All posts by housesandbooks

Ex-journalist who enjoys writing and travel. I spin, knit and weave, and bake a tremendous apple pie. My politics are based on ethics and compassion for the poor. My only religion is kindness to others.

Food? or vile glop?

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Last week I was having problems with my digestion, so I stopped eating for a few days. The kind folks at Hospice were alarmed, and sent over a sack filled with different kinds of nutritional “foods” that are designed to keep the life-force strong. Hospice had the very best of intentions, and I am grateful for their concern. Although I do not wish to malign them in any way, the stuff they sent over was not real FOOD. In fact, I’m outraged at the idea that they feed this stuff to dying people.

The first three ingredients in the so-called “pudding” are water, sugar, and corn maltodextrin (a heavily processed starch with a high glycemic index). Yum, yum. Moving on to the ersatz “shake,” the first three ingredients are water, corn maltodextrin (again) and sugar. And as for the alleged nutritional apple-flavored “juice” (which bears the warning “Contains no apple juice”), the main ingredients are water, sugar, and corn syrup solids. For the sake of comparison, a Milky Way candy bar contains 37 grams of total carbohydrate. The fake “juice” contains 43 grams of total carb, which makes it significantly sweeter than the candy bar. But wait: the “shake” contains a whopping 52 grams. The “pudding” wins the carb battle with a moderate 30 grams, which is approximately the carb equivalent of three-and-a-half Oreo cookies.

What the hell is going on here? Why is this stuff being pawned off on the ill and elderly? For that matter, why is the worst food in town found at the hospital, where they dole out high-sodium, high-carb, high-junk-ingredient glop to patients and guests?

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I understand that our local city hospital is now part of a corporate empire, which by appearances is so concerned with making a profit that the emergency room is now completely devoid of old magazines to page through while waiting. I understand profit and loss. And yet, why is a place that’s supposedly dedicated to saving people’s lives, and restoring health, apparently in partnership with the sugary-fake-foodstuff manufacturers?

It takes very little money to make the best therapeutic comfort-food possible, the same food that has nourished sick people for thousands of years, a nutritious foodstuff that lacks known allergens and causes no sensitivities. I’m talking about chicken broth, which is as easy to make as a salad (just more time-intensive). Instead of pushing these egregious false “foods” upon ill people, the hospital would be well advised to have someone come in two or three times a week and simmer 30 gallons or so of chicken broth. (And a pot of veggie broth too, for our vegetarian/vegan friends.) I make broth at home all the time. And despite feeling wobbly, I even made some three days ago when my own supply of frozen two-cup servings ran low.

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Soup is good food. Pudding can be good food too, if it has real milk and egg in it. Shakes can even be good (ice cream is, after all, quite nutritious.) And juice is good, assuming that it actually contains real juice. But this swill (I don’t know what other word to call it) from Hospice is completely vile. It’s not real food, only a collection of starches, sugars, artificial flavors and nutritional powders all mixed into water. Maybe someone who spends their life eating at fast-food joints wouldn’t object to eating Ensure products, but I do, because I know the difference between real food and fake food.

I wouldn’t feed this stuff to a dying animal, let alone a dying human being. If you agree, let the hospital management know. Or snipe at them via social media until they begin to pay attention. I think it’s time for a food fight! 

The most difficult question

20141027_101624Doctor-assisted dying is not a choice for ill people in my state. Nor is it an option nationally, as it is in Switzerland, Belgium, the Netherlands and several other more enlightened countries.

Many people will immediately protest: “But obviously, suicide should never be legalized or encouraged.” To which I reply, as a person with terminal cancer, “My desire to take an early exit is a completely different thing than a healthy person who commits suicide.” I want only to hasten the inevitable and painful death that already looms on my horizon; I do not seek to end a healthy life filled with possibilities.

Speaking rationally and without depression, and after a lifetime of considering the ethics of the question, I would choose physician-assisted dying in a heartbeat, knowing what I am soon to endure. But it’s not legal here.

(Warning: skip the following single paragraph if you are easily horrified.)

I have carcinosarcoma, also called Malignant Mixed Mullerian Tumor, which is so rare that there is little research being done on it, and no cure. After living with it for a year and a half and enduring major surgery and various chemotherapies, I’m now in the terminal stage of the disease. The cancer has spread throughout my abdomen and into my liver and lymph glands, but this won’t be what kills me. A large inoperable tumor is embedded low down between my intestines and is impinging painfully upon my bladder and rectum. The rapid growth of this tumor will soon pinch off these vital systems and leave me completely blocked, unable to urinate or defecate. The tumor is growing so fast that my belly already resembles that of a woman five or six months pregnant; this distension will increase swiftly in the weeks to come. Any surgical attempt to correct the blockage would only temporarily extend my life while exposing me to even more continued suffering.

Quite calmly and rationally I ask you: why is it against the law for a physician to help me make a dignified early exit with my head held high? Why should control over the end of my own life be dictated by other people’s emotional and religious scruples? An assisted death with dignity would spare me horrible suffering and would prevent my family and friends from seeing me waste away to a skeletal form with a hugely distended belly. Why do lawmakers feel so certain that dying people should have to endure their full quota of pain?

In this country it’s legal to put down a dying pet. In fact, it’s considered to be the most humane solution to ongoing pain. So why does our government compel human beings to go through the kind of suffering that we would never allow in our own cats and dogs?

Perhaps you happen to believe that human life has a sanctity that must not be tampered with. That’s fine, and I respect your religious values (although I must point out that the Bible nowhere contains the phrase “sanctity of life”). But an enlightened society should not allow followers of a single religion to enforce their religious beliefs upon others, nor should those religious tenets be encoded into the default government over all Americans. I believe that subjecting me and my family to extended suffering serves no useful governmental purpose and displays a profound lack of compassion.

I seek only peace, and a quick end to my suffering. And this is exactly what’s being denied me. I believe that the Swiss, the Belgians and the Dutch have it exactly right when it comes to compassion for the suffering: after a waiting period of several months, and a close vetting of the medical records, patients are allowed to gently and painlessly pass away in the presence of their family and friends. We need this option in the United States.

Please share this text with your legislators and your governor.

Drat those deer

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I used to be charmed by the idea of backyard urban wildlife habitats. As a lifelong birdwatcher and environmentalist, it seemed like a good idea at first. But after nine or ten years of watching the increasing number of urban deer in my neighborhood, I think differently.

I’m all in favor of encouraging habitat for the small things: birds, bees, butterflies, and bats, upon whose presence many other things depend. The larger mammals—skunks, raccoons, foxes and opossums—are acceptable in lesser numbers. But I’m utterly opposed to urban deer. Not only are they causing countless thousands of dollars citywide in damages to yards and vehicles, they’re also a sign that Nature is horribly out of balance.

Because mature does frequently bear twins, the urban herd doubles itself about every three years. There simply isn’t room for all of these deer. We need some checks and balances here.

This problem is exacerbated by people who invite the beautiful little spotted fawns to come right up and nibble food out of a human hand. That’s great fun while the fawn is small. But flash forward two or three years to when Bambi is suddenly a grown stag with antlers, overwhelmed by aggressive hormones during the fall rutting season. Imagine an aggrieved homeowner going outside to shoo the stag away from the garden, only to be turned upon by a 110-pound animal that’s armed, dangerous and completely unafraid of humans.

This is NOT a good scenario. Deer can and do kill people every year. People in my neighborhood (including me) have been menaced on repeated occasions by pawing, snorting bucks. A small dog was killed by an angry doe near here just a few years ago. Having semi-tame large wild animals in such high concentrations within city limits is a very bad idea.

If I had a dollar for every time I’ve heard the words “But we’ve taken their habitat away”, I’d be rich by now. Folks, this is a fact: never in the state’s history have there been as many deer as today. Far more deer live in Indiana today than in the early 1800s when this area was first settled, and their current overpopulation has nothing to do with habitat destruction. Apex predators in the old days (bears, cougars, wolves, and human hunters) kept the deer population within reasonable and sustainable bounds. Today their ever-increasing numbers are forcing them to colonize suburbs and cities where they feast on landscaping as though it was a never-ending salad bar. This is not Nature at her best. This is instead an indication that something is terribly wrong.

Even though a dramatic cull would certainly benefit the entire ecosystem, the very word enrages the deer-defenders. There’s no arguing with someone who is emotional and angry. (In fact, as an aggrieved gardener it’s all I can do not to be snarky and angry right here in print.)

