The Last Straw: On Transitioning From the Old Body Into the New

My body has changed, and I’ve got to learn to accept its changes.

It’s difficult. I used to run 10ks, work full time, whip up recipes from Bon Appetit, shop, garden, plan social events here at home, dance with my husband and daughter, flip pancakes, and generally fill our house with the kind of life I’d always wanted in a home. It wasn’t perfect, but my body was an actively orbiting planet around a warmth I hoped to harbor. I worked hard. Like many of us in our productivity-obsessed culture, I bought into the feelings of self-worth associated with being “on top of it.”

This new body is different. Parts of me are gone. I’ve lost strength, lost mobility, lost stamina. A good friend of mine, a fellow traveler on this road of chronic illness, made an analogy that I come back to often. He said, paraphrased, “You used to have 50 straws in a cup. You held them and you could use them every day. When you woke up, they reappeared.

orange and yellow straw
So much sweetness to savor. 

Now, you may have 25, or 20, or 10 straws. They take longer to come back. And when you select your straw (or task, or thing-to-do) you must make more strategic choices.”

I think of this often. Fewer straws, less energy. Fewer straws, less done. Messier house. Forgetfulness, fatigue, contracting the circle of my hoped-for life.

It’s not that I’m choosing to wallow in grief, although I think it’s essential to our healing that we recognize and allow ourselves to feel our losses fully. It’s not that I’m hanging on to loss. It’s that I feel like I’m in a process of transitioning from an able body into a differently-able body, and what that means is that less gets done. I attend fewer social engagements. I cook less, I attend fewer meetings. I set up fewer social engagements because I’m afraid I’ll have to cancel. I miss my friends.

So, what takes the place of my previous productivity? What do I do with the empty cup space, the space where the straws used to sit?

I rest. I meditate. I go to doctor’s appointments and physical therapy (7 months later, and still going). I write when I can. If I’m able, I’ll do a few chores. I sit and talk with family. Drink coffee or tea. Sometimes I binge watch Netflix shows. I lay down and think. I read.

Sometimes the pain from my surgery and chest scar tissue renders me incapacitated, unable to concentrate on anything but pain relief and sleep. Sometimes the fatigue is so extreme, as it was this past weekend, that I am barely able to rise from bed.

And so I am learning – in the present continuous, as it’s a process – to be compassionate with my new limitations. I am learning to test how far my right arm can reach, how far I can walk (a 1 mile a day workout so far is about my limit). I turn my gaze to the gratitude in small things, to the garden with its blooming borage, ballhead waterleaf, scarlet flax, bachelor’s buttons, poppies, and violets. I think of water, of berries, of the rise and fall of a mockingbird’s tail. I think of spring and summer, my daughter and her laugh, my husband and his deep, true goodness.

This learning is not a straight line.

What keeps you grounded as you transition and think of your new life? Your body’s losses, its gains?

drinking glass with pink beverage and mint leaves
For you. 

 

Wallace Stevens, John Cage, and Cancer. “Everything we do is Music.”

Wallace Stevens starts his famous poem with the same line as its title, “The house was quiet and the world was calm.” In this poem, the word “calm” repeats six times, lulling the reader into a sense of languid, expansive openness. “The world was calm.” A person could continue, could go on. This lived moment, in this poem, is given meaning through its rearticulation and recurrence.

white and red house surrounded by trees at night

An ideal. A memory.

“The house was quiet and the world was calm.” My own world is returning, slowly, back to the familiar figureheads of normalcy. I say “figureheads” because my life’s markers are symbolic, not entirely trustworthy, images of what used to be. My hair is a slow-growing helmet, no longer a velvet crust, for example. And yet I don’t entirely rely on its long-term presence.

My health is in stasis, no better, no worse. Chronic shoulder pain has become my companion. Every day is monitoring, listening into the body’s conch shell and hoping for echoes of normal.

blur close up conch focus
Inside is future or a past. 

The figurehead of my family is clearer, but I know the undertow of sorrow still holds sway. Look around, the world seems to say. Touch the shore again.

