Luke’s Story–Thoracic Outlet Syndrome

Luke and I traveled to St. Louis, MO last month for what we hope to be the culmination of a four-year health journey for Luke. We traveled there for Luke to have surgery for what was finally diagnosed as Thoracic Outlet Syndrome. Luke will write of this experience in his own words. 

For those of you who don’t know Luke, introduce you to him. Luke was born with a smile on his face that never stopped, always in a good mood, always positive. His strawberry hair and smile sparkled in the sun, whether the sun was out or not. Luke’s undiagnosed asthma had the two of us in the Emergency Room every month for two years, his ages one -three. His translucent skin slowly took on color as he took in oxygen and he came out of the semi-conscious state that these episodes brought on. He never complained. This kid is tough, tough, tough. 

Generous of spirit, Luke loved books, reading, exercise, and sports. When people asked me how Luke was doing in college, I said, “That kid will thrive anywhere. It’s just who he is.”

Luke on Mother’s Day, 2017

 

2016

 

Finish line of marathon, 2016

Luke tells his story in his own words:

“Hi everyone! Thanks for taking a minute to read my story. I apologize if it’s a little shaky. I’m writing left-handed, while recovering from surgery. Don’t worry, I still have my right hand; my arm is just sore.

Like Mom said, this surgery was a long time coming. If you’ve met me over the past four years, you’ll know I’ve been struggling with a chronic and mysterious pain that doctors, until recently, were completely unable to diagnose.

The U of A has a wonderful Recreation Center, and I made a point to lift weights a few times a week. While I was a sophomore, I was bench-pressing the same weight that I always bench-pressed, when something in the right side of my chest gave and tore. I racked the weight, left the gym, and scheduled a doctor’s appointment. There, I was assured the issue was a minor shoulder strain that would heal on its own with time.

Long story short, it didn’t. I spent most of that semester unable to open doors or lift my arm above my head, waiting for the injury to heal. Every time I visited a doctor, I was told that with rest and time the injury would heal, and that I was really too young to be in this kind of pain anyways. That was a phrase I heard a lot “You’re really too young to be having this kind of issue.”

2018

Years passed and the pain evolved, it went from being a muscular issue rooted deep in my chest to a burning pain that radiated up the entire right side of my neck and into my trapezoid muscles. It was motion-induced, which is to say that the more things I wanted or needed to do, the more pain I would be in by the end of the day. Activities that brought me pain included walking, sitting, lifting things, looking to my right, and just talking with people.

At this point, we were desperately looking for a doctor with an answer. We had appointments with orthopedic surgeons, and multiple pain specialists.  We traveled to the Mayo Clinic for a consultation. Almost every visit began with, “You’re too young to feel this way,” and ended with an order for some kind of medical scan, MRI’s, X-rays, EMGs: all tests to try and see some muscular or nerve issue. They all came back negative. At this point, we were trying everything we could think of, multiple courses of physical therapy, chiropractic treatments, orthopedic massage, acupuncture, CBD, a series of nerve ablations, and on and on. You name it and I have probably done it.

2018

At this point, it had been about three years of searching for an answer, while spending every day in pain. I was both embittered at the medical profession, and hopeless that I would one day find an answer. I have my family, and Mom in particular, for never giving up on the hope of an answer.

Roughly sixth months ago, my doctors decided that all muscular issues were examined, we turned to the brain. Maybe, the theory went, my brain had just gotten used to firing off pain signals and hadn’t stopped, even after the muscle in my chest had healed. Working on this hypothesis, we met with a neurosurgeon here in Santa Fe.

I won’t disclose his name, but he was and a different kind of doctor than I was used to seeing, and I’d seen a lot. When I told him the story that I just told you, he didn’t say, “you’re too young to have this problem,” he said, “I’m sorry that you have this problem so young.” He ordered another scan, which was again, negative, and then said that in his opinion I couldn’t have anything but neurogenic Thoracic Outlet Syndrome (TOS), and that he would refer me to a specialist clinic in St Louis, MO.

By this point, I was used to doctors developing a pet diagnosis for my problem that ended up being wrong. My personal favorite was one doctor’s diagnosis of early-onset-right-side-of-neck arthritis, for which I received weeks of treatment with absolutely no benefit. I’d learned to treat their theories with a bit of suspicion.

So, I looked up Thoracic Outlet Syndrome and the clinic in St. Louis, MO. I may also have read the book about Thoracic Outlet Syndrome written by the lead surgeon, just to be sure. What I found was encouraging.

I fit the patient profile exactly. Most TOS patients are young, otherwise healthy individuals with chronic pain induced by most activity. Most TOS patients bounce around the medical system for two or three years before receiving their TOS diagnosis, as the criteria for diagnosis is, get this, multiple negative medical scans. All those MRI’s and X-rays paid off after all.

