body – 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)

to the nature center

3.31.22 ~ Denison Pequotsepos Nature Center
Mystic, Connecticut

While she was visiting last week we finally got a chance to take our granddaughter, age 7, to the Denison Pequotsepos Nature Center! She was all set with her camera and water bottle and we played follow the leader as she explored the place at her own pace. Sometimes we struggled to keep up but she was patient with us and we would catch up and so we had a fantastic time. 😊

Kat playing a bird species memory game with Grandpa

After exploring the indoor exhibits we headed outdoors to see the birds in the rehab enclosures. We even got to see a staff member feed the raptors dead mice. It was difficult getting pictures through the wires but these two were acceptable.

For many decades the Denison Pequotsepos Nature Center has been licensed by the U.S. Department of Fish and Wildlife to care for injured wild animals. We are part of a region-wide network of wildlife specialists that handle emergencies and help seek appropriate care for injured wildlife.
~ DPNC website

Next we followed a trail and spotted a Canada goose sitting on her nest on a hummock in the middle of a pond. Nearby her mate was patrolling the area.

Kat probably took more pictures than I did!

Our minds, as well as our bodies, have need of the out-of-doors. Our spirits, too, need simple things, elemental things, the sun and the wind and the rain, moonlight and starlight, sunrise and mist and mossy forest trails, the perfumes of dawn and the smell of fresh-turned earth and the ancient music of wind among the trees.
~ Edwin Way Teale
(Circle of the Seasons: The Journal of a Naturalist’s Year)

moss-covered glacial erratics are always fun to capture

time to stop taking pictures and start consulting a map

Kat led us back to the nature center and to the parking lot, checking rocks along the way to find dry ones for Grandpa to sit on for his rests. The occasional benches were welcome, too. She is a very curious, thoughtful and kind little sweetheart.

stone wall and daffodils across the road from the nature center

Here are two posts from the past illustrating Kat’s keen interest in maps: here (5th picture, age 4) and here (2nd picture and others, age 2).

The three of us had such a wonderful morning at the nature center! 💕

comfort

Sometimes I think it must have been much easier to live and die at the time of our ancestors, the Vikings. When they buried their relatives, they also buried many objects together with the body. This was to be sure that the dead would not miss anything in their new environment. It also an assurance for the family members who remained that they would not become obsessed with spirits of the dead and constantly be reminded of them because their possessions were still scattered all over the tent or mud hut. Very clever.
~ Margareta Magnusson
(The Gentle Art of Swedish Death Cleaning: How to Free Yourself & Your Family from a Lifetime of Clutter)

7.13.18 ~ Eastern Point
my camera decided to go Impressionistic for this distant cormorant

You might guess from my recent choice of reading material that I’m still struggling with the objects and possessions I inherited from our ancestors. Things started piling up around 2008. Hard to believe it’s been 10 years! I have managed to dispose of a lot of stuff but cannot rest on my laurels. What’s left is stacked halfway to the ceiling in a corner of what is supposed to be the genealogy/guest room. The corner takes up almost half the room.

there are three cormorants in this picture,
which I didn’t realize until I saw the picture enlarged on the laptop

Trouble is, life (births, illnesses, travels, weddings, visitors, deaths) keeps happening and I need a good chunk of uninterrupted time to roll up my sleeves and dig in. Now that there is a lull in the stream of summer activities I am annoyed by the droning of the air conditioners. But I since learning about the autism I am aware now that I am much more sensitive to noise than neurotypical people, so, I will wait patiently for some cool, dry, quiet weather to return.

7.12.18 ~ Grandmother Elm ~ Stonington, Connecticut

We enjoy going to estate sales. We rarely buy anything but a few days ago we found a large file cabinet in excellent shape at a great price. It is now in the genealogy/guest room waiting for me to make use of it. After my grandmother died my grandfather offered us anything we wanted in the house. I chose my grandmother’s mahogany secretary which I still have and treasure. Grandfather said he didn’t want us grandchildren to be burdened with all the stuff. I don’t want my children to be burdened either.

I’m also sad about the changes at my beloved beach. The city has installed a gull repellent system. Every three minutes a recording of a gull in distress blares out from the loudspeakers. There are maybe two or three fearless gulls left on the roof of the beach house. All the laughing gulls are gone, all the different kinds of gulls are gone. I suppose I will never see my friend with the mangled foot again. It’s all too much for me to bear and I’ve been reduced to tears more than once this summer.

I visited my elm tree, Grandmother Elm. I cannot believe it’s been 5 years since I have gone! I used to visit all the time when Tim’s brother was living with us, the year he died here of cancer. Now she has small stems and branches growing out at the base of her trunk, covered with leaves. When I read The Hidden Life of Trees by Peter Wohlleben I believe he said this was a sign of distress. No other tree in the cemetery was like this. Perhaps she is suffering, too. Still, her wordless wisdom comforted me.

white flowers of the night

mykolapymonenko-ukrainian-night-1905 — “Ukrainian Night” by Mykola Pymonenko

But here there was not a sound, and the air was scented with the white flowers of the night. It was a night so beautiful that your soul seemed hardly able to bear the prison of the body.
~ W. Somerset Maugham
(The Moon & Sixpence)

