sleep – In the Woods

on the quality of life

Special Note: I hesitated to share the following post because it might come across as a big dose of self-pity. I know many people quietly contend with chronic illnesses without complaint, but somehow after five years I wanted to acknowledge my daily struggle. In spite of it, though, there is still much in my life that I enjoy, including being with my loving family and the things I usually write about, and take pictures of, in this space. My next offering will be back to the usual.

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Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties. It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.
~ Elisabeth Tova Bailey
(The Sound of a Wild Snail Eating)

It’s hard to believe it’s been five years since I received my radiation proctitis diagnosis on January 3, 2020. It’s been a difficult journey, learning how to live with a chronic illness. I feel like Sisyphus, continually pushing a boulder up a hill, with no reasonable hope for relief.

I’ve learned that radiation proctitis is called pelvic radiation disease by the medical system in the United Kingdom, a much more comprehensive description than we have here in the United States.

In the last few decades radiotherapy was established as one of the best and most widely used treatment modalities for certain tumours. Unfortunately that came with a price. As more people with cancer survive longer an ever increasing number of patients are living with the complications of radiotherapy and have become, in certain cases, difficult to manage. Pelvic radiation disease (PRD) can result from ionising radiation-induced damage to surrounding non-cancerous tissues resulting in disruption of normal physiological functions and symptoms such as diarrhoea, tenesmus, incontinence and rectal bleeding. The burden of PRD-related symptoms, which impact on a patient’s quality of life, has been under appreciated and sub-optimally managed.
~ Kirsten AL Morris & Najib Y Haboubi
(World Journal of Gastrointestinal Surgery, November 27, 2015, “Pelvic radiation therapy: Between delight and disaster”)

Quality of life — how on earth can it be measured?

The necessary low fiber, low fodmap diet is terribly restrictive and makes eating with others and/or eating out in restaurants very awkward. I need to bring my own food.

The unpredictable and painful flare-ups of symptoms keeps me from making too many plans and the plans I do make need to be tentative. It’s frustrating, but the alternative is to never go out and do anything.

In my darkest moments I feel like this steep price paid for cheating death is not worth it.

The Heart asks Pleasure — first —
And then — excuse from Pain —
And then — those little Anodynes
That deaden suffering —

And then — to go to sleep —
And then — if it should be
The will of it’s Inquisitor
The privilege to die —

~ Emily Dickinson
(The Poems of Emily Dickinson, #588)

Coping mechanisms — there are quite a few…

Gathering information and helpful tips from my sympathetic gastroenterologists (both in Connecticut and North Carolina) — I’ve been lucky with that. (On the other hand, the radiologist and oncologist who dished out the radiotherapy were shockingly unsympathetic about the iatrogenic disease this cancer treatment caused.)

Finding the Pelvic Radiation Disease & Radiation Colitis support group on Facebook. It’s validating to know others who understand what it feels like to be living with this.

Working on my original 2020 goal “to take a walk in the woods.” Spending time with nature and capturing its wonders with my camera is very healing.

Reducing stress by practicing yoga, reading poetry and books, and listening to music. (I’m so grateful for the beautiful Chapel Hill Public Library and for my playlists on Spotify!)

Distraction = long hours of family history research.

Learning to say “no” (and trying not to feel guilty about it) when I need to rest and recuperate.

What a long strange trip it’s been these last five years, running concurrently with the pandemic in the beginning, and complicating our move to North Carolina. Most of all, I’m grateful for my husband. Tim lends a patient and supportive listening ear, bearing witness to my pain and struggle. I honestly don’t know how I would have gotten this far without him!

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sacred stone spiral

10.21.24 ~ Stone Knoll, Calvander, North Carolina
a glimpse of part of it from the road

Located less than three miles from our home in Calvander is a sacred monument nestled beside a large field, created by a housing developer for nearby residents to use for contemplation and connecting to nature. It was built 30 years ago, and even though it is on private property, belonging to a homeowner’s association, respectful visitors are welcome.

