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.

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.

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…


goofy-santa-bron-15For years, my childhood stuck with me, clearly–or more so–than many more recent events. I used to play my favorite memories in my head, over and over, as if afraid of losing them.
After the loss of my parents in early adulthood, my theory began to prove unreliable. At first it was my short-term memory, then, as time went on, my mid-to-long term memories. Neurological anomalies have been dismissed as inconclusive, and in general my “brain fog” is attributed to medication or depression. I wonder…
My children’s childhood begins to blur as we progress from day to day, and I startle with grief at times, how much they have grown. How fast. I mourn the moments I’ve lost. Their little quips, their expressions, their milestones. All I have is a general sense of them, everything else is lost in the day to day routine.
Feeling this gnaw at me, I tried extra hard to build better memories for them this Christmas: stories, decorations, lights…and was rewarded on occasion with, “this is the best Christmas ever!” and sometimes nettled by, “Christmas isn’t coming because I didn’t get [a certain present]”
My mind has been wandering backwards lately, trying to find moments in childhood to help me relate. I am appalled how many of my carefully preserved memories are now shrouded in fog, lost to the general sense of things. But I do remember a Christmas or two.
The funny thing is, we didn’t celebrate Christmas. Or Easter. Or Birthdays. The reasons, through my eyes of this moment, are as complex as they are sad. But Christmas and its trappings were exiled from our house. For decoration, we had no more than the deep snow of the northern winter piling up outside our windows, the frost on the panes, the sharp stars glinting overhead. My grandmother, and sometimes one of my aunts, would always send a box of treats. Sometimes they sent presents. It seemed that family had the power to veto our religion’s prohibitions. The boxes of nuts in their shells were no less delightful for that, nor were the mandarin oranges in a crate, each wrapped in a tissue-thin green paper that made them seem somehow extraordinary.
Then there were chocolates. THAT was extraordinary. I remember the game of guessing what was in each one by its shape and the vague pictures on the inside of the box. I remember a doll one year. A snow globe another year, which was barely allowed to stay because of the garish figurine of Santa Claus it held. That snow globe is a story in itself.
So my early memories of Christmas, though tinged with slight regret at the lack of carols, lights, trees, and annual celebrations, still have the scintillating moments of oranges and of nuts being cracked out of their shells by the warmth of the wood stove. Discovering almonds and hazelnuts and walnuts. Hearing the satisfying CRACK of each one being released from the shell, and learning the trick of cracking without crushing.
And perhaps enjoyed something by association: The Nutcracker story or the ballet. I remember that many times: a highlight of the winter season.
My sisters remember my fervent desire to be a ballerina, of which I still have not even a vague recollection, but I do recall being caught up in the magic of the ballet. It was one of the few wonders of the magical that entered my childhood.
When I grew up, I lamented the dearth of fairies in my early years, the diminished wonder that I dimly recall searching for with longing. When I had my own children, I determined to give them that sense of wonder that I missed.
I fall so short with my children. I suppose it’s typical of motherhood that reality falls short of expectation. I wanted to raise them in a home filled with enchantment, feeding them tales to stir their imagination and ignite their little spirits with wonder. I planned to do so much art for them, write so many stories, make so many toys…
I try. But part of me is pragmatic enough to see the cost of too much fanstasy. And yet…those imaginings can so enchant the memories, it sees a shame to let them pass by.
This year, they received gifts from house elves and snow fairies. We watched the Nutcracker, the Grinch, and read those and so many other old tales. We have the Snow Queen, we have folk tales, we have an illuminated Nativity and a fairy village, and as much Light as we can manage. And oranges…
And I hope it’s enough.

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.

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.

Kasha (Buckwheat Groats) Cooked in Bone Broth

I’ve recently discovered a bizarre love of Buckwheat, a love completely unique in my family, it would seem. Other than sneaking ground kasha into my kids’ breakfast oatmeal, there’s no way to coax it past their grimacing little mouths.

Yet I love its nutty flavor, unusual texture, and high nutrient value (easily googled). It’s filling, satisfying, and almost as good as a fruit or vegetable, especially if it’s sprouted. Here’s a list of ways to use buckwheat, easiest first. 🙂

