The Time Has Come

After four years, Parkinson’s is winning, as we knew it eventually would. Gary has had several bad falls that have caused bruising, wounds and, finally, a broken hip on May 17. He has been back and forth between the hospital and the rehab facility, Hilltop, where he stayed in March and April after an earlier fall. Rehab wasn’t working, and when I met with an administrator she kindly recommended hospice care.

It seemed like it would be a hard decision, but it wasn’t, because his quality of life is so poor. He will remain in the same room, with the same staff, but with the addition of hospice services, and they will keep him out of the hospital so he doesn’t get disoriented with each ambulance ride.

Our 26th anniversary was May 31, but of course we couldn’t celebrate. I’m not sure whether he was in the hospital or Hilltop that day. He fell two days before my birthday, also not celebrated.

My goal, and the goal of the wonderful hospice and Hilltop staff, is that he be kept comfortable, safe and out of pain. I remember years ago when we talked about the ailments of aging, he repeatedly told me, “I do not want to be in pain.” I intend to honor that. When I go to see him the first thing I ask him is “Are you having any pain?” Since the hip and back surgery, he’s healed and doesn’t seem to be in pain.

He’s exhibiting every Parkinson’s symptom there is. He’s not eating much and his 6’1″ frame is down to 137 pounds. I discovered he eats better for the nurses and staff, so I’ve stopped going at mealtimes. He’s on supplemental calories as well.

I’ve put a picture of him as Clarence Darrow on a shelf in his room, and tell everyone about his amazing run of at least a dozen performances, a 90-minute monologue. His last few shows were after he was diagnosed.

When we were dating he told me he had two passions: theater and golf. Parkinson’s has robbed him of both. He is a good, kind, generous-spirited man with many, many friends who love him.

The hospice folder contained a booklet, “When the Time Comes.” It’s very helpful. I have so much to be grateful for as this chapter inevitably draws to a close.

I will try to share more as we go through this rather sacred time. I need to be fully present while still taking care of myself, my granddaughter, the dog and, of course Gary, with the help of caring professionals.

Superheroes

It’s been quite a while since I posted. On May 17, my husband had a fall that broke his hip and put him in the hospital, then rehab, then back to the hospital, and now he’s back in rehab.

His prognosis is uncertain. Because he had two surgeries (hip and spine) in two days, with general anesthesia both times, plus a mind-boggling array of medications, plus going back and forth between the hospital and the rehab facility several times, plus Parkinson’s, equals confusion and what might be considered post-op dementia.

Possible scenarios are recovery and returning home; not recovering and going into long-term care; or going in to memory care. Not having any way of knowing what the future holds, I’m taking it one day at a time, taking care of myself, my granddaughter and the dog, and keeping as close an eye on Gary’s care as I am able.

Each day since his fall, I have observed and interacted with dozens of caregivers: doctors, nurses (NPs, RNs, LVNs), care technicians, case managers, physical therapists, occupational therapists, social workers, administrative staff, even a hairdresser who cut Gary’s two-month growth of hair yesterday, and I have been overwhelmed with the kindness, professionalism and care they are providing.

Being a person who rails at overpaid stars and professional athletes, this strikes me as one of the great failings of our society. Yesterday, while I watched a man who weighs less than Gary wrangle him off the bed and into a wheelchair, with little cooperation from the patient, we chatted about the weather. We’re having triple-digit heat, and he said he wished it wouldn’t be so hot on his day off because that’s laundry day, and it’s hard getting his laundry to and from the laundromat.

That broke my heart. This sweet, slight older man, struggling to haul a much bigger guy into a chair, and he doesn’t even own a washer and dryer.

Meanwhile, overpaid brutes who could lift a patient into a chair with one hand are paid obscene amounts of money to provide no service whatsoever just to entertain the masses. Football, basketball, soccer, golf, tennis–all are fun sports to watch or play if that’s your thing, but what value do they add per dollar spent (much of which is taxpayer-funded in the form of lavish stadiums and arenas) compared to the folks who do the work of real value in our communities?

I have no solutions, other than awareness. But let’s remember to thank, appreciate and support our caregivers, teachers, grocery store workers, butchers, bakers, truck drivers, trash collectors, farmers and harvesters, utility workers (especially those linemen risking their lives after storms), first responders–you can add your own favorites.