There is a widely shared misconception out there regarding Nature. The deer-defenders believe that a system without apex predators is one that’s in harmony and equilibrium. But in fact it’s the opposite. An illustration of this attitude: a kindly and civilized person on my street sent a friendly email to all the neighbors requesting that they keep their cats indoors because they enter her backyard habitat and stalk the creatures she is trying to harbor. (She also provides water for the deer in a basin in her front yard.) But any miniature ecosystem that banishes predators can never be a viable or valid system. Every ecosystem in the world, be it desert, jungle, or the Arctic Circle, has predators to keep the system in balance. Without predators to kill the slow and the weak, the whole ecosystem falls apart. A backyard “habitat” that banishes all predators is simply a pretty picture with a frame around it, a nicey-nice idea of what constitutes an ecosystem, not the real thing.

Why should gardeners who are simply trying to live ecologically and sustainably be held hostage by animal populations that are wildly out of balance? Why should dangerous wild animals range freely through yards and streets without fear? Why should walkers be threatened by stags on public sidewalks? Why should the entire ecosystem of perennials, shrubs, tree seedlings, birds, small mammals and insects be adversely impacted by unsustainable numbers of herbivores?

The city needs no more “backyard habitats” if the result will be even higher numbers of destructive cervids rummaging for decreasing amounts of food in people’s yards.

If stones could talk….

The old Monroe County courthouse prior to its demolition.

During my 11-year tenure as “Homes” columnist for the Bloomington Herald-Times, I learned many fascinating things. For instance, oral history in Elm Heights says that the three houses on the southwest corner of Fess and University were built using architectural salvage from the original Monroe County courthouse. (That courthouse, constructed in the 1820s, was demolished in 1905 to make room for the current limestone structure.)

In this case, oral history is probably correct. One of those three houses has a basement ceiling supported by hand-hewn timbers with adze marks, an architectural element common in the early 1800s but highly unusual a century later. In the house next door, a massive, non-standard and obviously ancient paneled door was cut down to fit a low basement doorway. And renovations at that second home uncovered piles of soft smoke-smudged antique bricks serving as fill around the foundation.

I think I have identified an additional element of the old courthouse not far from Dunn Meadow: reused limestone foundation blocks which nowadays serve as a humble retaining wall.

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This wall is at the northeast corner of 7th and Dunn.

The entire north side of Seventh between Dunn and Indiana is edged with stone retaining walls. Most of them appear to be roughly pecked into shape using a hammer and chisel. We know from commissioners’ records that when Jack Ketcham built the original courthouse he used stone and lumber from his own property south of Bloomington. The construction took years longer than he had promised, to the great annoyance of the county commissioners of the time. But consider how long it would have taken to shape countless limestone foundation blocks in the absence of industrial milling machinery! When you consider that the bricks were handmade as well, it’s a wonder that Ketcham finished the building at all.

The contrast between early 1800s and 1900s shaped stone.
The contrast between early 1800s and early 1900s shaped stone.

Look how rough, large and heavy these old stones are. 20th-century milled stone was always neatly shaped and the pieces were smaller, to ease the task of stacking them. But even roughly shaped stone was too valuable a commodity to simply throw out when a building was demolished. The reason I believe that these stones came from the old courthouse is because the houses in that block date to the correct time: 1905 and immediately after, according to the Monroe County Interim Report. And there’s so much of the recycled pecked stone that it must have come from a sizable building.

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It’s always a surprise to look at something that I’ve passed countless times and see it with new eyes. I had never thought twice about this block of retaining walls until recently, but the angle of the sun at this time of year made the rough texture of the stones much more visible.

This stone in an Elm Heights alleyway appears to be repurposed.
This incised stone in an Elm Heights alleyway appears to have been repurposed.

Do you know anything about these retaining walls, or about the three houses at the corner of Fess and University? Are there any other buildings in Bloomington allegedly built using salvage from the old Courthouse? If you have any anecdotes, please let me know.

(To learn more about the various incarnations of the Monroe County courthouse through time, see my old blogsite.)

Accessing Cancer’s Silver Lining

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[This public presentation was delivered at The Venue on July 21, 2015.]

My name is Carrol Krause and I was diagnosed last year with an incurable cancer. All the same, I’m leading a happy life right now, thanks to the upside of cancer. The upside, what you could call the silver lining, is something that very few people talk about, even though it deserves to be much better known.

The word “cancer” is almost always a word that makes people shudder. We associate cancer with pain and suffering, and death and loss. In our minds we think of cancer patients as wracked with pain, emaciated, weak, and bald.

But many of our assumptions about cancer are stereotypes that don’t necessarily hold up. Right now I’m living with Stage Four cancer, and look at me! I still feel good, I’m not yet in pain, and I’m extremely happy to be here.

I have learned that cancer doesn’t necessarily have to be something that’s bleak and dark. It’s a question of shifting my attitude to perceive the glass as half-full instead of half-empty. Instead of lamenting the fact that I’m going to die sooner rather than later, I’m busy enjoying the time I have left, to my fullest ability.

Each cancer patient, of course, approaches their situation in a way that’s completely unique and valid and right for them. I’m in no way suggesting that my way is superior to anyone else’s. It’s simply the way that I reacted to the biggest challenge of my life. I put it forth here in hopes that it might prove helpful to other people with cancer, or people who are experiencing other serious difficulties.

I responded to my cancer diagnosis by promising myself that I would live my remaining days to the best of my ability, and that I would enjoy every moment possible. I have remained active, I exercise daily and I continue to set projects and goals for myself. Although I quit my beloved job as “Homes” journalist for the Herald-Times, I continue to write blog posts.

My approach is based on having lost my two best college friends to lung cancer. Statistically, this is nothing unusual. Most of you have already experienced the loss of a friend, associate or family member from cancer. The American Cancer Society estimates that approximately a third of all Americans now living will develop cancer in their lifetime.

But back to my friends. They were the women who knew me when I was young and fancy-free. They knew me better than anyone else on earth, other than my husband. So the way in which they lived and died could not help but make a very powerful impression on me.

One of these two friends reacted to her diagnosis with fear and anger. She basically turned her face to the wall and died. I can’t blame her, she had two small children and a career that she loved and had struggled for, and cancer came along and ruined everything. My other friend fought her cancer valiantly and chose to become a soldier in the struggle against her disease. She succeeded in winning a remission of a year and a half, against all odds, which is something she should have been happy about.

But I was horrified and grieved when she told me that she had never enjoyed a single day of that remission. Her disease hung over her head like a dark cloud. She constantly fretted about her health instead of enjoying herself. She knew it would come back and she would have to start up the fight all over again, so she lived in constant dread throughout her remission. And it DID come back, just as she had feared. She experienced increasing levels of panic until the day they took her to the hospital for the last time. When she finally accepted the fact that she was dying, and there was nothing else she could do about it, she whispered “hallelujah.” By this she meant: thank goodness I don’t have to fight any more. She never spoke again, and died soon after.

It made my heart ache to think that she never had a single joyous day with her husband during the entire time she had cancer.

Every person who loses a loved one to cancer is deeply affected by the loss. After my own diagnosis with cancer, I thought constantly about my two departed friends. And I realized I didn’t want to live and die like they did. It just isn’t my style to wrap myself in fear and anger like my first friend. And I didn’t want to become a soldier fighting ceaselessly against cancer either, like my other friend.

Here’s where we come to one of the most common stereotypes about cancer: cancer as a battle. You’ve probably noticed that the obituaries of people who die from cancer are almost always phrased as “John Doe died after a long battle with cancer,” or “Jane Doe died after bravely waging war on her cancer.” To me, this is a bad metaphor. It’s a trope. It’s a lazy habit that we automatically adopt without taking the trouble to consider alternative ways to look at cancer.

I myself tend toward pacifism. I don’t want to fight anything or anyone. Nor do I want to engage in battles or wage wars. I was a child during the Vietnam War. I lived through the war in the Gulf, the war in Afghanistan and the war in Iraq. I’ve also seen the War on Poverty, the War on Drugs, and the War on Terrorism. (Those all went down “well,” didn’t they?) I have never known a successful war in my lifetime.

For me, the word “war” has come to mean a struggle that’s impossible to win. So if I were to adopt the metaphor of waging war against my cancer, it means it means I’m committing to a hopeless fight that’s lost from the start.

Therefore, instead of battling my illness I have chosen to embrace health instead. And my doctor and I are “treating” my cancer, not waging war against it.

The more I thought about it, the more I realized that there are a number of other worn-out stereotypes and formulas clinging to the idea of cancer. For instance, many people think of cancer as something that’s intrinsically “other,” some kind of hostile being embedded within them, like in the movie “Alien.” Many cancer patients refer to their own cancers in a way that objectifies and separates them. They talk about “the cancer,” or “it,” as though it was something separate from their bodies. “The cancer isn’t responding to treatment. It requires another round of chemo.”

