Stretched

I think the biggest problem for me with multiple disciplines (visual art, writing, ballet) is switching gears from one to another. After wrapping up the ballet season and feeling a sense of relief that I don’t have to plan classes or choreograph dances, I feel exuberantly unburdened. I feel like I have all the time in the world, and of course there are so many things to catch up on, now that I have all this “free time.” At the same time, I have a tiny sticky note wafting around, reminding me of writing deadlines, and some decent-sized sketchbooks looming in darkened corners. Those sketchbooks are definitely up to something. There is a predatory quality to their lurking that makes me wary.
And there are so, so many word documents and files of word documents on my laptop, just begging to be released into the world…And these disciplines–I used to call then passions–of mine perch precariously on the summit of a veritable mountain of tasks and responsibilities I carry as a mother, a wife, and a person who needs a certain amount of self-care.

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A quick “action sketch” from college art–a few too many muscle groups, I think

For years I’ve given myself motivational lectures about “narrowing my focus” to be more efficient. In a way, I feel my life has done it for me. The chronically ill can accomplish only so many tasks in a day, however much they may enjoy those pursuits. But the longing is still there.
I’ve never quite believed the Superwoman myth: that I could Do it All. “What is all this ‘it’ I might want to do?” I wondered… I do, however, have a tendency to embrace too much, to stretch myself too much trying to include just one more…And as my illness has taught me, when you stretch that much, sometimes things just don’t work efficiently. Sometimes there’s something to be said for being static. Grounded. Stable. And yet I am who I am.

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Frailty

Shaken, I see myself more clearly.
Knowing my imperfections: humbled, and encouraged to practice patience.
Seeing another’s pain: moved to compassion and greater love.
Finding myself weak: finding the will to  fight for strength.
Finding myself broken: seeking to mend.
Seeing my flaws, I see my humanity, and that of others.
Ignorant, I seek the Light.

Flawed, I seek Heaven.

We never know what life is going to hit us with next–or hit someone we care about. A family member recently sustained severe injuries as the result of a freak accident, and the news jolted me so much that I lost myself for a time. Compelled to mend old bridges, I got back in touch, trying to shift my focus to them instead of me. The insights were humbling, especially hearing with what hopefulness and cheerfulness this near-tragedy was being managed. Taken in stride, almost. The way an event such as this can stir a deep, old bond is amazing.The way an event such as this can stir a deep, old bond is a reminder of how connected we are. I found that truly heartening and inspiring.  

My Life as a Rough Sketch

IMG_20170313_204024.jpgI have so many rough sketches I never finished–many I never intended to. My my life–that I always intended to do more with. I was thinking about this as I quickly sketched a rough self-portrait. My skills an an artist aren’t what they once were. But then, I reflected, much about me isn’t what it used to be.

The sketch, lacking in detail, nevertheless shows more than I would have thought. The not-quite-at-ease posture, the slightly lifted arms (as if to carefully hold the mug and keep it from spilling) are very accurate. I move differently than I once did, with more care and less ease. The hands are awkward, and grip too tightly, as mine do, to maintain their grip. I couldn’t quite get the foot right:my dancer’s feet that just won’t do what they’re supposed to anymore. They have the muscle memory, they try, but they are going the way many of my other joints have…

Yet here I am. Seated, contemplative, even if just for a moment. Looking into the distance as do most of the female figures I [used to] draw and paint.

But rough around the edges, just like my life: So many things I haven’t finished, and priorities have had to change. So much isn’t what I would have envisioned. So much is still vague.

Yet here I am.