If I ruled the world all sports would be amateur and some, the ones that cause brain damage, like football and boxing, would be abolished. If I ruled the world workers would be paid according to their actual value: daycare workers, mothers, healthcare workers, food producers–all the hard-working people without whom we couldn’t live our lives as we do. Football players? Rock stars? If they disappeared tomorrow we’d only be slightly less entertained, but we’d be safe in our homes with life’s necessities.

Don’t even get me started on gun violence.

Home away from home. It was built in 1963, so it’s a bit dowdy and dated, but it’s clean and pleasant and staffed with caring people.
The library, with a big selection of books and puzzles which, sadly,
we have not been able to enjoy so far.

Crying, Cursing, Pacing

One of my favorite Mark Twain quotes is “Eat a live frog first thing in the morning and nothing worse will happen to you the rest of the day.”

Well, I should have eaten that frog this morning. However, the disaster happened before breakfast, while I was fixing Gary’s oatmeal. Poking around in the pantry for something (I put lots of goodies on oatmeal, including brown sugar, raisins, blueberries and cream), I knocked a bottle of soy sauce onto the tile floor–and the mat for the dog’s dishes.

This is not abstract art. It’s an unholy, stinky mess, full of glass shards.

Junior, of course, wanted to lick that salty, umami splat, and I had to chase him away because it was full of tiny glass shards. Even my pink sneakers were splashed (they’re in the washer now).

I finished fixing the oatmeal, cleaned up, and finally had my breakfast (cereal).

One thing I know about Gary is that he hates it when I cry, and I suspect he dislikes my cursing. When that bottle flew out of the pantry onto the floor I did both.

Once after a fight in which I cried, he complained about my crying. I finally, after a lifetime of being told not to cry, lost it and told him I will cry whenever I need to, it’s one way I process stress, and he can deal with it.

I swear like Alex Trebek (who was famously foul-mouthed). I firmly believe that both crying and cussing are purgative and therapeutic and I have no intention of quitting either.

The other thing this disability/caregiving is teaching me is that I have to pace myself. There were three events yesterday I would like to have attended: a Celtic Festival (love those men in kilts, and their bagpipes too); an art opening at one of the local arts centers; and a concert by the chorale I used to sing in. Instead, the one outing I could summon the energy for was a necessary trip to the grocery store.

Crying, cussing, resting: resorative.

The Book, and Other Things That Get Me Through

In my recent posts I’ve tried to chronicle this difficult passage with my husband’s Parkinson’s and a teenage grandchild. After “Hard” and “Harder,” I figure “Hardest” is yet to come, so rather than spell out in detail all the stresses and sorrows of the past week, I’m going to share the things that keep me from totally losing it.

First, a quick update on the health situation in our household: Gary has compression fractures in two discs, and we’re waiting for a procedure to fix it, while wrangling with insurance about requirements for coverage. (I will only add that I hate the health care financing system in this country.) The granddaughter is up and down, as usual. I need to see a spine surgeon next week about my back issues! But they’re nothing like Gary’s and I’m functioning pretty well with pain that’s mostly annoying. The dog is doing well, but since his neutering he doesn’t want the long, long walks we used to take, which is actually better for me, too. (But I miss the long walks.)

OK, that out of the way, how I get through. A friend recommended a book, “How to Want What You Have.” I got it and thought, OK, I’ve read Eckhart Tolle, Brené Brown, Byron Katie, Matt Kahn–I’m up on the self-help guides, right? This book is older, published in 1995. The friend who recommended it had a husband with Parkinson’s, which is one reason I trust her advice.

It is one of those books that’s life-changing, that gets highlighted, re-read, and it will sit on my nightstand to pick up and open when I need it. It distills the ideas I’ve gleaned from the aforementioned writers into a brief, cogent directive in three words: compassion, attention, gratitude.

I won’t do an exhaustive summary of the book, but briefly, “compassion” means understanding that everyone pretty much wants the same things, and I am not better or worse than other people. (I tend to be judgmental, so this isn’t always easy for me.)

“Attention” is that old, and difficult, trick, mindfulness. He quotes Thich Nhat Hanh’s instruction about washing dishes: notice everything about washing dishes rather than letting your mind wander to what’s next. This one is easier for me because I’ve been practicing it for some time. It’s not just stopping to smell the roses, but also about noticing where your feet step and being acutely aware of every sensation.