But my cancer isn’t an alien thing.  It’s “my” cancer. It’s part of me. It’s curled up delicately between the organs in my abdomen. It grew from the cells of my own body. I talk to it. I tell it “Hey, if you keep on growing, you’re going to kill both of us. But if you stop right now, we can both live on together for quite a while.” Even if it can’t hear me, or respond, I still regard it as part of my body. And because I claim ownership and possession of it, it helps me feel some degree of control over the situation, instead of being merely a helpless victim.

One of the most common formulaic things that many people do when they hear that someone has cancer is to ask “Why did this happen?” I hate to break it to you, but this is really a pointless question, and a waste of time, because in most cases there’s no easy answer. My cancer was not caused by an inherited genetic defect. It was caused by a random mutation which sprang up all by itself, perhaps with help from solar radiation, X-rays, the aging process, a virus, who knows? But I ate organic food for 20 years, exercised moderately every day and maintained a BMI within acceptable ranges. I had none of the known risk factors for ovarian cancer. This stuff simply happens.

Another stereotype, another assumption, is the idea that cancer is something that’s completely horrible, a disease from which you can derive no comfort whatsoever. It CAN be horrible, certainly, but it isn’t always. After all, more and more people today are living with cancer instead of dying immediately. I had major abdominal surgery followed by four or five months of pretty nasty chemotherapy.  It was not a walk in the park by any means, but I was very happy to be alive. I continued working my job with the paper, I kept on seeing my friends, and I scheduled my interviews for the period during each four-week chemo cycle when I had the most energy. And I even derived a grim satisfaction from the sight of the long scar on my belly, and the cancer port on my chest. “Hey,” I joked to my friends, “those kids are all out there getting tribal tattoos and piercings and big plugs in their earlobes, but I’ve got something in the way of body modification that’s WAY more bad-ass!”

So I started with a good attitude at the beginning of my treatment. But when I turned to the Internet for information and comfort during those first few months, everything I found there was indeed horrifying.

My particular kind of cancer is known as Malignant Mixed Mullerian Tumor, MMMT. It’s also called carcinosarcoma. Neither of those names inspires a feeling of confidence. It’s commonly referred to on the online cancer forums as “a beast” and “a monster.” It grows rapidly and there is no cure.

Ordinary ovarian cancer affects about 1.5% of all women. My cancer in turn represents about 2% of that 1.5%. There are probably fewer than 200 women with this disease alive in the US right now. And that’s not particularly comforting. Because it’s so rare, there’s very little research being done on it, because it doesn’t represent a source of profit for the pharmaceutical industry.

So I had to manufacture my own comfort somehow. I thought about my two friends and how I wanted a different path than theirs. I thought about how there is no cure for this disease, and ultimately, no hope for me. Then I began thinking about how I was alive instead of dead. And I went over in my mind all the things that make me happy, all the things that make me feel most myself.

One day I happened to be listening to the WFHB’s Golden Age Radio and I heard the old song “Accentuate the Positive, Eliminate the Negative”. Something clicked inside at the sound of those words. It became a sort of mantra for me, because it was exactly what I needed to do: eliminate the negative, and accentuate the positive. The positive was that I was still alive after almost dying before my condition was properly diagnosed.

So I resolved not to be angry or fearful. I also decided that I needed to accept the inevitable. After all, death is a necessary part of the life cycle, and to be born is to receive a death sentence. All of us learned during childhood not to sulk or get mad when we got fairly beaten in a game. We all have to lose a game sometimes, and fairness has nothing to do with it. It’s the luck of the draw, it’s the cards you happen to be dealt. We all know that our lives are finite, and this fact is simply not negotiable. So I felt it best to try to be a good sport about it all.

I have no intrinsic objection to the fact that at some point I need to get out of the way and leave the earth to other people. I have no desire to live on as a “brain in a bottle,” as one or two of my friends hope to become. To me, the idea of being stored inside a mass of circuitry, unable to walk in the sunlight or smell honeysuckle on the breeze, THAT would be a cruel death indeed, a living torture. I’m very happy that I was born, happy that I am here; I will not file an objection to having to leave when my time is up.

So I accepted the fact that my life was going to end sooner rather than later. And to my surprise, I found that the act of acceptance turned out to be extremely calming.

When I told my surgeon that I accepted whatever happened, and was not panic-stricken or fearful, he was impressed. He shook my hand and said “Congratulations! You have just skipped to the finish line of Elisabeth Kubler-Ross’s Five Stages of Dealing with Grief.” (Those stages are denial, anger, bargaining, depression, and acceptance.) So, after leading an ordinary life for 56 years, it appears that I have finally become an enlightened being!

Here’s where I come to the Silver Lining. I must have done something right, because to my surprise, and without consciously intending to do so, I find that living each day with cancer has become far more delightful. I wake up happy just to be alive. I never gripe about the weather nowadays, because whether it’s hot and humid, or cold and sleeting, I’m just happy to see it at all.

And I feel things more keenly nowadays. It’s a lot like being young again. Think of how deeply children are touched to the core by their senses and their experiences. When we were young, everything was intensely new and fresh and wonderful. We thrilled to the sensations of our young thoughts and feelings. And then we got older, and now we find that we’re bolting our food down without really tasting anything beyond the first bite. We skim the headlines instead of reading the articles in depth. We drive with cruise control instead of really paying attention to the road. We make assumptions without waiting for all the facts to come in first. And slowly, bit by bit, this is how we lose the ability to savor the little lovely things that surround us.

Well, cancer reconnected me to those little things. I find tears of joy swimming in my eyes simply when I hear the sound of an orchestra playing, or when I gaze at Monet’s paintings at the museum, or when I look at a new baby. It’s exquisite to catch the aroma of flowers in the garden, or to see a wonderful sunset. I get really excited nowadays just seeing cottonwood fluff floating through the air, backlit by the sun. To see and feel things this way again, after so many years of not really paying much attention, is incredible. It’s a gift. And this gift is definitely worth a death sentence. This is the Silver Lining of cancer.

Despite everything that’s happened to me, I still consider myself to be a very fortunate person. I love my family, I love my friends, I loved my job for eleven years. And I actually achieved my childhood dream of becoming a writer and an author! Despite having cancer, I’m very happy with the way my life has turned out.

I spoke recently with a friend about all this. Now, this friend has had a hard time in life, and she has many regrets. She’s currently working a minimum wage job in a rural area with no cultural resources and she’s saddled with massive credit card debt. She told me mournfully, “But Carrol, I’ve made a lot of mistakes. If I got cancer right now, I would be pretty depressed about my life.”

She was thinking that her glass was mostly empty, simply because she didn’t have the stereotypical markers of American “success”: a picture-perfect house, a happy family, and lots of money. Well, she’s not alone. Most people nowadays in this new economic and political environment don’t have a glass that’s brimming over. Most of us have glasses that are only partly full. And because of my cancer, my metaphorical glass is a lot less full than other people’s. My glass doesn’t have money inside it, either. But my glass does contain a lot of glowing sunsets and cottonwood fluff.

My friend has a lot more going for her than she thinks she does. She’s going to live longer than I will, for starters. She is also a gentle, kind, and compassionate soul, which in an ever more callous world is something to be very proud of. Despite having no training, she has become one of the best nature photographers I know, someone whose work is worthy of being in National Geographic. When she gets home from work each day, she takes long walks through the nearby woods and along the river, and these walks recharge her emotional batteries and refresh her spirituality. She has a beautiful dog who arrived at her door as a starving stray, and who gives her unswerving companionship, love, and comfort. She collects beautiful small objects that have meaning to her. And she has a large network of friends who care deeply about her wellbeing. She’s got a glass that’s definitely at least half-full, if not more.

My point is this: When times are hard, or when life itself is dwindling, we all need to look at our glass again, and re-envision it as half-full instead of half-empty, and then think of all the wonderful things that are represented inside it. To do this requires an adjustment of attitude, but it is well worth the time and effort. The contents of that half-glass can definitely pull you out of depression and renew your life.

It’s good for all of us to consider the many things in life that give us joy. All of us possess inner riches which have nothing to do with money or conventional markers of financial success. To have loving friends, to engage in a creative activity, to take long walks in the woods, to simply grow a garden: these things are priceless, and beyond the value of money.  These things thrill our hearts; these things reward us. These are the things that truly make us happy.

When life is stressful, or when life itself is nearing its end, most of us aren’t going to reach over to caress our checkbook and credit cards. We will reach out instead to our loved ones, we will cuddle our pets, we will admire those orange sunsets, and we will hug and kiss the people who inspire us with good feelings. These things make us human; these are the things that make us more humane. When we’re at our lowest ebb, these things will give us new inspiration and emotional strength. And this is why I am filling the remainder of my life with flowers, birds, walks, conversations, weaving and spinning, meals with loving friends.

Lastly, having cancer has taught me the importance of expressing my gratitude. I am indescribably grateful to be able to see and feel things so keenly again. I am also grateful that I’m not in worse physical condition than I am despite being Stage Four. I’m grateful to my friends and my family, and for their ceaseless love and support. I’m grateful to the many people who prayed for me.