Leaving for St. Louis

So, what is TOS, I now wanted to know. Well, it’s a condition that develops when the brachial plexus nerves, which run from you fingertips, up your arm, through your pectoral muscles and up into your neck and shoulder blades, are compressed by some obstruction. The obstruction can be anything, well, three things really. Either a permanent muscle spasm in the pectorals or scalene(neck) muscles, an odd growth on the first rib, or scar tissue built up from a previous injury.

Long story short, I had a video call with the lead surgeon who diagnosed me with TOS and scheduled me for surgery in St. Louis. Mom and I took what turned out to be a really wonderful road trip to the hospital, and I had my operation on April 2, 2021.

During the operation, the surgeon found a large amount of scar tissue around my pec minor, which he removed. Hopefully, this was the mysterious cause of the problem: the thing we’ve been looking for all these years. I’m still in recovery at the moment, and so it’s hard to tell if the new pain from the surgery is covering up the old pain, and where I’ll be in three months, but I can say that the burning pain, at the moment, is gone.

So, the story isn’t over, but hopefully this is the last chapter and we’ll have more good news for you soon. Before I go I’d like thank Mom for being the driving force behind my recovery. I definitely would not have made it through this experience without your help, and the help of all our family and friends, that’s all for now, thanks for reading!”

 This is Dawn again. Amidst all, Luke and I had a magical time together. Along the way, we were able to spend time with my Aunt Elaine (Dad’s sister) and cousins, Brian and Brett.

We made the most of the trip and saw some of the sights of St. Louis between Luke’s pre-op appointment and the day of the surgery.

We took in the Gateway Arch, as well as the Botanical Gardens. We played a lot of chess, drank a lot of Tension Tamer Tea, and crushed it on the Harry Potter Trivia cards.

We loved the Botanical Gardens. It was a cold day. We entered the dome and I said to Luke, “This is exactly like Costa Rica.”

We quickly shed our coats and wandered for an hour, taking in each exquisite plant, flower, waterfall, Chihuly glass sculpture, lizard, all. Pure magic.

Surgery/Post-surgery

During his surgery, I escaped (somewhat) into my dissertation.

Clearly, we needed flowers!

When not in the hospital, I worked on my dissertation.

St. Louis bloomed with daffodils during our time there. My color, flower-loving heart and spirit drank them in. A dear friend in Vermont mentioned how her daffodils had poked their blooms up through the snow that week, “They’re so resilient.” These are the perfect flowers to be blooming during Luke’s surgery, I thought. Luke’s resiliency throughout this journey never ceases to leave me humbled and inspired.

Six days after surgery, Luke was discharged and we headed home.

One day Luke will write his full story. One day, I will write the mother’s story of this journey. For now, we focus on his healing and we hope.

When Wyatt was two-years-old, he called me ‘the Mommy Lady’ and I’ve been the Mommy Lady ever since. This Mommy Lady’s heart overflows with gratitude for a diagnosis at long-last and with optimism for what lies ahead for Luke.

Mostly, this Mommy Lady’s heart overflows with love for the brave soul I am fortunate enough to walk through this life with as my son. Here’s to the next chapter, Luke. I know you will write it well.

Quilts—Composing an Artful Life

#stepscrapquilts ©Stephanie Paterson

Mom and Steph

Quilts often come on the wings of angels.

I saw this photo made by my friend, Stephanie, and fell in love with the colors, composition, “Blessings,” print, textures, all. I commented on the gorgeous nature of the quilt, so impressed with how Stephanie had yet again created such a work of art, such beauty. Steph and Mom were colleagues at the university where they both worked. Here the two of them are at a pre-pandemic conference in Tucson. I love the striking nature of the patterns, how she pieces color combinations that radiate energy, life, peace, and a strong dose of whimsy! I love the independent strength of these quilts.

Raw materials. ©Stephanie Paterson

A few short weeks later, a beautifully wrapped package arrived. When I opened the wrapping, the quilt that I had admired spilled out. The card read, ‘Blessings’… This one is for you! Hope the New Year is full of good books + long runs + candlelit writing sessions. I remembered the beautiful quilt of reds and pinks that Stephanie made for Mom when she was going through chemotherapy. The past year had been a bit of a doozy for me. Stephanie makes quilts to gift. Please enjoy here some of the quilts she’s gifted and notes received over the years. A feast for the senses, the heart, the spirit: Steph Scrap Quilts: Quilt Notes. And, Steph’s treasure trove of books on quilting, creativity, writing, and teaching where she finds inspiration.