Finally, gratitude. You can see your life as a struggle or a challenge. You can acknowledge that it’s both, and then be grateful for being able to face the challenge, that you have resources to help do that. When I consider the state of the world today I am incredibly grateful to live in a nice home in a quiet, peaceful town.

I highly recommend buying, reading, highlighting and re-reading this book.

Other gifts that help keep me sane are my Thursday morning art group, where I am loved and supported by some of the most amazing women I’ve ever known (plus actually making art!); knitting; reading; and taking those ever-shorter walks with our sweet Junior.

Who couldn’t love that face?

Hard, Harder…

Hardest is yet to come, I’m sure. How silly of me to think I could do a day-by-day chronicle. Even though his health generally continues to improve, Gary still has many challenges, as do I.

Most of the past week was spent with his visiting brother and sister-in-law. It was a little difficult adjusting schedules, but they were considerate and also provided delicious meals, and it was definitely good for Gary to spend time with family. They talked, reminisced and went through old photos.

During the week I was able to manage the following assistance: acquiring a wheelchair and a rollator (rolling walker); arranging weekly nursing care; getting twice-weekly physical therapy; and close to getting weekly non-medical support so that I can attend my weekly art group.

Our friends are so kind and have offered help in any way we can use it. For the most part I’m managing grocery shopping, errands and daily tasks. The tough part is not being able to call anyone to help with non-emergency but still urgent needs at 2 a.m. Fixing this is a work in progress.

The coming week will be our first real “new normal,” and I’m hopeful it will continue to improve. Gary asked me today if we had any jigsaw puzzles we hadn’t done, and it happens I bought one at a thrift store last year that was still sealed. I got it out and put a board on the table to work on it. We’ll see if we make any progress. I’d rather read, knit or do art, but if it keeps him company I’ll give it a shot.

Dahlias. It’s lovely but looks kind of tough.

I am still working through “How to Want What You Have,” and promise to provide my take on how it’s changing my life in a future post. For now it’s bedtime and a new week awaits.

Our New Normal, Day 1

There are three beings who depend on me: my husband with Parkinson’s, my granddaughter with multiple health issues, and the dog, who also had some health issues recently.

After many falls over the past few months, the one we knew would eventually put Gary in the hospital happened in mid-March. He spent five days in the hospital (including a blood transfusion for a huge hematoma from his butt all the way down his leg) and a compression fracture of the L1.

Then he spent two weeks in a skilled nursing/rehab facility. I was fortunate to have a choice, and this one checked all the boxes: they had a bed, took our insurance, came recommended by friends, and it happened to be the closest, 2 1/2 miles away. But even that was a tough slog, going a couple of times a day, spending an hour or so each time, along with taking the granddaughter to and from school, walking the dog, and all the other household chores that don’t go away. One nice thing was the facility allowed dogs once shot records were provided, so I took Junior a few times. He was a big hit with staff and patients!

The physical therapists and insurance having determined he could be discharged, Gary came home yesterday. So I thought I’d try to keep a chronicle of our new life.

Day 0, Going Home

They had discharge papers ready when I arrived; I signed a few documents, packed up the clothes and personal items I hadn’t taken home yet, and a staff member took him in a wheelchair to the car. (The physical therapist had given us a thorough lesson on car transfers a few days earlaier.)

He has a walker, and we are getting a wheelchair. My biggest terror, of course, is the danger of falling. I acquired a gait belt (something I had never even heard of before this), which will help me hang onto him when he gets up and down on the walker.

By good luck, this is Masters’ weekend, so he would be planted in front of the TV regardless of his health, which has given me a break.

I helped him brush his teeth and wash his face before getting him into bed. A shower will have to wait until tomorrow..

Day 1, Saturday

The dog and I got up early, took a long walk, and then I quietly checked on Gary to make sure he was still asleep, finally waking him at 9 to give him his morning meds.

It took nearly half and hour to dress him. It’s hard to put shoes on someone else! And he’s a big guy! He was able to get out onto the front porch and enjoy a little fresh air and spring sunshine.