I try to. The world goes on “as if,” the sun also rises. And yet to re-enter the old life again and again in this new body, with its losses and fears, can feel like a lie. Each day feels not so much an entry as an attempt. Hello how are ya goes the sincere greeting to the mail carrier, the grocer. No ill will towards anyone.  And yet I close my eyes and feel the fractured, unmoored elements of this body pulling me towards falling.

Equilibrium, even the appearance of it, takes much more work.

“The house was quiet and the world was calm.” Stasis. The dash between words, a valley.  The musician John Cage has a famous work called 4’33”, and it is complete silence. Four minutes, thirty-three seconds of silence. Quiet. The audience sits and hears – no, the idea is to listen– to coughing, the rumble of the ventilation system, seat creaks, rustling, and the quiet.   To just sit. The piece is a statement to be here now. To be present, a reminder that ordinary sounds, attended to, can become song.

Or simply:  Stop. Break. Wait. Beauty is everywhere.

“The house was quiet and the world was calm.” For now, for now.

There’s no resolution here. No closure. I’m aware that my hunger for resolution is a hunger for a certainty that cannot come. We who live in Cancerland, stage IV or recurrent or just diagnosed, have stepped into a world of mirrors and aberrations, in which the life we saw before is distorted. Figureheads on ships that used to guide us can’t be believed. Music has more minor key, or no familiar notes at all.

And what can we do? We return to our seats, or to the doorway, again and again, and in either the silence or the new music we make some way.

wood landscape nature forest
Photo by Pixabay on Pexels.com

What is your new way? What are the new experiences, sounds, sights that you are attending to as you recover?

 

 

 

 

Living with Chronic Pain Or Why I Cancel Plans at the Last Minute and Throw Down the Wooden Spoon

Despite flu and pneumonia vaccinations, this month I came down with some awful virus and acute shoulder pain. It’s been miserable, and here’s why:

1. My already surgery-incapacitated right arm, a zombie appendage of its former self, can barely reach past my shoulder. I am a person who puts dishes away, who likes to put up pictures. I like gardening, reaching over the sofa edge to put my arm around my guy. I am also right-handed. Now, with a stiff neck, stiff upper shoulder and shooting nerve pain down my right arm, all physical therapy exercises have come to a halt. Waking up involves a pain and capacity assessment, which then determines my mood, which unfortunately revolves around “cranky,” “tired,” and self-reproach at my limitations. I really hate chronic pain. I really hate cancer.

2.  And the virus! March, according to my General Practitioner, has been peak flu season. While the vaccine helped, some other microscopic parasite decided to colonize this body. Score one, virus, for the timing of it: reinforcements, aka my immune system, were slow to rally, and even now, in conquest, the landscape is parched and needs tilling. Meaning: I’m really tired, rest a lot, cancel plans often (and am truly grateful for the patience and understanding of friends) and must practice patience.

forest photography
On bad days, I hang out here.

3. That word: “patience.” It’s a tough one. There is so much I want to do, and so much urgency. I am sick of waiting, sick of living my life on the timeline of my illness. The self-help gurus echo in my ear with their calls for positivity, for strength, for “not letting cancer get the best of me,” and I get that we occasionally need those prompts. But for the love of Beezus, call off the joy. I mean it. You get to throw down the spoon, you get to binge watch reality crap. Some things just stink and neither Brene Brown or Deepak Chopra (despite their good intentions and expertise) can – or should – take you out of your anger or impatience or grief.

4. “The only way out is through,” and come the courthouse of full healing I’ll testify to that.

How do you deal with the chronic, unrelenting nature of cancer or another illness? In what ways do you allow yourself to be in the dark of it?

 

Between Scans is an Emerging Place of Refuge

It’s just one thing to hold a cup. It’s another thing to sip. It’s one thing to close your eyes, another to see. Frame by frame, each of these adds up to living. To life.

Another: my daughter enters the room, sits to check her phone. Her thumb strums the screen. Her neck is a swan staring down at the glass. All around us is the noise of living: the street traffic, dawn on a Sunday, this Sunday, here and now in the paper piles, the dishwasher hum, the ongoing ordinariness of morning.

