memory – 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.

🍂

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!

🍂

to the blessed light that comes

“Woodland Stream in a Winter Landscape”
by John Henry Twachtman

I cannot tell you
how the light comes.
What I know
is that it is more ancient
than imagining.
That it travels
across an astounding expanse
to reach us.
That it loves
searching out
what is hidden
what is lost
what is forgotten
or in peril
or in pain.
That it has a fondness
for the body
for finding its way
toward flesh
for tracing the edges
of form
for shining forth
through the eye,
the hand,
the heart.
I cannot tell you
how the light comes,
but that it does.
That it will.
That it works its way
into the deepest dark
that enfolds you,
though it may seem
long ages in coming
or arrive in a shape
you did not foresee.
And so
may we this day
turn ourselves toward it.
May we lift our faces
to let it find us.
May we bend our bodies
to follow the arc it makes.
May we open
and open more
and open still
to the blessed light
that comes.
~ Jan Richardson
(How the Light Comes)

under the trees

8.21.24 ~ eastern tiger swallowtail
Cedar Falls Park, Chapel Hill, North Carolina

We are all woodland people. Like trees, we hold a genetic memory of the past because trees are parents to the child deep within us. We feel that shared history come alive every time we step into the forest, where the majesty of nature calls to us in a voice beyond our imaginations. But even in those of us who haven’t encountered trees in months or even years, the connection to the natural world is there, waiting to be remembered.
~ Diana Beresford-Kroeger
(To Speak for the Trees: My Life’s Journey from Ancient Celtic Wisdom to a Healing Vision of the Forest)

At last! A day arrived with low humidity and a chance for a walk in the woods. Though I was tempted to visit the botanical garden I was drawn here to visit a new-to-us park we had discovered some time ago while out running errands in the heat. We found lots of interesting things growing under the trees in this lovely park.

Asiatic dayflower (beautiful but invasive)

The trees at Cedar Falls Park are typical of an upland forest in the Piedmont, with oak and hickory predominating and here and there a pine tree. Second growth trees with a brushy understory line both sides of the trails near the northern part of the park.
~ This Way to Nature website

sweet-gum seedling
(thanks to Debbie for the identification)

upside down indigo milk cap with a tiny snail

They would worry about wearing me out, but I could also see that I was a reminder of all they feared: chance, uncertainty, loss, and the sharp edge of mortality. Those of us with illnesses are the holders of the silent fears of those with good health.
~ Elisabeth Tova Bailey
(The Sound of a Wild Snail Eating)

The march of human progress seemed mainly a matter of getting over that initial shock of being here.
~ Barbara Kingsolver
(Animal Dreams)

a puddle of water left in Cedar Fork Creek

Finding the snail moving across the blue mushroom and then the patch of partridge berries simply filled me with delight!

throwback thursday

5.24.23 ~ Tim on the *Charles W. Morgan*
Mystic Seaport, Mystic, Connecticut

A year ago we were busy packing up to move to North Carolina and visiting as many of our favorite places in Connecticut as we could get to before we had to leave. This post was meant to be about the last one of those visits, but I ran out of time to get it written and posted. Mystic Seaport is an amazing living history maritime museum and it was also the venue for many special exhibits, performances and festivals that we enjoyed over the years.

The Charles W. Morgan is the main attraction, the last wooden whaleship in the world, and a National Historic Landmark. (more information here) It was a 15-minute drive from our home and we were long-time members of the Seaport. In fact, my parents were members and brought me here often when I was growing up, when we lived an hour away.

deck prism lying flush in the deck,
it refracts and disperses natural light into the space below deck

Life onboard consisted of long periods of boredom; for weeks, even months, no whales would be seen. The crew would repair gear, write letters, play games and music, and carve scrimshaw — pieces of whale bone or tooth — to pass the time.
~ New Bedford Whaling website

Whaling voyages lasted about three years. I was watching Space: The Longest Goodbye on PBS’s Independent Lens the other night. NASA is concerned about the mental health of astronauts being separated from their families for a three-year mission to Mars. The space explorers are not going to able to communicate with loved ones in real time! As if families have never had to do this before… Many of my ancestors did.

whale blubber was cooked in big iron pots above deck,
the extracted oil was stored in casks below deck

Every year on July 31-August 1 there is an overnight event on the Morgan, a marathon reading aloud of Moby Dick by Herman Melville. I regret we never managed to participate! In the Seaport Village, Schaefer’s Spouter Tavern was named for the one found in the classic American novel.

many pleasant summer evenings we spent outside dining and listening
to live acoustic musicians performing outside at Spouter Tavern

Our final visit to the Seaport would not be complete without a visit to the Small Boats building.

spritsail boat built by my 2nd-great-granduncle,
Edward Ellsworth Swift (1861-1964)

I was 7 years old when Uncle Ed died at the age of 102. My grandparents, the late Mr. & Mrs. John E. White mentioned above, took care of Uncle Ed & Aunt Flora in their old age. My grandparents were also caring for my great-grandparents at the same time and I well remember our countless visits to the six of them at the house on School Street in Woods Hole on Cape Cod.