The reason people compare Stone Knoll to Stonehenge is because the spacious outdoor monument — like the one in England — is composed of giant boulders and stone slabs that spark curiosity about how they got there and what their significance is. At Stone Knoll, the stones are arranged in a spiraling pattern that is, by design, soothingly mesmerizing. Large, monolithic slabs mark the four compass points — north, south, east, and west — each adorned with animal footprints and thought-provoking poems by the likes of Maya Angelou and Carl Sandburg.
~ Jimmy Tomlin
(Our State: Celebrating North Carolina, November 2024, “Sacred Respite”)

the waning gibbous moon was not to be overlooked

The stones closer to the center of the spiral were progressively smaller and more closely spaced than the stones father out from the center. I climbed up the step seen on the center rock (above) in order to get the picture of the flat plaque in the picture below.

the adjacent field was full of these grasses, making for a purple haze effect

We had the place to ourselves and appreciated very much the quiet moments spent there.

in the depths of winter

“Chestnut Trees, Louveciennes, Winter” by Camille Pissarro

This is the season of the long night and the leafless tree. The cold seeps into our bones and life sleeps beneath the soil. ….. We know that the worst of the winter is yet to come, and we must endure this, but the solstice sun is reborn and, with it, our hopes for growing light and warmth. In the depths of winter, summer plants its seed and the dark stillness explodes with starlight.
~ Maria Ede-Weaving
(The Essential Book of Druidry: Connect with the Spirit of Nature)

reflections

12.11.20 ~ Barn Island Wildlife Management Area
Pawcatuck, Connecticut

Somehow a week passed between our walks and I was feeling the definite lack of my regular endorphin boost. How did that happen? Some of the time was spent decorating our tree, which is almost done. I’m waiting on a mail order of ornament hooks. For some reason I ran out of them before all the pretty glass icicles made it onto the tree. But mostly I’ve been puttering around aimlessly.

Barn Island is the largest coastal wildlife management area in the state. It has about 1,000 acres of deciduous forest and tidal saltmarshes and lovely views of Little Narragansett Bay. The area supports “at least 9 State-listed avian species.”

I love it here, even if we didn’t see any birds this time. That might be because several couples were there walking their dogs. One couple was even letting their two large rambunctious dogs off the leash, putting them on the leashes when they saw us and then letting them go again after they had passed. Infuriating!

After a still winter night I awoke with the impression that some question had been put to me, which I had been endeavoring in vain to answer in my sleep, as what — how — when — where?
~ Henry David Thoreau
(Walden)

I’m missing my grandchildren. Most of the time I don’t dwell on it because I’m so grateful that we’re all safe and have incomes and food and roofs over our heads, the basics that so many Americans have lost or are losing soon. But recently, on a video call, Finn, age 2, called me Grammy for the first time, and the sound of his little voice coming into his own tugged at my heart.

And then there was the evening that Katherine, age 6, created a solar system model out of Play-Doh. I watched for about an hour as she told me about the different planets and that the first four were rocky and the last four were gaseous. I was captivated.

Another morning I got a phone call, Katherine wanted to know if I still had the Barbie Animal Rescuer set she played with here over a year ago. Yes! It is waiting right here in the living room for her next visit. When she visited us that November (2019) I meant for her to take it home with her but she said no, it was to stay at Grammy’s to be played with here. We had such fun playing with it together and I had wondered if she would remember that, and she did.

Katherine has lost four of her baby teeth. And Finn, an agile little guy who loves speeding around on his scooter with the greatest of ease, wound up tripping over his bean bag chair in the middle of the night, hitting and cutting his lip with his tooth on the bedframe and getting 7 stitches! But it’s healing up well and the scar is almost invisible.

The beauty of the earth answers exactly to your demand and appreciation.
~ Henry David Thoreau
(Journal, November 2, 1858)

I trust that the walkers of the present day are conscious of the blessings which they enjoy in the comparative freedom with which they can ramble over the country and enjoy the landscape.
~ Henry David Thoreau
(Journal, February 12, 1851)

the first touch of winter

The days move more swiftly now, too, with late dawns and early dusks. The days march toward the winter solstice like a winter farmhand with the wind at his back. And the long nights become the sleep of the earth itself, the rest, the waiting. The fox barks in the night, in the glitter of winter starlight. The deer shelter in the hemlock thickets on the mountain. The woodchuck sleeps, breathing only once in five minutes. And that hurrying wind whistles in the naked maples. November is at hand. This is the hurrying, impatient wind of winter that I hear in the night.
~ Hal Borland
(Hal Borland’s Book of Days)

the sea teaches me

10.11.20 ~ Avery Point Light, Groton, Connecticut

Sunday we took my favorite walk by the sea at the Avery Point campus of UConn. It’s good to visit on the weekends because parking isn’t restricted like it is during the week when students are in classes. There weren’t many people out and about, though, and the few people we encountered gave us a very wide berth. I think everyone is more cautious these days because southeastern Connecticut has become a coronavirus hot spot in the state, our numbers have been going up dramatically.

This sculpture was left over after the open air exhibition a couple of months ago. All the cairns were gone, however.