I have passed many such mornings in a rush. So many days have rolled by in a turning of chores, tasks, to-dos. And the trance of pre-cancer life is one of there is tomorrow. You’ll get another chance. It is of course a myth, but it is one we live by.

But along comes cancer in its red truck and its repeating, manic music of death. Of dying. After nearly three years in and out of treatment, I still wake to its songs. I still wake and do a mental body scan with questions such as: Does my head hurt? How is my breathing? I check for aches, for pains. I imagine the worst. Anything lasting longer than two weeks warrants a call to my oncologist.

Life now is in-between. In-between scans, in-between appointments, in-between one medical event and another. Note the dash between “in” and “between.” It is a space I currently claim and occupy.  It is hovering, unnoticed, a connector that links one state to another. A grammatical and embodied corpus callossum.

My body is a radar station and my mind is on alert.

It’s exhausting.

I’m in a holding pattern now. Treatment for the recurrence to my rib is done. Scans are over. I’m NED (no evidence of disease) for now, but the likelihood of a third recurrence is high. Every day I am learning to integrate the Fear of Recurrence into the reality of Get on With the Day, trying not to let the one disable the other.

This anxiety is real, and many cancer survivors need support in coping with the PTSD of treatment and long-term side-effects. There is no shame in this. It’s also worth noting that in terms of human evolution, living with a long-term, life-threatening illness is relatively new. Our brains haven’t been equipped to process or deal with such a scenario, and so survivorship requires practice.

“Practice.” Such a reassuring, powerful word that speaks to honoring the effort, honoring each attempt.

Each day I practice meditation and breathing.

Each day I practice honoring this body and its strengths.

I practice self-compassion, and extend this outward to loved ones, friends, community, the world.

pink and white lotus flower

“No mud, no lotus.” Thich Nhat Hanh

Practice isn’t about perfection. It is, in a nutshell, doing. Doing without judgement, doing for the sake of itself. In this sense I find it immensely liberating – there is no call to be good at it at all.

What are you practicing these days? What practices help you cope with the stressors of cancer, of disease, of life in general?

 

After Days of Rain

The soil is soaked. A grey blanket of clouds is coating the bay, and the pounding rains are giving us respite. Time to open the door, take walks, and feel the ground again.

green lead plant
Loose stones, shoots.

My husband and I planted bulbs in November. I wanted hyacinths, tulips, paperwhites, and daffodils. They are alive, making their way through the darkness.

img_9441

Such hope.

 

The Sky is Not Falling Yet: On Remission and Fear.

Hearing the diagnosis of cancer is like being suddenly thrown and held underwater. At first, you come up for air in frantic sputters. You flail. You are desperate for help. If you are lucky, you receive a life vest or ring, or some kind soul/s swim out to keep you afloat. You can rest, then. Backfloat. Look at the sun. This small, watery world becomes swimming, becomes wait.

nature beach holiday sand
Hopefully sipping a mojito or a mai-tai. 

The thing is this: it is permanent. You can never fully leave the cancer sea. Despite the stories of full remission, which are wonderful and true, and my hope is to be among them, cancer does return.  In many cases it becomes a long-term disease, resisted for many years. Sometimes it is fatal. Sometimes it never returns. Why are there such varying outcomes? Like so many cancer factors, the answers are complex. A person’s health condition at diagnosis makes a big difference. Comorbidities (and I dislike that term)  such as diabetes, smoking, and high blood pressure can impact outcomes. Some cancers are highly aggressive and fast-moving, some are slow and pokey. Genetic mutations play a role, as do age, gender, weight, race (unfortunately, and equity of care is a huge issue), tumor size, and stage of diagnosis.

But the fear of cancer’s return haunts me. Each new ache, each pain, can turn into a dark spiral of imagined lethalities. There’s a term for this long-term cancer worry: Damocles’ Sword Syndrome. In the original story, young Damocles admires the wealth and “luck” of King Dionysus of Syracuse. To teach a lesson, Dionysus allows Damocles to sit on the throne, giving him all of his riches. But over Damocles’ head is a sword, hanging by a single horse hair. A single hair. Damocles cannot enjoy the opulence, the power, and the bright wealth around him, as he worries and worries about the sharp and dangling and weighty weapon.