I will miss my visits to the little boat my grandparents donated to the Seaport, which connects me across time to my ancestors.

So many memories: live music performances we attended, the visits of the Íslendingur (2000) and the Draken Harald Hårfagre (2016) Viking ships and how excited we were when the Draken decided to stay, the yearly By Land & By Sea Antique Vehicle Show, the exciting Viking Days encampment, the restorations of the Mayflower II and the Amistad, making and printing our own Christmas cards at the village Print Shop, watching costumed historians cooking on open hearths, blacksmiths at work in the forge, and so many more. The Sargent, Whistler, & Venetian Glass: American Artists & The Magic of Murano special exhibit we saw in February 2023 was unforgettable!

image credit: Ukrainian Dancers USA ~ 8.20.22

An extra special memory is an Arts on the Quad evening, when we took Katherine to see Ukrainian dancers at Mystic Seaport, seen above performing on the porch of the Thompson Exhibition Building. We were so very lucky to live so close to this treasure trove of history and culture. It is deeply missed.

throwback thursday

Yesterday I posted a picture of a tiny cone on a hemlock tree struggling to survive at the North Carolina Botanical Garden. Today I’m sharing a picture my sister took last week back home in Connecticut. The snow covered branches belong to one of the few remaining hemlock trees my brother-in-law has been fighting to save.

And below is an illustrated poem someone shared of Facebook, Dust of Snow, written by Robert Frost.

Playing around and meditating under the hemlock trees in winter kept my heart full of joy all the winters I spent growing up there!

moderate drought in the woods

We are now in a moderate drought and the weather people say that this has been the driest November here on record. I have nothing to compare it to, but am hoping the squirrels are finding enough to drink. On this lovely autumn day we took another trail in this forest, named Wormhole Spur.

It was one of those magical fall days when the leaves were drifting down in great numbers, floating through the air like snowflakes in a snow globe, almost sounding like raindrops when they landed. We’re thoroughly enjoying our autumn days, now that they’ve arrived.

this small branch was catching falling leaves *and* pine needles

fallen leaves resting on a mossy fallen tree

When we got back to our car we found it surrounded by wonderful burnt orange leaves. Almost 10 years ago we bought what we thought would be our last new car. ~ 2014 Subaru Impreza ~ Since I wrote a post about that one and since we wound up getting this new car in October, I decided to post a picture of this one, too. It’s color name is celestite (a mineral), chosen because my sister is a geologist. 🙂

of the cold

How happy I was if I could forget
To remember how sad I am
Would be an easy adversity
But the recollecting of Bloom

Keeps making November difficult
Till I who was almost bold
Lose my way like a little Child
And perish of the cold.

~ Emily Dickinson
(The Poems of Emily Dickinson, #1080)

The first days of November arrived here cold! One morning it was 29°F (-2°C)! With afternoon temperatures around 80°F on the last days of October this was quite a jolt of weather whiplash.

I’m pleased to introduce you to Fred, our friendly neighborhood squirrel. Tim has been feeding him walnuts. Most of the time he runs off with them, presumably to store them somewhere, but once in a while he sticks around and lets us watch him eat it.

The gray squirrel (Sciurus carolinensis) is hereby adopted as the official State mammal of the State of North Carolina. (1969, c. 1207.) § 145-6.
~ North Carolina General Statutes – Chapter 145

When he hears us opening the front door he will come up to the porch to see if a walnut will be rolled out to him. He’s not brave enough to come any closer — not yet. But Tim has a way with squirrels, so…

ancestral remembrance

*The Artist’s Parents* by Felix Vallotton

We achieve some measure of adulthood when we recognize our parents as they really were, without sentimentalizing or mythologizing, but also without blaming them unfairly for our imperfections. Maturity entails a readiness, painful and wrenching though it may be, to look squarely into the long dark places, into the fearsome shadows. In this act of ancestral remembrance and acceptance may be found a light by which to see our children safely home.
~ Carl Sagan & Ann Druyan
(Shadows of Forgotten Ancestors)

our four dozen anniversary

May 10, 1975 ~ Tim & Barbara
Ashford, Connecticut

Today we’ve been married for 48 years, or as Tim is saying, it is our four dozen anniversary. 🎕 It was a small, down-to-earth and unpretentious wedding, outside, of course, in the garden of a justice of the peace.

My sister was my maid-of-honor, shown here at the small reception my parents hosted in their back yard. As I’ve mentioned before, my little sister grew up to be taller than me. For a couple of years we were the same height and were often mistaken for twins.

While sorting through all our stuff last month I came across my mini wedding album. I hadn’t seen it for years and was happy to discover that it hadn’t been lost as I had assumed.

Tim often introduces me as his first wife, which still makes me smile. His sense of humor is one of the many things I still love about him, after all these dozens of years. 💕