Our lives become rich and meaningful when we piece together the joys and sorrows, the questions and answers, the successes and failures, the longings, the people and experiences that have been the colors and shapes of our lives. Out of chaos we can sometimes make comforting patterns. Out of despair, beauty; out of longing, a new possibility; out of joy, visual radiance. —Rev. Laurie Bushbaum (With Sacred Threads: Quilting and the Spiritual Life, S. Towner-Larsen & B. Brewer Davis)

Steph’s work space ©Stephanie Paterson

Stephanie encouraged me to feel all that a handsewn quilt enfolds and shared Alice Walkers’ Everyday Use. Walker writes in the piece:

“Maggie can’t appreciate these quilts!” she said. “She’d probably be backward enough to put them to everyday use.”

“I reckon she would,” I said. “God knows I been saving ’em for long enough with nobody using ’em. I hope she will!”

Stephanie’s quilt

I mentioned how quilts often come on the wings of angels. A dear friend from high school, Gidget, gifted me this handsewn Frida Kahlo quilt. Lush life, colors, textures, and the very energy and essence of the amazing Frida flowed from the quilt throughout our house.

Feet what do I need you for, when I have wings to fly?—Frida Kahlo

Frida Kahlo quilt

What so inspire me about quilts are not only the colors, the textures, the vibrancy, the designs—it is the what goes into creating or gifting a quilt. Gifted quilts reflect the heart and spirit of the giver. When my kids were born, we received quilts cherished to this day. An Amish wedding quilt graces our home. Love lives through the fabric and all the quilter stitched into its making and through the spirit the giver.

Our well-worn copy of The Quiltmaker’s Gift (J. Brumbeau & G.de Marcken) tells the story of “a quiltmaker who kept a house in the blue misty mountains up high. Even the oldest great, great grandfather could not recall a time when she was not up there, sewing away day after day. The blues seemed to come from the deepest part of the ocean, the whites from the northernmost snows, the greens and purples from the abundant wildflowers, the reds, oranges, and pinks from the most wonderful sunsets.” People come from far-and-wide to buy a quilt. Her quilts will only be given to those in need.

It is a story of generosity, gifting, birds, and beauty.

“The Quiltmaker’s Gift,” artist Gail de Marcken (illustration potentially me in several decades)

Starry skies

I love to sew. I love the textures, colors, creativity, thinking about the composition, the meditative time where all else—including time—cease to exist. I had a limited clothing allowance growing up, but my parents bought all of the patterns and fabric I wanted. I spent days, weekends, and summers sewing alone and with girlfriends, lost in our creations and the rhythmic sounds of our sewing machines. Mom says that after I sewed, my family stepped on straight pins for days! Mom’s forever friend took her daughter and me to a place that sold fabric by the pound. Heaven. I look forward to weaving those textures and time into the fabric of my life again one day.

I made this Mexican Star quilt the summer I graduated from college.

Mexican Star Quilt

Later, I made quilts for babies and then their magic capes, dinosaur curtains, and fairy skirts. In the intervening years the fullness of raising kids, work, and writing leaves my sewing machine dusty. I started a small piece of a sunrise/sunset many years ago. Small felt do-able. The fabrics, beads, and threads still give me great joy. Even when bundled into my sewing basket. One day, one day.

Sunrise/sunset

My dad gave me this quilt made by a local quilter on the prairies. I love that this horse runs the walls and sky of my writing room. She brings the nighttime prairie skies and scents of summer grasses when they turn from green to flaxen with her.

Quilt from Daddy

In her piece Wintering Replenishes, Katherine May writes, “There are gaps in the mesh of the everyday world, and sometimes they open and you fall through them into Somewhere Else. And Somewhere Else runs at a different pace to the here and now, where everyone else carries on.”

When we fall through into Somewhere Else, quilts often catch us.

Sometimes those quilts are made and gifted by others. And sometimes, made and gifted to ourselves.

“Creativity calls for self-forgetting and deeper self-remembering (With Sacred Threads, S. Towner-Larsen & B. Brewer Davis).”

“…self-forgetting and deeper self-remembering” — yes, yes, and yes.

Mary Catherine Bateson (Composing a Life) describes life as an improvisatory art. Life as art. We piece together our lives much as quilters arrange and sew pieces of fabric into the beauty of the whole. I wish for us that we all find some form of art-making, to self-forget and self-remember in creative forms where time flows around us without our notice as we live in worlds of our own creations—worlds to gift others or to gift ourselves.

Flowers for my desk and spirit.

Green Space: The Release, the Repose

Artist Anna Valdez

Luke Wink-Moran

 

My son, Luke, just published his first piece here at Curiosity Shots. I did not read this essay until it was published. My oldest son, Wyatt, referred to me as ‘The Mommy Lady’ when he was two-years-old and the name stuck.

I am one very proud Mommy Lady to share Luke’s essay here.

by Luke Wink-Moran

When lockdown began, back in March, I decided that I wanted to try something new. I would begin every day with an outdoor walk. Outside, in the early morning air, the sky opening up above me, everything else faded away — which was good — because everything else was a lot: the coronavirus, the election, a national reckoning with race, the headlines got worse every day. It was only on my walks that I could forget everything for a while.

