On Seeing Beyond Ourselves

This one’s for the street kids
The runaways and the throwaways
The queer kids and the trans kids
and the druggie kids with empty eyes
who can’t go home even if they wanted to
The travelling kids, the hitchhikers
who no one will stop for
The buskers and the panhandlers
staring at empty streets

homeless boy 1860

This one’s for the homeless
who have no place to shelter
The street people
The cold and hungry people
The ones with no soap
No running water
No take out or delivery
The ones with bad lungs
and diabetes and rotten livers
and damaged skin
who already saw friends die

This one’s for the buskers
and the living statues
and the people in costume
asking a fiver for a selfie
The ones who found
a way to survive
that worked for them
Who used their creativity
to find a way
Who stare at empty streets
with empty pockets
Knowing no government program
will compensate them

This one’s for the refugees
The ones in camps with
bombed out homelands
or drought or flood
behind them
and nothing in front
The ones who have no soap
and carry their water
The ones raising
their kids in tents
with nothing but fabric walls
separating them
from their neighbors
The ones who did
the best they could
and now they’ll see more death

I see you
I hear you

I fear for you more
than I fear for myself

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On Solstice Morning

As it has proved nigh impossible to get my group of regulars together to ritualize Yule (we did have a lovely dinner celebration last weekend) I had been mulling over what I might do by myself to mark the Solstice.

Do something at dawn, I thought. The sun rises at a very reasonable o’clock this time of year (7:36 am local time). But what? I could go out on my east-facing balcony, perhaps. But in the less-than-a-year I’ve been living in this building, I have learned that the east-facing balcony means the rising sun hits you right in the eyes. It would not be easy to be devotional while trying to prevent my retinas from burning out. So I thought, why not stretch myself and be somewhere nice when the sun rises. The Episcopal church downtown has a lovely garden next to it with a Chartres-style labyrinth in the middle of it.

Labyrith in stone

Now, I have a special relationship with that style of labyrinth. The first labyrinth I ever walked (long ago, when dinosaurs roamed the circle) I helped build, with string and sticks and candles at the turnings, on my friend’s property in Indiana (it’s still there, now marked out in bricks). That night, I was initiated in the center of it. Ever since, whenever, wherever, whatever style labyrinth I walk, it brings me back to that night. I am reminded again of my vows.

When most of us met for dinner last Sunday (and tossed around possibilities for an evening ritual) I said, no matter what, I intended to walk the labyrinth at sunrise. This was met with some skepticism, as my aversion to early morning hours is well known. But I persisted. I invited everyone to join me, Everyone declined (whether for previous commitments, their own aversion to early morning hours or doubt that I would show, I don’t know).

So last night I went to bed reasonably early, told myself when I needed to wake up (6:30-7) and slept like a log till 5 am. Grrr. I know myself well enough to know that if I got up at 5, I’d be pretty groggy by 7:30, and a groggy me should not be behind a steering wheel. I decided to risk going back to sleep using the nature sounds thingy and a sleep mask. Because of course, I couldn’t get back to sleep right away. But I did, and I did wake up a little after 7. It would be cutting it tight, but if I skipped coffee, skipped shower and just threw on some clothes, I could make it.

I got out to the car about 7:30, only to find it was encased in ice. The driver’s side door tends to freeze closed, so my first task was to just get that open. Then with all the defrosters on, I went to work with the ice scraper. Now I was officially late. But still, I persevered.

When I arrived downtown (it’s a small town, so we’re talking ten minutes away) I found a parking place right opposite the garden. Good sign! So at about 7:45, with the sky bright but the sun still not visible over the rolling landscape, I hopped across the street and into the garden.

To my surprise, I was not alone. Turns out, the Episcopalians who own the garden have a custom of walking it on solstice morning. They weren’t going to start till eight, though (isn’t it funny how 8am seems so much more reasonable than 7:36?). Two ladies were there already with candles and lumenaria. I asked if I would be disrupting their plans if I walked the labyrinth, too. They welcomed me warmly, asked if I wanted a candle to carry (Sure!) and invited me to either start now or wait until 8am when they would do a blessing for the walkers. I opted to delay no longer and began to walk. By 8, about ten people had joined me, all in silence.