Night, the beloved. Night, when words fade and things come alive. When the destructive analysis of day is done, and all that is truly important becomes whole and sound again. When man reassembles his fragmentary self and grows with the calm of a tree.
~ Antoine de Saint-Exupéry
(Flight to Arras)

great public grounds

“Portrait of Frederick Law Olmsted”
by John Singer Sargent

The enjoyment of the choicest natural scenes in the country and the means of recreation connected with them is thus a monopoly, in a very peculiar manner, of a very few, very rich people. The great mass of society, including those to whom it would be of the greatest benefit, is excluded from it. In the nature of the case private parks can never be used by the mass of the people in any country nor by any considerable number even of the rich, except by the favor of a few, and in dependence on them. … Thus without means are taken by government to withhold them from the grasp of individuals, all places favorable in scenery to the recreation of the mind and body will be closed against the great body of the people. For the same reason that the water of rivers should be guarded against private appropriation and the use of it for the purpose of navigation and otherwise protected against obstruction, portions of natural scenery may therefore properly be guarded and cared for by government. To simply reserve them from monopoly by individuals, however, it will be obvious, is not all that is necessary. It is necessary that they should be laid open to the use of the body of the people. … The establishment by government of great public grounds for the free enjoyment of the people under certain circumstances, is thus justified and enforced as a political duty.
~ Frederick Law Olmsted
(America’s National Park System: The Critical Documents)

teaching our children

This might be a good time to remember that we should not be asking why “real” food costs so much, but rather, why is processed food so cheap? This reminded me of one of my posts from last year – facts and figures about how we spend money on food that truly startled me when I first learned of them. See: food shopping. Yes, we need to teach our children well!

sweet saliva

"Elderly Woman" by Domenico Ghirlandaio (1449-1494) Italian Early Renaissance Painter — “Elderly Woman” by Domenico Ghirlandaio

The physical atoms that make up your body have been completely replaced in the past nine years. Yet you remain. You may feel the effects of age, but your spirit is always renewed in each and every moment. Remember this when you are tired or ill. Let each breath renew your spirit.
~ William Martin
(The Sage’s Tao Te Ching: Ancient Advice for the Second Half of Life)

What a long and strange month this has been.

It all started in North Carolina during a conversation with a nurse, a friend of Dima & Larisa’s, about the side effects of statin drugs. Suddenly I had a hunch that all the increasing pain in my muscles in recent years was probably not due to aging but was related to taking one of these drugs since 2011. I stopped taking it and within a week the pain was gone.

So my thoughts turned to another drug – amitriptyline. After years of suffering chronic migraine that only got worse when I reached perimenopause, I was sent to a neurologist, who gave me a prescription for a relatively high dose of amitriptyline as a preventative measure, coupled with a prescription for Zomig, to abort the headaches that broke through that first line of defense. That was in 2006 – nine years ago!

The side effects of amitriptyline are well-known to me. The dry mouth, constipation and weight gain – 50 lbs in 9 years! – were all nuisances worth putting up with to avoid a migraine. But now I started thinking, I’m well into menopause, perhaps I don’t need the amitriptyline so much any more. And so began my unpleasant journey through withdrawal symptoms. I cut my dose in half for a couple of weeks and then quit it completely. Perhaps this was too fast and a little too reckless.

The first thing I noticed was a blessing – saliva production! Oh what a precious gift to be able to moisturize my mouth naturally again! Talk about a feeling of restoration and renewal…

But the nausea, malaise and fatigue have been most unwelcome and difficult to live with. Still, I’m determined to continue and to make it through this miserable ordeal. I’ve been allowing myself extra sleep and long naps, with the idea of healing this body. Less than two weeks remain before our trip to Europe and I do finally seem to be feeling a little better each day. I’m not getting any more headaches than usual and the Zomig continues to take care of them, so that’s a relief. That result alone has made this experiment all worth it.

Last night while reading I came across the quote above. It made me smile at the mention of nine years because that’s how long my physical atoms have had to grow accustomed to amitriptyline. Also, it makes me happy to know that they will steadily be replaced with a new set of molecules over the next nine years. Lots of time for regeneration…

delightful dots

1.17.15.2626 — Katie and Barbara ~ 1.17.15 ~ Billerica, Massachusetts

Grandchildren are the dots that connect the lines from generation to generation.
~ Lois Wyse
(Funny, You Don’t Look Like a Grandmother)

a quiet moment with Grandpa Tim
1.17.15 ~ Billerica, Massachusetts

Saturday we spent the day north of Boston, visiting Katie, who was visiting some friends there with her mother. Katie the observer, she is definitely an observer, bright-eyed and curious. She had grown a lot in the month since we saw her last.

Things have been relatively quiet around here. We’ve postponed some plans because a few relatives and friends have caught that severe flu going around. I haven’t had the flu since 1988 and I hope to keep it that way! We get flu shots every year, but this strain mutated and this year’s vaccine is only about 33% effective.

And the nursing home where my aunt lives is under quarantine, because of the flu outbreak, which may interfere with our plans to celebrate her 100th birthday on the 30th. So far she hasn’t caught it.

happy child — happy Katie ~ 1.17.15 ~ Billerica, Massachusetts

Zoë, who normally has excellent litter box habits, got the trots. Poor thing was doing her best to get to the box on time but we had a day of cleaning up after her. She wouldn’t eat and she didn’t want to be around us, but she is now back to her hungry, sweet, affectionate self.

And so I am enjoying my winter rest, puttering around the house, watching the birds, wishing for a little more snow, pruning my family tree (still), and making travel plans. My eyes get very bleary reading these travel guides……

We find delight in the beauty and happiness of children that makes the heart too big for the body.
~ Ralph Waldo Emerson
(The Conduct of Life)