Posts Tagged ‘The Before Times’

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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“Art enables us to find ourselves and lose ourselves at the same time.”
― Thomas Merton, “No Man Is an Island”

Recently, I’ve come to realize (again) just how much being chronically ill has stolen from me, and not just in the obvious physical sense.

Little bits & pieces of me, of who I am, have been slowly slipping away into the morass of living with ME/CFS/Lyme, etc., buried under the avalanche of chronic illness, a little bit (or occasionally a lot) at a time, as I slowly spiral downward.

And then I found myself again, all the little missing bits, in the most unlikely of places.

The loss of physical function, of ability, is the easy part to see.

I can no longer ride horses, garden beyond a few pots on the deck & my beloved bonsai, or even make a trip to the grocery store without seriously overtaxing my body. Those long hikes in the Woods are long gone.

Less obvious to those on the outside looking in are the loss of the ability to watch TV or movies because of sound & light sensitivity & the damned migraines. I had have my favorite sci-fi & fantasy shows & movies, and I miss them, though they wait patiently for me on the DVR.

Perhaps most of all, I miss the ability to inhale a good novel, to luxuriate in a fantasy world of warrior women, magic, and quests to be fulfilled, or to travel backward into history & relive the ancient past. I used to read upwards of 150 pages a night of a good book, but I lost the ability to retain what I read, and so keep track of plotlines and characters, about 10 years ago.

But the Amazon warrior woman within, the myths & magic I love so much, reside within me still, I have found.

Rather than be pushed away into the fog and forgotten, they beg to be brought out into the open, acknowledged, and, even, nourished.

They are part of who I am.

Exploring more, I re-discovered the thrill of seeing a beautiful vista from a far-away land, a gorgeous garden, an amazing animal, an unusual and well done piece of art, and so much more.

And so I have found myself again, I have awoken from my soul’s slumber, thanks to that unlikely source I mentioned: Pinterest.

For those who don’t know, Pinterest is a highly addictive online “pinboard” site, where you can create pinboards – collections – of images of things you like, and keep them neatly arranged in as many boards as you like. You can “follow” people who share your interests, and browse their boards, and repin what you like to your own boards. Most of the pins lead to websites, often of interest, too.

To be honest, I joined Pinterest because I saw friends joining, and didn’t really expect much to use it.

But then I discovered the world of imagery that resides on the web, the treasure hunt that is Pinterest, finding people who like the same things I do, and began luxuriating in the glorious artwork & photography the way I used to do with my reading, tv and movie watching, and travel.

During a bad migraine day, of which there are many, I barely feel like moving, and thinking is terribly difficult. About the only thing I can do at such times is to immerse myself in the fantastic art & images of the divine, creative DIY ideas, magical homes, forests & sacred spaces, found on Pinterest, all while barely budging from my pillow, on my smartphone.

As I collect and categorize, I am both losing myself from the pain of the migraine & drudgery of another day of “chronic-ness”, and also finding myself, the parts so long buried & lost, hidden away. But still there.

Buried, but still alive & well inside my heart & soul.

It’s been six months of pinning now, and I’ve found it to be an interesting & invigorating process, both spiritually & emotionally.

Hidden anger & grief has risen to the surface to be dealt with, as I see things that remind me of The Before Times, of things I used to do, places I wanted to see, but now can’t.

I thought I was over that aspect of this illness we call ME/CFS, over the loss of so much that was a part of my identity.

But seeing some of these images, these visions of the Past and hopes for the Future, served as a reminder to me that grief is a process, a spiral, not a circle – we don’t go through the steps of the circle and be over it.

Instead, we go ’round and ’round the spiral of grief and anger, mourning the loss of Life-As-We-Knew-It, and with each turning of the spiral, the grief in our hearts heals a little more, slowly, ever so slowly, fading away…

As I’ve wandered the spiral of grieving for my life, I’ve found Pinterest to be invaluable in renewing my hope and fueling inspiration.

Creativity has budded, and begun to flower.