Walking the labyrinth is a moving meditation. In a slightly altered state, I sang Charlie Murphy’s Light is Returning under my breath, along with other fire chants that came to mind. Sometimes I just walked, ruminating on the oaths I took so very many years ago. I stood in the center of this labyrinth for a long time. Facing east, I did a Qabalistic Cross and the Middle Pillar exercise. I remind myself, that of the five of us who stood in the center of my first labyrinth, only three are still alive. I remind myself, that despite all those who have gone, I am still alive. Despite many trials, I made it to the center of my first labyrinth, and walked out forever changed. I made it to the center of this labyrinth, too, and would walk out again to who knows what. But it doesn’t matter what. I still walk on, step by step, around the labyrinth, first one to the center and last one out again.

One of the Episcopalian ladies read a lovely blessing for those who had walked, perfectly suitable for Christian and Pagan alike. I thanked them for letting me crash their partly, and received some hugs in return. “Merry Christmas,” said one aged lady. Happy Solstice, I said in return.

And then, done. I wasn’t ready to go home, so I walked to a coffee house and got caffeine and a bagel with lox and cream cheese (might as well make the morning as ecumenical as possible). I read the New York Times, then came home for a couple of cups of my own coffee, and to write this all down before I forget.

I think I might try to do a circle of labyrinth walks, at noon on the equinoxes (real noon, not daylight-savings-time noon) and just before sunset on Summer Solstice. Once around the wheel again. Just because I can.

The sky here is bright blue with the sun illuminating all the patches of snow on the hills and the mountains. Hummingbirds are visiting the feeder; the jays and woodpeckers are waiting for me to put peanuts on the balcony rail. The cold will get worse for awhile, but a mere six weeks from now, the days will be noticeably longer. As I have said at so many rituals, Winter Solstice is the promise that no matter how long or dark the night, the light returns. Always.

May all your Solstices be bright.

Light is Returning, Charlie Murphy

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An Open Letter to My Peers and Students…

To all my friends who learned ritual and magic way back in the day when I did:

  • Please teach.
  • Please do public rituals.
  • Please start training covens/circles/temples/whatever.
  • Please pass along your depth of knowledge and skill as we were taught by people who were deep in their knowledge and skill.
  • Please give people the opportunity to learn from your example and mentorship, not just from books.
  • Isaac Bonewits standing at altar with flames rising 2008

    Isaac Bonewits 2008

    I am constantly meeting people who are so hungry for the real thing. They don’t even quite know what the real thing is, but they know something more must be possible. It’s just that, they don’t know how one gets there.

    So many people have never experienced the powerful rites that we took for granted. They are earnest, they are committed, but they don’t know what can be achieved because they’ve never actually experienced it.

    We can’t (and some would say shouldn’t) teach everyone. Over the years, I haven’t taken on that many personal students. It’s hard work, and if you move around the country a lot as I have done, it’s not possible to do one-on-one work with people for long periods of time. (And yes, teachers of mine, you were right; students will break your heart.) So you do what you can do, which is heaps better than doing nothing at all.

    I would not be the practitioner I am today without the generosity of those who shared their skills and experience with me; to name a few: Christa Heiden Landon, Althea Northage-Orr and the late John Northage, Alan Salmi, Aidan Kelly, my beloved Isaac, of course, and many more, some well known, many not.

    I also owe something to everyone who gave a workshop I attended, or put on an event, or officiated at a powerful ritual that I had the privilege to attend. All you old-school Pagans and occultists in Chicago who set such high standards, I owe you.

    We’re getting old. We’re dying off. Too many of those who drove the scene (however you think of it) are already gone. (If you think at 50 or 60 you automatically have decades still ahead of you, believe me, it’s not something you can count on.)

    Students and initiates of mine, have you trained at least one person? Have you done a ritual for guests or for the public so they can get a sense of what good ritual feels like? Have you done a presentation or given a lecture or led a workshop? Have you done these things the past decade? If you have, bless you, keep it up. If you haven’t, give it a shot. Do it for me.

    Heck, do it for everyone. And for the ones who will come after them.