  • Simple Kasha: Roasted or raw buckwheat groats can be purchased through health food and bulk food stores. 1 cup of groats to 2 cups of water or broth makes about 3 cups of the finished dish: something between a pilaf and a porridge. Season with salt and pepper and add butter or coconut oil if desired.
  • Sprouted Kasha: Raw buckwheat grouts sprout quicker than most seeds I’ve tried: 1/4″ sprouts growing in as little as 2 days. To start, the groats need to be soaked overnight, then drained, rinsed thoroughly, and drained again. A 1/2 gallon sprouting jar with a stainless steel mesh lid works great! They need to be rinsed and re-drained 3-4 times a day, and it helps to turn the jar occasionally to encourage drainage.
  • Once sprouted, the groats need to be dried at a low temperature to preserve the enzymes created by germination. The best drying method I’ve found is spreading the sprouted buckwheat on cookie sheet lined with parchment paper, and placing in a conventional oven set to 200°. When dry to the touch, they’re done.
  • Cream of Buckwheat: Scornfully referred to as “Baby Cereal” by my 7-year-old, this simple porridge is actually quite tasty (and I theorize, if the little buggers were started on it young enough, they’d never know the difference). I’m happy to say my 5-year-old is more accepting.
    Lightly chop sprouted dried buckwheat in a blender or food processor. Using 1/4 cup chopped buckwheat to 1/2 cup water, boil water in a small saucepan. Add chopped buckwheat and turn off heat. Stir constantly until the cereal thickens and water is absorbed. Sweeten with maple syrup or honey and enjoy.
  • Bone Broth Kasha: My favorite, because of the health benefits of bone broth, this dish is prepared just like the Simple Kasha recipe above. For added flavor, saute chopped onions in grapeseed or coconut oil, add minced garlic, and, when fragrant, add bone broth and bring to boil. Skim off any foam that rises, add sprouted buckwheat, reduce heat to low. When thick and soft, toss with a fork, adding butter or coconut oil, and herbs and spices if desired.
  • A more traditional recipe calls for toasting the kasha in the bottom of a heavy pan or skillet, and includes a beaten egg scrambled into the buckwheat and cooked. In a separate pan, broth is brought to a boil, butter and seasonings added, and the buckwheat-egg mixture is added to this. It’s then cooked on low heat, covered, for up to 30 minutes.

Questions? Feedback? Suggestions for user-friendliness? Please post a comment below. 🙂

Gluten-Free Spiced Carrot Loaf

042Although baking is not one of my favorite activities, I’ve gotten reasonably good at it out of necessity. And fortunately, my mom’s recipes convert well to gluten-free. I will admit that there’s a sense of nostalgia in making things I remember from childhood, tasting them again, making them for my children, and continuing a family tradition of sorts. It brings back especially good memories in this season of family time and traditions.
I’ve tried two versions, one simply gluten-free, the other without eggs, sugar, and nuts. It’s a great low-sugar treat any time of the year, and a great way to use up the carrot pulp from a juicer…if you do that kind of thing…. : ‘
I’ve found that pumpkin pie spice works well in place of the other spices, if needed. Enjoy!

Gluten-Free Carrot Loaf

Beat together 1/2 cup oil, 2 eggs, 1 cup unrefined sugar or 1/2 cup honey

stir in 1 cup grated carrots or carrot pulp from juicer

mix together in separate bowl:
1 3/4 cup gluten-free baking mix
2 tsp baking powder (I use homemade or aluminum & corn-free)
1/2 tsp soda
1 tsp cinnamon
1/4 tsp cloves
1/4 tsp ginger
1/2 cup chopped nuts (optional)

Pour mixed dry ingredients into carrot mixture–stir only to moisten.
Pour into 9x5x3 bread pan and bake 40 min or until toothpick comes out clean. let sit 10 min before removing to rack.
Store in plastic bag
Even more Allergy-friendly Version:

In glass or metal mixing boil, combine 2 Tbsp ground flax seed with 1/4 cup hot water and let sit for a few minutes.

Beat together 1 cup apple sauce, 1/2 tsp stevia or 1/4-1/2 cup honey. Add to flax meal mixture and mix

Mix together in separate bowl:
1 3/4 cup gluten-free baking mix
2 tsp baking powder (I use homemade or aluminum & corn-free)
1/2 tsp soda
1 tsp cinnamon
1/4 tsp cloves
1/4 tsp ginger
1/2 cup chopped nuts (optional)

1/2 cup organic raisins

Pour mixed dry ingredients into carrot mixture–stir only to moisten.
Pour into 9x5x3 bread pan and bake 1 hour or until toothpick comes out clean. Will be much heavier and more gooey than with eggs.

Let sit 10 min before removing to rack.
Store in plastic bag

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!

Burned Again

Thoughts on July 20th–A Look Back

I swore a bit after burning my hand on the toaster oven. No microwave for the children & me-especially since the cancer diagnosis. I am back on the quest for the whole-food, nutrient dense diet. But I do swear more than I used to.