Meals have gone well; he ate breakfast at the table and lunch in the living room while watching golf. This is a huge improvement; he could barely feed himself when he was in the hospital.

I needed to pick up the granddaughter and run an errand, and told him to stay put or, if he needed to get up, to do so very carefully–“nose over toes,” as the physical therapist taught him when he stands up. Most people normally try to stand straight up from a chair, but momentum is better if he leans forward, thus “nose over toes.’

I suppose things are going well, but I feel like I’m constantly in a hurry, and I’m also still living in fear of another fall.

Friends have offered help, and I intend to accept it when I figure out exactly what we need.

A friend whose late husband had Parkinson’s recommended a book called “How to Want What You Have,” by Timothy Miller. I’m reading it and highlighting passages. I think it will help me through this. More about it in another post.

In the midst of all this I had to go to Florida for my niece’s memorial service. It was a difficult trip, including canceled flights that delayed my return home (I had multple people covering for me), but I spent a few minutes on the beach. It was too cold to swim, but I did dip my feet into the Atlantic, a saltwater baptism I need every so often.

One of my favorite beaches, Flagler Beach, Florida

Totems, Talismans and Dreams

As the last year has brought many difficulties and crises into my little world, so it continues. My husband, who has Parkinson’s and has had several falls recently, had the bad one that put him in the hospital. He spent five days in our local medical center, even needing a blood transfusions because of a hematoma, and with a spinal compression fracture. Then he was transferred to a skilled nursing and rehab center, where he has been for the past few days. How long he’ll remain is unknown; he needs to get back his mobility and ability to care for himself.

I am blessed with several (overlapping) circles of people I care about and who care about me–my art group, our Unitarian Universalist congregation, and a dream circle I recently joined. (Our very conservative neighbors, who seem to have glommed on to our liberal views, not so much.)

In the dream circle yesterday I shared a dream about being on the edge of a canyon, with other people, short of water, needing to get to the other side. It was a very long way around. A man named “George,” (not my friend George), told me to just walk down the side and across and he would help me up the other side. So I did, and he did. The lesson I took was this: take the shortest and most direct path.

The dream group added to that, the lesson being: accept help when it’s offered. I mentioned that St. George is my patron saint (the patron saint of England), so maybe that’s who helped. When I told them he was said to have slain a dragon, our circle leader picked up a ceramic “dragon” (a lizard) and said, “Feed your fears to the dragon,” and thank St. George. I have brass rubbings of St. George, and I pulled out our own little ceramic lizard (not very dragon-like, but it will do).

The little ceramic lizard will be the “dragon” I feed with my fears. She can handle it, right?
My small rubbing of St. Geoerge
It’s hard to photograph since it’s on the wall. I did this rubbing in the brass rubbing center at Salisbury Cathedral. I hung these two pieces only recently.

One of my art friends gave me a Guatemalan worry doll. I named her “Pilar,” put her under my pillow, and had two of the best nights’ sleep I have in some time.

Pilar on my pillow

I read an article on Atlas Obscura about medieval pilgrims who wore badges (some of them quite bawdy) to ward off the plague and deter thieves. Thinking “how superstitious,” I found myself fingering the hematite heart that I bought in Inverness, Scotland, and have been wearing lately as a reminder of that much happier time, the day we went to Loch Ness and Urquardt castle.

My Inverness hematite heart

I told our minister about these bits of “magic,” and he quoted Starhawk’s definition of magic: “The art of changing consciousness at will.”

I wrote the first draft of this before I went to spend a couple of hours with Gary. I managed to help him get the TV working again, took him out to the patio (but it’s so hot and dry–90F today–it was pleasant only because a family was visiting a loved one, and they were very friendly), then set him up with his dinner.

I am tired, hungry, need to do laundry, and right now I’d take magic in any form it presents itself.

Will You Be on the Right Side of History?

I recently realized that there are people in my community—and probably in many others—who either don’t know what’s going on in Ukraine, or aren’t particularly interested if they have heard about it. I wonder if teachers are talking about it. This is living history!

A mad monster is trying to establish a Russian/Soviet-style empire by gobbling up Europe, bit by bit, and he’s doing it by shelling, bombing, shooting and killing innocent civilians—moms, dads, babies, grannies, people like you or me, your aunt your cousin or your grandmother.