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    Did You Know? #3. The Wheel of the Year (Part 1)

    Everyone talks about the Wheel of the Year, but where did it come from? A first installment about that famous cycle

    #3. The Wheel of the Year: The Basics

    The Wheel of the Year is the name given to a cycle of eight seasonal festivals spaced approximately every six weeks throughout the solar year. These celebrations are also known collectively as Sabbats, High Days, the Eight Great Festivals, the Greater and Lesser Sabbats, the Quarter and Cross-Quarter Festivals, or other names depending on your tradition.
    Graphic of the Wheel of the Year

    Four of the holidays are based on observable solar events, and in the Northern Hemisphere will fall on or about the following dates:

    Spring Equinox March 21 (Sun enters Aries)

    Summer Solstice June 21 (Sun enters Leo)

    Fall Equinox September 21 (Sun enters Libra)

    Winter Solstice December 21 (Sun enters Capricorn)

    The equinoxes are days when day and night are the same length—equal. From Spring/Vernal Equinox onward, the days get longer and the nights shorter until Summer Solstice, which is the longest day and shortest night of the year. In far northern or southern latitudes, the sun may never totally set. After Summer Solstice, the days gradually become shorter and the nights longer until Fall/Autumnal Equinox when they are again equal. The nights then become longer than the days until Winter Solstice, which is the longest night and shortest day of the year.

    The Solstices and Equinoxes are in some traditions called Quarter festivals, or the Lesser Sabbats.

    The other four observances fall more-or-less between the solar dates. Some groups choose to observe them at the exact midpoint between solar events, but they are most commonly observed on specific calendar dates:

    February 1 Imolc, Candlemas, Brigid, Oimelc

    May 1 Beltane, Bealtinne

    August 1 Lammas, Lughnasadh, Loaf Mass

    October 31 Hallowe’en, Samhain, All Hallow’s Eve

    These in-between-solar-events festivals are often called Cross-quarter Days, or the Greater Sabbats.

    As you can tell from their various names, this second group of holidays has strong roots in Celtic and British cultures. The cross-quarter days were the traditional dates in Britain for collecting rents and taxes and other quarterly activities.

    Many people observe cross-quarter days starting on the night before. In the Celtic calendar system from which they were originally derived, the new day started not at dawn or at midnight but at sunset the night before, similar to the Hebrew calendar system. For one holiday, Hallowe’en or Samhain (SOW-when), the eve is observed by Pagans while the next day, All Hallows, is ignored.

    The solar holidays are not always named, although Winter Solstice is also known as Yule and Midwinter, and Summer Solstice as Midsummer. Spring Equinox is increasingly popular as Ostara, but that is as much a back formation from the link between Easter and the equinox as it is a known date for a festival of the Germanic vernal Goddess Eostar/Ostara.

    Summer Solstice and Fall Equinox are also known as Litha and Mabon, but those names are completely ahistorical; they were first applied to the festivals in the 1970s by Aidan Kelly, who thought it would be more aesthetically pleasing if all the Sabbats had Celtic names (although Yule and Ostara are clearly Germanic). Although there are Celtic heroes and observances using those names that happened vaguely around the same dates, there is no historical evidence of those names being applied to Summer Solstice and Fall Equinox before Aidan Kelly did so. But the new names caught the attention of Oberon Zell, the editor of the influential Pagan magazine Green Egg, who liked them and popularized them. Such is how modern ancient Pagan traditions are born.

    There is also no record of any Pagan religion before the modern era observing all eight holidays, although there is evidence that each individual holiday was celebrated by some group at some time. The Celts, for example, observed only the cross-quarters until the Romans introduced solstice observances; some regions celebrated either Summer or Winter Solstice, but not both. The equinoxes were the least observed of all. Though all were celebrated somewhere, at sometime, by Pagans, the cycle of eight that we call the Wheel of the Year is a modern invention.

    But even if there is no precedent for observing all eight as an integrated system before the 20th century or so, it’s a good, workable Wheel. And it’s especially nice because the Wheel of the Year provides the perfect reason to have a good party every six weeks!

    Isaac Bonewits’s Neopagan Druid Calendar

    Eight Sabbats for Witches by Stewart and Janet Farrar

    Wheel of the Year: Living the Magical Life by Pauline and Dan Campanelli

    The Stations of the Sun: A History of the Ritual Year in Britain by Ronald Hutton

    The Wheel Of the Year At Muin Mound Grove, ADF by Skip Ellison

    The ADF Dedicant Path Through the Wheel of the Year by Michael J. Dangler

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    Did You Know? #2. The Hermetic Order of the Golden Dawn

    Magicians and mystics from more than a century ago had tremendous influence on both occultism and contemporary Paganism. Number 2 in a series of brief looks at esoteric history and practical magic.