Images and how-to’s fill my Creativity board of things I know I can make and do, albeit very slowly. I can revisit and refine what inspires me, as new pins are found and pinned, and not-quite-right pins are removed. They remind me that:

I can still create. I can still make beautiful things.

Another board reminds me of my deep connection to Nature, and is populated with images of wild women and wild places, prompting the sleeping wildling within to awaken.

With every visit, the fires of inspiration burn brighter.

Once upon a time, I had my very own, very large, herb garden, with just about every herb, medicinal and culinary, you could have. But for now, we have the Woods, some pots on the deck, and dried herbs that can be purchased.

Pinterest has re-kindled my interest in using natural ways for healing. The internet is full of tons of information on using herbs & foods for healing, and my board is a great way to organize all that info – and encourage me to try it!

When things are very bad, physically, I can drop myself into the sacred imagery, fantasy art, especially lovely places, or beautiful wildwoods that populate my boards, and hide myself from the pain & distress. I can distract myself from the boredom of living a life filled with chronic pain & exhaustion by going treasure hunting – for new & wonderful things to pin.

It is a refuge, a respite, and a renewal, that I never expected, but am very thankful for.

To see my entire collection, please visit me on Pinterest ~ and if you’d like an invitation to join, just let me know (it’s free).

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Standing naked, I gaze into the mirror. So many changes have happened to my body, I barely recognize the person who stares out at me. Time and illness have taken their toll.

I will be 48 years old this month. Late forties. Almost fifty. My mind struggles to wrap itself around the concept.

There is a thing that happens when you have the chronic illnesses I have:  Chronic Fatigue Syndrome, Fibromyalgia, chronic Lyme, Neuro-Immune Disease. It’s hard to explain. But you lose your sense of the passage of time; the years pass without it really registering. I think it’s from the short-term memory loss. When you can’t remember whole days, weeks, or months, and the years go by, it all blurs together into a fog of vague memories of pain, exhaustion,  struggle, the constant fight to keep going.

But no real sense of the passage of time. No real comprehension that you have been sick for more than a decade.

My body has been through many changes in those years, and it shows.

When I first got sick, “officially sick,” with CFS/FMS in 1999, the headaches were really bad. I was a big breasted woman, and wore a “G” cup bra. The doctors at the pain clinic suggested I have a breast reduction; they thought the weight of my breasts and the pressing of my bra straps into my shoulders was irritating the nerves, and contributing to the headaches.

When I saw the surgeon, I weighed 150#, and had been at that weight for a while. She asked me if I planned to go on a diet, and I wanted to, but thought it unlikely to be successful, so told her “No.”

I had gone through two pregnancies, and have never had elastic skin; as a short-waisted woman, my belly had been drastically stretched. It never really recovered, and I hated the droopy, loose skin. She suggested we do a “tummy tuck” at the same time, and I  surprised myself by agreeing.

I liked my new tight belly & smaller breasts, but hated the scars.

About a year later, I developed hypothyroidism. In four months time, despite eating very little, I gained nearly fifty pounds, and ballooned up to nearly 200#.

Once my hypothyroidism was under control, I slowly began to lose weight. Years passed as I fluctuated between 150# and 170#, depending on the constantly changing level of hypothyroidism.

A year ago, I weighed 160#, and had been pretty stable at that weight for a while.

Then, the migraines – and the nausea they bring – got much worse. Along with that, my CFS was also getting steadily worse, and I became even less active, spending most of my time in bed. I gave up dairy products, including the cheese I’ve loved since I was a child, and wheat – the crusty breads I loved to slather with butter, pizza, lasagna, macaroni and cheese – to try to settle my irritable gut down, and in the hope of reducing the migraines by not eating foods that might trigger them.

My weight began to drop, slowly but steadily.

This week I weighed 122# at the doctor’s office. I have not been this weight since I was 17.

Gazing at my reflection in the mirror, I remember the healthy, strong, young woman I was in the Before-Times: before I became sick.

That woman is gone.

The woman I see in the mirror has alarmingly bony shoulders and arms, muscles wasted away by years of inactivity forced onto her by chronic illness, by an exhaustion beyond words. The skin, stretched by rapid weight gain, now hangs loosely in too many places. The breasts have fallen again.