Reflections on Sadness

Before dawn I was woken by a very sad little girl.
Lately I’ve noticed a strange melancholy in both my children that I remember in myself around the same age. I’m not sure if children pick up on sadness from living in a house with chronic illness, or from the depression of the parents (more likely), but it deepens my own sadness that this seems to be a legacy I have passed on. My daughter in particular asks questions such as, “are you and Papa going to die the way your mom and dad did?”
My husband says, “no, of course not. We will always be with you.”
I, unwilling to trust the backhandedness of life, say, “I hope not,” but try to reassure her she will always be taken care of.
And, I think grimly, no wonder she’s sad. I wonder if I should be so forthright and realistic with her, precocious as she is at age five. I wonder which is kinder: the promise we can’t keep, or the certain reality that one day we will die, though metaphysically, of course we will always be with her. We made her precious tiny human self, and so are ever and always connected: inexorably part of each other. Can she be secure in our intangible love when she craves the security of our physical presence?
This morning she huddled next to me in bed, crying that she would miss her brother when he grows up. Her mean older brother, who teases her, picks on her, calls her names, and is subversively jealous of her, in spite of our best efforts to teach and encourage him otherwise. She will miss him, and dreads being parted from him.
Such is the nature of sweet spirits.
I know so many young women who carry a heavy burden of sadness. And so many of them, too, are sweet spirits, undeserving of so much sorrow.
After being disappointed with my efforts to comfort my daughter, I carried a trace of sorrowful miasma with me through the rest of the day. Going on social media deepened it until I could wear it like a coat.
Finally, my ponderings outweighed my personal reserve, and I wrote a post about it. Almost immediately, there was a reaction, with surprised and almost irritated me. Then I realized it was one of the young women I know, one who has more than her own share of sorrow to carry. She was sharing in ours. I was deeply touched by the simple expression of an emoji reaction–though as a rule, I am dismissive, almost scornful of trying to relate through emoji expressions. This was different.
It brought my thoughts back to my recent blog on kindness. It made me think how valuable those small gestures are, especially when we are suffering with our own burdens, fighting our own demons of depression, poverty, frustration…how much we can give each other.
My daughter and I got through our day, and it would have been hard to tell she began it in tears. Both children played–reasonably nicely–together, and went to bed peacefully and happily–after I read them three or four bedtime stories, and completed our evening ritual of evening prayers, kisses, hugs, tucking in, and one last “good night” prayer.
And as the small gesture I received meant so much to me, I try to bring a little more mindfulness to my parenting, of all those little things that mean so much to children. Especially since I won’t be here forever.

It used to worry when when my children expressed sadness, but as I considered it more, I realized several things:

My husband and I both come from melancholy families. It seems a certain amount of pensive melancholia is inescapable.

But more significant is the role of sadness in the human experience. too little acknowledgement of sadness in our lives could be denial. too much, a sign of depression.

But in general, sorrow is merely part of the human experience, rolling over us in waves or cycles much like any other human emotion, coming to go again, to come again, and so on.

I think what is more telling about us is how we use that experience to relate to others. Knowing sadness ourselves, do we hunker down around it, feeling sorry for ourselves, or do we use that point of reference to reach out to others, extending empathy to them in any small way we can?

Thank you, my friend.

 

Reflections on Kindness….and Coffee

She limped into the coffeeshop, the heavy fracture boot throwing her walk askew.
“What happened to you?” the young man behind the counter asked, with a tone of genuine concern.
She was taken aback. Why would he care? He was young, good-looking, and could easily afford to be self-absorbed if he chose. She was–a wreck. Young, too, but she didn’t feel it any more. Her scars ran deep.
“Well,” he seemed oddly at a loss for words, “I’m–glad you’re alive!”ravens-prayer2
She was startled, but there was a place deep in the pit of her stomach that flip-flopped even as she felt an embarrassed gratitude. He wasn’t flirting, and she wasn’t trying to make something out of it. It was compassion, and she was grateful for it.
How many times have I said “hello” to someone, especially someone older than myself, and found them brighten in response. As I near 40, it occurs to me with some chagrin that I am now on the receiving end of those young day-brighteners.
And have you ever met with a friend for coffee, and while talking learned of her deep struggles, her life-changing decisions?
I often think that sometimes the best thing we can do is be kind (though let’s exclude one-liner quotes we might find on teabags). For all our web connectedness, we are missing out on personal human interaction. Even offline, we are all so busy we don’t have time to put away our phones and sit down with people–just to talk. Just to say Hi. Just to have a cup of coffee.
Reflecting on the value of kindness. I keep meeting people who just need to hear a kind word, have someone take an interest and care. I think about all the times someone did that for me, especially when I was struggling with depression. Sometimes it means the world.

The girl in the coffeeshop never forgot the barista’s kind words, even after her leg was long healed. There are enough Unkindness-es in life. Words (or lack therof) and actions can keep the world harsh and cold, or shine a light in a dark time. All it takes it one minute of genuine kindness.

Hmm, I should pitch that to Yogi Teas….