I started seeking out nature in other ways beyond my walks. I spent hours in the garden with my mom, watching honeybees circle our sunflowers while hummingbirds jousted over the sugar water feeders.

My sister and I scoured the internet for houseplants, and that spring, our rooms bloomed with life. The books I read led back to nature, too. “World of Wonders” by Aimee Nezhukumatathil filled my head with whale sharks and fireflies as I read in the predawn light.

Even when I played video games with my sister, we were still kind of outdoors — running around our digital island in Animal Crossing, catching butterflies, and shaking peaches from trees.

Not all that surprisingly, and perhaps as expected, we were not the only ones spending more time and energy in nature. In Britain, sales of plants, bulbs, seeds, saw sales increase 35% from 2019, some individual online plant stores saw an increase of 500%, going through a few months’ worth of supplies in a few weeks. Animal Crossing became the most popular Nintendo game of 2020. “World of Wonders,” became the Barnes & Noble book of the year and was ranked as of the top five New York Times nonfiction bestsellers. Nature, it seemed, was growing on people.

I wondered why, in a time of such extraordinary stress, people were turning to nature for comfort. As doom-scrolling became a national pastime and the world migrated to the internet, why were mountain trails and gardens becoming more popular? Why, with 53% percent of Americans reporting that coronavirus had negatively impacted their mental health, were houseplants flying off the shelves as fast as toilet paper?

“In The Garden” Print // Kim Illustration A Green Space

It turns out that nature has some serious mental health benefits. It can lead to greater happiness and life satisfaction, improve mood and memory, and reduce anxiety and stress. In fact, nature is so good for us that some doctors are writing “social prescriptions” recommending that patients spend more time outdoors or gardening for their health and wellbeing. An over-the-counter fix.

Gardening in particular has been studied for its mental health benefits. In her book “The Well-Gardened Mind ” Sue Stuart Smith suggests that gardening can be a state of play that we may find nowhere else in our adult lives.

Despite my own experience and contrary to popular beliefs, you don’t need a garden to benefit from green space. Most of the scientific literature indicates that you just need to be immersed in nature. Being immersed in nature has been shown to decrease depression scores and even reduce pain perception. As someone coming up on a three-year anniversary with a chronic injury, this is one aspect of nature that I absolutely adore.

Surpassing the physical, plants may even boost productivity and creativity — something that I personally have struggled with over lockdown. While studies conflict — some show a productivity boost, and some don’t — even employees who didn’t think that greenery made them more productive reported that plants made the office feel friendlier and cleaner.

I realized that I’ve been reaching out for green space for the last nine months. In the books I read, the games I played, and the places where I spent my time, the benefits of living around — and regularly interacting with — green space are clear to me. And while 2020 may have been when I truly discovered how good for you nature can be, I, for one, can’t imagine giving up my walks anytime soon.

*    *   *

Luke created for quarantine Mother’s Day, 2020.

 

 

Rhythms, Intentions, and A lot of Smoke

 

Chile wreath from the Santa Fe Farmer’s Market

New year, new energy, new beginnings. Seasonal rhythms invite reflections on the past and visions for the future. Sometimes the best-laid plans go awry. Case in point—2020. Even in light of what is beyond our control, the new year brings opportunity to muse, plan, and focus intention on what we’d like to create and bring into being in the new year. This year finds me reflecting on learnings from the past and visions for the future, conveying these in word and image in my journal. I love learning of others’ creative and planning processes and share mine here, in case you may share this passion.

Energy and Intention

I am fairly protective about where I spend my energy and intention when it is within the realm of my control. There’s so much beyond our control that demands our energy, so I take the time and energy within my control seriously. I try my best to focus the time and energy that I have on people and projects that I love and on what I want to create in my life.

Key for my own energy and intentions are two essential rhythms of life— 1) waking early for solitude with candlelight, journal, and coffee in the morning, and 2) running. These are two foundational rhythms that I’ve discovered make a world of difference for all else.

All Wink Women in our family received this cup for Christmas. I saw and knew we had to have.

Intentions for 2021

Scribbled in prose, webs, and lists in my journals with intentions for 2021 include:

Gift from Luke. Perfect.

Dissertation: 2020 began with me still immersed in my breast cancer journey. Then came the pandemic and all three 20-something kids moved home. Gifts and challenges came with all. Once I was on the other side of the health intensity, what truly scared me was that between the breast cancer, the pandemic full house, and a overflowing work life due all happening in the field of education because of the pandemic, I found myself with no emotional energy or space for my dissertation.

None.