I’m grateful to be able to walk each day, and to inhale the sweet scent of my lilies in bloom. I’m grateful to have seen one of the best firefly displays since my childhood. I’m grateful to have seen my blueberry bushes bent double to the ground with the most massive crop I can recall. And I’m grateful to all of you for coming here today.

It might seem odd, but I found that the very act of expressing gratitude in turn makes me feel even more grateful. So each day I mentally go over the many things I’m grateful for, because in some strange way, doing this nourishes my soul.

As the old man said in the Monty Python skit, “I’m not dead yet!” Despite being Stage Four, I’m still alive, and newly awakened to the joy that surrounds me. I’m avoiding the old tropes and stereotypes that only hold me back and make me feel worse. I even planted a garden this spring, not knowing whether I would make it until the harvest. But here I am!

My hope is that our outmoded stereotypes about cancer can be replaced with more wholesome attitudes that will truly benefit patients. I feel very strongly that each person who gets a cancer diagnosis should be able to obtain some form of emotional health support. And this can be done by helping new cancer patients to understand that there IS a silver lining to cancer, a beautiful one! It’d be great if each new cancer patient was shown how to focus properly on the half-full glass that they’re holding.

Even when a glass is half-empty, there’s still a good drink remaining. And even when it’s nearly gone, when you get down to those last few sips…if you maintain a good attitude, those could be the best sips of all.

Bohemians in Bloomington, 1990s (from the journal)

Bloomington's courthouse square. Image lifted from indianapublicmedia.org.
Bloomington’s courthouse square. Image lifted from indianapublicmedia.org.

Jan. 17, 1994. Free Speech Night.

We attended Free Speech Night at the Rose Fire Bay, a group of presentations designed to test the First Amendment. Part Two was memorable. A so-called performance artist got up to engage in the sort of free speech which done thirty years ago would have been sufficient to either get him arrested or else thrown into a mental institution. He had one side of his face painted black, the other side normal, and wore army fatigues with a swastika on one arm. A male buddy at the back of the stage contributed ear-splitting arrhythmic noise and feedback from an electric guitar, while a female friend provided horrible blood-curdling screams. He lit incense, drank liquid from a glass bottle and appeared to be pretending to throw up into a bowl, ranted and yelled, turned his back to the audience and dropped his pants so his bare butt glowed in the spotlights, then turned around to reveal that he had a rubber chicken stuck on over his penis. He then ran through the audience, tearing pages out of a Bible and throwing them at the viewers, his chicken bobbing and swinging from side to side. He removed his chicken, put his pants back on, and ended the act. “Whoa!” yelled Bill Weaver from the back of the room, in the somewhat stunned silence that met the end of the performance. People then began applauding, politely but without enthusiasm. Bill took the stage to read from Henry Miller. His first words into the microphone were “That fellow on before me should’ve used a LIVE chicken.” (Laughter from the crowd.) “But then,” he pretended to reconsider, “this isn’t NEW YORK. This is only Bloomington.” He read the “Georgia Cunt” section from “Tropic of Capricorn,” another piece that would have pressed buttons four decades ago. He read it well and was warmly applauded.

The evening’s impresario, Steve Gardner, mentioned to us after the end of the show that the performance artist was renowned for drinking gasoline and throwing up on stage. I was thunderstruck. “You mean that stuff in the glass bottle was gasoline?!” Steve shrugged. “He didn’t really tell me beforehand what he would be doing,” he explained. Frank told me, “Didn’t you see him throwing up into that bowl?” “I did, but I thought he was faking it,” I said.

[I was deeply disturbed and followed the above journal entry with a three-page musing on the meaning of “art.”]

Aug. 13, 1996. A Memorable Art Show Opening.

Frank and I went downtown to the opening of the Big Little Art Show at the Daisybrain Gallery. Three of Frank’s pieces were on display in this show, hanging alongside big art-scene names like David Ebbinghouse. Paul Smedberg also had two pieces hanging, computer-altered color photos with some degree of talent. Outside, three kinetic sculptures were on exhibit. There was a crudely-articulated cow skeleton mounted on roller skates and driven by a battery so that it would slowly inch its way along the sidewalk, with a brass cowbell around its bony neck ringing, with intermittent “moos” coming from a boat-horn mounted inside its foresection. At intervals it would piss from a sack of water slung underneath its pelvis. Another sculpture was a mannequin with a torso and head and one mechanically-driven arm which regularly lifted and lowered a steam-iron onto a raw steak draped over the top of its head. The name of this piece was the Sade-a-tron. Another mannequin torso, headless this time, gyrated rhythmically from side to side flailing at itself with chains for arms which would strike tambourines mounted on front and back. It provided a steady percussive beat to the proceedings.

The art scene crowd was spilled out onto the street, for the Gallery next door was also having an opening. People were milling around talking, commenting on the kinetic sculptures, introducing themselves to artists; we stood on the sidelines enjoying the scene. A group of four or five undergrads rounded the corner and stopped in astonishment at the sight of bovine bones half-visible behind all the moving, mingling people. “What’s that?” one undergrad spoke aloud to no one in particular. “It’s a cow,” I said, “and it moos and skates along and pisses.” “Oh,” said the kid in relief, “that’s cool.” Another classic moment from the Bloomington streets!

[Did anyone else out there attend these two events? I’d like to hear your own memories.]

Thoughts on the Boston Museum protests

Photo courtesy the New York Times.
Monet’s “La Japonaise.” Photo courtesy the New York Times.

The Boston Museum of Fine Arts unexpectedly found itself the target of protesters this past week, and was assailed on social media and Tumblr. Words like “racist” are not often hurled at a world-class cultural institution. What was its offense? Did it use racially disparaging words in an exhibit? Did it turn away visitors of a certain color?

No. All it did was to display Monet’s famous painting of his wife wearing a kimono, along with a similar kimono in which visitors could pose next to the art to have their photos taken.

The protesters are young, principled and earnest, driven by heartfelt convictions of their rightness. They believe that the act of donning a kimono and posing in front of a painting is cultural appropriation, pure and simple. But following that train of logic, I must no longer enjoy sushi dinners or read anime books. I must not consider getting a “tribal” tattoo on my shoulder lest I offend indigenous tribes. I must avoid music by Clapton, Eminem, and Diana Krall because they’re whites performing in musical forms originated by blacks. And on a local level, I must not tap my feet to music from Mali or Mongolia during the annual Lotus Festival of World Music, since I’m not Malinese or Mongolian.

Obviously, all this is ridiculous. The protesters in Boston mean well, but they are quite wrong to sling loaded words like “racist” at the museum. Racism is when we draw a line between ourselves and other human beings in order to separate us into categories. The world’s most serious problems right now are being caused by people who think only in rigid categories and who draw similar lines to divide people. Both the Islamic State and the Boston protesters share this commonality: they both assume that their own beliefs are the only form of righteousness.

To assert something like this in a very complex world is a faulty assumption of breathtaking grandiosity. All moderate people would agree that international cultural exchange is an intrinsically good thing. After all, the world listens to American music. People from all nations enjoy French and Australian wines, and drink Scotch. Why should we not buy a beautiful vintage kimono while vacationing in Japan? Jerk chicken tastes mighty good even when cooked in the American Midwest.

I advise the protestors in Boston to reach out to others instead of finding fault where none was intended. To make our world a better place, we must weigh our own actions rather than criticize the actions of others. It will be a better day when all of us around the globe can wear each other’s garments, listen to each other’s music, eat each other’s food with smiles on our faces, and make love to each other, without anyone else reproaching us for doing so.

Two punk-rock nuggets from the journal

A description of the classic West Coast punk band, X, at the height of their powers, followed by a description of Lydia Lunch in 2014.

I'm not sure who owns the rights to this image, which lives at http://www.cvltnation.com/x-the-unheard-music-documentary-now-showing/
I’m not sure who owns the rights to this image, which lives at http://www.cvltnation.com/x-the-unheard-music-documentary-now-showing/

October 25, 1983

Bill and I had dinner and sat around for a bit until it was time to head on down to the X concert. We had figured on sitting in front with Brian Wilcox, but his plans had fouled up and he was sitting in the front room far from the stage, having an unhappy fight with his girlfriend. We were at a loss, for the main room was packed full of cretinous black-leather-garbed punk warriors and we could not figure out where to sit. We found a table at last back by the bar, which as it turned out offered as fine a view as we deserved and wanted. Michael C. and Mike Shaw came by and sat with us, along with another friend of theirs. Everyone was primed and ready to party. The opening band was tight, but mechanical and mediocre. Even as everyone hopped up and down on the dance floor, they snarled against the band. I yelled “Go to hell” when they finished, which caused much amusement to Michael. My invective was not heard as far as the stage, I am sure, because of the general noise.

