This is where I am tonight; this is what is in my heart & mind:
Self:
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.
Self-Destruction:
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.
Self:
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.
Self-Destruction:
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.
Self:
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.
Self-Destruction:
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.
Self:
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.
Self-Destruction:
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.
Self:
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?
How?
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…
Ash
Wolfdreams.... 
I know what I am saying sounds trite, but you know that I am in a slightly similar position as you are; built myself up from nothing to finally have worth, only to have it snatched away-so I am not answering you flippantly. I have never once “talked” to you without getting a strong sense of strength and identity from you; I think that sometimes “you” get buried beneath exhaustion and pain, but you are there. You also have your spiritual gifts that you can utilise- You don’t seem to realize it, but you have already found your path-your writing; your life story, and most of all, your experiences with CFS and Lyme. Your experience-from being strong and healthy, to the odd few bad days, to the crushing diagnosis, and your fight with the disability issue, all could help so many people-whether you choose to write and tell your story, or pursue some kind of consulting-you would be such a great resource for people, but especially women-those struggling as you have. With everything from voice recognition software to Skype, your writing issues and being present issues could be remedied. Also, meanwhile, what are your chances of re-opening your shop online?
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We are indeed in a very similiar position. I think you hit the nail on the head when you said that sometimes “I” get buried underneath all the pain & fatigue. I was hurting very badly when I wrote that, and have a bit of pms adding to the mix.
I think the Valcyte has started to help me cognitively, and I want to do so many things, but the fatigue is still pretty unrelenting.
Having my shoulder disintegrate in ways as yet unknown (too inflamed to even think about doing an mri) has been rather like a fighter struggling to get up who then gets kicked in the teeth. That’s how it feels, anyway. Being single handed (literally) puts great limitations on what I can do – we don’t even realize how many actions takes two hands until we lose the use of one.
I’m very frustrated. I want to do so much and yet find so much is out of reach, even things like changing my sheets or sorting through piles of clothes – everything takes two hands.
I feel like I’m being whiney and self-pitying, but it’s not just that I really did not need the extra pain, it’s also about losing trust in my body. That something I’ve done a thousand times has injured me so severely.
And you are likely right about my path from here on in, that perhaps writing is what I need to be doing. I certainly have had an interesting life story (now if I could just remember it…). I remember many years ago my mother telling me she’d been keeping track, and every six months, regular as clockwork, some new & always unusual crisis would erupt in my life.
Thank you for your support & encouragement, Dawn. I deeply appreciate it. I will try to develop a better attitude, be grateful for what I still have, & get myself out of this “mood” I’m in. 🙂
Peace, and OOL&SH!
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Dear Ash,
I have felt hesitant to respond since any physical or emotional crises in my life cannot be compared to what you have been going through for the past decade or more. But your question has been making me think more about self again the past few days, and of self-worth. This may sound too much like a pep talk from someone who has no clue, but it truly does reflect the way I see you and how much you have to offer to others.
As I’ve told you recently, when we were growing up, I felt an unconditional love from you that made it somehow easier to grow up in a less loving household. I have always enjoyed the way you paint pictures with your writing and have admired your brains and determination. All of those gifts are still there to share with others. Even with the toll your illnesses have taken on your brain, you probably still have more intellect, common sense, and compassion than several “ordinary” people combined. I feel from reading your blogs and FB that you have made, and could make, a lot of difference in people’s lives. Your diligent research on new ways of using drugs to lessen your symptoms has already educated some doctors and given people new hope.
When I thought, several years ago, that I might have a life altering chronic illness, so much of what I read online was so depressing, demoralizing, and left me with a feeling of powerlessness. The people who really made a difference in my attitude and sense of hope where those who were going through similar trials, but who thought outside the box and had compassion for what I was going through. Even though Oriental medicine turned out to be what I needed to heal, I still feel a lot of gratitude towards the mentors I met on listserves because, at that time, I was full of fear about the possibility of living the rest of my life in horrible pain and the possibility that my life and relationships would be drastically altered.
I could easily see you as a mentor to people trying to get their minds around what is happening to them on so many fronts. Despite all that you have gone through, and go through, you are still an amazing mother and a wonderful friend. You still do research, and you still try to educate all of us about what you and so many others are going through. It also sounds like your blog is beginning to bring a sense of comfort and camaraderie to others. For as long as you choose to be with us, you have so much to offer through your writing, your determination, and your heart.
Asperger’s may make things more challenging, but when you have the energy, you could just chat on various websites and listserves related to the many health issues you have experience with; you could work to educate doctors, become a mentor to those newly trying to cope with illness, the medical maze, and life changes, or go even further and become a health coach. And you of course wouldn’t have to limit yourself to health issues. Your interests extend far and wide (wolves, sheep, horses, back to the land, starting your own business, motherhood against all odds, spirituality, etc.) I also know I have told you before that I would love to read your autobiography. I think it would be amazingly inspiring for people stuck in the drudgeries of day to day life, who have dreamed of having the adventures you have had. It would also inspire those going through challenging times looking for inspiration. You have had all the dramas, twists, and turns required of any good novel (your “self-destruction”) , but the parts that would open the hearts and minds of people would be all of the amazing adventures, challenges, determination, and love that you’ve just begun to hint at in your “Self” sections of the blog. It seems that there are still so many things you could do for others, which don’t require your body, yet could give you a strong, ongoing sense of self-worth on a daily basis.