“Hope” Mixed Media, By Marlane Quade Cook

The burn didn’t bother me after the initial shock of pain, but I did remind myself they always hurt worse later. Marching alongside this thought was the nagging accompaniment that I’ve been such a wimp lately, going back on my pain meds for knee strains and slight “twinges” in my abdomen–post-surgical souvenirs I make too much of. To my surprise, the burn barely registered on my pain scale, even though it began to ooze and a small piece of skin had come loose. When I accidentally stuck it in hot water I was reminded of its presence, yet it was nothing compared to the constant throb of my ribs, back, pelvis, the yanking tug-snap in my knee, and anything else that has been recently stressed. Maybe I’m not such a wimp after all, I reflected, dabbing aloe vera onto my seared skin. Maybe my doctors just don’t have a clue what I mean when I say I’m in pain.
It hasn’t been much more than a month since I was in the E.R., screaming in agony as I tried to manage my post-op pain. That was my ten. Anything less is usually accompanied by a shrug and a ballpark, “oh, five or six…” Only a few days ago stabbing pains in my side kept me in bed all weekend and then sent my to one of my OB-GYN’s on-duty colleagues, who belittled and dismissed me to such an extent that I was too stunned to argue the matter or stand up for my rights as a patient when he foisted procedures on me I would normally have refused, especially from a male practitioner. Live and learn. Chalk up another bad experience, add it to the life experience, and return to the internal certainty that “this is just me” and “I am weird.”
In fact, for someone with Ehlers-Danlos Syndrome as well as Fibromialgia and God Knows What Else, this kind of seemingly random pain is not uncommon. After my first child, I was to experience painful pelvic subluxations for over a month. After each birth I hemorrhaged. And took a year to recover.

I simply don’t heal right. Nearly every cut or burn leaves a scar, Nearly every bump leaves a bruise. I need phenomenal amounts of protein–animal protein, ideally–to function without experiencing weakness and lightheadedness, and to forestall injury. I was attempting a vegetarian, low-fat diet when I experienced my first catastrophic injury: a torn ACL that has been my achilles heel for 16 years of my life. When I finally lost the use of my knee last fall and had to have the ACL replaced, it baffled my orthopedic surgeon that I simply could not get back on my leg. I could not strengthen it to the point of weightbearing, even though I started Physical Therapy (PT) a week after the surgery and did daily exercises at home. At times, my other joints would flare up and I would be unable to assist my weak leg enough even to leave the house, so there were many times I had to miss PT, and more than once I had to use a wheelchair because of joint instability in my knees and hips. The therapists could not all understand my good day/bad day ratio, and pushed too hard during flare-ups. The result: a worsening of flare-ups. This cycle continued until I began to call in sick on my bad days and work myself at home within my limitations. My dancer’s mind rebelled at these cowardices, but they were effective in combination with regular PT (and the addition of advanced rehab), and I slowly regained my strength. A mere eight months later I was able to begin walking unassisted, though recurring bad days always felt like a setback.

The hardest thing about living with Ehlers-Danlos Type III could be the persistent “weakness” in the joints and the difficulty in building and maintaining muscle, and therefore, overall fitness. It could be the loss of my passion: classical ballet. I am now to the point that even sitting and instructing a class for an hour or two is so far beyond me. Even leaving the house on a bad day is beyond me, unless it’s an absolute emergency. Yet I don’t think those are the worst. The worst would have to be when I see my six-year-old son is simply too worn out to play, when I see his or his sisters’ knees extending beyond their normal range of motion as mine did for so many years. It’s seeing bruises on my four-year-old daughter’s baby skin because she bumped her knee or fell or because another child was playing too roughly with her. It’s seeing the sensitivity of my children’s skin, the scars they already have, my daughter’s love of dance that may be as unfulfilled as my own, my son’s extreme reactions to pain. Genetically there is only a 50% chance that my children have inherited the gene for EDS, but the signs are discouraging. They are too young for evaluation, which prolongs the uncertainty and worry for me as a parent. Nearly as bad is the fatigue and joint instability that keeps me from being there for them as I would like to. Gone are our excursions to the park or going for walks, play days with friends are limited to those families who understand our situation, which are few.

Though I have not lost hope, the past year has been discouraging in the extreme. It has changed the way I view myself and my abilities. As someone who valued few things more than strength and health, I have finally admitted to myself that I am not physically strong, and may never be. And yet, to put it in words feels self-indulgent. Whiny.

I can usually deal with the pain. As my individual pain scale may indicate, I’m used to it. I don’t know if I can deal with the increasing need for surgeries, and now I have the unrelated diagnosis of cancer to add to the mix. Yet I am one of the most stubborn people I know, and I am reasonably sure that in spite of the temptation to give up I will almost certainly persevere to the end. Because I have a family. I have children. And my children need to see me live with as much dignity and courage as I can manage.

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.


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..