I need the sea because it teaches me.
I don’t know if I learn music or awareness,
if it’s a single wave or its vast existence,
or only its harsh voice or its shining
suggestion of fishes and ships.
The fact is that until I fall asleep,
in some magnetic way I move in
the university of the waves.
~ Pablo Neruda
(On the Blue Shore of Silence)

Flowers by the sea…

Project Oceanology Enviro-Lab Research Vessel

Although the main focus of Project Oceanology is educational, they do offer some public cruises. For years I’ve dreamed of taking one of the harbor seal watch cruises in March or April…

Canada goose ~ probably the closest I’ve ever got to one!

‘Twas a lovely hour-long walk all over the campus and now we’re tucked in for some rain. We might get an inch from the remnants of Hurricane Delta but we’re eleven inches behind normal. Our drought was elevated from severe to extreme. We’re going to need a lot of storms to catch up.

crickets

Further in Summer than the Birds —
Pathetic from the Grass —
A minor Nation celebrates
It’s unobtrusive Mass.

No Ordinance be seen —
So gradual the Grace
A gentle Custom it becomes —
Enlarging Loneliness —

Antiquest felt at Noon —
When August burning low
Arise this spectral Canticle
Repose to typify —

Remit as yet no Grace —
No furrow on the Glow,
But a Druidic Difference
Enhances Nature now —

~ Emily Dickinson
(The Poems of Emily Dickinson, #895)

New London County now has 1,499 confirmed cases of COVID-19. Of those, 3 people are in the hospital and 106 have lost their lives. That’s 66 new cases but 3 fewer in the hospital since August 9. College students are returning to their dorms and time will tell how well they do with social distancing.

to situations new

On that specific Pillow
Our projects flit away —
The Night’s tremendous Morrow
And whether sleep will stay
Or usher us — a stranger —
To situations new
The effort to comprise it
Is all the soul can do —
~ Emily Dickinson
(The Poems of Emily Dickinson, #1554)

This poem brings to mind the restless sleep or sleeplessness we might have the night before a new experience, like the first day of school or a new job. Or traveling to a place we’ve never been to before.

But I suspect Emily is talking about death. The specific pillow, the kind we find in a coffin, when death interrupts all our projects. Will we stay asleep in death or will we find ourselves in a new situation, an unfamiliar life after death? There are many “answers” to choose from but there is no way to “know” for sure. The universe is full of wonder and mystery. After years of spiritual struggle I’ve finally made peace with uncertainty, sometime in my 40s I think. Just this. Here/now.

in a garden of wisdom from some long ago dream

5.28.14 ~ Stonington, Connecticut — 5.28.14 ~ Kentford Farm, Stonington, Connecticut

Wednesday afternoon Janet and I found a new woodland garden to explore, Kentford Farm in Stonington, Connecticut. We seemed to have the place to ourselves, but for a very charming tortoiseshell cat who acted as our hostess. When we left we spotted a sign saying the garden was open Fridays, Saturdays and Sundays – unknowingly we had been trespassing! But the gate had been open so perhaps our confusion was understandable.

The last time we had a cat as our guide was four years ago in May at the the Edgerton & Stengel Memorial Wildflower Garden in the Connecticut College Arboretum.

We introduce ourselves
To Planets and to Flowers
But with ourselves
Have etiquettes
Embarrassments
And awes
~ Emily Dickinson
(The Poems of Emily Dickinson, #1184)

We will have to return as the seasons progress – it’s a perennial garden and there will be different things blooming every time we go. Please enjoy some of my favorite photographs. The plan was to travel light, with just the camera and not its bag, but it backfired on me when the camera battery died only about a third of the way through. Next time I will carry the whole kit and caboodle with me!

The wall is silence, the grass is sleep,
Tall trees of peace their vigil keep,
And the Fairy of Dreams, with moth-wings furled,
Sings soft her secrets to the drowsy world.
~ Ida Rentoul Outhwaite
(Tibetan Buddhism Deck:
Buddhas, Deities, and Bodhisattvas 30 Meditation Cards)

Way over yonder is a place I have seen
In a garden of wisdom from some long ago dream
~ Carole King
♫ (Way Over Yonder) ♫

Frequently the woods are pink –
Frequently, are brown.
Frequently the hills undress
Behind my native town –
Oft a head is crested
I was wont to see –
And as oft a cranny
Where it used to be –
And the Earth – they tell me
On it’s axis turned!
Wonderful rotation –
By but twelve performed!
~ Emily Dickinson
(The Poems of Emily Dickinson, #24)

In the woods too, a man casts off his years, as the snake his slough, and at what period soever of life, is always a child.
~ Ralph Waldo Emerson
(Nature)

The good Will of a Flower
The Man who would possess
Must first present Certificate
Of minted Holiness.
~ Emily Dickinson
(The Poems of Emily Dickinson, #954)