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This story starts with a dog, and ends with another. It’s long, and touches on sensitive subjects, with raw, open, honesty. The last 10 months have been quite a journey, full of sorrow, shock, a moment of extreme clarity, a lot of contemplation, reflection, unexpected dreams, and then resolution, when the dream became reality.

It started with watching the slow decline of our elderly dog, Kasha, who had a number of health issues. The most difficult was degenerative disc disease, and as last summer turned to fall, she was having increasing difficulties controlling her rear legs.

Then came a shocking phone call, when I found out my spinal x-rays didn’t show the herniated disc I expected, but instead showed that I, too, have, “severe multilevel degenerative disc disease,” on top of everything else.

I was caught way off guard. I had been working on the premise that I am going to get the ME/CFS under control, using all my supplements, and that one day, once I figure out these migraines or get thru perimenopause, I was going to be back to some semblance of myself – I know there’s damage that will always be there, but I think there’s a lot that can be fixed, too, slowly, over time.

But, it’s basically going to be with me the rest of my life. There are a few things I can do, some supplements and maybe some physical therapy, and I’ve gotten a TENS unit that helps. But my spine is very unstable – I’ve been going through periods for two years, where I “throw my back out,” and I can feel the discs moving out of place, and pain and sciatica flares like a bonfire.

After absorbing this news, I walked out into the living room to find that Kasha had lost control of her bowels, and there was a trail of poop leading through the living room and onto the porch. She was lying there looking so very ashamed.

It triggered a moment of extreme clarity, a frozen moment in time, where I knew two things for certain:

Kasha was at her “red line,” the place where dogs with degenerative disc disease are no longer recoverable – it was not going to go away with rest and time, and was going to be the end of her, and soon.

And just as clearly, I felt that I, too, now have a red line, though I’m not to it yet. My mind played it out for me… me with a walker, or in a wheelchair, although I don’t know how I could even use either because of a torn up shoulder, and the weakness and utter exhaustion of ME, CFS, fibromyalgia, etc.

There was the feeling of a door slamming shut in my mind, those images simply shut out. I won’t, I simply can’t, live in a condition where I’m bed bound and need a wheelchair just to get around. And I won’t be that kind of burden on Rhiannon and Ben, either.

I wasn’t afraid.
I wasn’t sad.
I felt acceptance.
And, much to my dismay, I felt relieved.
Relieved, because the long fight would be over. I didn’t realise how very tired of the constant struggle I was.

I didn’t so much as make a decision as have one thrust on me from deep in my soul. Just as Kasha would find her peaceful end, in a beautiful, sacred, manner, when the pain became too much and when she couldn’t rise, I too, would find that place.

I have many friends, fellow patients, who have to use wheelchairs or walkers or scooters, and I have the utmost respect for them.

But that’s simply not something I can accept.
I have been sick for more than 17 years, and almost entirely housebound for 10 years.
I cannot accept any further limitations on my ability to move around.

I am meant to roam mountains and walk through my beloved woods.
I am meant to be a wild thing, and I can barely take the captivity I have already been in for much longer.
I am the wolf, tightly caged, pacing back and forth, going slowly crazy from my longing to be free.

But here was this realization that I wasn’t ever going to go running barefoot again, through the golden autumn woods calling to my Heart that day, because my spine is simply too unstable. That’s a huge and terrible loss, and the shattering of all the dreams and plans I’ve been holding on to… I wanted to get well enough to be able to help some of my dearest friends, my soul sisters with ME, CFS, fibromyalgia, etc, maybe share a house with them, all of us working to heal each other.

I watched each day as Kasha had a few ups and lots of downs, and it was like watching a train wreck in slow motion, knowing it was heading my way…

In the months since that moment of clarity, and through Kasha’s gentle passing, the sacredness of her death, a gentle release with mercy, I’ve spent many sleepless nights, thinking about just what I wanted to do, and how much fight was left in me for this new, seemingly insurmountable, challenge to my health and my life. There are things I want to do, and things I need to do.

And then along came some dreams, and some info about dogs, that had me reevaluating how long I am willing to fight to go on.

Twenty years ago, living in fear from a relationship gone terribly bad, I lay awake in bed at night, too stressed and worried to sleep. I found solace in meditation and visualization (shamanic journeying). Usually, I would “go” to a beautiful forest at night, and run as a wolf until I finally curled up, safe, in my den. I’d fade off to sleep that way.

But one night, instead of being in my forest, I found myself high on a rocky outcropping, in a sea of rippling sand. I could see in every direction around me, see that I was safe. I laid down in the sand, pulled my cloak around me, and felt desert winds deposit a soft blanket of sand on me. For years, every night, I went to the desert to sleep.

I studied the desert as it is today, and as it was. I drove my family crazy with my sudden obsession with the desert. I didn’t explain that the desert had come to me, unexpectedly, but it was saving my sanity.

