I 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.
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.
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!
I 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..
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.