I know what can happen here—this is how people do not finish. The thought of this scared me. So, in May, I decided that come-what-may I needed to throw myself back into the PhD journey. I sat down with my family to tell them of this, that I had to carve our time to focus on my dissertation. Somehow. I threw intention and energy toward this journey again, completed and defended my proposal (“Exploring Stories at the Intersection of Landscape and Linguistic Literatures through Wildness, Beauty, and Imagination: A Narrative Inquiry”) and am now focused on my dissertation. My primary intention for 2021 is to complete my dissertation.

A few of the books lining my literary nest.

Reading widely and deeply: Like so many of us, I live surrounded by shelves and piles of books. My heart is content when nestled within a literary nest, both figurative and physical. Fiction and non-fiction line my nest. Through both my writing and academic lives, I organize these readings through bibliographies, papers, notes, publication, and journals. Another of my intentions for the upcoming year is to weave Goodreads back into my literary life. I am reading so many incredible books for my studies and diving into luscious fiction at night before bed, my intention is to engage with this reading community through books review on what I’m reading and learning more about what others are reading and recommend.

“Lift it up”: I am such a believer in this. I learned this lesson through life, especially those chapters of life that simply did not make any sense. For those events and chapters that no matter how hard I try, either don’t make sense or I cannot seem to make right, I’ve learned to tell myself to, “Lift it up.” I do this both literally and emotionally. I may be known along my running trails as the runner who out of nowhere often throws her arms up in the air. I’m okay with that. When my mind returns to difficult terrains, I do my best to “Lift it up,” and channel that negative energy into something positive. Again and again and again, until like a river bed, the re-directed waters form new paths.

We shall see what happens within the narrative arc of this year. Come what may, it feels good right now to both lift and ground myself in these intentions.

Smudging in the New Year with sage and intentions.

We brought last year to a close on New Year’s Eve by smudging with sage what we wanted to release from the past months and focusing our intentions and energy on what we want to bring into this year. A new tradition.

New Year’s Day, during my early morning solitude, I continued letting go and setting intentions with the sage smudge stick. I unwound the twine and allowed more oxygen into the bundle of sage. Over the course of the next hour, immersed in my thoughts and writing, my writing room filled with the purifying smoke. A LOT of purifying smoke, I suddenly realized.

I put the bundle outside in my kitchen garden, where it continued to smoke. I smudged all of our own home, as well most of the surrounding area. The pungent smoke hung in the air. I texted our neighbor to say, “When you step outside and wonder how you were suddenly transported to Woodstock, it is because I’ve been smudging over here. Smudging, not smoking!”

She wrote back, “We need all the smudging possible…good job.” Suffice it to say my writing room is now permanently purified, even after leaving the door open all day!

I stumbled across this poem and it resonates deeply. A gift.

i am running into a new year

by Lucille Clifton

i am running into a new year

and the old years blow back

like a wind

that i catch in my hair

like strong fingers like

all my old promises and it will be hard to let go

of what i said to myself

about myself

when i was sixteen and

twentysix and thirtysix

even thirtysix but

i am running into a new year

and i beg what i love and

i leave to forgive me

 

May you run into the New Year and may the full moon usher in your dreams.

The Hands that Write This Letter

Early morning writing

The poem, “Consider the Hands that Write this Letter” by Aracelis Girmay came to me via OnBeing.org. Of course, the title of the piece had my attention immediately.

Then, to hear the poem read aloud by Pádraig Ó Tuama—just exquisite.

I share the poem with you here for the sheer beauty of the words and experience. I do hope you’ll treat yourself to clicking on the link to hear read aloud.

 

 

 

Consider the Hands that Write this Letter

Consider the hands
that write this letter.
The left palm pressed flat against the paper,
as it has done before, over my heart,
in peace or reverence
to the sea or some beautiful thing
I saw once, felt once: snow falling
like rice flung from the giants’ wedding,
or the strangest birds. & consider, then,
the right hand, & how it is a fist,
within which a sharpened utensil,
similar to the way I’ve held a spade,
match to the wick, the horse’s reins,
loping, the very fists
I’ve seen from the roads to Limay & Estelí.
For years, I have come to sit this way:
one hand open, one hand closed,
like a farmer who puts down seeds & gathers up
the food that comes from that farming.
Or, yes, it is like the way I’ve danced
with my left hand opened around a shoulder
& my right hand closed inside
of another hand. & how
I pray, I pray for this
to be my way: sweet
work alluded to in the body’s position
to its paper:
left hand, right hand
like an open eye, an eye closed:
one hand flat against the trapdoor,
the other hand knocking, knocking.

Christmas Cactus at the cusp of bloom.

 

When a Woman You Love Has Breast Cancer

I had several of these cards. They lived on our fridge, lined my pockets, were bookmarks in my books and journal.

Back from our run, Luke noticed that with his lilac-colored chew toy in his mouth, Angus and I matched. It’s important to choose one’s running attire to match your dog and his chew toy!