Spring [Personal] Discipline

The winter is so far from wearing to its end. I look out the window and see three feet of snow, but the sun is out and there is a freshness on the air when I venture to crack a window or open the door to call my children in, their noses and cheeks sufficiently red and snow gear shining wet across the yard. At least the promise of spring is in the wind, though still far off. I glance at our liturgical calendar and note the number of weeks left until Great Lent, the preparatory time before the greatest annual celebration of our faith, Pascha.
I have read that in many countries, Russia and Eastern Europe most notably, this 40-day period of abstinence from consuming animal products (among other things) was a practical means of getting through the last phase of winter, stretching a family’s supply of farmed goods until the weather relented enough to begin spring planting. The practice is threefold, however: we conserve what we have, but in order that we can give to those in need. Also: we pray and meditate as we work on increasing virtue and diminishing vice, and so draw nearer to Christ in preparation to celebrate His resurrection.

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Another Spring, without so much snow!

As a newly converted Orthodox Christian, the Lenten Fast seemed a horrible ordeal to be undergone. Admittedly, I was spared the first three years of participation because I was either pregnant or breastfeeding. But the first year I was eligible to participate, I was floored by the intensity of the experience. It also turned out my health was not going to allow me to eat vegan for such a duration without serious consequences. As a result, my Spiritual Director urged me to focus on the spiritual and giving aspects of the time, which were almost harder. Giving is a joy to me, and I can almost never do as much as I would like, but increased prayer and weeding out some of my worse habits proved incredibly challenging. And, after a time, I realized it is supposed to be exactly that. The challenge of leaving one’s comfort zone is immensely stretching. Being accountable to a priest/Spiritual Director ensures accountability. And I have noticed that, especially at first, the spiritual undercurrents in one’s life always make it harder, for me at least. I am always hit hardest when and where I am weakest, and usually just when I think I am starting to do well. I am beginning to find it almost worth a laugh. And I am beginning to settle into the rhythm of the Fasting seasons (they average one per season, of differing duration–Great Lent is the longest). So now, I find myself anticipating the change in the seasons, the change in spiritual rhythms, the outward practices in aid of the inner progress.
The first week of Great Lent is Clean Week, an excellent precursor to good old Spring Cleaning, but with the intent of clearing out all our junk, all we don’t need, and all our grime, personal and physical. In addition, things that we don’t need may be useful to others, and again we are encouraged to give/donate instead of hoard/clutter (a greater and harder act for some of us). We are also encouraged not to spend unnecessarily during Great Lent, to be less materialistic, and again, help those in need with either our time, talent, or resources (either money or “stuff”).
This year, something in me started Clean Week over a month early (perhaps because I usually start when everyone else does, and am still cleaning when Pascha rolls around), and interestingly, something in me followed step by taking a long, quiet look inward. Time to uproot the unnecessary and harmful, time to prepare the soil for the season of planting and growth. Time for the new season, the new “year” in the natural sense of things, and a time where we celebrate Life anew. Glory to God!
Though, knowing me and my house, I may still be cleaning when Pascha rolls around…

Zen and Hot Water

I’ve had a long courtship with the Zen mindset, and it’s often seemed rather hopeless. As a teen I was enamored of Eastern Philosophy, and journeyed through Taoism to several different Zen readers, most of which were deeply cryptic. I flattered myself that I was esoteric enough to grasp the concepts, but the woeful fact was, I was far too volatile, busy-minded, and strong-willed to easily school myself to an even-keeled, “no mind” modality.
My struggled with meditation are almost laughable in retrospect. Sitting cross-legged on my bedroom floor, fiercely trying to keep my mind free of thought for one brief, peaceful moment. Ah well.
It’s been a long meandering path since then. I had a somewhat rocky experience with New Age religion, and subsequently rejected all but the most basic and scholarly philosophic principles. Unwilling to simply craft my own mishmash of beliefs, I felt spiritually homeless…Until…
Suffice to say, I found an old path cleared of its overgrowth enough to be brought into view. and thankfully, the glimmer of Truth echoed in other beliefs are not taboo. Sigh of relief. Zen mindset is actually encouraged, within certain parameters. Further sigh of gratitude.

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That peaceful mindset still eludes me, eight years later, except for a brief ray of clarity here and there. In some ways, childrearing has helped and in some it hasn’t. The exhaustion of motherhood and poor health has eroded much of my volatility, my pendulum-swings of character. I’ve gotten over a lot of my illusions–or delusions–about myself. I’ve become less egocentric. But I still have a helluva temper, and stubborn need to have things my own way. Ah, well. I’m finally learning to recognize and accept my flaws, too. Then work on them. I used to have trouble accepting anything I didn’t like.