    2. The Hermetic Order of the Golden Dawn

    Back of Thoth Tarot card showing the Rosy Cross with Isaac Bonewits's ex libris stamp

    Back of Thoth Tarot card showing the Rosy Cross with Isaac Bonewits’s ex libris stamp

    The Hermetic Order of the Golden Dawn was an influential magical lodge whose heyday spanned the last years of the 19th and the early years of the 20th centuries. Many famous people of the period such as the poet W.B. Yeats, actress Florence Farr, A. E. Waite, the controversial Aleister Crowley, and others were members of HOGD and its various descendants and offshoots.

    Members of the Golden Dawn entered at the Neophyte grade (0=0) and progressed through additional grades (up to 10=10) as the result of study and merit. Each member had a mentor who was only one grade above them, because they believed that once you got too far along in your occult studies, you wouldn’t be able to explain things in a way that a beginner could understand.

    The numbers of the grades relate to positions on the Tree of Life, a diagram from the Qabalah, a system of Jewish mysticism which influenced Western esotericism as early as the 16th century. HOGD was deeply influenced by the Qabalah and other traditional aspects of Western occultism, classic occult texts such as the Key of Solomon, the Enochian system of John Dee, and writings of early 19th century occultists such as Frances Barrett and Eliphas Levi.

    Tarot was part of the Golden Dawn curriculum, although it was studied as a tool for inner development not for divination. Members drew their own decks using the Order’s symbolism. In 1910, Arthur Edward (A.E.) Waite collaborated with Pamela Colman Smith to produce a Tarot deck to his specifications. The deck, published by the Rider Company and known since as the Rider Waite, has influenced modern Tarot profoundly right up to today. Near the end of his life, Aleister Crowley also collaborated to produce a deck, with artist Lady Frieda Harris, but it was not published until 1969, almost two decades after his death. His Thoth deck differs, in some ways radically, from the Rider Waite, and is highly prized by many occultist.

    Although the Golden Dawn’s teaching documents and rituals were considered secret and only available to members—and members of the appropriate grade at that—mid-20th century, many of the documents, practices and rituals of HOGD were published by Israel Regardie, who was once Aleister Crowley’s secretary and an initiate of a Golden Dawn offshoot. The National Library of Ireland holds W.B. Yeats’s HOGD journals and has exhibited them.

    Golden Dawn ideas and rituals strongly influenced magical and occult/religious practices all through the 20th century, and still in the 21st. Many groups claim to be direct descendants of the original HOGD, but there is much dispute over this. Sadly, I am not qualified to judge which of those claims are valid.

    For further information:

    The Golden Dawn by Israel Regardie

    Women of the Golden Dawn by Mary K. Greer

    What You Should Know About the Golden Dawn by Israel Regardie

    GoldenDawnPedia FAQ

    Interactive Online Exhibition of The Life and Works of William Butler Yeats at the National Library of Ireland
    Of interest is the section called “The Celtic Mystic” which shows artifacts from his time with the HOGD

    Images from a copy of W.B. Yeats’s HOGD journal

    Tabitha and Chic Cicero’s website

    “The Golden Dawn is Alive and Growing!” blog post by Donald Michael Kraig

    The Hermetic Order of the Golden Dawn on Thelemapedia

    The Golden Dawn Lectures

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    Did you know? #1. 19th Century Romantic Neopaganism

    I’m starting a series of brief blog posts about Pagan and occult history, called Did You Know? Hope you find them of interest…

    Die Heilge Stude (The Holy Hour) 1918, painting of sun worship

    Die Heilge Stude (The Holy Hour) 1918

    1. 19th Century Romantic Neopaganism

    The word neopaganism was first coined in the mid-19th century to describe a segment of Romanticism, which was an artistic response to the dawn of the industrial age. A subset of Romantic poets, playwrights, and artists used metaphors from a highly idealized European Pagan past to illustrate the dissonance between industrialization and their more recent rural past. Figures such as Pan, satyrs, and fauns were used to stand for a sense of connection with nature that that they felt was being lost.