The decades passed, and I eventually went back to my forest – until my moment of clarity. Ever since then, every night, I retreat to incredible vistas of desert dunes, open caves and hidden chambers. This time, though, there is something else there with me: a lean desert dog, colored the same as the sand, and with electric eyes that look right through me. I know the feel of her soft ears, and my fingers remember the shape of her head under my hand.

Salukis, a beautiful desert Sighthound, have fascinated me since the desert came to me. They are perhaps the oldest of all dog breeds, and the only type of dog who was not seen as “unclean.” Desert nomads have cherished the Saluki for thousands of years. I’ve wanted to have a Saluki or Saluki mix for 20 years.

But now, through chance, I learned that most people in the middle east treat dogs in horrible, horrifying, ways. They do not value them as we do. Many Salukis and other dogs are simply dumped in the desert when the owner tires of them, or if a racing Saluki doesn’t run fast enough. Some racing Salukis have their ears cropped off “to make them run faster.”  The Salukis have bred with the many other dumped dogs, and now “desert dogs” are pretty much a breed of their own – small Sighthounds, usually with short fur and tails that spiral into a curl.

The pictures are terrible to see. Dogs so emaciated you can’t believe they are alive, or who’ve been viciously beaten, or thrown out of a moving car, leaving them with broken legs. Dogs who have been shot by the police, in front of children, when an area has too many strays. Dogs beaten with stones by children, who know no better. Need I go on?

It broke my heart.

The question changed from “when” to give up the fight, to a very simple, “do I want to die without first rescuing a desert dog? Or do I want to hold on long enough to rescue my dream dog, a true desert dog, and experience her life with me?”

Adopting a dog from the middle east can be somewhat complicated, but there are many groups and individuals there, mostly westerners, who are involved in rescuing the ones they can, fostering them a time, then finding them new homes in the U.S. and Europe. Some send the dogs to the U.S. first, and then put them up for adoption, and others work directly with those wishing to adopt.

I began watching the various groups on Facebook in late winter, and the number of dogs needing new homes is overwhelming. But if I was to rescue one, it had to be the one from my dreams…

And then, there she was. A desert dog with electric, topaz blue eyes, just as I’d been dreaming of. I really didn’t think she could exist. But she does.

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Ellie is about one year old, and was found dumped to starve or fend for herself. Despite that, I hear she’s an incredibly loving and gentle dog. She’s not too big, and not too small, either, weighing in at 40 pounds.

After weeks of working on arrangements, my Ellie will be flying from Dubai, in the UAE, home to me on Monday, June 27. What a birthday present!

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For me, Ellie is Hope – hope that I will have improvements in my health, and she is incentive to keep on fighting, keep on going, no matter how hard it sometimes is. By fulfilling my dream of having a desert dog, my motivation and inspiration to keep moving forward to experience her whole life with her is immensely boosted. That’s just how much I love dogs.

I’ve also become close friends with Ellie’s amazing rescuer, Charlotte, and with Marci, who is practically a one woman whirlwind of dog rescuing in Al Ain, UAE. I am completely in awe of what they are doing, and will be forever grateful for all the hours of work, time and money, that went into getting Ellie cleared to fly and come home to me.

I’ve set up a fledgling Facebook page for them, in the hope of helping other dogs find homes. It gives me inspiration, to know that I can still do something with my life, even if all that it takes is monitoring a Facebook page. I’m not completely useless, after all.

I believe everything happens for a reason. It was not coincidence that I learned about the desperate conditions for dogs in the middle east, and it was not coincidence that Ellie showed up in need of a home, the dog from my dreams, one I didn’t think could possibly exist.

Ellie of the Topaz Eyes is the fulfillment of a 20 year long dream. If she can happen, what else might be waiting around the corner? All I know is that I have Hope again.

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Pull up a chair, my tribe, and I’ll tell you a story, of the Before Times, which I rarely speak of – of my life before illness, which was an unusual one by anyone’s standards. It is a bitterly cold night here on the Mountain, 8 degrees and snowy, and gazing at that snow, so incredibly fine due to the very cold air, I see it sparkle in the deck lights, and am reminded of another snowy night, so long ago, almost half a lifetime now…

I remember…
…being a single mom living with my 7 year-old daughter in a very poorly-built log cabin, with no running water, in Ohio. I hadn’t planned to be there on my own… a marriage had recently ended badly, leaving me broken-hearted and financially-ruined. I found myself enrolled in college, learning to be a naturalist or forest ranger by day, and returning home in the evenings to a great deal of responsibility… “living rough” had seemed a fine idea when I was married to someone who people compared to the “Marlboro man,” but it was a daunting prospect for a woman alone…

After a long day of college classes that involved much hiking, near sunset on a bitterly cold Winter evening, I wearily climb the steep hill to the cabin, my daughter at my side. It is cold inside, too – the cabin is heated only by a woodstove, and, being incredibly drafty, requires a constant, roaring, fire, but the fire has been banked all day, down to a slow burn. I pile on wood and get it warming up, then move outside to chores as the daylight fades.