X came on and were greeted by a great scream of welcome. They were extremely tight and played magnificently. Exene had brown hair all in horrid uncombed doggie-clumps. John Doe had his hair slicked back rockabilly-style, but it soon came uncombed and stuck out damply all around his head as he played. Billy Zoom, the guitarist, was the real hero of the night. He let loose tremendous howling guitar riffs the whole night, without looking at the instrument, or sweating, or bobbing to keep the beat, or veins standing forth on neck or forehead. He stood there calmly and mildly, disregarding the all-encompassing eruption of loud music from the band which raged all about him, with a faint smile playing about his lips, and gazed about the hall, first in one direction, then in another, never losing his smile. He was like a smiling automaton. It was the most incredible feat of guitar-playing I’d ever seen, to play so effortlessly and at the same time keep up this hilarious smiling posing. He kept gawking at the cute women in the audience, and every so often would wink lasciviously, regardless of whatever he was playing, never once losing the beat. Michael said, “God, he’s a Nazi! He’s not human! How can he do it?” and Gordon Trubey, who came over to talk with Bill, said, unaware of Michael’s statement, “God, he’s inhuman! I don’t see how he does it!” I danced a bit, and had two gin and tonics, and rough-housed with Michael, who was tipsy and kept laying his hands on me to tickle me or plague me. I really could not pay as much attention to the spirit of the affair as I had wished. I can either appreciate a show intellectually, or physically, but not both at once.

Gordon came out of the flailing mass of bodies on the floor to our table, wild-eyed and lacking his glasses. Bill asked him where his glasses were. “Somewhere on the dance floor,” was the reply. “But I’m going back to exact my revenge!” and he disappeared back into the melee.

X played one long set with no breaks, about an hour and a half of solid playing, and left the stage at about 1:20, early for most shows. We were quite satisfied with the evening, and walked home, ears ringing.

*   *   *   *

Lunch in 2014. No idea who owns this photo.
Lunch in 2014. No idea who owns this photo.

Feb. 7 2014

Last night R.W. came to town and took me out to see Lydia Lunch close out the centenary celebration of William Burrough’s birth, since he had a free ticket. We had a very pleasant time talking at the bar. It was like a date, getting to know someone better by talking and asking questions. I would never have gone if he hadn’t offered me a ticket, because Lydia Lunch is nothing to me (as is Burroughs, for that matter), but it was nice to be offered the option, and to take it. In our talk I learned that his politics align with mine; he believes that 9/11 was planned by our own government; and he has an enormous amount of respect for my journal and wishes there were more of it. “Your journal wasn’t just your life,” he told me; “it was mine as well, because I knew all those people and hung out at all those places at the same time. We were always just two steps away from each other that whole time.”

Lydia got up on stage at last after our pleasant interlude and began to show off. She began by holding up a copy of “Naked Lunch” and pretending that it was about her. She then dissed Burroughs and called him a dead white male who couldn’t do anything in response to what she was about to do, which was to read his book as a “cut-in,” not a cut-up, in which she would segue back and forth between sections that were his and parts that were hers. “And I bet you can’t tell the difference,” she jeered. She read well, slowly and articulately at the lowest register of her voice, with grimaces, grins and leers at the right moments. But I was disgusted by her one-upmanship. If she didn’t like Burroughs, why did she manoeuver to be a part of the IU symposium? If she was supposed to read from his works, why did she seize the chance to bang the drum for her own writing? She seemed to be driven by envy, bile and a deep underlying anger. She’s an anger-junkie. Is that what being a “punk” is about? Because when I think of Patti Smith, the first woman in punk, I think of someone who is kindly, compassionate, benevolent, and eternally willing to support the creative efforts of others. Fuck Lydia Lunch, she’s nothing but a brazen hussy.

[More extracts from the journal will be posted frequently.]

More from the journal: England, Part Four

[For Part One, see https://storiesbycarrol.wordpress.com/2015/07/06/more-from-the-journal-england-part-one/.]

In early 2006, after a long period of ill health, I traveled to England to take the walking trip I had dreamed of since my teens. My 17-year old niece, Maddy, accompanied me. Maddy had Asperger’s Syndrome and had never been so far away from home.

Photos are my own except when credited to others.

June 8

I had to walk into town from our B&B across the Avon River to get cash to pay our hosts. My hostess got into a bit of political ranting when I returned and happened to express my interest in her thoughts. She’s the second person on this trip who has complained to me about immigrants (particularly from Eastern Europe) ruining England, and the second to remind me, “We’re only a small island, after all.” She expressed the belief that this Labour government and the modern welfare state are sending England to the dogs. It was interesting to hear the same sentiments expressed twice.

We caught the 10:42 for Paddington Station, and checked into our hotel, the Phoenix (Best Western) at Kensington Garden Square. It was horribly hot and even a bit humid, and nothing is air-conditioned (a situation that is bound to change with the global warming). Maddy and I bought passes on the Underground and learned how to navigate, which turned out to be far easier than New York’s subway system because of superior signage and organization. We ate some grocery carry-out snacks and caught the Underground to the British Museum, where we spent two hours strolling through roasting-hot galleries without air conditioning. Maddy was in raptures over some of it, like the Egyptian stuff, and indifferent to other stuff (like the Assyrians, whom she’d never heard of) and the Elgin Marbles, although she did agree, once I had told her their history, that they ought to be returned to the government of Greece.

Photo courtesy www.tripadvisor.co.uk.
Photo courtesy http://www.tripadvisor.co.uk.

When we were properly wearied, we hopped back on the Tube and rode down to the Thames Embankment, then walked upstream to the Houses of Parliament, which shone handsome and brown in the blazing sunlight. The gold on Big Ben was particularly handsome – I had never realized it had gilt decoration. Across the river, the Eye of London (an enormous bicycle-wheel Ferris ride) slowly rotated. Behind the Houses of Parliament was a huge heap of a church built from a pale stone. “What’s that?!” asked Maddy, all agog and totally thrilled and taking photos of everything. I consulted my map and replied with surprise, “that’s Westminster Abbey!” Click, click, went her camera. I had left mine in my hotel room, not wanting to lug it in the heat.

Photo courtesy londynprzewodnik.pl
Photo courtesy londynprzewodnik.pl

We walked next west along St. James Park as far as Buckingham Palace, which looked grander in the sunlight than I had remembered from my previous trip. The entire circle in front of the palace was adorned with Union Jacks on standards, so I hazarded a guess that the Queen might be at home, since it wasn’t decorated like this when I was here before.

We walked north through the park to the Green Park subway station and rode the rest of the way home. My feet were in sorry state, and my knees were stiffening after two consecutive days of forgetting to take my glucosamine. We watched an entertaining nature show on BBC-2, and then watched a very interesting documentary about Temple Grandin, the famous cattlewoman and animal behaviorist who has Asperger’s, like Maddy. It was very enlightening. Maddy told me some extremely poignant things afterwards about her own struggles with Asperger’s. She explained that she had trouble with humor – what others find funny she does not find humorous, and what she thinks is funny leaves other people staring at her. “When I was little, I had seen a few movies by the Three Stooges, and I thought they were really funny. I like slapstick more than other forms of humor. So I tried doing that kind of stuff to the other kids, but I just got in trouble.” She said she was too young to realize that the Three Stooges weren’t actually poking each other in the eyes or clobbering each other on the head. I fault my brother for providing that sort of movie to his daughter without explaining to her that it was an utter fantasy.

June 9

I’ve been sleeping with sleeping pills every night; I’ll have to break my habit when I get home.

Today was our last day in London. We took the Tube to the Tower and did the place without a tour, by ourselves. It was not particularly crowded; I had envisioned having to shuffle through long queues for half the day. But it was completely endurable; perhaps the continual heat is putting off the number of visitors. It was nice to get to see the inside of the place, but it was (of course) enormously altered by the passage of time. I liked the old Norman part the best, with the round arches; the barrel-vaulted passages; the garderobes up a step or two and around a corner (did they use anything back them to wipe their bums?); and the lovely arched chapel with its fabulous geometrical simplicity of line. I also really enjoyed the armor and weaponry, but Maddy was completely bored and had no interest whatsoever, so we kept moving along quite swiftly. I barely got a good look at Henry VIII’s tournament armor (with his initials entwined around Katharine of Aragon’s in a lover’s knot) which showed that he had been in his youth as slim as my brother, if perhaps a bit shorter-waisted (although that might have been the styling of the armor). The tournament armor came complete with horse armor as well and was a magnificent sight. Then there was his old-age armor, by which time he had swelled to Frank’s girth (if not slightly more). There was also a set of armor for a man who was well over 6 ½ feet high and who must have been an amazing, almost giant-like figure of a man; and some little suits of armor for boys about Miles’ size; but I had to scurry after the plodding Maddy.