But there is also the part of you that is “here”, yet transcends this time and space. Who or what is Ash? If you, for a moment, imagine having had no past – no learned preferences, no traumas, no favorite colors – what is that like? Then imagine having no hopes or fears for the future either, and sit with that for a few moments. Then relax into the possibility of also having no solid perceptions in the present. Who or what is left when past, future, and perceptions are gone? Rest in that essence moment by moment. That is one of the meditations I do to try to drop the grasping on to a small sense of self and just rest in the sacred – the essence of what, if anything, remains.
I have also found that doing compassion meditations like Loving-kindness (Metta) meditation and Tonglen (for myself and all beings) on a regular basis really helps me reframe how I experience the world, especially if I am feeling depressed or hopeless. On the one hand that may seem easy for me to say since my situation can seem hunky dory compared to what you face each instant, but I have read and heard many accounts of how people with chronic illness or people experiencing imprisonment and torture have be able to keep a loving heart and see beauty in the world through doing these practices. I know it can be lonely and isolating being away from a nourishing spiritual community, and I know for me that an ongoing sense of feeling connected to the sacred is so important for finding meaning in day to day life. Compassion meditation practices have been so helpful to me, especially when I am feeling despondent, because they reopen my heart to the sacred and remind me that I am interconnected with all beings.
Being so uprooted the past few years has left me with only long-distance spiritual communities, but it has been helpful, and at times inspiring, to at least be able to connect online with people who share similar spiritual paths, so it made me wonder if there were ways you could also connect with like-minded, spiritual folk regularly enough to help you feel connected to your sacred self in more ways than one.
I guess when I read your questions, first they made me think about Buddhism, which says various things about the self, but in general, there is the belief that a separate, truly independent self does not exist – everything is interdependent and ever-changing. But there is also a belief, in a lot of Buddhism, that there is a ground, an essence, that we are never separate from no matter what happens or what we do, and that the purpose of this life is to let go of little self in order to “return” to our “True Nature”. Then the ordinary self just becomes a vehicle through which to live, learn, and be of service in this world. But esoteric beliefs aren’t very helpful in times of crisis. It is one thing to have spiritual aspirations, but what is there in daily life to make life worth living and to keep a sense of the sacred when times are hard? I think your question of self-worth hits the nail on the head. What is self? I think self is a composite of concepts, thoughts, and perceptions that we pile on to a “straw” frame to try to make ourselves feel real and solid, but we are not; we are constantly changing, not just life time to life time, but moment to moment as each feeling or emotion rises and passes away. There is no permanent, unchanging self, but that does not mean at all that this life is not worthwhile. I think your question of self-worth is very important. I think at the core, most people find that their lives feel more sacred and more worth living when they feel the sense of worth that comes from being of service to others, of offering compassion, and of trying to make others’ lives a little easier or more joyful.
I was hesitant to write anything at all, and now I find that I have gone on and on. But the main thing I was trying to say, based on my own experience, is that doing things that help others opens my heart to feeling compassion for others and for myself, and it brings a sense of self-worth, a reason for living, a way to make meaning of my life. And then, there is the letting go of the small self and finding ways to open to the sacred self, which also brings a sense of meaning. Both of these things become much more challenging when you are laid low with horrible pain and crushing fatigue, but you, Ash, ARE the Sacred and you ARE full of compassion. I’d imagine that even with little snatches of energy every few days, you could make a difference in the lives of so many, which might then allow the answers to your questions of self and self-worth arise effortlessly.
I am sending you much love and many hugs!
Namaste, Daphna
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Dearest Daphna, your wise, kind & loving words have touched me so deeply. You have brought me to tears, but they are needed tears, the kind I fight, have fought, for so long, in my quest to always be “strong.” But also tears of joy, though joy is not quite the right word. Relief, maybe, that is the word. All I know is you have shared so much with me that it will take me some time to compose a proper answer, to sit with the emotions you have unintentionally provoked to surface. For now, I’m going to go sit with them on the porch, and let the long dammed up tears flow, while holding you in my heart with great love and thanks. Namaste… the Divine within me sees and embraces the Divine within you.
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Hi Ash,
I couldn’t sleep because of severe depression and once again, got up thinking I might could write but then I get sleepy when I get up. Toss and turn and cry when I lie down. I’m hungry but don’t want to eat, but it isn’t me I meant to talk about.
I wanted to say that this post, well, I was drawn to click on your avatar (gravatar?) and then read this. Amazing writing here that you have offered as a gift! Thank you!
I’m very very sorry you have so much pain. I really am.
I cut my two fingers last year and for six months couldn’t use that hand. It still hurts but I use it. It was awful.
I can’t respond like in the other comments, but I sure wanted to say that I am sorry for you, can relate to so much of what you say and have done in your life.
I know from experience that Chinese Medicine does really help, with just about anything if you could do it. I haven’t been doing it because of money and fatigue. But if you could find a good one who has gone to school for four years and studied the herbs they use, then you might find a true healer.
That is exactly what I need to do, find one who would work with me financially who is also a true healer.
I wish I could say more, but I just can’t. I do thank you for sharing so honestly about your life, your feelings and the pain you endure.
Bless you. Many many blessings to you and your family.
In peace and friendship, with well wishes,
dogkisses.
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