This piece has been a while in the making. I take a deep breath and offer these thoughts, as during my own journey with breast cancer I came to realize how very many lives breast cancer touches, whether it’s you or a woman you love, mother, sister, friend, cousin, and on and on. If a woman you love has breast cancer, I hope this piece might provide insight and ideas.

If you are the woman with breast cancer and this reflects your experience, but you may not have the words or energy to express, you can text or email this piece—”This is how I feel,” or “This is how I felt”—so people will know how to support you, without you needing to tell them.

I offer this reflection on my own experience, as I realized that when the words “breast cancer” enter a conversation, often people don’t know what to say. I can only speak from my own experience and what my mom and other dear friends have shared with me about their breast cancer journeys.

While this piece cannot encompass the infinite experiences of all women, I hope it might include common threads and make the ground firmer under your feet.

Some possible language and things to think about when a woman you love has breast cancer:

“I’m so sorry you’re going through this.” When in doubt, go with this. That was really all I needed or wanted to hear. An acknowledgement of the journey, no explaining, no joking, no trying to make me feel better, just an acknowledgment. I knew I could take the rest from there.

Listen. When this journey begins, you are bombarded with different procedures, tests, and possible treatments. Some are optional, others not so much. I learned that the decisions made are intensely personal for each woman. Listen to her and support her in her decisions. I know that I made decisions that those who love me did not initially agree with. It meant the world to me that they listened, supported me, and did not try to change my mind, even though I knew how they truly felt. It’s her body, her decisions. Listen, trust that she knows what’s best for her, and support.

Follow her lead. For some women, this is an external journey and others an internal one. Some women seek comfort outwardly, and others turn deep within. “It seems like the women I know with breast cancer go either all one way or the other,” a dear friend said to me. “Either it’s intensely public or intensely private, not too much in-between.” Whatever her natural inclination, follow that. Some women find great comfort and strength in sharing with their friend and family communities via email, social media, talking about it, sharing the journey. Whatever path the woman you love walks, follow her. It is such an internal and intuitive urge, it’s really not even a choice.

For me, the journey was extraordinarily private. It’s always been like this for me. When I go through tough times, I put my head down, go deep within to get through it, and emerge into the world after. Another reason I kept this journey private is that I did not want to see that look in peoples’ eyes. That look of sympathy. I wanted to feel and be as strong as possible.

If she is someone that goes within, often those who love her feel helpless at not being able to help or feel left out, not included. This is not personal. For that woman who needs to go within, providing her with both presence and space is an enormous support. She feels your love and presence. It’s just taking every ounce of her energy to get through this right now and when she emerges on the other side, she will connect. There are many reasons why the woman you love may go deep within for this journey. Presence and space.

Until she jokes about it, it’s too soon. I believe this comes from the very human response to make someone you love feel better through levity and humor and with the best of intentions. Until she jokes about it, it’s too soon. And, if you want to make her feel better and initially joke too soon, she understands where that comes from and the love it expresses. When my mom was going through chemo, we finally laughed when she described putting on her make-up foundation the day after shaving her head, “I went to put on my make-up today and where do you stop?” she said as she moved her hand up her forward and just kept going up and over her bare head. “Your neckline in the back?”

Grief and mourning. Her grief and mourning are real and deep. I learned later that after visiting dear friends during the depths of this journey, after I left the husband said, “That wasn’t Dawn. She just seems so sad.” I was so very, very sad. Doing my best to cover for that, but clearly there were cracks. Grief for my body. Grief about the journey. Just soul-deep grief, and I couldn’t figure out how to come out of it. I did my best to put a smile on, so as not to spread that grief. I read something Brad Pitt said about going through tough times that resonated with me, “I clean up okay on the outside, but it’s still pretty rough underneath.” That was me—with lipstick. Because my journey was private, most people did not find out until after all my surgeries, when I was on the other side of healing. Eventually, slowly and on it’s own time, the light began to shine in my soul again.

Pink. Not all women with breast cancer embrace the color pink immediately. Remember my own near Great Pink Balloon Rampage? It would be an understatement to say that I immediately embraced pink. I remember Mom expressing this, as well. Philosophically, I whole-heartedly embrace pink and the research and at last naming and holding space for a woman’s cancer marginalized in the medical community until recently that it represents. I just didn’t want to wear or see it during the most intense times. I embrace it now. It has taken quite a bit of time and I’m out of the deep throes of the journey. Other women find tremendous comfort, community, and support with pink. Whatever she feels, it is deep, visceral. Go with it.

Don’t even try to explain her experience to her. Please, please, please do not explain how she’s feeling or what she’s going through to her. That’s a great way to get throat-punched.

Just do it. If you want to provide support or show love, just do it. Do not say, “Let me know if you need anything.” That sentence hands another responsibility to the woman you love who is already doing all she can to keep one nostril barely above the water. Just send flowers or a card. Just send luxurious face creams or have take-out delivered. Put together a care package with an impossibly soft blanket that she’ll curl up under and feel your love. Send tea and candles. Bake homemade bread and send. Whatever feels right. Just do it.

