Survival often depends on a specific focus: a relationship, a belief, or a hope balanced on the edge of possibility. Or something more ephemeral: the way the sun passes through the hard, seemingly impenetrable glass of a window and warms the blanket, or how the wind, invisible but for its wake, is so loud one can hear it through the insulated walls of a house.
~ Elisabeth Tova Bailey
(The Sound of a Wild Snail Eating)
What a strange month August has been so far. After July ended with the distinction of being the hottest month ever recorded in North Carolina history, in stark contrast, the first 17 days of August never reached the average high temperature of 90. But the dew point has remained very high, giving me a new appreciation for the term warm and muggy. We’ve had a lot of rain and every day feels damp, dark and dreary.
On August 6 we spent two and a half hours seeing a pulmonologist and received an alarming diagnosis for Tim, interstitial lung disease. This finally explains his increasing shortness of breath and the cough, in spite of having all his heart disease issues addressed. We’re still trying to come to terms with all this new information and future uncertainties. It didn’t help having the washing machine and the air conditioning break down in the middle of things.
I’m more and more impatient for some better weather in the autumn so we can get outside again. In the meantime, as far as blogging goes, I distract myself with searching for and then pairing quotes and paintings, and have scheduled quite a few of them to be published many months from now. I’m making good progress with my resistance training, treadmill walking, and tai chi, but it’s not the same as walking among the trees. Work on my family history boxes has stalled.
Returning home from the laundromat early one morning I discovered these ghostly white things sticking up out of the moss in our front yard. My first thought was ghost plants but these are much smaller and don’t have a flower on top. I learned they are a fungus called clavaria. There may be 1200 species in the genus and I don’t know which species these are. They do seem to love my very damp moss garden, though.
A bluebird finally sat still long enough on our deck railing for me to get some pictures through the sliding glass doors! He seemed to be waiting for a pair of goldfinches to finish splashing around in the birdbath.
As my chronic illness is making it harder to plan long walks and spend much time away from my home, the way we spend our days is changing. Most of my walks are now taken on a new treadmill, so I don’t have to worry about the weather or ticks or the location of the nearest restroom. I’ve fallen in love with tai chi and have also started resistance training to strengthen my bones. Tim gets plenty of exercise at cardiac rehab three mornings a week.
None of those activities make for good photo opportunities, though! We still try to visit the botanical garden once a week, as it has bathrooms for me and benches for Tim. But since we have so many birds right outside our windows we have started trying to make our garden even more inviting for them. We now have a birdbath and a suet feeder and a cylinder feeder, all of which are visited often.
We even hung up a little birdhouse. And much to our delight we have both seen a chickadee flying into it, on two separate occasions, but have yet to witness anyone coming out of it, even though we wait patiently.
I so wished I could attend one of the Hands Off! protests on April 5th! I was there with everyone in spirit, but my illness prevented me from being there in person. It was very encouraging to see from news reports and social media posts that a sizable (5.2 million protestors) resistance to tyranny exists and my hope is that we will find a way to prevail.
Freeze warning this morning. I brought my new potted geranium inside.
When the Spring is in the offing,
And the early birds are freezing,
When one-half the folks are coughing,
And the other half are sneezing;
When the sun is getting higher,
Though the fact’s hard to remember;
And you huddle by the fire
Twice as cold as in December;
Life and all its cares would crush us,
Floor us in a brace of shakes,
If it weren’t for the luscious
Maple syrup on the cakes.
But a fellow keeps postponing
Day by day his preparation
For the final telephoning
For old Charon’s transportation.
Though he knows the Spring is lying
And his grippe is undiminished,
Still he does put off his dying
Till that can of syrup’s finished.
Then, at last, the north winds waver,
And the sleeping Spring awakes;
But we know the true lifesaver
Was the syrup on the cakes!