Just think, three weeks ago Ukrainians were living lives much like yours and mine: working, taking care of their families, walking their dogs in the park, enjoying meals together, listening to music. Now millions of people have left Ukraine, with their children and pets and only what they can carry, traveling at great risk, in the cold, possibly being shot, to try to get to the border, while many stay behind to form a brave resistance, hunkering down, making Molotov cocktails, led by a heroic and so-far unbreakable president in Volodymyr Zelenskyy.

While we go about our daily lives, Russia is bombing maternity hospitals, killing children, destroying apartment complexes, shopping malls, shooting whole families as they try to flee.

And you’re worried about the price of gas?

I’ve also heard there are people who consider Putin a “genius,” the answer to the prediction of the End times, a brilliant strategist.

Putin is an ex-Soviet KGB agent who kills his enemies, especially those who speak out against his atrocities.

It took six years to remove Hitler, and in that time he was responsible for the deaths of millions of people and massive destruction across Europe.

And you’re worried that gas prices will fuel inflation?

Americans are spoiled. I can say that as someone who is both American and English. My family survived the Blitz (my father was in the Royal Air Force). My mother remembered German bombers dropping their leftover bombs down the High Street of our little town on their way back to Germany after trying to destroy London. After the war (in my lifetime—I was born soon after VE-Day) we had rationing for many years—shortages of meat, milk, fresh fruits and vegetables, sugar, and especially other luxuries, which we received from friendly Americans who brought us Hershey bars, Wrigley’s gum, alcohol and cigarettes from the PX. We didn’t have to worry about gas prices because we didn’t have cars—nobody I knew did. We had bicycles. If we needed to go farther than a bike ride, we took the bus.

When we left England in 1953, London was still in ruins—whole city blocks were just rubble. We thought the streets in America would be paved with gold, and in a way they were. For years after we moved here, I would ask permission to get a glass of milk from the refrigerator. (In England we didn’t have a refrigerator, nor a washing machine or dryer, or central heating.) But we didn’t feel poor or deprived. We had food and shelter, basic as it was, and it was enough.

So we have painful gas prices? We will still get food. Inflation will get worse; maybe we’ll learn to drive less, economize on what we eat, plant a garden, even (heaven forbid!) suffer actual deprivation.

I don’t have answers to end this horror; finer minds than mine are working on it and haven’t come up with anything. I heard a Russia expert say that she didn’t have a best-case scenario; the best she could come up with was that Putin gets a symbolic “victory” in Ukraine and then eventually dies (the unspoken message, I think, is that he will be taken out, either by his side or ours). He and his cronies should be tried for war crimes.

I write this to raise awareness of the dead seriousness of this situation, and gas prices, food shortages and other “sacrifices,” are a small price to pay if it helps prevent a return of a Soviet-style hegemony in Eastern Europe, and greater loss of lives.

If you doubt any of this, check independent news sources. Fox news is covering this war. You can see a video on Fox of a Ukrainian-born Congresswoman pleading with the U.S. and the West to do more. If you are unfamiliar with the history of Hitler, World War II, or the terrifying power of the U.S.S.R., I urge you to read history, to study the map of Europe. Ukraine matters, whether you like it or not.

My 15-year-old granddaughter said, a few weeks ago, “I’m tired of living in such historic times.” She has experienced two years of a pandemic and now possibly being on the brink of World War III, even nuclear war.

People in Poland are greeting Ukrainian refugees, asking “What can we do? How can we help?”

I’m wearing blue and yellow ribbons to raise awareness of this global crisis, if people ask about them I will say: “Do you want to be on the right side of history?”

What can you do? How can you help?

A meditation card, a reminder of Ukraine’s sorrow and bloodshed

Clinging to Sanity

As soon as my granddaughter gets out of the car at school I turn NPR on. And cry most of the way home. Crying for Ukraine, for the world, even crying for the deer I hit a few weeks ago. I know there are too many deer in the Hill Country; I know they’re destructive and dangerous. It did no damage to my car, but I still have this image in my head and keep thinking “I broke the deer.” It’s like the auto accident we had in September, which still replays in my mind. (And for which insurance is still not settled.)