I break the ice in my rain barrels, and tend to my two horses, and feed far too many wolves. With what little energy I have left, I scrape together dinner for my daughter, and try to be there for her. I don’t do a very good job. My situation is overwhelming, is desperate, and I don’t know how I will get through it. I am deeply depressed, but trying not to show it.

But after she is tucked in bed, I pull my boots, coat and warmest gloves back on, and go back out into the biting cold to split wood. I have just used up all the already split wood to warm the house for the evening. Cutting and splitting the wood by myself is a never-ending chore, and I cannot get caught up.

The Moon is full and bright overhead, reflecting off the snow, and I can see my way clearly. I have no outside lights, so I glance up, thankful of the Moon’s brilliance. The snow crunches and squeeks under my boots, as it only does when it is so cold. I struggle to put a snow-covered log up on my chopping block. The splitting maul is lifted and brought down on the log with a well-practiced, if exhausted, stroke, and that moment is when the Magick happens, when everything changes…

The snow and ice on the top of the log suddenly explodes up around me in a powder-fine cloud, and every single flake, every single speck, sparkles in the moonlight with glittering rainbows, as it flies up around me and ever, ever, so slowly falls.

It is as if I have been showered with finely ground diamonds, or fairy dust, each speck shimmering with all the shades of the rainbow – deep blue, purple, scarlet red, fire orange – and the bright white of the Moon as they fall.

It is perhaps the most beautiful thing I have ever seen, and all because we were out of wood on a cold winter night.

I stand there in astonishment, as the cloud of glimmering diamond snowdust settles on and around me, and then gaze up at the bright Moon above me.

If I had needed a sign that even in one’s darkest hour there is Beauty, there is Hope, then I had surely been gifted with one, and I had, indeed, needed just such a sign.

It seems it is a fine and beautiful night for chopping wood after all, and I split enough for several days, laughing like a child as the rainbow-sparkling snowdust falls all around me and the glorious Moon shines down from above.

The memory of the unexpected and breathtaking Beauty of that night is a treasured one, and one I think of often. It holds and sustains me through the dark hours, and helps me find the Beauty, Inspiration, and Hope, to keep going… just as it did then.

The Moon is Magick and Mystery,
yes, and so are many other things.
If we but look,
there are signs and guideposts
all around us, pointing the way…
We have only to open our Hearts and truly See.

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ME/CFS patients are often under a great deal of pressure to “stay positive” and told to “visualize yourself healthy and strong again, and you will be.”

This type of “magical thinking” puts an unfair burden on a person who is already suffering terribly.

If they do not improve, then they may be blamed by others for “not trying hard enough” or “not wanting to get better.”

The unfortunate reality is that this very real, physical, disease process very rarely goes into remission.

It is usually an agonizingly slow downward spiral into what we call “the living death.” There are good days & bad days, good months & bad months, and sometimes, even the odd good year – relatively speaking (a healthy person would call it utterly horrible).

ME/CFS is complicated, and similar to a cascading system failure in a computer – it starts one place, but spreads to involve almost all the body’s systems.

It cannot be “wished away,” no matter how hard you try.

A few weeks ago, at the doctor’s office, the nurse, who was new, decided to go through the whole CFS checklist. It’s quite long. One of the questions:

“How are you doing on your goals?”

I was slightly dumbfounded. They never ask these things.

“My goal,” I told her, looking at Rhiannon, “is to stay alive until she is 18, so I guess I’m doing okay.”

The nurse looked at me with shock. Later, when she had me alone, she lectured me, about how I had to be more positive, and I needed to spend time imagining myself as vibrantly healthy, and then I would be.

However, I explained:

  • I’ve had chronic daily migraines for years, which have given me hour upon endless hour in forced seclusion, meditating and visualizing wellness.
  • It’s been 20 years since the 1st tentative diagnosis of CFS, and 13 years since the confirmed diagnosis of CFS/FMS. That’s a long time to spend working hard on positive thinking.
  • I have visualized the future I want, made friends with my body, loved it in all its parts,
  • Prayed and “given it over to the Divine,”
  • Opened my heart and soul to healing energy, and let the Divine flow through me, and
  • Tried just about every supplement, herb and medication known to humankind.
  • And yet.

    I have continued to go downhill, so obviously it’s just not that easy.

    The nurse got very quiet.

    It’s not for a lack of “faith” or “belief.”

    I’ve had several experiences with animals (a wolf cub and a beloved horse) that were terribly ill, and should have died. I opened myself to the Divine, and felt it move through me, into them.