Wait, I still do…
Ah, but the moment in question: It had to do with tea, as I recall. medicinal or otherwise is uncertain, but likely medicinal. We have a carafe-style gadget that heats water, and dispenses it at the touch of one button too many. Lately, probably due to mineral deposits, it runs more slowly than it used to. So I stood, watching it drizzle out each brief series of drops, my head tilted rather vacantly to one side. Some rather peaceful Medieval-style music was playing, and the sound of my children was a duller roar than usual.
The amazing thing was that I wasn’t impatient. I wasn’t in a hurry to check on the kids and forestall any apocalypse they might have brewing, or to hurry up the water so I could do this or clean that or get something else ready for tomorrow, or write myself a note so that I didn’t forget something of overarching importance. Not at all. Spurt. Drip. Whirr. I was as peaceful and content as could be. I watched the light roll over each droplet of water. I studied the rhythm of the falling spurts, which was really no rhythm at all. I felt I had nothing better to do, nowhere better to be, only this task to compete. Without worry. Without anxiety. Without over-thinking. It was wonderful.
And now I wonder if I was simply listless because i was getting sick…

Long-lost Art

Finally, after years of deprivation, I’ve managed to scavenge some drawing chalk from a long-forgotten stash. These were actually my “substandard” materials at one point. I used to use them for sidewalk drawings. I never thought they were good enough for my “real” work. Ah, how things have changed!
I know, “deprivation” sounds like hyperbole to someone who doesn’t get what art is: a deep, gnawing hunger in the soul. Not to be sacrilegious, but my need for art isn’t that much different than my need for my faith. Though my faith affects many more areas of my life than it once did, so I suppose in that way it has taken a step ahead of my art.
It’s also like my need for my other driving passion: ballet, even though my dancing ability has long been lost and since crumbled away on the dusty road of my past. And for years I’ve denied myself painting, drawing, even sketching, because there was no room, no time, no money for materials. Once every few years it would get to be too much, I’d scrape together a few dollars for some low-grade acrylics or drawing pencils, and knock out a few hasty paintings or fill the last few pages in an old sketchbook. Nothing I was ever really happy with. I even had a mediocre showing or two when my daughter was a baby. I can’t imagine sustaining that sleep-deprivation now, not after prolonged illness. But back then, it was easier to keep going than to stop and rest and have to get up again. So I would plow through, settle for less than my best, and defray the cost…until now.
Now, I’ve managed not more than a few scribbles in the past year. I thought the passion was dead, and maybe it still is, but the hunger is still there. Starvation. It’s worse than living without love. And, the more miserable my physical health makes me, the more I crave anything that nurtures my spirit and keeps me a little further from despair. My faith community is now a long, slow, hazardous, winter drive away, and with love and companionship, even friendship in scarce supply due to schedules and priorities, what’s left? After I’ve given all I have and more to motherhood every day, what’s left to replenish me?
Another pursuit I’ve been trying to resurrect is recreational reading: so far I can only focus on well-written fantasy. Everything else becomes a soon-forgotten blur. In the latter of two well written fantasy books I’ve managed, I found a few lines incisive:

“Beauty is no end in itself, but if it makes our lives less miserable so that we might be more kind–well, then, let’s have beauty, painted on our porcelain, hanging on our walls, ringing through our stories. We are a sorry tribe of beasts. We need all the help we can get.” (Confessions of an Ugly Stepsister by Gregory Maguire. Regan Books, an imprint of Harper Collins, copyright 1999. p 367)–forgive me if my citation skills aren’t what they used to be–rusty.

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I finally worked the chalk over a large sheet of newsprint (I always hated working on brittle newsprint! but it’s cheap & disposable, lessening the artist’s reluctance and attachment), remembering what my art teachers used to say about getting the process going. That method consists of circles, mostly: large, shaded circled. I used to be so frustrated by them, but now they were all I had the confidence to start with.
The result was electrifying. Intoxicating. I felt like I’d finally been let out of a small, dark space I didn’t know I was in. What I sketched was crap–a few shading exercises and a quick–very rough–sketch of a woman’s head, soon to be joined by some contributions from my children. But it was something. A drink to a withered soul, a few crumbs to the starving. A passion I can maybe rekindle if it’s not too dead. And if my hands and shoulders will take the repetitive motion.
Even one rough sketch now and then might keep my spirit from drying up and blowing away. And my trees: my lonely, dead trees that almost no one likes or understands. I miss my trees.