The past weekend was one of the worst I’ve ever experienced, and the world situation was only part of the awfulness. Once again I will spare the details, but it began with about seven hours in the ER Friday, and went downhill from there. Saturday was utterly exhausting, and I spent Sunday and Monday trying to catch up with neglected tasks. Today I’m hoping for a little time for my own things, so I begin with writing this.

In the middle of these dreadful times, I try to find tiny ways of maintaining a bit of calm and sanity:

  • Keeping at least a semblance of order. Dishes get washed, meals are prepared and eaten, floors are swept and laundry (mountains and mountains) gets done. A restocking trip to the grocery store yesterday was highest priority.
  • Meditating, mostly when I walk the dog, while also getting needed exercise. I am trying to return to praying, an ability I lost when my granddaughter was in the hospital last fall. Funny, many people were praying for her then, and I concluded the Universe was going to do what it was going to do, whether she survived or not. She did, and for that I’m grateful. Sunday’s sermon (which I had to watch on Zoom) was about praying, and I asked the minister for the text, which I’ll print, read and re-read.
  • Excellent health insurance and generally excellent medical care (although I have doubts about the ER doc who treated my husband Friday afternoon and evening). Thanks to good medical teamwork and better pharmacology, my granddaughter’s health is improving.
  • A warm, safe and comfortable home in a pleasant neighborhood.
  • Caring and kind friends and neighbors.
  • Escaping to reading, art, knitting, and writing, when I can grab a little time. I have packed an “ER emergency kit,” with a book, a small knitting project, trail mix, water and a hoodie (for the always-freezing rooms). Must remember to throw in a phone charger on the way out. (It’s pretty certain there will be a next time.)
  • Spring will arrive soon. It’s been a really strange winter, with below-freezing nights and often sunny, mild days. Not complaining, especially considering the awful winter the northeast is having, but I look forward to uncovering the porch plants and welcoming the hummingbirds’ return.
  • Small bits of self-care. I managed to get a haircut and a pedicure last week by sheer dumb luck! Both were way overdue, and a little pampering goes a long way.
  • Flowers. Nobody ever, and I mean ever, buys or sends me flowers. The last time was probably when I was working, and I’ve been retired for 12 years. So I decided I will just buy my own. The floral section of our local grocery store is the second-to-last department (before frozen food), so I pick up a bunch or two, worth the small cost.
Sunflowers and blue vase are for Ukraine; the red gerberas are just pretty and I like the three primary colors, and the way the stained glass window almost matches the bouquet.

Wishing everyone peace and calm in this troubled world, and for the strength and resilience of the Ukrainian people to somehow bring down the evil that is trying to prevail.

A Confession and a Decision

As hard as I try to keep up an upbeat, positive attitude, filled with gratitude and “handholds of joy,” the truth is some days are really, really hard. After being awakened yesterday at 3 a.m. and again at 4 a.m., I cried from six till about 10 a.m.

For their privacy, I don’t like to go into details about my family members’ health issues. Suffice it to say they are challenging, scary, exhausting and cause me so much stress that I sometimes wonder why I don’t get sick myself.

I had a wonderful long chat with my sister-in-law recently. She is my late brother’s widow, and she was his caretaker while he was dying of non-Hodgkin’s lymphoma, while also working as an English professor. She said people often asked her how she did it, and she answered “I don’t know. I just do it. Put one foot in front of the other.” That is exactly how I answer the same question.

But a wonderful thing came out of that conversation. I mentioned that I was thinking about writing a memoir, and she said she is too! I suggested we that be writing partners. We are going to share pieces as we write. Since she’s an English professor and I’m a writer and poet, I have no fear that we will find each other’s work unreadable.

My working title is something like “My Life in 27 Places.” I have had 27 addresses in my life so it’s fitting. Hers is related to food. She’s Italian after all! I used to comment that I was so glad my brother, of our dour, stiff-upper-lip English family, married into a big warm Italian one.

I started a few chapters some years ago, and I’m beginning the outline now, which is pretty straightforward since I know how many chapters there will be!

Don’t ask me how I’ll do it, or if I’ll have time. Writing, reading, walking the dog, knitting–these are solace for me and I’ll find time in odd moments.

My happy, happy place. The nights are very cold but we’ve had some beautiful mild afternoons. These shots were taken yesterday. That tiny figure between the trees is my husband picking up a tennis ball for the dog.
Interesting shadows.

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