If you’re the woman going through this. I’ve been on the other side of this for a few months now, some things that I would say to myself or any woman going through this. Be gentle with yourself, you’re doing the very best you can. Trust yourself and your intuition. Sleep when you can. Create a soft nest with an impossibly soft blanket, candles, tea, flowers, meds. Stay there as much as possible. Your body will be different, not worse. Embrace the stories of your scars. This one will may take a lot of time. I’m just starting to maybe get there. There’s no right or wrong way to do this. Trust what feels right for you.

While these ideas cannot encompass the infinite ways that a woman experiences breast cancer, I hope they might provide light in what can feel an opaque and unfamiliar landscape.

Follow her lead.

Trust that she knows the right decisions for her.

Presence and space.

Listen.

 

Joan & Dawn: The Personal and the Professional

First bouquet of Summer 2020.

Dawn & Joan, Tucson

In between Zoom meetings, report writing, and email today, I received a text of a piece she wrote from Joan Wink. Some know her as an internationally renowned scholar, professor, and writer. I know her as Mom. During this time of the lockdown, this piece on the intertwining of our personal and professional lives feels especially resonant. For all of us, the compartmentalization of the personal and the professional has dissolved in these past months, whether we wanted it to or not.

For Mom and I, the intentional braiding together of the personal and professional creates a primary pillar in of our personal and professional lives—each strengthening the other. Mom began writing of this piece for WinkWorld and discovered later that day that I was making a video on just this topic this for one of my PhD courses focusing on Women in Leadership.

Mom shares her wisdom and my video here: Dawn & Joan: The Personal and the Professional.

As I watched the video for the first time in several months, taken after a month spent on my parents’ ranch while my dad received treatment for prostate cancer in AZ, I flashed on Daddy, Mom, Noé, and I this past Christmas, smack-dab in the midst of my own cancer treatment. Daddy said, “I’ve heard that it’s 1 in 8 people in the US who develop cancer. In our Wink family, it’s 3 out of 4.”

“Well,” we said, “at least we’re in it together!”

As we all navigate this global journey of the lockdown, doing our extraordinarily imperfect human best to meld our personal and professional lives into the best whole we can compose, perhaps we might find ways to fuse these often separate lives together for a mutual strengthening and inspiration of each. No matter how messy and exhausting the journey (and it is), bits of beauty are sure to shine through.

At least we’re in it together!

Work day.

 

 

Wild Waters, Langscape, and Stories About the Collective Human Experience

Birthday beauty.

Thank you, thank you, and thank you to all who reached out to connect on what’s been happening in my life. Each beautiful email, post, text, card lands in my heart in deep, profound ways. If I have not yet responded, please know how much you and your connecting means to me. I will respond. I am so grateful for our shared life paths. Writing that piece after months of holding, and your loving response, created slivers of peace absent before.

Wildly, just as I re-emerge into the world, our world is now self-isolating and retreating into itself. I hope this finds you and yours safe. In our family, kids are home, we are self-isolating, and working remotely.

I was delighted to receive an email from the editors of Terralingua‘s Langscape Magazine that they are now publishing pieces online with goal is to make their “digital repository of important stories about biocultural diversity freely available at this critical time in our collective human experience.” My article, “Wild Waters: Landscapes of Language” is now a part of those available collective human experiences.

Truth be told, I just love this piece. One of my favorites ever. Please find “Wild Waters”, and many more, here.

I am running again, which is a spirit saver. It is also when I compose many Dewdrops pieces. I am working on different pieces around cancer, COVID, teaching virtually, and Harry Potter. Will keep running and hopefully get those to you sooner, rather than later!

Much love,

Dawn

                                        Making videos for faculty and students.

Breast Cancer – A Chapter in the Story

“Breast cancer is no more than a chapter in my life story.

It will never be my life story.”

~Robin Roberts

Saltines and Ginger Ale. Who knew?

When I first heard that breast cancer was a possibility, these were the only things that tasted okay for months. Here’s for small miracles!

Breast cancer has been the chapter of many women’s life story in my family. Many of you know that Mom‘s life story includes this chapter, as did my aunt’s on Dad’s side. My maternal grandmother’s life story ended in that chapter. This chapter is now a more intimate experience in my own life. This past fall I was diagnosed with breast cancer. For personal and professional reasons, I chose to keep the journey private. For all those same reasons, it now feels right to share.

During this time, I tried to focus on beauty where it could be found.

There was beauty and blessings in early detection.

There was beauty in a gorgeous AZ scene on the doors of pre-op room, very helpful to see and imagine.

There was beauty in the love and laughter in the shared prayer with our former pastor and forever friend who called before my surgery and led us in an energy-filled prayer, closing with, “Wow! I pray like a Baptist when I pray for Dawn Wink!”

