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.

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.

 

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.

Afterthoughts

Lately when I write, I think I’ve said everything I have to say…Then all I have to do is hit “publish,” “send,” or simply start doing something away from my computer, and inspiration strikes again, or I realize I forgot a vital point, or that I quite simply flubbed a cover letter.
As a less-than-mobile person for the last five months, this can get a bit exhausting, especially if it’s something I want to write before I forget.
I’m supposed to be working at putting full weight on my weak leg with every step, but when I’m in a hurry, I resort to the tested and reliable method of the crutch swing: click, swing, click swing, holding up the leg that hold me back.

I feel a little like a three-legged dog sometimes: a bit bedraggled, a bit slow, not sure I’m really wanted, overcompensating to do what needs to be done.

But as long as I can do what needs to be done. Then again, rehabilitating this leg also needs to be done.

But there are so many afterthoughts..

At Night

It’s a stormy night. The wind is howling outside, and a windchime tinkles softly, a bit brokenly. My children have been asleep for hours now, but I cannot sleep. It’s after 5:30 a.m., and I still feel agitated. I have paperwork to do, healing to do…I want to avoid taking any more medication tonight, but my slow-healing knee is aching sharply. A pair of crutches leans against the wall by my bed. Pain twinges through my leg. Weather changes have always affected that old injury, and it would seem that surgery hasn’t changed that. One more thing the doctor can’t explain.
I wonder if it will be a rainy day tomorrow. I wonder what my children will be interested in doing. They’ve been asking to go to the library and the park, but it is almost impossible for me to get out of the house on my crutches. I hate to ask my overworked husband if he would like to take them. He is already so tired.

I try not to resent my situation. Resentment won’t make me heal any faster, it won’t help my husband get any more rest. I hate that he has to take all the extra work on. There is so little I can do right now, and so much that I want to do….

I finally become sleepy, but the rush I feel as I unintentionally pull myself out of sleep is an exhilarating one. A draft in the house intensifies the chill I feel. The medication I take makes me shiver easily.
The windchime sounds brokenly again, beautifully broken. I hear a tree branch crackle in the wind, and hope that doesn’t mean a power outage is coming.
I reach for a sweatshirt from a pile of clean laundry my husband brought me. Now, like a quiet butler, he is nowhere to be seen. I wish he would stay in our room with me. He’s afraid of bumping me in the night–hurting me. I am tired of being fragile. It’s been four months since I’ve picked up one of my children without being seated. I haven’t gone on a walk for more than six months.
I have to recover, we have to get our lives back.
I hear a branch fall outside and the wind picks up even more. I want to check on my children and make sure they’re covered up warmly. I’m so tired that moving at all is an effort. A glance at the crutches exhausts me. I remind myself that the kids are old enough to pull their blankets back on. I still feel remiss.
The windchime sings in the gusts that sweep our porch now.
I wonder what tomorrow will be like.

Writing to Music

When I really delved back into writing like I meant it, I happened to come across some music I liked–way back when. It’s a way back when that feels like yesterday, anyway, so I assume that means I either haven’t matured or I’ve been in some kind of time bubble wondering why the world has changed and why people around me have gotten older and started having kids. Then there are these two adorable but feisty little goblins who keep flinging themselves on me and calling me Mama. They’re kinda cute, so I accept it. I feed them, and play silly games with them and cuddle them and stuff. And then there’s this amazing guy they call Dad. I think I’ll keep him too. He’s kinda nice to have around–indispensable, in fact.

So, here I am in my time bubble. The ’80s going retro has been terribly confusing. But at least the music I loved in college is still as un-retro as ever. Garmarna’s remix of Hildegard Von Bingen’s ethereal chants, miscellaneous classical pieces I love because they are still and uplifting at the same time, and let’s face it, when I was a snob I listened to classical music simply because it was classical. Nostalgia is a big factor, lifting me out of present-day frustrations and stresses to reminisce about I time I no longer remember as difficult or stressful, though it was more so.

The music is timeless, anyway, and soothing. A few tracks stand out, if I can remember composer’s names (another trait that went by the wayside with snobbery). Delibes’ Song to the Moon,  Alhambra by somebody else, Lascia Chi’o Piangia  by someone I certainly should remember, but don’t. I wouldn’t remember Delibes if my students hadn’t done a simplified dance from Coppelia last year. If I mutilate spelling, please comment and correct me. None deserve it better than I, believe me.

Well, point being, the music helps me write. I wrote better in college–I think. I’ve been impressed by what I’ve found laying around. Sometimes things I can’t believe I wrote. Some I’m pissed because I can’t remember how it was supposed to end and it was never finished.

I think I’ve finally, after far too many years, gotten to the point I am done messing around. I’m writing almost every day now, or rather every night. Short on sleep, but at least I feel like I’m accomplishing something for this family that seems to be mine…I’m entering my fourth month of Invalidship, and I don’t like it. So while I bust my britches to get walking again, I might as well be productive while applying ice packs.

One of these days, a blog will accept my writing. One of these days, I will finish one of many stories and find some way to publish it–and I think blogging will at least open up that thought realm for me. I have to watch my idealism, I may find myself trying to puff thought bubbles into the ethers, hoping a book will materialize.

Writers, honestly….