    19th-century Romantic neopaganism influenced the start of many back-to-nature movements, nudism and other natural lifestyle movements. There were quite a few Germans, for example, running around naked worshiping the sun in the late 19th and early 20th century. It’s from these movements that we get the idea that Paganisms are nature religions. It’s also from these movements, which were often very nationalistic and local heritage-focused, that the idea grew that only certain ethnicities should practice certain religions.

    In the 1960s and 1970s, the word Neopaganism was resurrected by Oberon Zell-Ravenheart (Tim Zell) of the Church of All Worlds to describe contemporary Pagan practice, and then picked up and further popularized by our very own Isaac Bonewits.

    For further reading:

    The Triumph of the Moon by Ronald Hutton

    Hippie Roots & The Perennial Subculture

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    On Gifts, Friendship, and Love

    I’m not going to say that it’s been a long time since blogged (although it has been more than two years) but let’s just say I almost couldn’t remember how to log in. For quite some time now I haven’t seemed to have the concentration to write. But one story has been on my mind a lot lately, so I feel I need to share while I can form the thoughts.

    It’s sort of a Christmas story, my favorite happy/sad holiday memory from December 2009.

    Isaac and I liked holidays. In October, we’d put up a little Halloween tree with wizard and witch ornaments, transition that to Thanksgiving-y harvest decorations & then on to Yule. We both had collections of holiday decorations formed over the decades, and we’d have fun putting up a little tree. He collected Santas, especially those that were more like the Ghost of Christmas Present or vaguely Druidic, green robed Father Christmases, or white-robed wizardly ones. I had holiday dishtowels, Twelve Days of Christmas drinking glasses, and tons of vintage cookie cutters. We took great pleasure in the festiveness, although it was always a little hard on me because I was working retail during most of our years together.

    The holiday season in 2009 was different. Isaac had been diagnosed with cancer in early October. By December he was still getting chemo and radiation, both very hard on him. I was taking him to treatments and doctor’s appointments anywhere from once to three times in a day, five days a week. Weeks of radiation treatments were frying him from the inside out. The chemo had miserable side effects, usually at their worst during the middle two weeks of the month. At those times, he couldn’t do much beyond try to get comfy on the sofa, which wasn’t easy because of the radiation burns.

    At the same time I was working the holiday season at the mall. I’d done it before, but this was maybe the second year when the mall decided it had to emulate the crazy extended hours that big box stores had adopted. As December progressed, it was required that our store to be open longer and longer, sometimes as crazy as eight in the morning until midnight. You might say, well, lots of stores stay open that long, and you’d be correct. You might say, so what’s the big deal? Well, our small store had a grand total of three employees all year round. The three of us had to cover all the store’s needs over those sixteen hours, while still accommodating days off (no overtime–that would cost the corporation money!). Sometimes, with commuting time figured in, an employee would have less than eight hours between the end of one shift and the start of the next. I know some employees at other stores would just sleep in their cars in the parking lot. Luckily, I lived close enough so I never had to resort to it.

    Thus, that December a typical day for me was take Isaac to the radiologist first thing in the morning, get him home, maybe put on a crock pot, go to work, come home, often quite late, and then get up and do it all over again. As the mall began to open earlier and earlier, I’d drop him off at the radiologist’s, and he’d have to take a cab home (he couldn’t sit upright in the car, so his driving anywhere was out of the question). When I had my days off–always weekdays, of course, at that time of the year–I still had to get Isaac to multiple medical appointments. I hardly felt like I had days off at all.

    (In addition, either of us had a clue that the whole time I was nursing Isaac through his cancer, I had cancer myself, second or third stage non-Hodgkin’s lymphoma. Two and a half years later, I’d finally be diagnosed when it reached fourth stage. No wonder I was tired!)

    By mid December, I was exhausted, mentally and physically. I had no holiday spirit whatsoever. Nothing. Nada. Zilch. I was a bitter, hollow-eyed shell, hating what the so-called festive season was putting me through. One day I came home from work and told Isaac, “The only thing Christmas means to me is that I’ll get a day off.” And I absolutely meant it.

    Days later, the Hermes Council, Isaac’s men’s group of some twenty years, was scheduled to meet. (You can read all about the Hermes Council in his book The Pagan Man .) The guys were going to meet at our apartment, small and cramped and chaotic as it was, because he really didn’t have the strength to go anywhere else. Women weren’t allowed at Hermes Council, but that didn’t matter because of course I was working.