There was beauty in learning that all the cancer was removed and I would not need chemotherapy or radiation.

There was beauty in the daily early morning coffee and candles during recovery.

When there were unexpected complications and I went back into surgery on December 23, there was beauty my family gathering with me at the hospital.

There was beauty in my surgeon who after complications arose took infinitely exquisite care of me through the initial emergency visit to her office on a Sunday, to the surgery the next day, then the daily, then every other day, then twice a week, then weekly care until the next surgery two months later.

Beauty in the phenomenal support and presence of my family. Every moment. Every Time. Throughout all.

The beauty of bulky sweaters! When things went awry after the first surgery, Mom, Wynn, and I went to a local consignment shop and loaded up on bulky sweaters that got me through these months. I have no idea what women do in the summer. Mumus? God bless bulky sweaters!

A gorgeous lamp store in downtown Santa Fe.

Window of my writing room.

There was beauty that in the month of October, Breast Cancer Awareness Month, before my diagnosis was final and when I walked into a breast cancer center for yet another diagnostic test and was greeted by a wall of pink balloons draping all in the two-story foyer that The Great Pink Balloon Rampage of 2019 remains only in my mind and did not actually occur. It was very, very close.

There was beauty in those whose intention is to comfort during invasive procedures. Unless you’re a person like me who during difficult times wants to be left alone to do what I need to do. So when people intending to be helpful during these procedures do not listen to me asking to please leave me alone and let me focus, there is great beauty that the visceral growl of, “If you get in my face one. more. time, I will throat-punch you,” remained unspoken.

Gratitude for small miracles.

There was beauty in the bouquet of flowers that Mom and Dad sent me after a confluence of events came as a 1-2 punch one week.

Beauty in the prayers received. I felt them deeply. Prayers made a world of difference for me. Thank you with all of my heart. Mil gracias con todo el corazón. 

Patricia De Dios

Beauty in the discovery of a cupboard beneath the stairs – a delight to my Harry Potter-loving heart.

Beauty that my recent surgery went well and my healing journey is on the upswing.

Beauty and courage in the pin given to me by a forever friend. I carry this pin with me, take it out to look at when I need inspiration, and rub my fingers across the edges when in my pocket.

I feel strong and have been working throughout.

I look forward to hitting the running trails again! The dogs look at me expectantly in the mornings, disappointed when I only refill my coffee. We will all be thrilled to get back into our daily rhythm.

I look forward to climbing back into the dissertation saddle to complete that journey.

Breast cancer is no more than a chapter in the whole of the book of my life story. This chapter definitely shapes me in new ways that continue to unfold and emerge. I don’t yet know all of the ways this will influence me. There is definitely a “Before” and “After” the diagnosis. The rest of the life story yet to be lived.

 

 

Weaving Beauty into 2018

                                      The Plaza, Santa Fe, NM

Festive holiday and New Year wishes to you and yours! 

I wanted to take a moment to wish you and yours a lovely holiday season and New Year! 

We spent ours with my parents here in Santa Fe, including a Christmas Eve walk around the Plaza.

                                  Cathedral Basilica of St. Francis of Assisi, Santa Fe, NM

                        Blessed Kateri Tekakwitha, by Estella Loretto

                                                                        Christmas Eve 2017

                                                                  Gingerbread La Fonda Hotel

I found this nest with three eggs on the Christmas tree at the La Fonda. I love nests with three eggs…

                                              Eggs in nest on Christmas tree at La Fonda. 

                      Susan’s Christmas Shop

                   Gazebo, the Plaza of Santa Fe

We lucked out with the best table overlooking the Plaza for Christmas Eve treats. Wyatt was home sick. 

Writing in my journal.

I wrote in my journal by the light of the Christmas tree on December 31st, putting blessings of 2017 and dreams for 2018 to paper. Several years ago on a run during a difficult time, the phrase, “Create beauty” came to me. The next day while running, the phrase came to me again. I was very aware that the phrase was not “Find beauty” or “Discover beauty,” but “Create beauty” with an active verb. Since that time, this has informed all aspects of my life, whether it is professional, personal, or family. I try to create beauty in the world. I often fail, as I am wildly imperfect, but this mantra has grounded and inspired me for many years. 

This year as I wrote in my journal, thinking of what I hope to bring into 2018, with “Create beauty in the world,” firmly in my mind, another thought nudged its way onto the page. As I look at all to come in 2018, I thought, “How can I weave beauty into every day?”

I want to play with this idea, how to weave beauty into every day, no matter how busy or long. “Create beauty in the world” has been a sound foundation for me for so many years. I look forward to playing with this other aspect of beauty. 

Wishing you a year of of creating beauty and weaving beauty into your every day life.

                                             Santa Fe sunrise taken on an early morning run.