Cancer survivorship has its own sword, its own hair. Remission – and health – are a sure relief and wonder. It’s where I live now, not on a throne but a kitchen chair. Each day involves a series of routines which include physical therapy, meditation and writing, among others – that helps ground me in this day. But – and there is always that caveat, you can’t fully release, for always there is and yet or but or for now, and that is the crux of this, isn’t it? which is how do I go on? – there is the anxiety of a single “hair” – a scan, an ache, another lump – that lurks. The hair. It’s there. You just have to look up.

So, what to do? I have no easy answers. I have gone to support groups, have asked for help as needed. Understand the impact of this process on people around you, and let them talk about it. Also helpful: not talking. It helps to go hiking or to the mall. Writing helps. Exercise helps. Forgetting helps. Focusing on the garden or the trees or the dog or cat, making a meal. Somehow it helps to re-notice the love in ordinary living, the basic goodness of going on. This table, for instance. These chairs.

Not much wisdom here, I’m afraid. And here’s the truth: I am afraid. But here I sit, on this basic wooden chair, and am learning to practice living with both each day’s opulence and cancer’s sharp glint.

And a single hair.

Love, wobbling, out.

 

 

 

 

Cancer Super Achievers: An Unproductive Lament

The world of cancer is peppered with super achievers. For some people, a cancer diagnosis propels them into a flurry of mountain treks, book deals, year-long walkabouts, profitable blogs, the starting of foundations. They do cleansing diets, quit or change their jobs, marry or get divorced, adopt children, remodel their homes. The wind machines of productivity blow their long, flowing (metaphorical) hair into the photographer’s lens, and the world, it celebrates their proliferating efforts.

woman wearing gray shirt and black overalls on boat
I wish I had her hair. 

“You don’t have long to live,” cancer says. It is, to be sure, a wake up call.

Respect. And it’s no one’s business how we react to cancer or any disease. The music of coping has a wide, wide range.

And yet I can’t help feeling pressured, at times, to do. I realize this is partly cultural. Americans value productivity, work, achievement, productive leisure (think high-end tents, travel, what did you do this weekend?). Even cancer is no ticket out of this race. Even the cancer patient (and the chronically ill in general) must justify their rest, their healing, their not-productive-sitting-reading-resting being. We don’t honor enough that healing is an active, regenerative process in which the body’s reserves must be deeply tapped. This causes fatigue. It can cause grief. We don’t honor rest. We don’t honor the trauma that cancer heaps on the mind and the body, and the concentric circles it then echoes into family, friends, community.

In this vein, I want to say that I haven’t been terribly productive. This has its pluses, its minuses. Working outside the home is a way of staying engaged with the world, is a way of having another thread of meaning woven into your life. And I have been away from a job I love for nearly seven months.  Working inside the home is a series of tasks that are constantly being undone, and therefore there’s little to show for it.  And I haven’t written a book, haven’t remodeled a room. Kitchen cabinets remain in disarray. The wet mop is still outside, the linoleum has holes.

Not productive.

I ask myself: What should I be doing, exactly? Should I be sorting through the old books, cleaning the garage? Another Costco run? More vigorous meditation, reading professional manuals? Piles of poem and other drafts stack each household table, as do my husband’s paints, brushes, figures. I wander and sit. I read, then rest. I cook a little, grocery shop. Then rest some more. I spend 2-3 hours a day doing physical therapy exercises. “What do you do all day?” someone asked. Cue maniacal laughter.

Not productive.

I once scrolled past a Twitter post that read something like, “Click to see how breast cancer inspired this woman to climb Mt. Everest!” I replied, semi-snarkily, “Breast cancer made me cranky and tired.” Oh, the dark humor of it. But it was the truth.

And you know what?

It was the most productive thing I did that day.

 

How do you cope with your body’s need to heal? Its unpredictability, the need for rest?