King Henry VIII's tournament armor. Photo belongs to beingbess.blogspot.com
King Henry VIII’s tournament armor. Photo belongs to beingbess.blogspot.com

We then got in line to see the Crown Jewels, which were housed in a building filled with gold and silver plate and ceremonial panoply. When looking at the series of tall golden maces, each one with a different date and a different monarch, I wondered aloud to Maddy, “What was wrong with the first one, that they had to keep making them?” The shuffling of the line (the only line we encountered anywhere at the Tower) prevented me from stopping and reading the descriptive cards next to each item. Maddy was even more bored with crown jewels than she had been in the armory, and didn’t even want to go in until I told her that her family would be disappointed if she didn’t. We stepped onto a moving sidewalk that whizzed us past all the crowns with their purple velvet and big shining jewels, and the last one of all was simply sparkling with gazillions of tiny diamonds, and then were outside again, with hardly time to draw breath. We went to the Tower Green where Anne Boleyn, Jane Gray and Essex were beheaded, but there was nothing to see, just a shady grassy place with some paving stones that were being pulled up in preparation for some sort of restoration. We went quickly to see Sir Walter Raleigh’s quarters in the Bloody Tower, which were furnished reasonably well despite the conditions. To an Elizabethan, the accommodation was probably not much worse than at his regular residence. Then we exited, after purchasing some trinkets at the Tower gift shop (Maddy is a perfect addict of gift shots and booksellers).

We strolled down to Tower Pier and caught a water-taxi down to Greenwich, which turned out to be a very pleasant, laid-back place. We toured the Maritime Museum, which was a top-notch museum but sadly lacking in air conditioning. We grew so hot and weary from tramping excitedly from one gallery to another that when I found I had completely overlooked Nelson’s last uniform, the one he died in, in a gallery we had already visited, I declined going back. We trudged out the doors back into Greenwich town, which was sweltering beneath a merciless sun, and I decided it would not be a good move to walk up to the top of the nearby hill to visit the Royal Observatory and see the strip in the pavement that marks zero degrees longitude, and see the place from which Greenwich Mean Time gets its name, because Maddy was faint and dizzy again. I think she’s in extremely bad physical condition and ought to be exercising at least an hour a day to give her growing body the workout it needs to be fit; but she is firmly convinced that she is simply weak by nature. I was strongly reminded of myself as a teenager – always slightly languishing rather than physically active, and wondering why I was so weak, the cycle perpetuating itself. In fact, now that I’m off eating wheat, and recovering from what amounted to a long period of slow food poisoning, I feel fabulous. In the old days I would have wilted in the sun like Maddy. Now I feel strong, even immortal, hooray!

The restored Cutty Sark (which burned after I visited it). Photo belongs to https://en.wikipedia.org/wiki/Cutty_Sark#/media/File:Cutty_Sark_2012_landscaping.JPG
The restored Cutty Sark (which burned after I visited it). Photo belongs to https://en.wikipedia.org/wiki/Cutty_Sark#/media/File:Cutty_Sark_2012_landscaping.JPG

After the museum, because of the heat we visited the local market, where Maddy purchased a pentagram necklace from a local witch / capitalist / vendor and we toured the Cutty Sark, one of the fastest China clippers ever built, a noble vessel. Her hold now contains a stunning collection of 1800s figureheads from other ships, which reminded me strongly of American carnival ride animals in their carving style and the thick layer of shiny varnish atop bright paints. The one I liked best was a sultry lady in a scarlet dress that was off both shoulders and half over one swelling breast, her dress plastered against her voluptuous body as if by the wind itself. There was one figurehead of Abe Lincoln, to my astonishment (there was a statue of Lincoln in front of Westminster as well – what does he represent to the British mind, I wonder?).

We caught the water taxi back to Tower Pier, took the Tube to St Paul’s, and got out to walk along Cannon / Fleet street. St Paul’s was not really visible from street level, I mean the famous dome; all we could see was beautiful, lovely pale outer walls rising high above us. Maddy was in no mood for any more churches, and it was 5:00 pm after all, and I was afraid it would be closing its doors to tourists, so we strolled around the churchyard and watched people picnicking atop the old tombs, and we went on down Fleet Street in search of Dr. Johnson’s house. We found it down a tangle of tiny lanes that undoubtedly dated back to the Middle Ages or even the Saxon era; for all I know they could have existed since the city was rebuilt from the ashes of Boudicca’s rebellion. Johnson’s house was not open, or at least, the woman who answered the door told us in a markedly unfriendly way that it was closing in five minutes. I went back down the steps, looking up at the red brick building with regret, but I thought with delight, “Boswell walked here! Johnson and Boswell walked arm in arm through this lane!” The court adjoining Gough Court where the house is, is now called Johnson Court, and there is a building nearby named after Boswell, which is nice. There were two Elizabethan buildings on Fleet Street within the next block or two, one in splendid shape, the other deformed and altered by the years but still handing out over the street. I was amazed by the fact that I could walk through 2000 years of history on one day of walking through London, and see a statue of Johnson’s cat (“A very fine cat indeed”) to boot.

Johnson's cat, Hodge, adored oysters. Photo belongs to settojet.files.wordpress.com
Johnson’s cat, Hodge, adored oysters. Photo belongs to settojet.files.wordpress.com

Maddy was doddering with exhaustion, so I bought her a Cornish pasty and we took the Tube home to the hotel, where we hung out and relaxed after another grueling day in the sun. We are both glad we’re going home tomorrow. It’s been good, but it’s time to go.

June 10

We had a long talk last night, and Maddy wiped tears away as she told me agitatedly about how her parents had to put down their old dog, Zorba. “He didn’t want to go!” she cried in a passion. “And they killed him! They kill all their dogs – Shondo, Sadie, and now Zorba. I hate it. It’s totally wrong.” I said gently that the dog probably didn’t want to leave Maddy, but animals know when their time was up, and since he was old and very ill with cancer and congestive heart failure, it was a mercy to put him to sleep to spare his suffering. “Maddy, if I’m ever in a position where my own survival is hopeless, I’d want someone to help me along gently,” I said; “Frank on the other hand wants to be kept on life support forever, even if he’s a helpless blob.” Maddy said savagely, “I don’t care what happens to PEOPLE when they get old and sick. Animals are all that are important to me.”

We got up, breakfasted and strolled a little in the Bayswater neighborhood around the Phoenix Hotel, then checked out and caught the Tube to Paddington, then the Heathrow Express, then a Virgin Atlantic flight to JFK, then a Delta mini-jet to Indy. Actually I’m in the Delta jet right now as I write. It’s almost seven in the evening, which is midnight English time, yet I don’t really feel weary (yet). I have time to think about what I did, and learned, on this vacation.

First, the British are infinitely superior to Americans in politeness and friendliness. Secondly, their public transport is splendid. Thirdly, whenever British people express satisfaction with something, they say “It’s lovely!” Fourthly, I left part of my heart in Cornwall on the cliffs and moors and in the sudden secret lush valleys. Fifthly, Maddy proved to be excellent at navigating the airports, train stations, and buses. The only place I equaled her was the subway – am I slipping in my old age? I feel distinctly “blurry” in comparison with her instant comprehension of the arcanities of English transportation. I used to be far more accurate, I feel sure. So what has happened? Countless times during this trip I stood holding a schedule or map, puzzling, working it out slowly in my head, only to have Maddy say somewhat impatiently, “Oh, we just have to do such-and-such.”

I'll never forget the cliffs of Cornwall.
I’ll never forget the cliffs of Cornwall.

And lastly, I found that Maddy and I have a lot in common. Her Asperger’s is quite mild; she said on a scale of one to ten, she might qualify for a three; but if so, where does that leave me? A one? or a fraction of one, perhaps? I’m literal and often can’t tell if someone’s telling a joke if they do it deadpan, at which I often become annoyed instead of laughing. I used to have problems making eye contact. I used to be physically weak and clumsy like she is. I used to be a social “bug” whom the other kids made fun of, and when I was with my peers in an enforced setting, they’d draw back from me because of my over-enthusiasm and gaucherie. I have problems handling light in my eyes, and I have problems with noise, and with crowds in tight public spaces. But that’s the extent of it, really. I become more “Aspergerish” when I’m pre-mensing, and it goes away altogether when I’m not.

And that’s the end! “Home again, home again, jiggety-jig.”

More from the journal: England, Part Three

[For Part One, see https://storiesbycarrol.wordpress.com/2015/07/06/more-from-the-journal-england-part-one/.]

In early 2006, after a long period of ill health, I traveled to England to take the walking trip I had dreamed of since my teens. My 17-year old niece, Maddy, accompanied me. Maddy had Asperger’s Syndrome and had never been so far away from home.