My eyes follow the familiar lines of tattoos, the story of my spiritual life indelibly marked on my skin, but even those are almost unfamiliar without muscles filling out the flesh. The canvas has changed it’s shape, and the harsh outlines of bones show through.

The once waist-length, almost-black, hair is now heavily streaked with silver, left undyed because of the concern for a reaction to the toxins in hair dye. The bangs are more silver than dark, and silver tufts sprout from both temples. Cut to just below shoulder length a few months ago, during a period of almost-mania caused by the start of Valcyte, the familiar gentle waves have turned more to curls.

The face I see reflected in the mirror has a deep furrow etched between the eyebrows, from years of headache & migraine pain. The dark eyes are shadowed by puffy eyelids. There is a pallor to her face that was not there in the Before-Times.

She does not smile back at me with her pale lips.

I study the woman in the mirror, and see the signs of years of illness reflected in her body. Though I see her everyday, still she is a stranger to me.

The years have passed in a blur, a fog, unremembered, lost. Never to be regained.

Just as the healthy young woman I remember from the mirror, from the Before-Times, is lost, and never to be regained.

I mourn for her, sometimes, when I catch sight of the stranger in the mirror. A great stillness, a great silence, will rise in my soul.  I ran out of tears long ago.

Were I a wolf, I would howl out my sorrow to the Moon.

Instead, I remind myself to try to eat more protein, to help stop the muscle wasting, and to accept and love the silver hairs, for I have earned every one.

I return to my bed.

There is nothing else I can do.

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This is where I am tonight; this is what is in my heart & mind:


When I was 19, my new husband & I moved to 33 acres of gorgeous land in the foothills of the Blue Ridge. I loved the mountains so much, and wanted to learn about “homesteading.”

We got a goat for milk, and I learned how to take care of her, help her have her kids, milked her, and learned to make yogurt & cottage cheese. I baked all our bread.

We bought a 3 day old calf and bottle raised it, then pastured it until it was ready to take to the butcher, to become the best beef I’d ever eaten.

I learned all about raised bed gardening, and produced bumper crops of tomatoes, green beans, squashes, peas, lettuce… pretty much everything. I learned to can the excess, and stocked the cabinet with quart mason jars full of organically grown goodness. I used our plum & pear trees to make delicious jams & pear butter (like apple butter, only better).

I bought horses, because I loved them, had loved them from childhood. I would ride for hours, learned how to barrel race, and entered bareback elimination classes at shows.

I had a child, and continued to do my many outdoors pursuits, often with my daughter riding on my back in a backpack.

Then I developed a love affair with sheep, and tracked down different heritage breeds: sheep for wool for spinning: white sheep & black sheep & spotted sheep & one golden brown sheep (who butted my hand on arrival and cracked a finger from joint to joint). I learned through much trial and error how to shear a sheep, card the wool, spin it & weave or knit it into beautiful creations.

I got divorced, and my 3 year old daughter and I and the sheep, goats, and horses, all moved to the middle of nowhere, West Virginia. 22 acres, a house, a barn.

It was tough, living by myself. I learned how to haul 50# bags of horse, goat, & sheep feed, slung over my shoulder. And the hay… hay bales can weigh 40-50#, and you get a truckload at a time. Hauling them to the barn was a challenge, but I did it.

I dug the post holes for the fence, learned how to run fence myself.

I spent many, many cold nights in the barn, watching a pregnant ewe, waiting for lambs to be born. They need a lot of help if they are born when it’s cold – teaching them to stand, to nurse, drying them off, coaxing a first time mother sheep into letting her lambs nurse. Sheep are often clueless.

I learned about herbs, not just for cooking, but healing herbs, and grew a huge herb garden as well as veggies.

I discovered I was not alone in my spiritual beliefs, and attending festivals, sometimes with hundreds of others, became an integral part of every summer.

I fell in love again, and learned from my ski photographer husband how not just to ski, but to ski well. I’d never been good at sports, but skiing, it clicked with me, and I was good.