    When I got off of work the night of the meeting, I hoped I wasn’t getting home too early. The Hermes Council was very special to its members and I didn’t want to disrupt their time together. But I was really to exhausted to head anywhere else. I decided when I got home I would go hide in the bedroom and hope they’d overlook the intrusion.

    As I feared, when I first opened the door I saw the Council members were still there. But the second thing I saw made me stop dead in my tracks. A Christmas tree. Lights strung around the room. Garlands on the bookcases and over our computer desks. Isaac’s favorite Father Christmas ornaments and figures on display.

    I did the only thing a reasonable, exhausted person could do. I burst into tears. I just stood in the entrance way, crying. Partly from happiness, partly from relief, partly from gratitude.

    Our friend Vann came over and gave me a big hug. “I hate all this Christmas stuff,” he told me, “but seeing what it means to you makes it worth it.” So of course, I cried even more.

    That night was the brightest spot of a miserable season. I thought I would burst from gratitude. I love those guys to this day, each and every one.

    That Christmas of 2009 was the last holiday season Isaac and I had together. He passed the following August. I haven’t really done much fussing for the holidays since then. Partly because after you lose someone, holidays seem off. Partly because in the course of moving, almost all of those treasured holiday decorations got left in New York. (Long story, that.) Mostly I just haven’t had the heart to bother. I helped hang a few ornaments on my friends’ tree in North Carolina, but I felt disassociated from it. Living alone the last couple of years, I really haven’t done anything at all except to put on display the cards I received. It all seemed too much, too ephemeral, too stressful.

    This year, I was invited to a tree-trimming party by a local Pagan group in Oregon, where I now live. As I hung an ornament or two on the tree, all the memories of that night, almost to the day five years earlier, came rushing in. I had to leave the room to shed a few tears. But I was able to go back and hang a few more.

    Now I’m in the suburbs of Chicago getting ready to celebrate Christmas with my family for the first time in about 15 years. (When you work retail, holiday travel is next to impossible.) Last night I helped my sister and her family decorate a tree with all the ornaments they’ve collected over the decades. I could relax and enjoy it in a way I haven’t done for many years. I’m grateful for that.

    I’m also grateful, and always will be, to the Hermes Council for their gift in 2009. Hey, I miss you guys! I want you to know how much that simple act meant to me. I’ll never forget it, or you.

    Nope, no bah, humbugs from me. Merry Christmas, if that’s your thing. Happy Yule, Blessed Diwali, Happy Kwanza, Happy Hanukkah, Happy New Year, Happy Whatever Winter Holiday of Your Choice. Bring back the Sun with love and laughter, and do what you can to make someone else’s holiday bright. I think Isaac would agree with that.

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    Coming Out of the Cancer Closet

    Today is my birthday. I am 61 years old, which means I have reached one more birthday than did my late, beloved husband Isaac. It would not be such a milestone except for one odd fact—just as Isaac was diagnosed with cancer in his sixtieth year, so was I.

    I don’t have the same cancer as Isaac did, nor the same prognosis. It’s a lymphoma, a liquid cancer, so there are no tumors to be removed. They tell me this kind of cancer is treatable, but not curable. I’m hoping that means I have years and years ahead of me, but until they see how I respond to treatment (I’ve already had two rounds of chemo) no one knows. They also tell me I’ll feel better after a few treatments, but I’m still waiting for that to happen.

    I haven’t written about this publicly before because it’s been hard to know what to say. I have drafts of this post that sound cranky and angry, and some that sound maudlin. Both are true reflections of where I’m at, although neither by themselves are entirely useful. This is my new normal, so I guess I might as well get used to it. However, the new normal is not much fun. I feel like I’m getting the flu, or have the flu, or am getting over the flu, pretty much all the time. If you’ve ever tried to get stuff done when you have the flu, you can imagine what a pain it is to get through an average day. It’s really getting old.

    On the upside, I’m glad I moved to Oregon before this hit me full force. Had I waited only six weeks longer, I wouldn’t have been well enough to drive cross-country. I also get to joke that moving to Ashland was on my bucket list—good timing! Ha, ha. But more importantly (and seriously) the medical community here is quite good, very collegial. They all talk to one another. I really feel like there is an entire team on my side. And of course, they did something that doctors in two other states with fine medical communities could not, which is give me a diagnosis. I’ve been having symptoms periodically for years and years, but no one could figure out what was wrong. It turns out that’s not uncommon with this type of cancer. The cosmic joke becomes that all the time I was nursing Isaac through his cancer, I had cancer myself. That irony continues to boggle my mind. No wonder I was so tired all the time. And I thought it was just overwork and stress.