A Winter Resolution

Thanksgiving is over, and though I endeavor to make a thankful attitude,”Perpetual” as Emerson put it, I am relieved to have checked off another holiday.
Last year I celebrated Thanksgiving from the couch, with my leg elevated, and throbbing from the previous week’s surgery. This year, I am grateful to be walking after a recovery more difficult than I would have imagined.
While I’m determined to get back on my feet in more ways than one, I have decided to take things slow this year. Minimal organization. No Christmas arts& crafts fairs. No extra commitments of any kind. Since I haven’t had an income for the past year, all of our Christmas gifts will be homemade, and I hope no feelings will be hurt if I don’t get to everyone.
I plan to make my health a taboo subject, at least until mid-January-ish. I do not want to hear the words “Ehlers-Danlos,” or “cancer” come out of my mouth unless I am speaking to someone in scrubs. I will not let my illness be a set of ghostly chains dragging me down through the season. I want to celebrate. I want to teach my children Christmas songs and traditions. Not just our own, but the richness of our panoply of friends and families, a wide spectrum of joy.0510151939
I want to eat and celebrate, and I plan to care for myself, but I do not want to let my illness eclipse my life. For the next month-and-a-half, I’ll try to say if I’m feeling less than great, but beyond that, I’d rather not share. I appreciate concern and thoughtfulness, but it’s a season of joy, and I want to keep the focus on joy. I don’t view this as denial, because although I am ill, I think excessive focus on it due to constant medical follow-ups and well-intentioned conversations are causing me to remain in a “sick person” mindset. I don’t believe the constant reminders of my illness are healthy, and I find they detract from my enjoyment of life. I personally believe the body/mind/spirit is a potent connection between attributes of the whole person, and I think that where the mind dwells the body may well follow. The irony of this statement in view of my “dark” style and tastes is not lost on me, but most of us are not so clear-cut or monochromatic enough to be that simple. 🙂
That said, blessings to all in the coming season of Light!

Ehlers-Danlos: What it Means

10343534_10152041629146090_7165326251678691062_nI was recently persuaded to blog my experiences with Ehlers-Danlos Syndrome Type III, with the idea that it may be helpful to others.It seems to be it could be a downer for a personal blog, but in the hope it may be helpful, I’m giving it a try.

I’m used to a blank stare when I tell tell someone I have Ehler-Danlos Syndrome (EDS), even in a doctor’s office. When I try to save time by using “EDS” I end up having to restate, leaving me with a sense that many of my health practitioners don’t have a clue what I’m talking about, let alone going through. They don’t understand that fatigue and depression are part of the condition, that cross-system symptoms can all be due to an EDS flare-up, and that, yes, it keeps me from functioning.
My Primary doctors are actually the best at empathizing, even when they don’t understand. I often can’t believe the luck I have in finding this husband-wife team with an open-mindedness unusual in the medical profession. And they have quite honestly told me they don’t know much about EDS. They don’t try to bluff their way through an appointment like some of my more specialized doctors do.
Family, friends, and strangers can seldom be expected to understand why I can go for a hike one day and then be flat on my back for a week. Or can handle the hike, but a family BBQ will put me out of commission for a month because going up and down patio steps flared up my hip joints and now they won’t support me. Or that I can manage to injure myself swimming, usually by popping out a knee, ankle, or shoulder.
I educated myself about EDS through a consultation with a genetic specialist, and subsequent googling. Aside from that, I’ve unknowingly lived with it for a lifetime, with symptoms increasing in severity in my 20s and 30s. Although the diagnosis seemed looming–a condition that would never go away and may very well worsen with age–it was a relief to know that the crazy things that always happened to my body were explainable.
My two children have “rubber joints” that make me wince, just as my own used to worry my mom. I doubt she had ever heard of EDS, though I think she may have had it as well, but her intuition and experience with her own joints led her to warn me to be careful with mine. Thus I was deprived of ballet lessons as a child, and likewise kept out of gymnastics class. I begrudgingly saw the logic when I would twist, flop, and sprain several times a year, but unfortunately I also have a stubborn streak, and ballet has a seldom-acknowledged allure…
That’s where my story really begins.