I blew my knee out skiing, healed, skiied the next year until on one spring skiing day, showing off, I really, really blew my knee out.


Money, or lack there-of, became a problem. I had to sell the farm, and we moved to a temporary location with just the favorites: a couple horses, my most treasured sheep, the dog & our first wolf-dog.

I fell in love with wolf-dogs, and bred ours to a nearly pure wolf. She had an exceptional number of cubs, but we found homes for most of them, and took in our first rescue, a nearly pure wolf of 4 months old.

We had to move, and after a long & difficult search, found 22 acres in south east Ohio, in the foothills of the Alleghenies. A shabbily built log cabin, no running water, soon accompanied by extensive wolf-fencing, and even a sun deck for the wolves, and a shelter for the horses. The sheep I was forced to sell, but I was content with the wolf pack & the horses.

After my second divorce, I found myself responsible for my half of the wolf pack, and my beloved horses. More wolf-dogs came in as rescues, as I learned that it takes a very special person to provide a lifetime of care to a wolf-dog.

The wolves became my center, my heart & soul. With them, I was at peace.

It was tough. Often, I had to carry 40# bags of wolf-chow & 50# bags of horse chow, one by one, across a log that served as the bridge over our creek, and up a crazy steep hill to the house. Occasionally, I could get in through a neighbor’s land.

Wood was the only source of heat, and I learned the fine art of chainsaw use, and split the wood with the maul. In the winter, it was so cold, we hung a blanket over the entrance to the kitchen, and the dishpan would have ice in it in the morning.

Water for drinking had to be hauled in as well. Rain barrels provided water for washing.

I went to college to learn to work in the park service, as a ranger, or a naturalist. I learned to identify every tree in the forest by twig, leaf or bark sample; learned how to design & build trails; how to teach environmental education to children, and much more.


It was about this time I started having the good days/bad days of CFS, and was diagnosed with it.

I had a headache for six months.

I tore up my knee again roofing a house, and had surgery, the first of four.


I entered a disastrous marriage, we bought 209 acres, and I again tracked down the heritage breeds of sheep, cattle, and horses. We hatched out hundreds of ducks, chicks, & a few ill tempered geese.

I sheared sheep, collected eggs, pulled lambs, plucked endless chickens…

At 31, I had my second child, and shortly thereafter, escaped the marriage. I was forced to move into town, and put some of my wolf-dogs into other rescues. I planted a veggie garden, and a huge herb garden.

I started herb plants indoors, and sold then & herbal concoctions at the farmer’s market.

My last wolf-dog was sent into rescue for his own safety. It tore my heart out.

Needing to support my girls, I jumped onto the internet in 1997, taught myself how to do everything, and built a thriving business.

I took a trip to England & Wales, propelled by the sudden, urgent need to go, and camped all around the Isle with a British friend.


Four months later, I was struck down, hard, by CFS/FMS, in 1999, forcing me to move back to my mother’s house, and began the odyssey of trip after trip to doctor after doctor.


Still, I struggled through it to keep my business going, and it did well beyond my expectations.

In 2001, we moved to The Mountain.

It was the first time in my entire life that we were financially comfortable.


In 2006, I tested positive for Lyme disease, and started a controversial treatment of IV antibiotics for a year.

I failed the treatment, and became bedridden. I very nearly died.

My business folded as I lay in bed; it was unceremoniously closed.

I have been essentially bedridden or housebound ever since.

Now, today, I type this one handed. My shoulder has pretty much disintegrated, possibly as a side effect of some of the dozens of medications I’ve taken in my attempt to get my life back. My knee is trash, and needs to be replaced. My back is raging with pain & inflamation. The exhaustion beyond words continues.The headaches & migraines continue to rule my life.


How do I get my sense of self, and of self-worth, back, when so much of my self has been expressed through actions and activities, which are now out of reach as my body continues down it’s path of self-destruction?


Please post your thoughts, ideas, and suggestions below rather than sending them to me privately.

This way, there will be a record I can keep for always.

Thanks, guys…


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