All photos are my own except for the ones that are credited to others.

June 4

We ate a good breakfast and Maddy was able to walk as far as Mousehole, another mile and a half from Castallack Farm. Again it was blazingly hot and searingly sunny. I cursed my foolishness in not bringing a hat, but who’d have known that England at the beginning of June would be like this? Apparently, up to a week or so ago, they had been enduring one of the coldest and most rainy springs in recent history. And now it’s in the mid-80s and cloudless. Go figure! The “normal” temperatures for this part of the country for this time of year generally range from the upper 40s to lower 60s.

Mousehole is pronounced
Mousehole is pronounced “Muzzle”.

The thing that impresses me is the number of other walkers we’ve spoken with who think nothing of striding off for a good ten or twelve miles’ walk. A couple who were at our B&B this morning had walked from Sennen to Castallack in one day. The German we spoke with yesterday on the cliffs said he’s been coming every year for years, to walk from X to Y along the Cornish Coast. If I had been by myself, or with another reasonably fit adult, I could have walked much farther than we did (5.5 miles the first day, and about 7 the second). I’m astounded at how good I feel (notwithstanding perhaps the most extensive sunburn I’ve ever had, on arms, upper chest and face). No arm pain, no bad numbness (except while writing); nothing to report save a muscle cramp in my left calf. Compared with Maddy, I’m a model of physical fitness. I could not believe I carried both packs yesterday (even though it was not for very far, really). I’m so amazed at the physical change in my body – it’s like being reborn, or having an all-new body to marvel at and inhabit and enjoy. When I did my stretches yesterday I could touch my toes with no problem, and could perform all the other exercises that used to be painful and onerous. And instead of 17-year-old Maddy running circles around me, I ran circles around her.

We strolled slowly through part of Mousehole and ate luncheon at a tiny eatery, and looked at gimcrack tourist gifts through the windows of the many shops. All the shops had names like “Cat and Mouse” or had piratical or nautical themes. The village was perched on impossible hills above the water, with a handsome stone jetty sticking out into the water. Boats were tied up in the water and shrieking children ran chasing each other through the water at the shore. A stream issued from a culvert and spilled out over the rocks down to the sea. Gulls wheeled and cried overhead. The sun was blazing and we had little energy for touristing, what with our packs. We learned too late that we didn’t need to pack our bags on our backs each day; we could have chosen one B&B and taken the excellent bus system to anywhere on the Penwith Peninsula effortlessly without worrying about getting back. We could have walked from Sennen to Lamorna in one day, like the couple we met this morning, without being encumbered by heavy packs. But we didn’t know, so we can’t be faulted. Next time I do this, I’ll carry only a small bag with snacks and binoculars. (Sadder and wiser.)

Cottages in Mousehole.
Cottages in Mousehole.

Mousehole was very cute, with tiny stone cottages on narrow streets of appalling gradients, but it was filled with wandering tourists and one had the distinct impression that it was not real, but part of Neverland. So without examining it more closely, we caught the bus (which was standing right there) back to Penzance. We found our next B&B, unpacked and relaxed for a while, went to the Turk’s Head for a second lunch, strolled through the Morrab Gardens and the grounds of Penlee House, and did a coin laundry. It was notable that Penzance, which had looked so exotic to us upon first arrival, now looked rather seedy and unimpressive compared to the lofty cliffs along the coast, the beautiful cove of Penberth, the lush hidden valley of St. Loy, and the incredible quaintness of Mousehole. “Oh…..it’s Penzance again.” Our B&B this time was much less noble than Camilla House had been (although perfectly adequate for our purposes) and life seemed a bit flat in comparison to the adventures we had just been through. I had a headache from the constant blazing sun. We ate dinner at the Admiral Benbow (he’s the chap who finally caught Captain Kidd, apparently) and were amused with its décor, which was garish faux ship-style, with curved beams in the ceiling, ships’ wheels, bright paint with thick shiny varnish, and a fake hatch in the ceiling. We went “home” to our B&B, read, and worked Sudoku puzzles. Maddy has become a complete Sudoku fiend, thanks to me.

June 5

All these B&Bs are charmingly done up with flowered duvets with ruffles, but who wants to sleep under a toasty duvet when the day has been 80 degrees and the nighttime temperature is scarcely any lower?

Everywhere we’ve been, except for Castallack Farm, had seagulls everywhere that screech and wail like peacocks, all night long. One of them sounded exactly like a whining puppy in the middle of the night, a puppy that had been locked outdoors with no friend, food or shelter. Yet I’m sure it was a bird. At breakfast this morning a woman at the next table asked the host about the poor puppy that had been locked outside. “I nearly phoned the RSPCA even though it was the middle of the night,” she said, “I was so indignant.” The host looked blank. “I never heard a puppy,” he said, “none of the neighbors have one. It may have been a gull. It’s breeding season and they do make quite a bit of noise at present.” “It was a dog,” the lady insisted. She began making conversation with me; it so happened she was from London. I asked the population, learned it was 15,000,000 (twice the size of New York City – that’s something to consider) and then her face darkened. “It’s that size because of the immigrants,” she told me. “Everywhere you go you see Poles. And people from Eastern Europe.” She looked as visibly disgusted as if she’d been a white Mississipian in the civil rights days, talking about blacks. I found it striking that she would agitate herself more on behalf of a dog than a Pole, but of course said nothing.

We settled the bill, shouldered our backpacks and set off for the post office (to mail another batch of postcards) and the bookstore (to get a Cornwall book before it was too late) and then the train station. I looked at the city with affection as it shone in the bright, warm morning sun, and realized I didn’t want to leave Penwith. I could very happily spend the entirety of my next vacation in Cornwall. As the train moved out of the station and rolled past Saint Michael’s Mount, I found I had tears in my eyes, and wiped them furtively several times until I mastered myself.

Poulteny Bridge at Bath, on the River Avon
Poulteny Bridge at Bath, on the River Avon

The trip was long and was made longer by mechanical problems with the next train up the track. We pulled into Bath around 4:00 pm and found our B&B, which was totally swank, with a ceiling featuring floral bas-reliefs in the plaster and great swags of salmon-colored curtains with sheer lace behind them. The garden outside was to die for; the poppies were in full bloom and were as wide across as my fully-extended thumb and pinky (eight or so inches across, magnificent flowers). We strolled back across the river into town to get Maddy something to eat, so we therefore missed out on getting in to see the Roman Baths and the Pump Room before they closed. We walked beside the River Avon, looking at the lock, the weir, and the charming old bridge with shops built along it, and we climbed up to the Circus and the Royal Crescent.

Maddy found the whole place off-putting instead of exhilarating, because she does not like anything that is swank or classy, and the sheer magnitude of it gave her sensory overload. I began to regret having brought her there, since it was so obviously wasted on her. Tomorrow we are signed up instead for a day-trip tour to Stonehenge, Avebury and the edge of the Cotswolds. The next day I had hoped to “do” Bath, since Frank and I missed doing properly long ago, but now I’m wondering whether I should try to get us into another different tour instead, to Glastonbury and Wells. It’s a shame to come to a World Heritage Site and not make the most of it, but it’s also no good to have a bored, diffident teenager on my hands who says that she despises this sort of thing in a voice that rings through a crowded street. She has no idea how loud she talks. I wonder if I was the same when I was her age? I suspect I was very similar to her in many ways, but I do know that I was quieter in terms of decibel level.

She confided to me how she feels she was born in the wrong era and in the wrong country, and how she believes that things like Harry Potter’s Hogwarts and other magical worlds actually exist on a different dimension and how sometimes a person can make the dimensions come together and touch. Suddenly I had a strong sense of déjà vu, recalling my awful first year at IU and how I took refuge in fantasy to block out my unhappy “real” life. I had completely forgotten.

June 6

We took an all-day bus tour of Stonehenge, Avebury and part of the Cotswolds today. Maddy was thrilled with Stonehenge and exclaimed over and over how excited she was. It was WAY more crowded than I remembered from 19 years ago, several tour buses from London having rolled up just as we arrived, the visitors all crowding through the gate and shuffling past holding audiophones to their ears. I myself like Avebury better for its vast scale and its picturesque qualities, but Maddy was less impressed because she had never heard of it before. She is now totally enthusiastic about ley lines and believes implicitly in them, although she thinks dowsing for them is bogus. Our tour guide demonstrated the dowsing rods at Avebury, just as Harry had done at the Merry Maiden stone circle, but I realized when I handled them again that the rods naturally cross (as they’re reputed to do if you’re on a ley), and they flip outward if you raise or lower the tips slightly. I think any crossing of the rod tips is completely due to the holder’s own subconscious desire to find a ley, and Maddy is of the same opinion.