    They made recoveries that simply could not be explained. My horse, Cherokee, was even written up in a vet journal, so stunning was her recovery.

    I have seen true miracles, and I know they can and do happen.

    So while I continue to hope and pray for one, I know that miracles are few and far between, and I have to face reality.

    Reality is, my body is in a precarious place, and I need to treat it as such, with extra tender loving care and caution.

    One of the most important things a ME/CFS patient can do is to realize the reality of their limitations – exactly how much energy they can expend, which may be next to none.

    This is called staying within our “energy envelope.”

    In the beginning, almost all of us push ourselves to do more than we should. We try to keep up our former lives, not realizing that things have changed.

    Work is usually essential, so we work (often with the assistance of stimulants), then crash – we sleep, and feel like we’ve been run over by a semi, who then paused, and backed up over us for good measure.

    On the outside, we may look “fine.”
    But I assure you, we feel anything but “fine.”

    We are forced to pare things down.
    We start to miss social events and family gatherings.

    Because our energy level, and the intensity of our headaches and other symptoms, varies day to day, and even moment to moment, we become unpredictable guests.

    Soon, we stop being invited, or expected to show up.
    This is the beginning of the isolation many of us will face.

    Eventually, most will wind up housebound, and often, bedridden.

    The life expectancy of a person with ME/CFS is 57 years.

    Many ME/CFS patients wind up alone, with little or no in-person support, having been abandoned by family & friends, who either cannot or do not want to understand the reality of this illness.

    Perhaps they think we should “try harder.”

    I don’t know how we could possibly try any harder.

    Virtually all the ME/CFS patients I have “met” – dozens of them, online – have tried everything, and I do mean everything, in a desperate attempt to get better:

  • Many medications, including very risky ones, if they show any hint of promise.
  • Every alternative or complimentary therapy or supplement that’s within financial reach.
  • Every “positive thinking” and “magical thinking” and prayer and meditation technique.
  • Some have taken out 2nd or 3rd mortgages on their houses, and many, like me, have asked relatives to help cover the costs of meds, experimental treatments, supplements, and medical care.

    Sometimes, things help a little.
    Sometimes, they make things worse, even much worse.

    We virtually all stay on top of every tidbit of medically-related news, every droplet out of the research world that shows promise.

    We desperately want to be well again, or, at the least, to stop the downward slide.

    We all want to stay positive, especially those of us – and there are many – who are the mothers of children with ME/CFS.

    There is precious little research.
    Precious little money being thrown at this illness.

    There are no “silver bullets” in sight.

    Even if one were to come soon, those who have been sick for decades, and have so many systems involved, so much damage done, would be very unlikely to recover fully.

    That is reality.

    But.

    Accepting the reality of our illness is essential to managing it, and to finding inner peace.

    In November, I wrote this about finally finding acceptance:

    “Acceptance doesn’t mean giving up. It doesn’t mean you stop looking for ways to return to health.

    It means you stop fighting, stop struggling, and get on with the business of living your life, even if you have limitations you didn’t expect or want.”

    It’s rather like a person who’s fallen into rapids: you can fight & struggle & probably drown, or you can give in to the flow of the river & let it carry you where it will.

    Accepting what is, even ME/CFS, helps us to have richer, fuller, lives.

    Because I came to acceptance, I relish every moment of life:

    The explosion of sweetness from every ripe, red, juicy raspberry I pop in my mouth, a gift from the Woods.

    The incredible way the sky changes color every sunset from second to second, showing me gradient hues in lavendar, indigo, crimson, fiery orange…

    The fawn we saw nursing its mama just off our deck, and the twin fawns running full tilt through the Woods this week.

    I’m especially treasuring every smile I see on Rhiannon’s face, and the long talks we’ve had of late, on far reaching topics.

    Everything is more precious, and fills me with more joy, now that I am no longer engaged in a war. This is just what it is, and I’m making the best of it.

    A Gentle Kiss

    The Dream

    I’d really like to live long enough to see my grandchildren, and that is a longer-term goal.

    In fact, I’d like to live to be as old & wrinkled as an apple that’s been stored for a year.

    I’d like to be the crazy old lady who lives in the Woods. She can be seen out taking long walks, her dog at her side, ash-wood staff in hand. Her hair is long and white. Barefoot in all but the coldest weather, her clothes a wild mishmash, with beaded necklaces and bracelets, she looks every bit the crone, the wise woman.

    She has a way with animals, and knows every plant, every wild herb and its use. She speaks quietly to the trees as she walks, and places a gentle, wrinkled, hand on them as she passes, especially her favorites: the great Mother Oak who guards her cabin, and the Ash trees who share her name.

    She is the dream, or maybe, the ultimate goal, loved, nurtured, and carried inside.

    What about you? Do you have any goals or dreams you’d like to share? Comments are very welcome, below the pictures!

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