who - God? The Muse? Myself? - that I would set my alarm for 5:30am every day and go downstairs to write for an hour before the kids wake up. My hope is that if I can protect one hour a day for this sacred work, at a minimum, I’ll be sending a sign of commitment to the creativity gods. 

I’ve read so many books on creativity from well-known experts in their fields (famous authors, successful musicians, painters - the list goes on ). One common thread is that the muse only stays with you if you are reliable, if you show up regularly, and on time. This causes me to panic, as motherhood has made me incredibly reliable for three specific beings and woefully unreliable for nearly everything else. Setting my alarm is the only act of dedicated reliability I can offer, even if I end up snoozing it half the time.

I’ve also become obsessed with making sure the creative flow doesn’t stop because of my bad writing habits (interrupting the editing of a story to move clothes from the washer to the dryer, for example). I beg The Muse to accept my chaotic ways and my creative ADD. Can you work with this mess? I’m doing my best! I shout in the damp cellar air as I shove the wet pajamas into the dryer. 

On perfect days, I manage to make it to the desk by 5:30am with a hot coffee steaming on the Frida Kahlo coaster next to my computer. This is me punching my timecard and clocking in. This is me putting an apple on the teacher’s desk.

Other days, I have to skip the alarm because there’s a sleeping child next to me who I’m desperate not to wake. Later, I’ll put on two hours of Bluey in the evening so I can write feverishly as dinner simmers (or burns, depending on the day). On especially crazy days, all I can manage is to jot down a few notes as I walk the dog in the dark. Phrases will come to me like leaves falling from trees, or sparrows flying by. I know that if I don’t see them and acknowledge them, they will silently pass me on their way to someone else.

I also notice that things possess me strangely now. I listen to the same song on repeat 100 times, I read the same two books over and over. There is something about the repetition of consuming specific works of art that feels like it’s priming my own system for work. I’ve become even more introverted than before, limiting most social activities and gatherings outside the house. Most evenings, I need to go to bed by 9pm, exhausted by my swirling internal world and the upcoming alarm.

On rare days, entire stories arrive intact. I type them from start to finish in one sitting. When I reread them, I barely remember writing the words before me. I have never experienced this before in all my years of writing.

It occurs to me that something else is happening here too.

**

I recently learned about Post Traumatic Growth Syndrome in Suleika Jaouad’s breathtaking book Between Two Kingdoms. Until this week, I'd never heard of it before. The National Institute of Health defines Post Traumatic Growth as “positive psychological changes experienced as a result of the struggle with trauma or highly challenging situations.”

When I read this, all the lights turned on - this explains my behavior in recent months. I have had this feeling that I am a kind of supernova - a star that has exploded and is soaring through the sky on fire, eventually destined to burn out but not before it’s lit up everything in its path (for better or for worse).

This also explains the angst I feel, the excruciating pain of wanting to be in two places at the same time, wanting to be two people at the same time. I am equally and impossibly obligated to both the mother and creator in me - a frenetic little worker bee, feverishly making sweet honey for two hives with opposing queens.

I drain the bathtub, dry off Heidi’s soft little body and glance at the minute-hand of my watch. My mind is already on to the next thing on the list: the dog needs walking before bed, I forgot to feed the cats, the copper pots in the sink need scrubbing. There’s so much to do that’s not the thing I also need to do. I haven’t written today and it feels like I’ve forgotten to eat. 

Later in the evening, with Heidi in bed and my hands deep in the sudsy dish water, it occurs to me that not one of my beloved creativity gurus are mothers. And not one of them is a cancer survivor.

I realize that I need to make my own rules.

But still - What if my star fire goes out, the way a match sometimes doesn’t catch but just burns sulfuric smoke?

So I feed the cats but ignore the copper pots.

**

This month - September - marks the year anniversary of my diagnosis.

The nurse’s hands tremble as he inserts the needle into my arm. I’m not sure if he’s nervous or if he’s just had too much caffeine before breakfast. My vein is stubborn as usual - it’s 6am and I’m dehydrated, I can’t eat or drink before these early morning blood draws.  For a few seconds, nothing comes out and he has to poke around a little before the stream of blood finally begins to flow. I can feel my facial muscles release from wincing as I watch the red liquid flow through the thin tube into the vile with my name printed on it. 

“Are we doing the usual panel today?” he asks, a little more relaxed now.

“Yep, the usual,” I say. “The hormones and tumor markers are the most important. Do you have any liver health markers? My oncologist wants those too.”

“Oh yes, liver markers we have!” It makes me happy that he incorrectly inverts the order of his English verbs the same way I do in German.

“How about I just give you the full panel, the Bic Mac Value Menu?” he says and my stomach growls, as if on cue. We both laugh. It’s hard to crack jokes in a language that’s not your mother tongue and I’m glad for this early-morning laughter.