~ Walter G. Doty
(The Christian Advocate, March 22, 1917)
February wasn’t very kind to us this year. It started out well enough with a couple of nice walks but then we were hit with a couple of weeks of viruses, and several days of snowy, icy cold weather. Worrying about my sister’s worsening health problems has added to the feeling of the rug being pulled out from under our feet. But yesterday the temperature reached 71°F and we made a brief afternoon visit to the botanical garden.
We were looking specifically for the tiny sandhills pyxie-moss that we saw last year but were disappointed to see only one little flower on the clump. Maybe February was a bit too harsh for this ‘rare minute creeping subshrub,’ too. But we were happy to see some of our old friends from last winter.
Last year we had daffodils blooming in the woods behind our house on February 21. Not this year. I think the 3.5 inches of snow we got on the 19th, followed by days of cold temps, made them wait a week or so. But now they’re blooming! Today I’m dealing with malaise and the chills from my second shingles vaccination. But I hope to get back on track soon.
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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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.
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
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)
Finding the snail moving across the blue mushroom and then the patch of partridge berries simply filled me with delight!
The velocity of the ill, however, is like that of the snail.
~ Emily Dickinson
(Letter to Charles H. Clark, April 1886)
Skunk cabbages (above and below) were emerging everywhere near and in the water at the arboretum on our latest walk. Three difficult weeks had passed without a walk and it was such a relief to finally be outside again.
May you have the wisdom to enter generously into your own unease
To discover the new direction your longing wants you to take.
~ John O’Donohue
(To Bless the Space Between Us)
Our longings have taken us in a new direction. We have decided to move to North Carolina this summer to be near our grandchildren! It was not an easy decision to make as we’ve lived here most of our lives and love New England. I will also miss my sister and living by the sea.
Early in February we came down with our first head colds since before the pandemic began. (Our covid tests were negative.) Ten days of misery… And before he was fully recovered from his cold Tim was struck with a violent case of food poisoning. He’s okay now and we were grateful to finally take another walk!
In the arboretum there were plenty of signs of spring being right around the corner. January was the warmest one on record for Connecticut, with temperatures averaging ten degrees above average. I won’t be surprised to learn that February will be setting a similar record. Hey, if it’s not going to snow and be winter up north here we may as well move south, right?
While blowing my nose nonstop I kept busy online exploring the area that will become my new home, the Piedmont plateau region of North Carolina, the gentle rolling hills between the flat coastal plain and the Appalachian mountains. There are a lot of land conservancies, open spaces, state parks, botanical gardens, an arboretum and trails to keep us happy walking and exploring, at least when it isn’t too hot to go out. We suspect we will be more active in the winter down there. 🙂
There might even be more birds to see. But for this chilly and raw walk we were pleased to see a pair of hooded mergansers swimming and diving for food in the pond.
Thanks to a tag on this shrub, Alnus serrulata, I was able to identify these smooth alder catkins, flowers on a spike, another sign of spring.
The [smooth alder] flowers are monoecious, meaning that both sexes are found on a single plant. Male (Staminate) catkins are 1.6-2.4 in long; female (Pistillate) catkins are 1/2 in long. Reddish-green flowers open in March to April. … The ovate, dark brown, cone-like fruit is hard with winged scales. Seeds are produced in small cones and do not have wings. Fruit usually matures during fall and is quite persistent.
~ Wikipedia
I have to admit, thinking about the logistics involved to move is filling me with anxiety. The last time we moved was 29 years ago and that was just across town. Except for a couple of years living in Greece I’ve lived in Connecticut my whole life. When I moved to Greece with my parents I only had a trunk to fill and that was pretty simple. My parents took care of all the other planning. Now I’m coping with a chronic illness that is bound to complicate things. But we have family and friends helping us so I think we will make it somehow. And to be settled and living near our grandchildren while they are still very young will make it all worth it.
May you come to accept your longing as divine urgency.
~ John O’Donohue
(To Bless the Space Between Us)