Maddy being unimpressed at Avebury.
Maddy being unimpressed at Avebury.
Sunburned selfie at Stonehenge.
Sunburned selfie at Stonehenge.

We drove on past Silbury Hill to Lacock, an astonishingly handsome mellow old medieval-Tudor village with limestone buildings and wider streets than is common (were they built wide perhaps for market purposes, or for driving droves of sheep?). We ate at the King George, which dates to the 1380s and has the oldest continuously-operating pub license in England (although for obvious reasons it cannot have been named the King George back in the 1300s). I had my first hard cider: bubbly and sweetish-tart, a little like sparkling fruit wine. We strolled down to Lacock Abbey after lunch and got in to take a super-quick tour of the cloisters; the rest of the building being closed. I had no idea that it was used as a backdrop in the “Harry Potter” movies. I took what I think are some good photographs inside the ruined old galleries of the cloister, impressed at having just found out that William Fox Talbot (the inventor of the photographic negative process) also lived there for some time.

A lovely medieval lady carved into the church at Lacock.
A lovely medieval lady carved into the church at Lacock.
Lacock Abbey was one of the many places that the Harry Potter movies were filmed.
Lacock Abbey was one of the many places that the Harry Potter movies were filmed.

We drove on the Castle Combe where we spent a half-hour, a ridiculously charming picturesque village only one street wide, with old stone houses of the same era as Lacock. Our guide told us that the villages with the most remaining historic atmosphere are the ones that suffered the worse economic privation in the past and therefore found it impossible to afford any alterations that would have modernized the appearance. The town was undeniably beautiful, but its narrowness seemed almost stifling, and its quaintness almost oppressive. Apparently it costs over half-a-million pounds to buy a cottage there nowadays, so it’s very gentrified.—We went into the little churches at both Lacock and Castle Combe. The first had several original brasses left in the floor, behind velvet ropes, and the second had a Crusader effigy tomb, very impressive.

Picturesque Castle Coombe has been untouched by time because for centuries it was too poor to tear things down and update.
Picturesque Castle Coombe has been untouched by time because for centuries it was too poor to tear things down and update.

We came back to Bath with enough time left over to see the Roman baths. Maddy seemed less interested in the Roman ruins than I thought she might. And she definitely dislikes Georgian Bath, finding it boring. I resolved to forego one more day of exploring Georgian Bath in lieu of taking another day-tour tomorrow to Glastonbury and Wells, since she’s so interested in ley lines and New Age weirdness. (It’s funny that after arguing that she hates Christianity, she’s now apparently interested in looking inside churches, having seen two in Cornwall, two today, and the Bath Abbey yesterday.)

We ate dinner at a little café just above the oval-shaped weir, and then went out at sunset for a “Bizarre Bath” comedy walk with a local stand-up comic and sleight-of-hand artist. Maddy, being completely literal, was barely amused by any of it and asked loudly several times if he could explain. When the comic tonight made a gentle jibe at her expense, even though I had told her in advance to just smile and take it silently, she told him “Same to you” in a tone that sounded exceptionally rude. I should have known that comedy would be problematic for her. I regret having gone on the tour, even thought she had asked yesterday in particular if we could go see this attraction.

June 7

We took the day tour to Wells and Glastonbury. Wells was initially interesting, having a medieval cathedral, the first we’d yet seen (and a magnificent specimen), but it was market day in town and the place was filled with day-trippers, literally thousands of them, and my phobia of crowds kicked in with a vengeance. By the time we left, two hours after getting there, I was completely fed up with the place and could not wait to leave.

This scissor brace was added to Wells Cathedral centuries ago to help brace the sagging vaults above.
This scissor brace was added to Wells Cathedral centuries ago to help support the sagging vaults above.

Glastonbury was different. I had looked forward very much to the tour and knew what we were heading into. When the tour guide was driving down from the crest of the Mendip Hills, he pointed out Glastonbury Tor, which lay straight ahead of us across the Somerset Levels, and my heart leaped at the sight: a high, perfectly shaped tall hill on a misty horizon, surrounded improbably by a flat plain. A tower jutted from the top. The tour guide stopped the bus at the foot of the Tor, which was itself atop another broader, lower elevation, and let all of us off except those who had no interest in climbing (three elderly ladies). There was no way I was NOT going to climb; I had come a long way to get the satisfaction of doing exactly this. Maddy had had enough of climbing hills in the sun, and she stayed at the bottom while I and the others charged up the path to the top.

At the top, sweating and out of breath, I felt no ley line energies prickling the hairs at the back of my neck. I felt peaceful, and reflective, and I walked slowly about on the small top of the hill, examining the 1300s ruined tower and the silver shining “compass” that shows you what you are looking at in each direction, and how far it was. I sat on the grass on the brink and watched the jackdaws fly past beneath me in the air. The Tor is so very high that the viewer can see in all directions over three different English counties. The pleasant pattern of fields and hedgerows stretched in all directions to the far-off hills. I was perfectly happy, sitting there with a gentle hot breeze flowing past, baking in yet another day of unseasonable English heat. I chatted with a fellow American on the tour, a man from Seattle who was interested in King Arthur. He was friendly, a fellow American in a strange but fascinating land. I never learned his name, but I warned him about stinging nettles and taught him that the crows with gray heads were jackdaws, and told him how lively Cornwall was. By the time we descended together, we were friends.

Photo courtesy https://en.wikipedia.org/wiki/Glastonbury_Tor
Photo courtesy https://en.wikipedia.org/wiki/Glastonbury_Tor

When we descended the hill to the bus, which had driven off to town with the elderly ladies and then returned for us, I found that Maddy had gone with them without telling me. “She said she was tired of ley lines,” the tour guide told me. I was horrified at the prospect of searching through all of Glastonbury in every Magick shop and emporium for my niece, and explained that she has Asperger’s. This of course concerned the others quite a bit. But as it turned out, Maddy was fine. She had been hanging out in a New Age bookstore just across from the bus parking lot, and came out when she saw us (“us” being me and the tour guide, who felt somewhat responsible for losing a passenger thus). I ended up allowing her to continue her shopping by herself after lunch, since she expressed the desire to do so, and promised she’d stay in one of the two shops opposite the car park. I went up along the high street to check out the action.

Glastonbury is the very heart of New Age weirdness in England and I saw two practitioners of Wicca striding the streets in black hooded robes. (I must say, black is not a good color for a hot cloudless day, but they DID look impressive.) There were shops selling incense, tarot cards, tattoos, hippie clothing, Wiccan costumes, books on astral projection, Native American beliefs, and Egyptology stuff. The number of groovy individuals walking back and forth was impressive, not to mention the fact that they all seemed very interested in the free exercise of the capitalist system. I bought a lovely little hand-embroidered hippie-chick blouse for £12.50 and went away, quite satisfied, to have a quick look at the ruins of Glastonbury Abbey. There I met my friend from the Tor, and we strolled around the grounds sociably together. He had been there for a while already, and showed me where “Arthur’s tomb” had been, and the cutting of the Holy Thorn (not a cutting any longer, but a tree the size of a crabapple). The ruins were lovely and I was glad I went to see them. Even in a state of ruin, they radiate serenity. I very much enjoyed Glastonbury in contrast to Wells.

Glastonbury Abbey was intentionally destroyed by Henry VIII, its bishop brutally executed.
Glastonbury Abbey was intentionally destroyed by Henry VIII, its bishop brutally executed.

On the way back our guide took another road, this one through Cheddar Gorge, and stopped at the side of the road so we could marvel at the formations towering high above us. The limestone cliffs were brownish, not the color of grey Indiana limestone, and the rocks fell apart along ragged cleavage lines instead of separating in neat layers.

Cheddar Gorge is one of England's most spectacular natural formations.
Cheddar Gorge is one of England’s most spectacular natural formations.

The gorge was several hundred feet deep and very steep and winding, and as the bus labored up the long, long road, the cliffs above were visible through the van’s skylight – indeed, they filled the skylight entirely. When we parked and got out and looked upward, the effect was vertiginous. There were wild (or feral) goats making their way along the sloping grassy shelves halfway up the cliffs. The guide said they were an actual rare species, but they were all multicolored (browns with white markings) instead of uniformly drab, which made me privately suspect they were simply feral.

My feet are killing me, particularly today. I’m simply grateful they did not act up on the hike last week. I have a seeping large blister on one toe, and both little toes have been driven completely beneath the adjoining toes because the boots turned out to be too narrow at the ends. I shall gladly dispose of them when I get home. When I think of how straight and independent my toes used to be, and then look at them crushed and constricted today, I wonder if I’ve caused lasting damage.

[Find the fourth and final installation of this travel journal at https://storiesbycarrol.wordpress.com/2015/07/07/more-from-the-journal-england-part-four/.]