I have my blood drawn every month as part of my ongoing post-cancer monitoring. There are certain things my medical team is specifically looking for - tumor markers, hormone levels, vitamin and mineral deficiencies and white and red blood cell count. When the results come back, there’s a little grid next to each measurement. If your dot is somewhere near the middle, you can consider yourself normal. Otherwise, it’s flagged and marked in bold.

I strangely look forward to these monthly blood draws - they reassure me I’m ok, at least by this particular way of measuring ok-ness. Those little centered black dots tell me that the program I’m on is working.

But this time, for the fourth draw in a row, my hormone levels are marked in bold. They are way out of whack, exponentially higher than they should be. This is especially bad for the type of breast cancer that I had - hormone receptor positive. If I want to prevent this cancer from coming back, I need to make sure it doesn’t have anything to feed on in my body. Unfortunately, today’s results show that there’s a feast waiting for it at the kitchen table if it comes knocking again.

I’ve done everything I can to levelize my system, from totally revamping my diet to embarking on the winding road of getting and staying sober. It’s felt like a lot of sacrifice with no results and I’m discouraged. But there’s no time for emotion. My oncologist tells me that we need to make a decision on how to move forward with the facts we have at hand: I can go on a new drug with loads of new side effects or I can have another surgery to have my ovaries removed. Both have their own set of challenges. I’m tired of making decisions.

Today, cancer still feels like an angry ex-boyfriend who still has a key to my place.

**

The phrase “it’s up to me” appears over and over in my thoughts this week, like an answer to a riddle.

It’s up to me to restore my own equilibrium and tend to whatever version of PTSD I am experiencing -the clouds wrote me that message in the cornflower-blue sky. Yesterday, I canceled all appointments, put on Season One of Felicity, made chai tea and tucked under blankets with the cats. In the five blessed hours I had to myself before the kids needed to be picked up, I managed to restore my balance. This is essential work, for me and for them.

It’s up to me to figure out what it takes to feel well in the face of my recent memories and the reality of my health. Feeling “well” doesn’t necessarily mean “feeling good” or even being free from illness or pain. It means living a life that is congruent with my soul’s needs at this time in my life. The second I stop listening to these needs, my equilibrium shifts and my sense of wellness disappears instantly.

It’s up to me to make the rules on how I show up to this work and how I make this offering to the world. The 5:30am alarm is great as long as it’s working. When it stops working, I know Bluey will be there to rescue me. The only rules I have to follow are my own (and not even those).

More than anything, in this ongoing act of recovery, it’s up to me to decide:

Do I want to live in trauma or live in growth? 

Both coexist inside my body but only one will propel me forward.

“Is it going to be a wasteland or is it going to be a grail quest?” - Joseph Campbell

**

Back at the playground, the wind kicks up as the sun lowers. I lift my head from the clover patch only to have sand blown in my eyes. The girls run toward me as I stand up. Nina, who is suddenly so perceptive at nearly-nine years old, sees that I have been crying. She wraps her arms around my waist and looks up at me. “I love you so much,” she says. “So. Much.” She inflects her words the same way I do when I say them to her. 

“Let’s go home,” Rose says. She takes my hand and smiles at me with an expression that straddles that of a child and a mother.

“Yes, let’s go home,” I say softly. 

It occurs to me in the car that I am loved by these three girls of mine in both trauma and in growth. I’m loved by them no matter where I fall on the spectrum of recovery. I’m loved for simply being me, their mother, the only star they’ve ever followed. 

There’s no rush to get somewhere else. We’re here in this middle place, growing together.

I cry warm, silent tears all the way home at that thought.

Poetry

And it was at that age... Poetry arrived
in search of me. I don’t know, I don’t know where
it came from, from winter or a river.
I don’t know how or when,
no, they were not voices, they were not
words, nor silence,
but from a street I was summoned,
from the branches of night,
abruptly from the others,
among violent fires
or returning alone,
there I was without a face
and it touched me.

I did not know what to say, my mouth
had no way
with names
my eyes were blind,
and something started in my soul,
fever or forgotten wings,
and I made my own way,
deciphering
that fire
and I wrote the first faint line,
faint, without substance, pure
nonsense,
pure wisdom
of someone who knows nothing,
and suddenly I saw
the heavens
unfastened
and open,
planets,
palpitating planations,
shadow perforated,
riddled
with arrows, fire and flowers,
the winding night, the universe.

And I, infinitesimal being,
drunk with the great starry
void,
likeness, image of
mystery,
I felt myself a pure part
of the abyss,
I wheeled with the stars,
my heart broke free on the open sky.”

― Pablo Neruda, Selected Poems