    On the downside, I’m living alone now, which is hard. I got ill so quickly after I arrived here, I wasn’t able to develop much of a friendship or support network here, either, which has also been hard. I hope if they are correct about my feeling better in a few months I’ll be able to network more. But right now, I feel pretty isolated. I am so grateful for my online friends, and long-time friends (and family) who keep in touch with me online. You have been an immense support for me as I muddle through this.

    So if you’ve written to me and I haven’t written back, or were hoping I could do something for you but I haven’t been able to, I hope you understand.

    Yes, I will accept all your prayers, good thoughts, and healing energies. This has all been pretty depressing, but it has let me come to the realization that I’m not ready to give up yet. So I will accept all help to keep me going. Send away!

    But some things I do not want from you. (Here’s the cranky/angry part:)

    Please don’t give me any advice. Please. Don’t tell me what I should be eating or drinking, don’t tell me what treatment I should be getting, and don’t tell me what cured Uncle Joe’s or your sister Carol’s cancer. Please do not tell me these things. It’s not that I don’t appreciate your concern. I know the advice and recommendations are being given from a loving place (mostly; some people are just busybodies). But it upsets me, for several reasons.

    The first is because we got tons and tons and tons and tons of advice and recommendations when Isaac was sick. I got a pretty darn good education on cancer then, and I really don’t feel the need to be told everything all over again. My Google-fu is strong. I’m a good researcher; Isaac used to tell me I was a better Internet researcher than he was. It is wearying—nay, exhausting—to be told the same thing over and over and over again. I appreciate your concern and love. Send that, not advice.

    The second reason is that we investigated a lot of stuff and tried a lot of stuff with Isaac, and he died anyway. And that upsets the hell out of me. He died, dammit, despite the fact he had a positive attitude (he was extremely cheerful and optimistic) and despite magic, and despite conventional medicine and despite alternative medicine and and despite “charged” water and odoriforous herb teas. That experience taught me that a lot of things may help, but there are no guarantees. None, zip, nada. So don’t tell me something “will” work, or is “guaranteed” to work or “cures” cancer. I just cannot take it seriously.

    Please also respect that I have common sense, that I know when to come in from the rain, that I know when to take naps, that I have a grasp of what constitutes good nutrition, and that I’ve had a pretty good first-hand education in dealing with the side effects of chemotherapy and other cancer treatments. Send hugs, send love, but don’t send advice. It’s exhausting to be told the same things over and over, and I’m exhausted already as it is.

    I especially need to remind folks that “cancer” is not a monolithic disease. There are thousands of different cancers, and thousands of ways to treat it. What works for one kind of cancer may do nothing for another, or even make it worse. And the field changes rapidly. There may be something available to me that was not available to your Aunt Matilda (no disrespect to Aunt Matilda) a couple of years ago. Or a “standard” treatment may now be discredited. That’s why I’m paying the oncologists the big bucks, so they can keep up will all that. My experience with the medical people here has been great, really great. I trust them. You haven’t met them, so please do not give me your opinion of them. What I’d really like you to do is to send them energy, too, so their intuitions and skills stay high.

    Which brings me to the issue that is perhaps the most important to me. All you, my readers, (and to an extent my friends and family, too), know about my condition is what is in this blog or my posts or what I tell you. You do not know my complete medical history. And you won’t, obviously. So if you were to give medical advice, you have no way of knowing if it is in the least appropriate for my specific situation. Thus, I ask you to please respect my medical privacy. I will talk about what I feel comfortable talking about, but not about everything. If you ask questions, I may answer them or I may not. They may come from love and concern, or they may come from idle curiosity. Either way, I will feel no obligation to answer. And if I say, “Thanks, but no thanks” to something, it is unlikely that I am going to go into detail as to why. Please understand.

    Anyway, telling you all about this is how I chose to celebrate my birthday today. I feel grateful that I have a birthday, and as the days continue, I will feel grateful that I can continue to put one foot in front of the other. Maybe it’s not much, but it’s what I can do.

    Posted in Personal Happenings | Tagged , , | 8 Comments